Arthritis Forum
Home.

News.

Personal Stories. Links. Message Board.  
Arthritis Forum  
Add your comments to this topic Start a new topic
Date: 05.03.2014
From: sleepydanielle

Subject: newly diagnosed, really upset and confused

Hello, im 31 and today i was told i have seronegative rheumatoud arthritis. About a year ago it all started, i had a swollen index finger and its progressed from there really. I was referred to a rheumatologist but ive only just had a diagnosis.
At first i was told i was vitamin d deficient (even though i had no blood test). Then i was put on anti inflammatories, tried 2 different ones but nothing helped. I had pain in my feet around the ball area, couldnt make a fist with my fingers because they were just too tight. Knees and ankles were periodically painful and sometimes couldnt get up and down the stairs. Collar bone hurt. Wrists and elbows were painful and weak and top if arm muscle would be so bad i could barely lift my arm up, it would hurt and weigh a tonne.
Anyway i was then diagnosed with fibromyalgia and given amitriptyline which didnt help. Finally had vit d blood test which said i wasnt deficient at all. Bloods have all come back normal apart from ANA which was borderline. My normal rheumy didnt tell me this for some reason and i only found out from a different one. New rheumy who i saw in November said i didnt have fibromyalgia at all and that i had type of inflammatory arthritis.
Was given a course of steroids (prednisolone) which have helpedso much. I felt normal for the first time in months. My pains all gradually went and i could walk normally, make a fist etc.
Anyway im off the steroids now and have been for almost 3 weeks. I still feel ok altho my ankle flared up the other day and was painful but apart from that im fine.
Today i was told my actual diagnosis is seronegative RA and ive been given DMARD sulfasalazine. I really dont want to take them!Im scared of the awful side effects and it feels wrong to take these drugs when i feel fine. I have slight redness on my little finger joints but thats it. Im bot sure if im even convinced ivegot RA. I dont have redness in any if my other pain areas and i thought inflammation means red joints and isnt that what RA is? I also had xrays done 6 weeks ago on hands, knees and chest but rheumy today couldnt get results up so i have to call gp instead. Idont understand the point of the xrays tho if ive been given dmards without them even knowing the results??
I dont want to take these drugs if its not neccessary. Im also going on holiday in 4 weeks time, only a little caravan trip but i never get to go away and if i start taking them tomorrow then in 4weeks i will be at the peak of my highest dose and i dont want to feel ill the whole time from the side effects!
Im so confused about all of this. Does anyone know if steroids can actually permanently help with arthritis? Or am i clutching at straws? I just feel so much better and almost painfree even after 3 weeks of stopping them. Im wondering if theyve fixed me maybe.
Im sorry for the long post i just feel gutted after today and so alone and upset and angry and frustrated. Ive spent so many months barely even able to walk my daughter to school and now when i feel better and more mobile i get told i have RA. I want to have another baby and not be diseased and on toxic medication fir the rest of my life :-(
Thank you for listening.
reply | back to forum

Date: 05.03.2014
From: bsk

Subject: Re: newly diagnosed, really upset and confused

Hi danielle, so sorry to hear you've had to find us and that you've been diagnosed with seronegative RA. I have the same condition and have been through quite a lot of the same stuff you are going through.

It is very difficult to diagnose, which is why it takes so long. I've just started sulphasalazine too, today in fact. I had a couple of weeks on it last year and didn't feel any side effects but they took me off it for reasons unrelated to that. I will be interested to hear how you get on with it.

It is extremely difficult to come to terms with a diagnosis like this. I've had it for nearly five years but sometimes I don't really believe it either. So please don't be hard on yourself. I'm sure you can talk to your consultant about having another baby and also the outlook for the disease. Although we all have a moan on here about our drugs from time to time, lots of people do very well on them. Some people go on certain diets to help control the disease. That never worked for me but we are all different.

Steroids don't permanently help with arthritis. I was on them for over 4 years and have recently come off and my disease activity has gone up. They protect your joints somewhat but you need something more.

Have you had a look at Arthritis Research UK website? There is tons of info on there which may help you a bit. But of course, we are all here to support you too.
reply | back to forum

Date: 05.03.2014
From: rhona

Subject: Re: newly diagnosed, really upset and confused

Hi Danielle, I am sorry that they have told you that you have RA especially at your age. They do say that seronegative RA is usually less severe. It is such a complex disease and it is hard to say how each person will be with it, some don't get it too bad at all and others do get it quite bad. The drugs are supposed to slow down any joint damage. I have had RA seropositive for around 14 years and possibly a lot longer. Sulphasalazine was the first drug that I was given and I am still on it. They also give it to people that have crohn's disease. You will be given regular blood tests and if there was any side effects then they would stop it before any real harm was done. I remember feeling exactly the same about starting it. I would say that steroids are very effective with inflammation and pain but it is not a good idea to take them for any length of time, they have too many side effects and in my opinion you would be safer with the sulphasalazine.

It might be a good idea to ask to speak to your rheumatology nurse and explain your fears and the fact that you may want another baby. Some people try diet to help their arthritis and it might be possible that would help you but only you can decide what to do. I really hope you enjoy your holiday and try not too stress too much about it as that actually makes the arthritis worse. Take care. x
reply | back to forum

Date: 05.03.2014
From: sleepydanielle

Subject: Re: newly diagnosed, really upset and confused

Thank you so much for your replies. Ive never been on an arthritis forum before. Its nice to hear that im not alone with these feelings although of course i would never wish this on anyone.
I suppose its just wishful thinking with the steroids. I suppose naively im thinking theres nothing wrong with me as i feel ok.
With regards to the sulfasalazine i was also told that they worsenyour immune system. Does this mean im going to constantly be ill? I asked rheumy this but was told sulfasalazine was quite mild (not what ive read!)
I then mentioned i take vitamin c and zinc so my theory is this would strengthen my immunity but she said the sulfasalzine would then be fighting harder to work as these dmards work by dampening the immune system so me trying to boost it wont help. Bit confused as does that mean eating fruit and veg (i.e vitsmins!) will make the sulfasalzine less effective?
Thank you for your kind words if support.
reply | back to forum

Date: 05.03.2014
From: Bsk

Subject: Re: newly diagnosed, really upset and confused

It is a milder drug. I've just had a discussion with my consultant about it. You probably won't be constantly ill but need to take care around people with infections. You will be monitored, as Rhona says. Do read the patient leaflet and get in touch with your doctor if you have any of the side effects mentioned.

A normal diet won't make the drug less effective but you don't want to take supplements as it they will.
reply | back to forum

Date: 05.03.2014
From: rhona

Subject: Re: newly diagnosed, really upset and confused

Hi Danielle, some things I have read say that RA is caused when the immune system is over active and starts to attack the joints and the medication does lower our immunity a bit but if it is already over active then it may not cause any infections (depending on what drugs we take) of course. I can honestly say I still don't get many infections and never had when I was on sulphasalazine alone. A healthy diet of fruit and veg etc is recommended for RA. You could try some fish oil capsules as fish is one of the foods that is supposed to be good for RA.
reply | back to forum

Date: 05.03.2014
From: Colin W

Subject: Re: newly diagnosed, really upset and confused

hi danielle , welcome to the forum , I have had RA since 1996 & been on sulfasalazine since then along with other drugs , most of us dont get any side effects from this drug & if you do they have others you can try

the point of the drug it to stop long term joint damage & after nearly 20 years of RA my fingers are pretty straight compared to before they used these drugs & pretty much everyone with RA thier hands would be pointing to opposite directions so you need to protect your joints

alot of us take more than one of the DMARD so dont worry & give it a try
reply | back to forum

Date: 06.03.2014
From: sleepydanielle

Subject: Re: newly diagnosed, really upset and confused

Ahh thanks so much for everyones replies, very kind. I still feel fine and i dont know why. Would the steroids of worn off by now? I took them for 4 weeks and finished them about 3 weeks ago.
I suppose i should start taking the dmards. :-\
When you start taking dmards do you have to be on them forever? Has anyone found that they have been cured or gone intoremission? Just wondering if there is any hope :-( Xx
reply | back to forum

Date: 06.03.2014
From: Toni

Subject: Re: newly diagnosed, really upset and confused

Hi.
I feel the same as you. have been prescribed methotrexate to start but have not taken it yet as im not in agony just fatigue and aches. feet being worst effected.
Im only 32 and with two pre schoolers want to deny it too.
Im awaiting a second opinion.
I had a steroid injection by my Rheumatologist for back pain and as that improved my other symptoms for a few days she felt that was all the proof she needed to start me on the hard stuff.
Its a difficult diagnosis to come to terms with and im still hoping its something else xx
reply | back to forum

Date: 06.03.2014
From: bsk

Subject: Re: newly diagnosed, really upset and confused

You should be aware that you can get joint damage without any outward signs of inflammation or pain. That has happened to my shoulder. I had been off dmards/anti tnfs since July and only on steroids. I had some pain but nothing in my shoulder. 6 weeks off the steroids and it was agony and there is some erosion in the joint.

I came off steroids in mid December but it wasn't until mid Feb before I could feel my joints flaring. Interestingly, it wasn't the usual suspects but other joints where I hadn't had inflammation before.

I think people can go into remission but that is usually within the first two years. I've not actually heard of anyone doing so without the meds but I'm not a rheumatologist :) You should ask them these questions on your next visit. It's important to be well informed even if you decide not to take the drugs.
reply | back to forum

Date: 06.03.2014
From: Toni

Subject: Re: newly diagnosed, really upset and confused

That is very interesting. i just assumed you got the pain to get the damage.
Hoping my appt comes up soon so i can discuss it further.
Been putting it off for 6 months as i was too scared to ask for another opinion.
Only now asked as new areas are now troubling me.
Wishing you all the best Danielle xx
reply | back to forum

Date: 06.03.2014
From: willis

Subject: Re: newly diagnosed, really upset and confused

Hi Danielle and Toni
It is very upsetting when you are told what is wrong. I'm Seronegative RA too. Was diagnosed about 3 yrs ago.
I wouldn't be able to walk or have any sort of life without the meds
I'm on Methotrexate once a week and an anti-tnf once a fortnight
so far i have had a steroid injection 6 monthly but my nurse is trying not to give me them - they need to look at me without steroids to see what is happening more and what they can try next I think. I now have pain although I've had steroid injection so 'Arthur' is active again.
remission - was told that this was me in remission 18 months ago as blood tests showed low markers - didnt' feel like i was until it all reared up again and I could tell the difference lol
Knowing that this is for life now is hard to come to terms with in a big way.
they tried me on different drugs but they didn't help or i had allergic reaction - everyone is different and what helps one won't help another.
always write any questions down so when you go to an appointment you can ask it. I always forgot what i wanted to ask and sometimes feel rushed by doc or nurse at appts so now i just sit there and get them to re tell me again.
The folks on here are so supportive and help so much when you are down, frustrated, angry, hurting etc
don't know what i'dve done without them.
I hope you get some respite soon and good support and help from your medics on your case.
hope you have a good day today.
xxx
reply | back to forum

Date: 06.03.2014
From: bsk

Subject: Re: newly diagnosed, really upset and confused

Willis, it is common for seronegative RA patients to have consistently low or no inflammatory markers. They shouldn't use that as a definitive measure of disease activity without taking your other disease activity into account. One of the consultants at my hospital is doing research on it but I was told it by my current consultant and nurse.
reply | back to forum

Date: 06.03.2014
From: sleepydanielle

Subject: Re: newly diagnosed, really upset and confused

Thank you for your kind words.
I, like Toni, assumed that the pain was a sign of inflammation and that its the inflammation that causes the joint damage? So my theory is if i dont have much pain and not much visable inflammation then no damage is being done? Its very confusing. My elbows feel a little bruised right now but theres nothing there no redness, swelling or anything.
Im still clinging on to the hope that maybe i dont have RA especially as at first my rhuemy said i definetly dont show signs of arthritis. He said my ANA was probably raised due to the stresses of life and having a child etc.
I do suffer anxiety and wake up usually every morning with a whirling tummy. He seemed to think thats what all my pains were connected to.
At my worst though i couldnt even get myself dressed, turn over in bed, brush my hair etc without pain.
I wonder if there are any miracle home remedies that can cure it.
I sit here and wonder what i will be like in 10/20/30 years time, i dont want to be immobile im so scared i dont understand why this has happenned, what have we done to deserve this.
I know i should be greatful for other things and that theres others worse off but it doesnt seem to be comforting to me right now.
The only thing thats helping is talking on here. Xxx
reply | back to forum

Date: 06.03.2014
From: bsk

Subject: Re: newly diagnosed, really upset and confused

Danielle, the point of treatment is so you don't end up with immobility!
reply | back to forum

Date: 06.03.2014
From: sleepydanielle

Subject: Re: newly diagnosed, really upset and confused

I know you're right :-( Im just worried of the long term effects. Ive read that dmards help lessen joint damage and prevent immobility but then what do you get instead....other diseases, cancer maybe? At my second appointment last year my rhuemy said he didnt want to put me on 'poisonous' medication. Now 8 months later ive been prescribed this what he called poisonous medicine.
reply | back to forum

Date: 06.03.2014
From: bsk

Subject: Re: newly diagnosed, really upset and confused

When I was in your position I made a decision (after trying to control my arthritis with diet unsuccessfully.) I decided I would rather have potentially less years with a good quality of life than more years of life with a severe disability. That was my choice and I am not saying you will want to choose what I did. It was a no-brainer for me as my arthritis was severe and put me in hospital.


It will help you if you do some research with the reputable arthritis organisations and maybe call their helpline. NRAS are very good and helped me make lots of treatment decisions.
reply | back to forum

Date: 06.03.2014
From: rhona

Subject: Re: newly diagnosed, really upset and confused

Hi Danielle, No one can force you to take the medication. You could try diet and supplements and see how you get on with that especially if you are thinking of starting a baby soon. When I was first diagnosed with RA I was in so much pain that I think I would have taken anything I was offered. It might be helpful for you to speak to someone about it, you could even phone one of the helplines. All drugs can have side effects but that doesn't mean you will get them.
reply | back to forum

Date: 06.03.2014
From: Toni

Subject: Re: newly diagnosed, really upset and confused

Hi Danielle. i have to say the reason behind me not taking the meds is because im terrified of the possible side effects.
Somebody i used to work with is so much better now she is having methotrexate injections that i know they can work wonders but im one of those people that worry about everything.
Worried about the side effects i could have and scared about what will happen to me if i don't.
Im hoping my new doctor will be more informative so i can make a rational decision.
At the moment im on a bit of a downer too only seeing the negatives.
Think maybe you should call the rheumatology nurses or your gp for another chat to try and calm your anxiety about it all.
Im hoping i will feel better after mine. i don't want to do myself harm by not taking anything but also terrified of taking it.
My anxiety levels are certainly heightened at the moment too. i need to do right by my boys and snap out of it xx
reply | back to forum

Date: 06.03.2014
From: sleepydanielle

Subject: Re: newly diagnosed, really upset and confused

Thank you everyone. I know people on here obviously have their own worries to deal with so i really do appreciate the help.
Toni i hope you feel happier soon, its really hard to try and put on a brave face all the time. You feel you have to especially when you have children, its not always that easy though and anxiety can be so draining. Im going to try and look on the positive side as much as i can.
I think im going to wait a few more weeks before i start taking my medication. I certainly havent ruled it out at all i just want to have a think and research a few more things.
Just wondering has anyone ever been able to stop taking dmards at all, like because the arthritis has cleared up? Or because the drugs have reversed the overactive immune system? Was hoping someone might say they took them for a year and was cured! :-)
reply | back to forum

Date: 06.03.2014
From: toni

Subject: Re: newly diagnosed, really upset and confused

I certainly have not ruled out taking the meds. just want to be sure its the right thing to do first.
Was told its very likely early rheumatoid. i just want to feel a little more certain about the diagnosis.
Wishing you all the best xx
reply | back to forum

Date: 06.03.2014
From: sleepydanielle

Subject: Re: newly diagnosed, really upset and confused

I dont want to say the wrong thing but ive been told Methotrexate was one of the stronger dmards and used more in agressive RA or later stages. Apparently sulfasalazine is a milder one. Im wondering Toni if yours isnt 100% RA or at least early RA it seems a strong dmard to start on. Of course i could be wrong butjust what rheumy told me, he said methotrexate was quite a powerful one. Xx
reply | back to forum

Date: 06.03.2014
From: Toni

Subject: Re: newly diagnosed, really upset and confused

I have been told by my gp and the Rheumatologist that methotrexate is the drug of first choice these days as aggressive treatment from the start is the theory as damage can be done within the first year.
It seems we all get told different things.
I know somebody that had the gold injections as a less aggressive treatment but had to go onto the methotrexate.
This is what i mean by confusion.
We all seem to get told something different. very confusing xx
reply | back to forum

Date: 06.03.2014
From: rhona

Subject: Re: newly diagnosed, really upset and confused

I think whoever is telling you these things Danielle is totally wrong. mtx is certainly not kept for the later stages of RA. It is often used as a first treatment to try and prevent the serious damage that RA can cause to the joints and it is not just joints RA can affect. It is a systemic disease and must be taken seriously. You might be one of the lucky ones that will never have it too bad but early treatment is recommended and what Tomi has said is correct.
reply | back to forum

Date: 06.03.2014
From: sleepydanielle

Subject: Re: newly diagnosed, really upset and confused

I dont particulary trust now that my 1st rheumatologist knew what he was talking about. He didnt even test me for vit d defiency but told me this was my problem and told me to buy vit d supplements.
He told me my ANA bloods were fine but a different rheumy told me it was borderline positive. He prescribed me antidepressants for fibromyalgia and said i definetly dont have arthritis....obviously he was wrong about that! He also never sent me for any xrays and when i asked for xrays on my painful joints he said oh its ok you had one on your index finger 8 months ago and that was fine so theres no point :-\
Recent rheumy sent me for xrays and chest xray straight away and immediately told me i dont have fibromyalgia. He put me srraight on steroidswhich have helped me feel normal.
Sorry if i said the wrong thing about methetrocxate. This was the same rheumy that told me all dmards are poisonous which scared the hell out of me. Another time i hobbled into his office in tears and he was going to send me away with just painkillers andsaid the only thing he could do was try to manage my pain :-( i told him i want to know whats causing it because i shouldnt be pulling myself up the stairs or struggling to get off the sofa at theage of 31!
I feel quite annoyed ive wasted almost a year seeing somebody who wasnt taking me seriously. I guess its pot luck whether you get someone decent.
The one im seeing now is fab and really did listen to me. Sorry about my last post, its what he told me Xx
reply | back to forum

Date: 06.03.2014
From: Toni

Subject: Re: newly diagnosed, really upset and confused

You needn't be sorry.
I have heard differing opinions too. that is why i have sought a second opinion.
My xrays were clear too but apparently that's quite normal early on.
I felt the Rheumatologist i saw thought i was being a wimp when i saw her as she kept telling me my factor was low at 41 and my xrays were clear.
Im told the new doc im going to see is lovely and far more understanding.
Im glad you have a nicer doc this time xx
reply | back to forum

Date: 06.03.2014
From: rhona

Subject: Re: newly diagnosed, really upset and confused

Hi Danielle, I have had RA at least 14 years and I am still learning things about it. I must be lucky as all the rheumatologists I have been to see have been very good and show they understand what we go through. It is good that you now have one that seems so much better and is doing tests that the other one should have done on you. There is no denying that the drugs are all a bit toxic but I try to console myself that even alcohol can be a bit toxic too lol. I remember feeling exactly the same as youself when I got the sulphasalazine and I still remember being on holiday and popping the first one in my mouth, it took all my courage to swallow it and I don't know what I expected to happen and surprisingly nothing did. Try not to stress too much about it, have your holiday and see how you feel when you get back and if you decide to start them be assured they will be monitoring your blood results and would pick anything that was wrong up quickly. xx
reply | back to forum

Date: 06.03.2014
From: Colin W

Subject: Re: newly diagnosed, really upset and confused

Hi Danielle , sulfasalazine is used to treat Crohn's disease and ulcerative colitis at a lot higher strength than we take , something like 16 tablets a day compared to the 4 most of us take , most of us dont have side effects from the drug , Methotrexate is a lot stronger drug & needs folic acid to deal with the side effects .

National Rheumatoid Arthritis Society http://www.nras.org.uk/ and Arthritis Care http://www.arthritiscare.org.uk both have free helplines if you need it , there is help out there along with your rheumy department , our choices are not easy & even 18 years later I am in a similar position to yourself about my Rheumy nurse I seen today wanting to start a new biologic but I want to wait for a few months
reply | back to forum

Date: 06.03.2014
From: sleepydanielle

Subject: Re: newly diagnosed, really upset and confused

Thank you for all the info and help. Its a shame rheumatologists differ in opinions, listening and understanding. They dont know how we feel and how bad everyday life can be, i understand its hard to comprehend when you dont feel the pain yourself but isntit their job to listen and then try and help. The difference between the 2 rheumys ive seen is huge. Im glad Toni you are seeing a new more understanding one, it definetly helps so much. I used to be soooo nervous and sick before my appointments with the 1st rheumy but my new one i still feel a bitanxious but nowhere near as bad.
I think thats a good comparison rhona with the alchohol thing, its funny how little things can make you feel a bit better. Apparently diet coke is toxic and i dont drink that so maybe i can make up for it with the sulfasalazine!

I feel better aswell reading what colin said about crohns disease and sulfasalazine. Thats sounds mean that i feel better but I just mean i suppose 4 is alot better than 16 so it could be worse.
Thank you for the links also :-) xx
reply | back to forum

Date: 07.03.2014
From: sleepydanielle

Subject: Re: newly diagnosed, really upset and confused

Does anyone know if the sulfasalzine tablets should be coated ones? All i keep reading about is ones that have 'EN tabs' on the bottle but mine dont. Mine just say salazopyrin 500mg but no EN. Does that mean ive been given the rubbish non coated ones tgat make your stomach bad?
Im confused, even the booklet on sulfasalzine that the rheumy gave me talks about the coated ones :-( Xx
reply | back to forum

Date: 07.03.2014
From: bsk

Subject: Re: newly diagnosed, really upset and confused

Mine have E/C (enteric coated) but if they say swallow whole, do not crush or chew, then they are coated, I believe. You can always ask your pharmacist.
reply | back to forum

Date: 07.03.2014
From: bsk

Subject: Re: newly diagnosed, really upset and confused

And you always take them with food.
reply | back to forum

Date: 07.03.2014
From: rhona

Subject: Re: newly diagnosed, really upset and confused

Danielle, I would check with the pharmacy to make sure that they are. At the very beginning they gave me ones that were not coated and I had to get them to change them as I was getting stomach pain. I would definitely call them and ask and as bsk says do take them after food and with plenty water. They can make your urine turn a bit orange but that is harmless. x
reply | back to forum

Date: 07.03.2014
From: sleepydanielle

Subject: Re: newly diagnosed, really upset and confused

Thank you. I will ask the pharmacist. I have 3 bottles of them and they hace my name on, will they just change them for free and if they are the wrong ones will i have to get the rheumatologist to write me a new prescription? Going to worry about this now :-(
reply | back to forum

Date: 07.03.2014
From: sleepydanielle

Subject: Re: newly diagnosed, really upset and confused

I just spoke to the pharmacist and they said they cant be changed without a new prescription. He also said they dont usually dispense the coated ones anyway and the non-coated ones are the ones usually prescribed :-\
reply | back to forum

Date: 07.03.2014
From: Colin W

Subject: Re: newly diagnosed, really upset and confused

danielle, you need to talk to your GP & ask if you can have the coated tablets , alot less likley to have problems with them
reply | back to forum

Date: 07.03.2014
From: sleepydanielle

Subject: Re: newly diagnosed, really upset and confused

I dont understand why he would of prescribed me the non-coated ones? Will i have to pay for a whole new prescription and i dont know who to see about this, i wont be able to just walk in and see my rheumy at the hospital so i dont know what to do and if i see my gp will he even be able to give me a new prescription just because ive asked him to??
:-(:-(:-(
reply | back to forum

Date: 07.03.2014
From: rhona

Subject: Re: newly diagnosed, really upset and confused

Hi Danielle, Your consultant at the hospital should have written to your doctor and told him what he has prescribed so you should be able to get another prescription from your doctor ok and if not call the hospital and explain to them. In Scotland where I am we don't pay for prescriptions. If the pharmacy is any way decent he should accept them back when he knows the reason. I would demand the coated ones. Tell them the uncoated ones will aggravate your stomach. The bottle I have says on it Sulphasalazine GR EC 500mg. I hope you get it sorted out ok Danielle.
reply | back to forum

Date: 07.03.2014
From: sleepydanielle

Subject: Re: newly diagnosed, really upset and confused

Thank you for your help. I have done what you said and i called my gp. The receptionist said the doctor would write a prescription for the coated ones and i can hopefully collect it monday afternoon. She said i would probably have to pay again as the ones ive got have already been dispensed. I will ask the pharmacy though as ive spent so much on pills in the last year, none of them have even worked and i dont know why he didnt give me coated ones in the first place.
Thank you so much for helping me, i dont know why im getting in such a state about it. Xx
reply | back to forum

Date: 07.03.2014
From: Colin W

Subject: Re: newly diagnosed, really upset and confused

danielle , I get a prepayment certificate , if you need 4 prescriptions over three months its worth it & if you stay on sulpha that will be three anyway so worth getting one

cost are £29.10 for a 3-month PPC; and
£104.00 for a 12-month PPC. if you get a prescription monday you can claim it back or go online & get one https://apps.nhsbsa.nhs.uk/ppcwebsales/
reply | back to forum

Date: 07.03.2014
From: Bsk

Subject: Re: newly diagnosed, really upset and confused

Pleased you've got it sorted out danielle. Have you decided to take them then?
reply | back to forum

Date: 07.03.2014
From: sleepydanielle

Subject: Re: newly diagnosed, really upset and confused

Thank you for the info Colin, i will definetly look into that.

Ive decided to take them yes but not straight away. I still feel ok at the moment and really dont want to feel ill from any side effects when i go on holiday In a few weeks. (Im hoping i can hold out until then) I say i feel ok but my elbows feel a little bruised and my knees the same. I feel ok compared to what i used to be like.
After coming on here aswell and doing a bit more research im now more scared of being deformed and not being mobile than i am of the side effects. I dont know why that is, i suppose i know deep down i dont feel as i should, ankles are also hurting a little more and i am very worried about being unable to move and in constant pain like i was 2 months ago.
Thank you for all the support, its so nice having people to talk to :-) :-) :-) Xx
I dont know why i
reply | back to forum

Date: 07.03.2014
From: Toni

Subject: Re: newly diagnosed, really upset and confused

Hi Danielle .
So glad you have decided to take the meds. i finally got my appt through today.
27th march so hopefully i will be sorted soon too.
Im feeling pretty much the same as you pain wise.
If my ankles knock together they are rather sore too and had to ice my shoulder at work today as it was crunching and very sore. felt as though it was on fire.
Think once i have seen the new doc i will start the meds too but im gonna ask about ones that are maybe not as strong as the methotrexate to start with.
Ease in gently with the scary stuff. lol xx
reply | back to forum

Date: 07.03.2014
From: sleepydanielle

Subject: Re: newly diagnosed, really upset and confused

Thats really good you've got your appointment soon and i hope your rhuemy does turn out to be nicer than the other one.
Do you take painkillers at work or do you find the ice helps? Is your shouder red or puffy when it feels burning or can you not see anything?
Im still not 100% comfortable with my diagnosis because i do wonder if its something else especially as they werent sure for ages. I suppose we have to trust what they tell us and im not a doctor so not sure what else to do.
Thats a good idea about asking about the methetroxate, the person i saw the other day said sulfasalzine was a milder dmard but as weve learnt we get told different things so i dont know how much to read into that :-\
I hope your pain gets better, its hard coping with this everyday, im so worried about my immune system aswell as i never feel that well and will probably be even worse once the meds start. Oh well, guess we will have to keep plodding along.
Xxxxx
reply | back to forum

Date: 07.03.2014
From: Toni

Subject: Re: newly diagnosed, really upset and confused

Hi ya. it looks slightly red but not massively so. i used an ice pack as the co codamol make me a little sleepy and im out of omeprazole so can't take the nsaid as they upset my stomach.
Ice helped a little. like you say we just plod on. my boys have been on a mad high tonight so that was quite stressful after work as my partner left for work as i got in.
Nothing has ever really got swollen. just very sore and achey . fingers crossed i will feel more confident after my next visit xx
reply | back to forum

Date: 08.03.2014
From: sleepydanielle

Subject: Re: newly diagnosed, really upset and confused

Im the same, mine have never really been swollen apart from my ankle. None have ever really been red either, just sore and achey. Sometimes i feel i should have bruises or something but even when really painful theres still nothing to see!

I have a 5 yr old daughter, shes generally very good but even getting her to school used to be hard for me and we only live a 3 min walk. Those 3 minutes i would literally hobble and wince through every step and i would have people come up to me asking if id hurt my foot.
I feel very guilty sometimes as ive cried in front of her and snapped at her when ive been so frustrated and miserable. I feel awful because i know i shouldnt show her how i feel. Thats the hardest bit pretending everything is fine when its not. I worry her memories of me will just be slouching on the sofa, hobbling around, not being able to play with her properly, struggling and crying and being miserable. I really dont want that. The other week when i was on my steroids i picked her up for the first time in about 8 months and she seemed so chuffed she said "oh wow mummy you can carry me" It was so nice but sad in a way that i hadnt been able to pick her up for so long.
I really hope you get somewhere at your next app. I was hoping to find some natural remedies on the internet.
Has anyone ever heard of himalayan salt for arthritis? And i keep coming across glucosamine for joints, has anyone tried glucosamine and does it help/work? Xxx
reply | back to forum

Date: 08.03.2014
From: toni

Subject: Re: newly diagnosed, really upset and confused

I have the same feelings about my boys. Always feel guilty. Just wish i had more energy to play.
You can get that pink rock salt in Holland and barrett.
Bought some yesterday as it happens. Gonna give it a whirl tonight.
My feet are really sore today after work and shoulder is aching again.
Im thinking guilt is all part of the illness as its a big part of my life at the moment.
Half expect my partner to leave as im a bit rubbish at wanting to do anything or go anywhere.
Definitely give those salts a go. i have high hopes xx
reply | back to forum

Date: 20.03.2014
From: sleepydanielle

Subject: Re: newly diagnosed, really upset and confused

Hello again. Well i have finally managed to change my pills to the coated ones....after a lot of hassle i might add. Thank you for everyones advice though im glad i changed them.
To anyone on sulfasalazine what doses do you take and when? Im really confused because rheumy has specified 1 tablet daily for 7 days, then 2 tablets daily for 7 days, then 3 tablets daily for 7 days, then 2 tablets twice each day for 9 weeks. But it doesnt say what time of day.
Do you generally take them in the morning because on the medication leaflet it says 1 in the evening to start and then when i get to 3 a day it says 1 in morning and 2 in evening. When i spoke to the nurse she told me to start with 1 in the morning and then when it gets to 3 a day she said take 1 morning, 1 lunchtime and 1 evening! Im really confused and when i read up online it also says about not leaving more than 8 hours between eve and morn tablets but i cant eat so late at night and so early in the morning and presumably should take them with food!!
I dont want to take them at the wrong time but im not sure what time if day is best and i dont understand why the leaflet says take in the evening?
Ive had a flare up today again, my top arm muscle is really bad it feels so heavy and sore. I dont understand why though and my elbows feel bruised too. Xx
reply | back to forum

Date: 20.03.2014
From: rhona

Subject: Re: newly diagnosed, really upset and confused

Hi Danielle, I always take mine after food and try and drink a full glass of water with them. I split my dose and take two in the morning after breakfast and two in the evening after dinner. If you are just on one a day at the moment then either take it after breakfast or dinner, it won't matter. It would be impossible for me to be so precise with the timings so I wouldn't worry about waiting more than 8 hours. I take mine around 7pm at night after dinner and then not until about 10am the next morning so don't worry about that. That's good you got the coated ones, just make sure the doctor puts that on all future prescriptions. xx
reply | back to forum

Date: 20.03.2014
From: sleepydanielle

Subject: Re: newly diagnosed, really upset and confused

Hi Rhona, ahh thank you for the information, i dont feel so worried now. The nurse confused me because she said to even out the doses and take 1 at lunchtime.....doesnt say this on the medication though.
I will definetly make sure i get the coated ones on future prescriptions, i still am not sure why my rheumatologist didnt give me the coated ones in the first place, i feel a bit annoyed because im wondering if he only gave me the non-coated ones because they are cheaper to make :-( not fair though because its not like i dont pay for my prescriptions. I hope he wont be annoyed next time i see him that i got my gp to change them, im assuming there is no difference in the pills themselves other than that they are coated?
Im still holding off taking them until after my holiday although im quite worried about delaying them as i feel quite sore today and worried im going to get irreversible damage. Im hoping i will be ok for another few weeks. I was told today over the phone that my xray results were normal which was strange because my fingers to me look visably a little different and a bit knobbly and my knees are still tender and sore so i dont get why the x ray didnt show what im feeling.
I got some of that himylayan salt so im going to try that and hopefor a miracle! Xx
reply | back to forum

Date: 20.03.2014
From: Toni

Subject: Re: newly diagnosed, really upset and confused

Hi Danielle. i used the pink rock salt for about a week and a half.
I must say my muscles were not so achey after a couple of days but the underlying joint aches stayed. Maybe i should have kept it up longer but i found nice hot shower is nicer on my sore shoulders and hips than the baths. Maybe its the water pressure.
I heard of a strange thing the other day about bathing in apple cider vinegar. Apparently the author of the book could barely function with all the pain she was in and these baths transformed her life.
Im always a bit sceptical but im gonna look into it xx
reply | back to forum

Date: 20.03.2014
From: sleepydanielle

Subject: Re: newly diagnosed, really upset and confused

Thats interesting Toni about the apple cider vinegar, not heard that before. Im still searching for a miracle remedy for all this rather than medication. My partner works with medical people and they say its all about chemicals in the body. Need to find the right balance to make everything work how it should.
Ive tried the pink salt but only on food so havent used much. When i first heard about this i think you are meant to take a spoonful a day or something but thinking about it that sounds wrong, i guess you cant just swallow a spoonful of salt yuk.
Will persevere with it anyway because i can just use it instead of normal salt.
Hope your appointment goes ok next thursday. Are you going just for a routine one or are going to sort out meds? Still havent started on mine yet i was thinking yesterday about starting them but decided not to once again. Not good really. I wish i was more convinced of my diagnosis, kind of wish blood test or something had come back more conclusive Xx
reply | back to forum

Date: 20.03.2014
From: Toni

Subject: Re: newly diagnosed, really upset and confused

Before i had kids i worked in private hospital in theatres so got to know alot of doctors etc. ( where i met my other half ) they have said that obviously eating correctly goes a long way to help only the meds can really control the damage the disease can do.
I too am trying to put off the meds as im terrified of the prospect.
My appt is with a new consultant to go through it all again as the last one i saw was so quick to put me on medication i want to make sure its the right decision.
Had no erosions on my last xrays and my markers were not that high.
Surprised me as i felt lousy. plus the first one never even xrayed my feet and my bunion i have had for years is looking weird. she never even looked.
New guy sounds great according to a friend of mine who sees him so i have high hopes.
Do you think you will take the tablets and do you feel like you feel poorly enough to take them ?
My problem is im not in the agony most the people on here are in so i feel like " why should i take them yet " im clearly ok xx
reply | back to forum

Date: 20.03.2014
From: Toni

Subject: Re: newly diagnosed, really upset and confused

Ps. Have you ever considered the giving up of gluten ? Looked into what i could and could not eat and came to the conclusion it would take a whole day to food shop and i would probably starve.
I guess its great having people we can talk to. Always asking my other half to try and have a chat with someone or another at work. Not always sure he does. lol.
But only we can make our minds up and im a real worrier and read every side effect and convince myself its all gonna happen to me.
Be brave xx
reply | back to forum

Date: 20.03.2014
From: sleepydanielle

Subject: Re: newly diagnosed, really upset and confused

Wow you sound so much like me its uncanny. I feel the same. Im not in agony either so my head is telling me i dont need pills. If im in agony and debilitated i need pills but if my day is bearable i dont need them. I dont feel crippled enough to take them.
Dont get me wrong i would take medication for something im certain i have, i wouldnt blatantly want to make my health or life worse by not taking meds i need to make me better. BUT my x rays are normal, my inflammatory markers arent that high either and my RA factor was negative. All these things are making me doubt whether i need these disease modifying drugs. I know there is something wrong with me as its not normal to have the problems i have but im just wondering if its being caused by something else, anxiety maybe, hormone inbalance, food intolerence, blood pressure etc i dont know Im probably clutching at straws but i just wish there was more certainty.
I do know a few months ago i was pretty bad i was hobbling up the stairs and i was in generally a fair bit of pain. Since my steroids though i still havent gone back to that stage of being really bad, its given me hope but i dont know if its false hope.
Bsk said the point of the meds is to prevent immobility and in that sense im still steering towards taking them as i guess the point is we may not have bad joints now or be in agony, but without the meds we may end up like that? Its hard because we dont know that will be the case and at the moment we have little proof we will end up in that position.
Sorry ive really rambled on here! I would be interested to know what they say at your next appointment and what your new rheumatologist says. It must be a bit of relief to know you are seeing someone different xx
reply | back to forum

Date: 20.03.2014
From: toni

Subject: Re: newly diagnosed, really upset and confused

Massive relief to see someone else.
My last letter from hospital said its highly likely i have early ra.
That is not a proper diagnosis in my eyes. i know im not well really and something is up. Its just so up and down i don't know what to think.
Sounds mad but im kinda hoping for more xrays and that there is some sort of change just to show me something is up. Crazy i know.
I will let you know what he says. Do you have another appt ? xx
reply | back to forum

Date: 20.03.2014
From: sleepydanielle

Subject: Re: newly diagnosed, really upset and confused

I know what you mean about the xray, if it showed something wrong then at least you feel there would be a reason to take the meds. At the moment i dont feel i have a reason to take them. I have my symptoms but thats the only reason, i dont feel I have anything medically conclusive. I am up and down too its very difficult to understand it all.
I do have another appt in about 10 weeks but im meant to of been taking the sulfasalzine for 3 months by then. As i probably wont start them for another few weeks then i will have to delay the appt until ive been on them 3 months. Probably means i wont have an appt for a while and i dont know how im going to explain to my rheumy that i delayed my treatment! Xx
reply | back to forum

Date: 20.03.2014
From: Toni

Subject: Re: newly diagnosed, really upset and confused

My rheumatologist only wanted to see me again if i took the meds. said if i wanted to function normally then take them and if i don't want to help myself basically don't.
Just the kind of attitude you need right ?
Hence the new guy.
I have 3 prescriptions in my drawer that i have not collected as i have been hoping for more proof.
New symptoms just lately. Im sure every patient they see must be nervous about taking these meds so just explain you had a few plans you needed to deal with first before you could feel confident enough to take it.
Im on my own a lot as my partner works real long hours so im scared to take them when im alone with the kids in case i react badly.
Not sure how im gonna get over that hurdle yet xx
reply | back to forum

Date: 21.03.2014
From: sleepydanielle

Subject: Re: newly diagnosed, really upset and confused

Definetly a good thing you are seeing a new rhuematologist, very unhelpful with an attitude like that, some see you as just a number and they see everything so black and white. My last one was a bit like that but my new one talked to me as an individual and listened alot more, he didnt make me feel like i needed to be rushed out of his office just so he could move on to his next patient!
What new symptoms have you had lately? Its hard when you have children to look after, you feel like you cant afford to be ill or unwell. Thats my worry too about the meds. I know i have to get my daughter ready and dropped to school in the mornings. Who will do it if i dont? There is noone. What if the side effects make me that unwell that i cant do it? I wish i had some advice for you about your meds but i dont have any as i have the same fears Lol.
The only thing i suppose we can do is, when it comes to it just take that pill and hope for the best. Ive read good advice about taking with food and drinking lots of water. Also starting on a low dose lessens side effects. Could your partner have a day or two off from work when you first start them just to see how you get on? Trying to think of all the options but i suppose if worst comes to worst we can just stop taking them right?
Xx
reply | back to forum

Date: 22.03.2014
From: Toni

Subject: Re: newly diagnosed, really upset and confused

My children are my biggest worry about taking them and not taking them i guess.
I can't be ill and looking after them and don't want to make myself worse by not taking them.
My partner works two full time jobs. He is employed in the day and self employed at night. Works about a 16hour day and gets stressed if he has to take time off so i don't like asking.
Im pretty sure we will all find a way. We have to for ourselves and our kids.
Finding like minded people help too. Its weird how similar our situation sounds. lol xx
reply | back to forum

Date: 26.03.2014
From: Tracey

Subject: Re: newly diagnosed, really upset and confused

Hi Danielle and Toni, just been reading through ur posts. I'm 35 with 2 kids age 6 and 3. In may last year I developed a painful/swollen toe and foot. My toe was initially treated as broken but when it didn't get any better I got referred to orhopadics who did X-ray, X-ray showed no break and didn't show anything eld either. The consultant arranged an MRI scan and it was this that picked up the inflammation. Between getting scan and results I developed pan everywhere you could imagine I could barely get out f bed and up/down the stairs. I was seen quickly at rheumatology and told I have psoriatic arthritis. Like yourselfs it was hard to accept still is. My crp was 115 and esr 126 I was started on methotrexate and given steroid injections (which didn't help). 3 months later I was started on sulfasalizine aswell as mtx. And I am now waiting to start an anti TNF. I am a lt better although crp is still in the 50s I am at least able to walk short distances. I hope you both get on medication that is right for you.
reply | back to forum

Date: 26.03.2014
From: toni

Subject: Re: newly diagnosed, really upset and confused

Hi Tracy.
I have my appt in the morning for a second opinion and discussion about meds. I am going to see if they will consider an mri as my xrays were clear but i have discomfort and pain in many places.
How have you found taking the meds with balancing child care and life in general ?
Its that that im scared of. How will i cope or feel on them ? Will i manage ?
Kinda looking forward to tomorrow as i im hoping to come away more confident xx
reply | back to forum

Date: 27.03.2014
From: Tracey

Subject: Re: newly diagnosed, really upset and confused

Hi Toni, hope your appointment goes well today and you get all the answers you are looking for. I haven't had any of the side effects thankfully but everyone is different some people go onto methotrexate inj if the side effects of tablets are bad and that's meant t help. I've been off my work since aug hopeing to get back once I start the anti TNF.
reply | back to forum

Date: 27.03.2014
From: sleepydanielle

Subject: Re: newly diagnosed, really upset and confused

Hi Tracey, sorry to hear about your diagnosis. Its such a shock isnt it when you get told you have arthtitis. I could accept it more if i was older but i am 31 and i dont understand whats happened. Im glad at least that you seem to of got answers pretty swiftly with regards to a diagnosis. How are you feeling today? Ive bern fine the last couple of days, not had much pain at all....it confuses me. Sorry to be daft but what is TNF? You mentioned anti TNF, is that short for something?

Toni-been wondering how you got on? Hope you are ok. Xx
reply | back to forum

Date: 27.03.2014
From: Toni

Subject: Re: newly diagnosed, really upset and confused

Hi Danielle.
I started a new thread earlier about today. Im more confused now.New guy thinks i have fibromyalgia and has tested my rf again to see if its gone up.
Had xrays of my feet and need to go back for ultrasound of my hand and mri of my hips and lower back.
He feels that i have symptoms of both ra and fibromyalgia so is going to treat the fibromyalgia with amitriptyline then maybe some epilepsy drugs if that does not work.
As i have had zero swelling he wants to hold fire on the ra treatment until we have my other results back.
Need to go back in six months unless one of these tests show something else in the meantime.
Im too confused now. Could have two problem.
Glad you have had a good day. Its funny how these things fluctuate xx
reply | back to forum

Date: 27.03.2014
From: sleepydanielle

Subject: Re: newly diagnosed, really upset and confused

Just replied on your new thread :) xx
reply | back to forum

Date: 27.03.2014
From: Tracey

Subject: Re: newly diagnosed, really upset and confused

Hi Danielle, not been too bad today neck been a bit sore and my usual ankle and knee but have had worse days. Anti TNF (tumour necrosis factor) I'm sure it means is kinda last treatment and you have to have tried 2 DMARDS before you can go on it. I've heard it works great but also has a lot of side effects again. Toni I hope you get some answers soon xx
reply | back to forum

 

Add your comments to this topic
Subject:
Please type your comment here:

Your name:
email:

1+3=
(This sum is to help prevent automatic spamming through this page - thank-you)


top

Site design: T - Creative Home | News | Personal Stories | Links | Message Board