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Date: 25.11.2009
From: bashstreetkid

Subject: Newbie here! Inflammatory arthritis/rheumatoid

Hi, Just found your forum. My consultant told me this week that he thinks I have inflammatory arthritis as opposed to the viral one we all hoped I'd had. He won't call it Reumatoid as I am serum negative and there is still some doubt.Is there a difference between the two, does anyone know? I know reumatoid is an inflammatory arthritis but does inflammatory one exist in its own right? He wants me to take Methotrexate in the New Year as I am flaring up whenever I reduce the steroids. Not nearly as bad as in the summer when was 2 weeks in hospital but it is having a huge impact on my life, having to severely curtail a lot of my normal activity plus pain. I really don't want the Methotrexate having read all the side effects but he says I can't continue taking large amounts of steroids - seems they are just as bad. I want biological anti-tnf's if I am going to have anything but they say they have to try the Methotrexate first. Has anyone gone straight to those first? Thanks
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Date: 25.11.2009
From: Angela

Subject: Re: Newbie here! Inflammatory arthritis/rheumatoid

Hiya bsk, I am on methotrexate and sulfasalizine, and have been diagnosed with Rhumatoid Arthritis even though I am sero negative, and also have no anti ccp which is another test, and no deteriation in either my hands or my feet.

The main reason my Rhummy says it is RA is because in the beginning I had two swollen joints , my wrist and my knee and also I have constant high ESR and CRP (inflammation).They can go down for a short time when I have steroid injections but like you say they dont like you having to many of them.
I really did not want to go on MTX I was really scared, and tried everything I possibly could looking at my diet,taking alternative medication , I even tried to talk the GP into giving me other medications that I had researched in the hope that it might put the disease into remission, of course he refused me. So on my last visit to the Rhummy when I saw that my ESR was 103 I decided I had done everything I could and was still not winning so it was time to stop being scared of the medication and let the Rhummy do what he wants which is attack the disease aggressively in order to beat this inflamation, because the truth is while it is so high my joints and my health is at risk anyway,so I started it 6 weeks ago.
To this day I have felt absolutely fine with no side effects and my mind has got over the fear. Next week my dose goes up to six tablets so I will probably get a bit wobbly again but I will get over it, and hopefully still be lucky enough to have no side effects.
The rhummy said if this doesn't work then he will put me on bioloical anti-tnf's. I dont think many people go straight on them because of the cost to the NHS.
Hope this helps
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Date: 25.11.2009
From: bashstreetkid

Subject: Re: Newbie here! Inflammatory arthritis/rheumatoid

Hi Angela,thanks so much for your post. That's very helpful. I also don't have anti ccp. I had a frozen shoulder, two badly swollen knees, swollen wrist (which has never gone down) and problems with my toes and ankles. Couldn't walk by the time I was in hosp - much better now until I drop the steroids. I am really relieved to hear you have had no side effects as that is my worst fear (not very good at being ill!) I guess I am going to have to give the mtx a go. I've had over 4 months of this and it is getting me down. It hasn't helped that my mum died just after I came out of hospital with septic arthritis. It's been a tough year and I really hoped this illness was self limiting. But you have given me a bit of hope. Are you feeling any benefit yet? Do you have to take steroids at the same time to damp down the inflammation or do you just have the mtx?
Have you been told how long you might have to take it for? Sorry about all the questions but until I see the specialist nurse I don't what to expect.
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Date: 26.11.2009
From: Angela

Subject: Re: Newbie here! Inflammatory arthritis/rheumatoid

Hiya again bsk, Dont apologise thats what we are all here for to support each other.
I have been taking sulfasalizine for about 7 months now and the mtx was added 6 weeks ago.The rhummy said that combination therapy works better.
It is hard to say whether there is any change yet because only 3 weeks ago I had 2 injections in my knees as well, and like I mentioned my ESR always goes down for a time while I am pumped up with steroids, so at the moment I dont feel bad at all, just limited with stiffness and my knees still wont let me walk much without aid.
I need the odd painkiller mainly to go to bed, so that I can get a reasonable few hours without to much discomfort.
I have researched about how long to take it, and it seems to vary , some people go quite quickly into remission, and stop taking it and it stays fine, others stop taking it and it all comes back, and some take it until it doesn't work anymore then change it, its a bit of a dice throw I think.
I am going to stay on it and be good and do what the Rhummy says until my esr is stable for at least a year , then I am going to wean myself off the drugs and take alternative medicine to keep it down. Thats the plan anyway.
I found this site on the net that surveyed people taking mtx and all the others, and it said that in people with inflammatory disease there is always a risk of heart problems but taking these meds decreases that risk. So thats a plus.
I think it was a survey by york university.
I am crap at being ill honest I am the worst patient ever to,so I know how you feel.
What age are you, and did all this only start 4 months ago? I am 53 and this all started with me 18 months ago right out of the blue, never had anything wrong with me before that.
Sorry to hear about your mum, that can't help matters.
Take Care
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Date: 26.11.2009
From: bsk

Subject: Re: Newbie here! Inflammatory arthritis/rheumatoid

Hi Angela, I'm the same age as you! 53 in two weeks(and female, in case my screen name is confusing, I used to love the comic strip when I was a kid!) It did come out of the blue,was completely crippled for nearly a month before got taken into hospital. I thought I had flu for ages as felt run down, tired and had a low temperature. Went to bed one day to rest and couldn't walk properly the next day. Thought I was just stiff and tried stretching and walking etc. All to no avail. I gradually got worse and worse and the pain was horrendous. Didn't sleep in the end for days. I'm worried too about the effects of not taking treatment, it seems far better to go down a well tried and tested route but that doesn't make it any less frightening. So glad to have found this forum, at last people with similar experience to me and can discuss the pros and cons of various treatments. I'm on steroids at the moment and they've put them up again. Hate them as I've put on a stone in weight and feel so out of condition. I used to be really fit, keen gardener with allotment, paint huge paintings etc. but now am quite limited in what I can do. I'm getting through this time day by day and friends and family have been brilliant but I can't say it's easy!
I hope the drugs kick in soon for you. Keep me posted and take care yourself!
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Date: 26.11.2009
From: Angela

Subject: Re: Newbie here! Inflammatory arthritis/rheumatoid

Cor what a coincidence you sound "JUST" like me, we to have an allotment,and I am(or was ) a keen gardener,into self sufficiency in a big way to. I also like to paint. I have painted a few big Mandalas while I have been bad, I found them quite therapeutic to do,they took my mind off my aches and pains for a while. I could lie the canvas flat on my knee,to help my stiff, clumsy arms and hands,and work my way out creating designs as I went along.Made a right mess on the chair though but hey ho thats life. lol
Lets hope we get our bods working proper hey for planting season in spring.
Keep me posted how you get on to.
Take Care
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Date: 27.11.2009
From: bsk

Subject: Re: Newbie here! Inflammatory arthritis/rheumatoid

Nice to know I'm not the only one though I wish none of us had this illness. I'm hoping to be well enough to plant in the spring. Going to have to go down the 'no dig' route of veg growing. It's so therapeutic I'm not going to give it up. I get into my studio a couple of days a week but all the hospital appts infer quite a bit but I'm a fighter. Had a bit scare this moring, got a lerter from my GP telling some liver results were high and I needed to be tested for Hep A, B and C. It really upset me but I spoke to another doc on the phone and she thought it might be linked in to the inflammatory arthritis. Does that ring any bells with you?
Speak soon!
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Date: 27.11.2009
From: Angela

Subject: Re: Newbie here! Inflammatory arthritis/rheumatoid

No I am afraid not.
Do you have your blood done at your local surgery or the hospital?
I have mine done at the surgery, and many a time I get letters panicking about my blood ESR levels,it used to really scare me until I realised that it is just protocol with the surgery if there is any abnormal result it is flagged up quick and you are asked to make an appointment, but at the hospital the results go straight to the Rhummy and he deals with it accordingly obviously he expects some abnormality with RA so he knows what to worry about.
Its just a guess but maybe thats what happened to you?
I have a book now and record all my blood results,and I have a record of all the normal levels to compare them with.Makes me feel safer.
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Date: 27.11.2009
From: bsk (aka Sally)

Subject: Re: Newbie here! Inflammatory arthritis/rheumatoid

Thanks Angela. Apologies for all typos in last post, hands a bit stiff today. I've been doing a mad search on the net but can't really find what I need (but loads of other interesting stuff!) I think it's a good idea to keep a record. Thanks for the tip. Apparently my blood tests by Rheumy were fine! The GP explained a lot of stuff to me over the phone today. She supports your view that I should go for the mxt, saying my rheumy is very good and she would follow his advice. That's reassuring. She's going to see me in a couple of weeks. The other one just left me hanging. I feel very anxious about my health at the moment. Probably not just to do with diagnosis but my mum's recent death - it was arthritis related (osteo, septic arthritis)and very frightening. My family know about my illness and are worried but I am playing it down as they have had enough to deal with, especially my father.
It helps to talk to someone going through it themselves. thank you.
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Date: 28.11.2009
From: Angela

Subject: Re: Newbie here! Inflammatory arthritis/rheumatoid

I totally understand you feeling anxious with your mum having osteo septic arthritis I would be just the same.All the more reason to keep upto date with what you need to watch for.
Anytime you need to search for anything or chat I will be glad to help, two heads are better than one.
Take Care
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Date: 28.11.2009
From: bsk (aka Sally)

Subject: Re: Newbie here! Inflammatory arthritis/rheumatoid

thanks so much. I'm so glad I found this forum. I don't feel so alone.
Take care yourself.
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Date: 28.11.2009
From: sue

Subject: Re: Newbie here! Inflammatory arthritis/rheumatoid

hi yes i started straight on methotrexate and am having a very bumpy ride on them with being sick and iv been on antibiotics for the last to weeks as iv had a chest infection that i just cant shake off but on the up the methotrexate has reduced my swelling and is reducing my flares but i still hate taking it good luck
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Date: 29.11.2009
From: bsk

Subject: Re: Newbie here! Inflammatory arthritis/rheumatoid

I'm sorry to hear you are having a rough ride on the meds Sue. I'm very prone to chest infections myself as am asthmatic,had four whilst on steroids alone so you have my sympathy. Good to hear your other symptoms have subsided though. A friend of my sister's went to a nutritionist and is on a very strict diet,, apparently has reduced her symptoms that way. I haven't spoken to her yet so it is hearsay but am interested to explore that option. Everything I've read talks about a healthy diet(which makes sense) but haven't found any info on controlling symptoms by diet yet.
Good luck and take care, especially in this rotten weather.
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Date: 29.11.2009
From: jill

Subject: Re: Newbie here! Inflammatory arthritis/rheumatoid

Hi BSK.... welcocme to our wonderful forum.... I havnt been in a while, been ill etc... ive been coming on here for about 9 months now.......ok seron neg consitions are those in which the blood tests for R.A. come back Negative..... doesnt mean U dont have R.A., doesnt mean U do....Seron Neg arthritis is kinda com mon and may result from a range of conditions like Gout, Chrons, Or Reiters(I have Reiters)....... I have Inflamatory arthritis, altho in past my ESR level went up to 97, one rhummy told me I had R.A. antother said No, its Reiters, and i8t has left me with Chronic infla artha...your GP is correct about Labels,as the treatment is the same... I am on MTC(methtrexate and Biologic meds(enbrel injections) ive to date had 7 corrective surgeries(dont let this scare u, we r all different) but i now need antoher spine op,a dn seems I need two shoulder ops again(already had those doen three years ago...my Inflam artha isnt under control, eventho I take all the top meds! but as I say we r all diff..... I must say tho BSK... regards the labelling part...if U claim for DLA...disability livivng allownace.... I have found in the past that if U say U have R.A. u r more liekly to get the Benefit u deserve.... altho Inflam is as painful as R.A.(affects the joints and all the soft tissues, tendons , ligaments, discs etc.... inflam can be more painful in some ppl than R.A. in others....it depends how active the condition is......will stop blabblering now....hope this kinds helps.....I dont go by diets, althjo alchol is terrible for people with arthritis, also I didnt start any decent MEds like Methtrexate for over 20 years..... ppl r getting them faster now, thank god..... also tho BSK, some ppl may see a difference in their condition, but how Chronic r they? I think it totally depends on how Mild or how Badly chronic u suffer, if its mild, u may see benefitis in diet change.... in my mind, if its chronic like mine, cant see tht there wld be a change, I eat well as it is, plus im on Immune suppressants and still my condition is active......... anyway keep chin up, we can moan, cry, larf in here, we help each other as best we can..... goood luck

Jill
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Date: 29.11.2009
From: jill

Subject: Re: Newbie here! Inflammatory arthritis/rheumatoid

Dear Sally, bash street kid lol....Im pansy potter....loved those mags....I want to say this to u.......ive read more of your posts, and \i want to say Please please DO NOT worry about having inflam artha as such.....sorry not getting this across properly....I readu lost your lovely mum recently due to septic artha.....anything septic is a terrrible thing.... that wont happen to um U will be on all the correct meds soon....also unfortunately NO one goes straight onto Biologivs unless they try methtrexate first.... Like angela I was on MTX first, thens ulfa(couldnt ciopem with sulffa) now i am on Methtrexate(MTX) and Enbrel biologics, U have to fit a certain criterai...all joints inflamed etc... and two appointments b4 u get those meds...they cost the NHS Ten Grand a year!...U will get it if u need them, but it takes time.......try not worrry about the condtion your mum had, altho I would talk to my Rhumatologist about it....there may be NO comparision, and then U wld have worried for nowt, and remember worrying causes us all stress and makess us flare up worsse ok..... u can always talk to any of us, we r all herre for u, its a wonderful group. and u will get to know us all soon, just keep popping in, if yiour having a bad day, say so and we send out hugs...((((((( hugs for u )))))))) tk3e care Love Jill xx
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Date: 29.11.2009
From: bsk

Subject: Re: Newbie here! Inflammatory arthritis/rheumatoid

Oh Jill thanks so much. Your posts are a great help and I'm so glad I've found you all. My Rheumatolagist knows about my mum as I had an appointment shortly after her death and I was a bit of a mess. He was very supportive and understood how hard all this has been for me.My mother struggled for so many years with osteo, she was completely disabled at the end of her life but she didn't complain very much. She was so worried about me this summer and, in some ways, I'm glad I don't have to tell her. But I did miss her badly on Monday as she would have remembered I had an appt and rang to find out what the consultant said. My Dad and my sisters all forgot. My dad is much more pragmatic and he doesn't see what the problem is with Mtx! Maybe he's right, just take what you need to get better.
I've had a few thoughts about the diet thing as well. It's possible that my sister's friend went into remission anyway and it was nothing to do with the diet, or maybe she has a different kind of arthritis, viral perhaps that was self limiting. It's hard to make a judgement without any hard evidence and that's what I will be going on. Don't want to mess with this illness. I can't help thinking if it was as easy as going on a diet everyone would be doing it and the consultant's job would be redundant.
Thanks again Jill, appreciated your help and kind thoughts a great deal. love Sally
p.s. thanks for info re:DLA I will bear it in mind.
.
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Date: 02.12.2009
From: dennis rooney

Subject: Re: Newbie here! Inflammatory arthritis/rheumatoid

Hi ,
I have just posted my story of life with arthritis.Read through it and you will see how thinking has changed re treating arthritis over the years.Todays thinking is to arrest the onset of arthritis with the max dose of methotrexate to attempt to prevent damage to the affected joints and in my opinion it works.Unfortunately this approach was to late in my case.All medications have side affects even the humble asprin.So in the end it is your choice,risk the side effects and save damage to your joints or?
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Date: 03.12.2009
From: jill

Subject: Re: Newbie here! Inflammatory arthritis/rheumatoid

Hi Dennis, havnt read your personal story yet...but will...I do agree with u on this posting, that thinking Positive helps,of course Positive thinking in any area of life is far better than having a negative attitude....so yea I agree, if u can be positive, it helps, but only helps the mind, which of course is a very powerful piece of equiptment within our bodies........however, im a strong minded lady, but with chronic Inflamatory Artha, with DDD(disc degen disorder)...Reiters....my pain is chronic every day...im on MTX over two years, and now on Enbrel over a year......I used these meds as last resort, or so I thought, but still im in pain, I think the meds I mentioned have helped with the flare ups, much less, and if I do get a flare up, its only a week or so........ but im suffering from degeneration of the soft tissues...discs in neck, cartledge, tendons....was told by my Biologiscs Nurse(rhummy nurse) tha the MTX and Enbrel cant possible stop the degeneration of m,y soft tissues etc.... tendons etc....they help Just the joints(bones i guess)......ive had to date 7 corrective surgeries due to impingement on both shoulders(got that back, need more ops xray dept said, rhummy said)! tndons getting caught under the shoulders....another spine op(third disc gone), had two ops on hip...Bursa removal(tissue yet again) and a huge tear in the soft tissue and scrapped away artharits in the joint)....Im struggling to come to terms with all this..... seems that im on the toxic meds i.e. MTX, Enbrel, yet no meds taht can stop the degeneration of my soft tisssue, which causes terrrrrible pain, like Absess pain, nerve pain...... I try to be Upbeat, many on here will tell u that I am, and cant beleive how positive I am, its not a front, I am genuinely a happy person, However, I strugggle so much!! family does too.... and there is nowt anyone can do for me....my rhummy told me years ago that there ws nowt more he cld do for me....and by god hes right!.....I now as I type this, seriously think I mite do what Greg is doing.....dont think ive got much to lose really..... but then I think "How wld I bw without my combined therapy? had this since my 20s, but got worse since 2002...and im sooooooooooooooooooooooooo Bored with a capital B, with this nasty insidious disease!.....anwayway Im will get round to reading your story..... hope it cheers me up tho lol...... My mantra is Positivity is everything! I do beleive in that, but sometimes, well im only human, and I cry and get low, we all do im sure.......ive lost the life I should of had....ive got a mobile scooter, now that is fun lol.....mite get that out soon.... Jill
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