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Date: 23.02.2009
From: Sharon

Subject: Inflammatory arthritis

Hi there,
I was told last week that i have inflammatory arthritis. Anyone got this type?
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Date: 24.02.2009
From: Jill

Subject: Re: Inflammatory arthritis

Yes I do, My names Jill, live in sussex, I have Reiters disease, which causes me to have InInflamatory Arthritis, I have had several Corrective Operations, I am on Enbrel, methetrexate, and other drugs. I would like to hear how you cope on a daily basis

take care
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Date: 24.02.2009
From: christine

Subject: Re: Inflammatory arthritis

hi gill, im waiting to go on embrel, ive been took of humeria, because i was reacting at the injection site, i would like to know is it helping you, ive got R,A, thanks christine.
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Date: 25.02.2009
From: Sharon Rodgers

Subject: Re: Inflammatory arthritis

Hi Jill,

It is really wierd how it travels through your body, it dots about all over the place, no pattern to it. Ive been told that it could go away but no idea when or it could go into rheumatoid. I am just taking anti inflammatories just now and to go back to see rheumatologist in april to see how Im getting on and might possibly start me on arthritis drugs. I hate it when it is really bad as it stops me doing daily things like housework and doing stuff with the kids. It really gets me down sometimes.
xx
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Date: 25.02.2009
From: Jill

Subject: Re: Inflammatory arthritis

HI Christine
Embrel is working for me, although it took a long time(say 4 months) to realy Kick in for me, I have noticed that the flare ups have stopped, and I get less fatigue, still get tired, but not as bad, Unfortuantely in my case, I have had to have a lot of surgery, Dont panick tho, as we are all different, becasue of the Reiters it attacks the soft tissues, so my discs are thinning and disappearing, i have had spine surgery called Dynesys, long recovery, but did help, sadly another disc has gone, and i need another spine op, my shoulders have been operated on and my right Hip, dues to the synovial fluid becoming inflamed and arthritis in Hip, But I truly feel Uplifted using Enbrel and I hope this suits you, My friend was on Enbrel didnt help her but shes on Humira which does...LOL we are all different, so never give up Aslo Christine R.A. and reiters needs the same treatment, One doc says I have R.A. another says no, its Inflam arthritis, dont matter to me, because the pain is the same...Dont want to scare anyone, but Unfortunaley my rhumatologist reckons im unlucky and one of the 25% that get it chronically...Oh well, chin Up, stay positive Ok. by the way, How does your RA effect you daily?

Love Jill x
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Date: 25.02.2009
From: Jill...east sussex

Subject: Re: Inflammatory arthritis

Hi Sharon

The good thing about this forum is that we can share info and Not feel we are alone, yes the pain goes all over, one day in hips, next back, next the neck, tendons etc,How long have you been suffering this condition? You may be lucky and it will get less for you, I do think tho that you should condsider the Dmards(immune suppresants) it has helped me, Im on Methtrexate(tablets 17.5 weekly) and I inject the enbrell 50 once a week, its dampened down my symptoms, because before i just felt I was dying due to lack of energy and intense pain, I dont feel like that now, but I have lots of surgery, and need a spine op again! I have DDD Degenerative disc disease, cervical spondy( 3 discs gone in neck) But I try stay pos, because there are people far worse offf than me sadly, I also have 5 kids, 22 down to ten, I have had to tottaly readapt my way of life, housework is hard, I do only what I have to do. When im very bad, I bought myself a mobile Scooter LOL that is fun to use, but gets me around the park with my kids, im a young 48 and had trouble since 26 years old, but diagnosed in 2002, dont beat yourself up if u cant do housework, it will be there tomorrow! get your hubbby to help u more

Love jill x
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Date: 28.02.2009
From: christine

Subject: Re: Inflammatory arthritis

hi gill, thanks for your reply, at the moment im really bad, had to go to the hospital yesterday, they gave me a kenalog, i should start the embrel next week,the kenalog dont really work anymore, its my neck more than anything the pain is terrible, my day to day liveing is very poor, cant do things i use to do,iget so angry at times, sure you do as well,but not much we can do is their gill, just got to get on with it.christine.
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Date: 28.02.2009
From: Jill

Subject: Re: Inflammatory arthritis

Hi Christine

My neck pain is terrible, I do understand, the pain does affect your whole being, remember you can always talk to me, im happy to help! Three of my discs have disappeared in my neck, plus from my spine,I should really use my collar for my neck and often I do, especially when my head feels too heavy for my neck to support. At night I use the V pillows, that way I make sure I support my neck and Support my Upper spine also, otherwisw my muscles begin to contract and that affects my neck the next day.... By the way, I also have a Long(7ft) pillow that I use to support my knees and elbows at night, its like huggging a huge teddy bear, its not too wide, less than a regular pillow, and easy to adjust in bed, I couldnt do without it, If you cant get hold of one of them, Try the V Pillows, you can get them in any decent curtain, duvet shop.

I take a lot of painkillers when my neck starts up, along with the Enbrell etc, enbrel alone I dont think takes pain away, You must have decent painkillers, what are the ones you take for pain? also where do u live Christine? are you in UK? If i can help anyone else, or just give support so that you know you arnt alone, Im haoppy to help...the Only problem is of course, if anyone asks me whats wrong and they want to know how it affects me, I would terrify people LOL, so my aim is to help and obviously for me to ask questions also, and it helps to know we arnt alone in our pain, Yes I do get angry, I feel im a failure, yet to look at me, I look healthy, which im glad about, my close friends know how I suffer tho...Keep ya chin Up

Love Jill
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Date: 28.02.2009
From: Jill east sussex

Subject: Re: Inflammatory arthritis

Hi christine, just looking at one of your other messages on here regards the pain you get at the site of injection, I hate injecting Enbrel, It really stings and hurts, so I am asking My Nurse for another type of Injection, the one where you just press a button and you cant see the needle? bit like the diabetic ones, My friend has one and says its much better than the Needles we use

Jill
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Date: 28.02.2009
From: Jill East Sussex

Subject: Re: Inflammatory arthritis

Hi Sharon

How are you coping? where abouts are you with regards your inflam arth? Is the pain in all your joints, or just one specifically? when you see your specialist in April(assuming you havnt got the pain under control) ask for the DMARDS, The immune suppresant ones, although they are expensive and they it does take time to get those drugs, took me over three months b4 they agreed from NICE that I deserve them, they dont like giving them out, there is a test they give to see how swollen your joints are etc and examine every joint for you to qualify(uk) for the drug also because its toxic, But I didnt get my enbrel until 3 years after diagnosis in 2002, I wish I had them earlier, Im sure I would have suffered a lot less, Please get the correct Meds Immed. That way you will maybe be less affected.... can I be Nosy and ask How doctors diagnosed you? I have Reiters disease, which has left me with Inflamatory arthritis, however my bloods go very high at times and my GP says I Have R.A. Because Reiters disease is soo rare, my Rhumatologist wont accept that I have R.A. too, my thumb joints are huge, and I have similar symptoms to R.A. I have all they Synovial inflamations also like R.A. sufferers do too, so I am confused at mo

look foreward to hearing from you
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Date: 01.03.2009
From: Sharon

Subject: Re: Inflammatory arthritis

Hi Jill,
Ive been not too bad the last couple of days but my wrist is agony tonight. My doctor phoned me on friday and said if I wanted something stronger then he would prescribe it but ive no idea what it is yet. My rheumatoid factor was psoitive and my elevated inflammation blood test was raised so when I went to see the rheumatologist he examined all the joints he said that this is what Ive got although it could go into rheumatoid. The joints that suffer are my shoulders, wrists, thumbs, some fingers, hips and big toes so quite a lot!
Hope you are well.
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Date: 01.03.2009
From: christine

Subject: Re: Inflammatory arthritis

hi gill, yes im from the uk,you sound a lot worse than me,ive had no ops, i was doing fine on the humeria,but had to be stopped, the injection sites were getting worse, but since i stopped im on a really bad flare,im going back to the hospital tomorrow, he said if my neck did not settle, he would inject kenalog in to it, its just like you said, its killing to hold my head up, i take slow release diclofen, tramadol, paracetamol,im going to take your advise, and get a v pillow, thanks for listening gill. christine.
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Date: 01.03.2009
From: christine

Subject: Re: Inflammatory arthritis

hi gill east sussex, humeria what i was on is a pen, you dont see the needle, but my injection site got really bad, i mean swelling and bruising, all down my leg,im going on embrel what your on, and i do believe the needle is not a pen,o god just have to see how that reacts to me,thanks for your reply christine.
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Date: 02.03.2009
From: Jill

Subject: Re: Inflammatory arthritis

((((HUGS 2 )))) I hope he gives you the correct meds that you need, let us know how it goes ok... sounds like you have it bad

take care Jill x
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Date: 03.03.2009
From: Sharon

Subject: Re: Inflammatory arthritis

Well Ive woke this morning with my thumb throbbing, swollen and it is very hot too touch. Whats that all about?!?!?!
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Date: 06.03.2009
From: Tracy

Subject: Re: Inflammatory arthritis

Hi Sharon, I seem to be suffering similar symptoms you! The Rheumatologist has said 'inflammatory arthritis' with a couple of positive results, but I think it may take more time and more tests before giving a definite diagnosis ... it could just stay as that, who knows.

I've been getting severe pains, swelling, stiffness for nearly a year now, in my wrists (on top and underneath), knuckles, knees, shoulders, ball of feet, almost everywhere! and they happen once to twice a week and last for 24-48hrs - sometimes 2 areas at a time. I've been taking anti-inflammatories for about 5 weeks and anti-malarials now for about 2 (apparently these can take upto 3mths to start taking effect) - haven't had any side effects! :) I think it's better not to worry about it too much at this point - you've managed to get past the doctors and are now seeing the specialists - and that's got to be a good thing?

take care, Tracy :)
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Date: 06.03.2009
From: Jill East Sussex

Subject: Re: Inflammatory arthritis

((((HUGS 4 U))), Yes that is arthritis, think we have all had the thumb pain....specilalists will def give you the correct meds...take care let us know how u get on

Love jill x
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Date: 21.03.2009
From: Sharon Rodgers

Subject: Re: Inflammatory arthritis

Hiya,

I have been up all night with the most excrutiating pain I have ever felt in my foot. It is just so sore, is this normal for arthritis? It is the whole foot that is sore! Help!!
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Date: 21.03.2009
From: Jill

Subject: Re: Inflammatory arthritis

Your welcome Christine, I use to be on Tramodol, Then had the Transtec patches(morphine) got used to those, and I am now on Zomorph 100 morn and 100 at night(so very hugh dose, Plus i use Oramporh when I need that, when flare up is so bad, I didnt realise that you cld have injections for neck pain< I will def ask my doc for that the next time my neck flares up! so thanks for that info, thats y this forum is so important, we can exchange ideas, those V pillows are a god send, i make sure that its tucked right undeer my neck(i use one half of the V for my head to rest on, and bring the other side of the V 4 my upper spine to rest on and it supports my back) Hope you can visualise what i mean LOL... I think u need stronger pain killers, Zomorph is the best I have taken....take care

Love Jill
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Date: 21.03.2009
From: Jill

Subject: Re: Inflammatory arthritis

I ve had that Sharon.... my thumb joint is permanently swollen(altho not sore) the bone is huge!I also had trigger thumb in both and had them both injected, maybe you cld ask your Gp for those

take care

Jill
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Date: 26.03.2009
From: Sharon Rodgers

Subject: Re: Inflammatory arthritis

Hi all,
went to see rheumatologist last noght and Ive been put on sulfasalazine (sorry dont know correct spelling). Anyone on these?
Sharon
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Date: 26.03.2009
From: Jill

Subject: Re: Inflammatory arthritis

Good luck Sharon, stay positive and let us know how u get on, remember they take a little time to kick in.

Love Jill
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Date: 26.03.2009
From: Sharon Rodgers

Subject: Re: Inflammatory arthritis

Hi Jill,
Have you been on these drugs?
Sharon
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Date: 27.03.2009
From: Jill

Subject: Re: Inflammatory arthritis

Hi Sharon.... I was given methtrexate over two years ago, didnt make a difference, was admitted to hospital as my ESR went up to 97! he suggested going on Sulfasalazine, made me ill, Naseaus(cant spell that word), pain same... after 6 months or so, took me off the sulf...and eventually after a lot of time wasted and red tape, i went on Enbrel injections along with the Methrexate, been on enbrel for over a year now.... taken along time to kick in for me, but I wouldnt be with out those two important Meds, also on 110 Zomorph(huge dose) with Oramorph(when needed), Diazapam, co codamol, Arcoxia(anti inflam meds) and anything I can get hold of LOL... I take those daily...and they help My joint pain! But they Dont help my Tooth ache! Amazing Huh? my GP cant understand that.... oh well I do have a strong pain threshhold(had 6 kids LOL) so can u imagine the pain i would be in without taking all that ?

Hope your well Sharon
take care

Love Jill
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Date: 01.04.2009
From: Sharon Rodgers

Subject: Re: Inflammatory arthritis

Well my wrist is absolutely agony, I hate this soooooo much, wish I could wake up in the morning and it was away. Getting me down. Got appointment with GP on fri to get prescription for the sulfasalazine (dont even want to take them!!)

Depressed :(
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Date: 01.04.2009
From: Jill

Subject: Re: Inflammatory arthritis

Awww Sharon, Im sorry to hear your in agony....what painkillers are u on...dont dread going on the Sulf. for u it may be fab. just didnt suit my stomach....back in 2002, after being admitted to hospital(6weeks) the last two weeks i contracted C.diff, due to all the antibiotics pumped into me for three weeks 24 hrs a day.... Since then, my stomach cant handle much, thats y im struggling taking antibiotics for last 5 weeks due to gum abbsesses!

have u asked if mb u can go on Methtrexate instead?

take care and get the painkillers sorted, i take Zomorph 110(high dose) but they start u at 20 my 30 twice a day(long lasting slow release morphine)
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Date: 03.04.2009
From: Sharon Rodgers

Subject: Re: Inflammatory arthritis

Hi All,
Well thats me got my prescription for sulfasalazine. Suppose theres no going back now?!?!
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Date: 04.04.2009
From: Jill

Subject: Re: Inflammatory arthritis

No going back now Sharon.... try it and c how U get on... think it takes a while to kick in, like most good meds... take care

Love jill
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Date: 07.04.2009
From: Sharon Rodgers

Subject: Re: Inflammatory arthritis

Well started my sulfasalazine and so far so good although did feel very sick the other day. The anti inflammatories I am now on - naproxen - are really making me feel 100 times better. Some relief at long last, long may it continue.
Sharon
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Date: 26.05.2009
From: Sharon Rodgers

Subject: Re: Inflammatory arthritis

Hiya,
Well I have been on sulfasalazine now for 2 months and have had no problems up till now but the last week or so I have been feeling really light headed and faint...does anyone think the meds could be causing this?
Sharon
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