What next...??? Help and advice needed

[rab333]

I am at present on Humira since Dec.2011..."will make you feel like a new man " ...sadly it hasn't ...no real lasting effect...I seem to get flares every 6-8 weeks and the last one put me off work for 4 weeks and was only settled with steroid injection. My consultant is reluctant to give me steroids...but this seems to be the only thing that helps...I am also frustrated because when I have fatigue and painful joints my bloods are normal...I have tried MTX and also Sulphsalazine...my next review is at the end of the year and I feel I am getting to the end of my wits as I don't foresee any useful treatment...

[Hidden]

Hi,

It always sounds alarm bells in me when a doctor says it will make you feel like a new man/ woman, and experience has unfortunately, proved me right. I have tried many of the Dmards and antitnfs of which the only one that worked for me was Entanacept, (Enbrel), which I had to stop for complications to a hip revision, otherwise, I would have stayed on it.

Going on to low dose steroids was an option for me, as cortisone makes me feel good, but really did not want to for various reasons, so as a sort of last resort, I am trying Azathioprine, so far ok, no side effects 2 weeks in.

There are so many drugs out there, try, to try a few more before deciding and also tell your consultant how you feel and get that appointment brought forward, December is too far away, when you are not feeling well. Good luck and take care.

Jenny

[su2po]

I too went through the same thing, every time they said "a few weeks and you'll be right as rain" every time I went back a month later worse than ever. I was put on enbrel and since then my life has improved dramatically. ask your doctor about it.

[bub124]

Hi Rab

I failed on Humira too. I'm just about to start Cimzia so watch this space... I also take 4mg of prednisolone daily which seems to keep the flares manageable. It's only a small does so I don't worry about it too much and quite honestly in the general scheme of things it's the least of my worries.

December seems an awfully long way off. I'd hassle them for an earlier appointment. If you don't ask you won't get.

Oh, and my bloods have always been normal - never had an ESR above 20. My rheumy says I'm an enigma lol

[Ozzy]

Hi I am exactly the same but still taking Mxt even though it leaves me in so much pain and dizzyness that I spend two days in bed afterwards, doen't help with work or home much. If I stop taking Mxt the doctor said the PCT would withdraw any funding. So I wait with swollen joints etc to see if in six months they will change the Humira etc. I am looking at changing GP and hospital as I know that by reading other peoples blogs there is better treatment out there it is just a case of finding it Meanwhile I love this website rheumatoidarthritisguy.com it cheers me up when I would like to punch something as that would hurt to much.

[CB43]

I'm at the stage of thinking 'what next' too! I have been diagnosed a year and a half. The RA started in my toes, but within a few months had spread to nearly all my joints... toes, feet, ankles, knees, hips, fingers, wrists, hands, elbows shoulders, jaw and neck. By June last year i was left unable to wash, dress or feed myself and then had 3 days of steriods by IV in hosptial... the results were short lived. I tried mxt by injection, plus sulphasalazine and hydrox (something - can't spell it!), but it didnt work, so went onto Cimzia a few months ago. For the first few weeks i did feel 'like a new woman' and couldn,t believe the difference.... but within a short time i was back using crutches to walk and had fluid drained off my kneed 3 times in hospital. Then i started to feel (really) unwell and noticed lymph nodes enlarged on my neck. When I saw my RA consultant a few weeks later, he noticed the lymph nodes were up on my neck, underarms and groin. I had a full body scan the following day and stayed in hospital for 12 days after. I also had a full lymph node removed under a general. I had never felt so unwell! the biopsy from the lymph node came back clear, and i started to feel better and went home. Since then I haven't taken the Cimzia and am on 30mg of steriods per day... which still aren't working that well.... Im still walking with crutches, my wrists, ankles and kness are still swollen and no one has given me any real explanation as to what could have made me so unwell and caused my lymph nodes to come up. im left abit miffed as to 'what next'!!