Arthritis getting worse : I have tried 3 different... - NRAS

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Arthritis getting worse

02tkwillx profile image
10 Replies

I have tried 3 different DMARDS and none of them have worked. Four of my joints are swollen and extremely painful. It feels like I have been hit with a hammer on them. The only good thing that has worked for me in the past are injections in my joints. I had two in (separate places) in my foot many months ago and haven't had pain there since. The thing is they were so painful and has completely put me off having another done. I asked my rheumy consultant if I could be sedated whilst I have my four joints injected, he said no, as it's not a service they provide. I was wondering if anyone knows of private clinics in London that offer this service and how much it will cost? I cope every day with extreme pain but the injections are that bad for me, I almost passed out. They say there's anasteatic in the injection, but I don't agree. I have tried hydro, methotrexate and now been on sulfazalazine for 12 weeks. My joints are worse than ever. I can't even touch my ankle as it's so tender. :((

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02tkwillx
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nomoreheels profile image
nomoreheels

I'm sorry to hear you're struggling. I've only had one steroid injection & that definitely had an anaesthetic, it was noticeable the further on my Rheumy injected. It is not immediate but definitely I'm definitely aware until the steroid starts working, for me it was a couple of days. What concerns me more Is that you sound as if you're becoming reliant on them & that's not ideal or recommended if you're aware of the guidelines. Continual steroids can have an adverse effect & aren't treating the disease only reducing inflammation & in turn relieving the pain.

Has your Rheumy not discussed the possibility of putting you forward for biologics as from what you say you appear to have failed on 3 DMARDs, one being MTX which as I understand it is the recommendation for suitability? I think rather than pursuing the private sector food steroids I'd first be having a word with my Rheumy about his considered future treatment plan for you. Obviously your current meds aren't beneficial if you're needing steroid injections regularly. Are you prescribed an NSAID? If not that could be all that but takes if your bloods are reasonable, excepting your inflammatory markers of course!

I hope you receive the help it sounds you need from your Rheumy. I really empathise. :)

02tkwillx profile image
02tkwillx in reply to nomoreheels

I forgot to say I take NSIADS several times a day :)

nomoreheels profile image
nomoreheels in reply to 02tkwillx

Certainly I'd be asking about your Rheumy's treatment plan then. As Metal-legs has also mentioned, biologics may the the next step, according yo your DAS 28 score & maybe this could be helpful to read for you to state your case at your next appointment nras.org.uk/anti-tnfa-treat...

Good luck with your PIP journey.

02tkwillx profile image
02tkwillx in reply to nomoreheels

Thank you

Metal-legs profile image
Metal-legs

Good advice from nomoreheels. You definitely need a drug review from your rheumy. I was managing on steroid injections for a while 10 years ago before I started enbrel. That was a miracle drug for me, you will notice a huge difference if you can get the right drug combination and get the disease back under control. I've had masses of steroid injections into the joints and some of them have been very painful, if they don't inject right into that joint space you can be in agony. Try and get on an anti-tnf drug and hopefully you won't need any more injections.

02tkwillx profile image
02tkwillx

Hi metal legs

That's probably why my injections were so painful then. I couldn't be a wake having another one done. I will mention enbrel at my next app. Are there any side effects at the beginning and is it by injections? Once my inflammation goes I know I'll feel much better. It's causes so much pain, stiffness and swelling, cant wait to be out if this pain I've even applied for pips as I need help with personnel care , cooking & housework. Whether I get it is another matter. So glad I have a pro active husband. Thanks again for your reply :)

Metal-legs profile image
Metal-legs

Enbrel is a weekly injection, very easy to do and painless. I had no side effects from it and it reduced my inflammation to zero. You could also ask about humira and cimzia, they are injected every fortnight, have a read on the nras website about all the biologic drugs. I wish you all the best with your PIP application, there is a booklet available about pip if you ring the nras helpline. I really hope things impove for you soon, this pain seems neverending but I am sure you will get some benefit on a new drug soon.

02tkwillx profile image
02tkwillx

Thank you very much for that information

beckybooboo profile image
beckybooboo

Hello, Just read your post, have you thought about taking steroid tablets daily? Just a suggestion, it may take slightly longer to work but will help with inflammation all over your body?

I couldnt have a steroid injection due to high blood pressure, but thinking about it you could ask your rheumy nurse for a standard injection rather than straight into your joint??

Good luck, I so hope things settle for you, nothing worse than pain and having to go through it in 4 separate areas. Poor you x

02tkwillx profile image
02tkwillx

Hi beckybooboo

When I first had my flare up in sept 2014. I was put straight onto daily steroids. I took them for a month, then thought I weaned myself off them properly, unfortunately I didn't and had a terrible comedown. I was advised not to stay on them long term. I was on them while my DMARDS were getting into my system. I've also had steroid injections but they never done nothing. The only ones that work for me are steroids injections in the joints. But they are so painful. I have tried 3 different DMARDS now but none have worked. If anything I'm in more pain. seeing my consultant in March not sure what I will try next, but others have said biologics. I will discuss this with him. :)

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