Flare up of RA

[Sarmita50]

I had remission of RA for years. Now my joints are so painful that I feel difficulty in typing out the words, I have distorted right toes for last 18 years.I was pn MTX and HQ. they discontinued the HQ for the last 12 months. My rheumy did not see me since November , 2019. I keep on ringing my GP asked me to contact them .Wrote an email to the head nurse. They said they will be in touch in 10 days but no response yet.My Gp prescribed Naproxen to tide over. Can you suggest a good medicine which I may suggest when I see my rheumy.This delay may cause harm,My second vaccine is on next Thursday.Hope that does not cause problem because now I have this flare up.Thank you so much

[Amy_Lee]

I am very sorry about your condition, it must be very painful to go through this again after in remission for years.

Since I have been in remission for years, my rheumy did mention to stop either Mtx or leflunomide, I think it may be better for me to continue both at the minimum doses instead. It is hard to imagine to be in such a pain again.

[Sarmita50 in reply to Amy_Lee]

Thank you Amy. Now waiting for my medicines to be reviewed

[Amy_Lee in reply to Sarmita50]

Hope you can get back into remission again soon. The painful and depressing disease is suck.

[MoniqueB]

I'm so sorry to hear that you're experiencing a flare. I know how painful flares can be. Before I had an official diagnosis of RA, my only painkiller was Naproxen prescribed by my GP. Later, when I was waiting for my medication to take effect (methotrexate, and then later adalimumab) , I found a long-acting steroid injection helped reduce my pain. The good thing is that it only takes a few seconds to administer. Perhaps this is something that you could request?

If you're in Britain, it might help to call non-emergency 111 if your pain is intolerable.

As far as medication goes, there are a lot, including DMARDS and biologics. See the following link:

healthline.com/health/rheum...

I hope you feel better soon.

[Sarmita50 in reply to MoniqueB]

Thank you so much for your advice Monique.I will have to wait . Because of Covid everything is behind but all your well wishes cheer me up

[LoneEra]

Ah, I feel your pain. While you wait for rheumatology, you could ask for a short course of steroids to see you through. Naproxen has its place but for a true flare, steroids are your friend.

As for longer term medications, it seems like you haven’t yet tried sulfasalazine or leflunomide. We are all different. But those are two DMARDs that many people have found effective and could be worth chatting to your rheumy about.

Please also chase up the rheumatology department. Don’t suffer in silence!

Hope you feel better soon x

[Sarmita50 in reply to LoneEra]

No LoneEra, I am chasing them up via email. They are looking into my triage form which I filled up via email but said it may take a few days. I did not know two medicines you mentioned Sul & Lef are they painkillers or long term meds like MTX ? I will mention them to my Rheumy but there is no chance of seeing him.They talking about telephone consultancy and I do not know when.But thank you very much

[LoneEra in reply to Sarmita50]

Good plan. Sulfasalazine and Leflunomide are disease modifying drugs, so yes, a bit like MTX. Really hope you can speak to the consultant soon and get the ball rolling x

[Boxerlady in reply to Sarmita50]

It might be worth you ringing the NRAS helpline as they'll be able to advise on how best to communicate with your rheumy team and what you should be expecting from them as well as what medications are available.

Help from rheumy teams seems to be very patchy but I've been very lucky and have had f2f appointments as well as telephone consultations throughout the pandemic so it's worth finding the best way to work with your team to get the help you need.

[LEFAURIEUX]

Has this flare started since you have had your first vaccine?

[Sarmita50 in reply to LEFAURIEUX]

I had my first on January 15.Did not have this flare immediately after that but three weeks later.The second one is due this coming Thursday,Hope i will be Okay. Never know what affects us as RA patients.Thank you for your response

[Joya_banerjee1 in reply to LEFAURIEUX]

I had my first vaccine on Jan 15 and these symptoms developed 3 weeks ago.

[GordonEdin]

As others have said, a one-off steroid injection can be very effective in quickly suppressing a flare. However, a GP will probably not be willing to give you this without instructions from the Rheumatology Dept.

Was your HQ stopped because it was causing side effects or blood test issues?

If not, and it seemed to work before, maybe you could suggest to your Rheumatologist that you try going back onto that? - rather than a new drug with unknown effectiveness for you.

Anecdotally, I have been on 8 methotrexate per week for many years. A few years back my consultant considered cutting back the dose. I made the minimum change to 7 per week. Seemed OK but after about three months I started to have problems which went away when I restarted the full dose. So even a small change can have an effect and I would be inclined to argue for a trial dose reduction before completely getting rid of a drug - unless it was causing serious problems.

Regarding the vaccine, I found the following link.

sps.nhs.uk/articles/using-c...

which seems to say that it is important to get the vaccine even if you are having a flare but that, if you have a choice, it might be worth delaying steroid injections for a couple of weeks after having the vaccine - because steroids suppress your immune system and the vaccine might not work quite as well if you get both at the same time. I'm sure that the nurse or doctor would discuss that before giving you the steroids.

[Joya_banerjee1 in reply to GordonEdin]

Dear GordonThanks a lot for your thoughtful reply.They stopped HQ because I had a remission and HQ can have adverse effects on eyes. I was on it for 5 years. My eyes are Okay and I stopped HQ about a year or so. But there was no review of medicine since then. I had e a review from the RA head nurse. My last annual review took place in November 2019. I think trial drug idea which you suggested is good but I did not think of it but I will bear this in mind.

I am taking Naproxen now. I used to take ibuprofen during flare ups but they stopped prescribing it since I had a pacemaker implant in 2014. This is a new drug for me and I am taking it ease my pain before I get a chance to see a Rheumy . Hope this won't be harmful for my heart but I have no choice!

I have distorted and painful right toes since my first attack of RA ,18 years ago now my hands are affecting. Finding difficult to lift the electric kettle, brushing teeth , typing, turning keys etc as my right wrist is playing up. Don't know whether I should use a splint to around my wrist to give a support and trying to hold things with both hands. I know I should not be exercising my wrist which may make it worse.Thank you for your tips .Yes I will take my second dose of vaccine on Thursday.