Changing meds.

[Sprite60A]

had to give up Methotrexate due to liver problems, although it was working reasonably well, a two week break and then on to Leflunomide.

Nine weeks later in really severe pain in knees, wrists and hands. How can a medication take 9 to 12 weeks to work, which is what the tell me, without any sign of the pain decreasing? And if Leflunomide isn’t working for me is it going to be another 12 weeks before we see if that works as the tell me at the clinic all RA medications do? Don’t think I could stand it.

[medway-lady]

This happened to me the pain in my hands got worse, then after few days it just went away and remission for years. Give it a few more weeks.

[CallMeSunny]

can you request a tapering dose of steroids to tide you over?

[netballnow]

As CallMeSunny I asked for steroids while waiting for meds to take effect. Rheum had no objection and it worked. Bare with it as I appreciate how it is affecting you physically and mentally.

[bpeal1]

Unfortunately the medication does often take 12 weeks to work. However, when I’ve been in similar situations I’ve had a IM steroid injection to tide me over. Contact your rheumatology team. If you don’t let them know how much you’re struggling they’ll assume you’re ok.

[Evie3]

Poor you. Think most of us have been there😞….the pain is off the scale when on nothing. I know steroids arent good for our bones but when needs must…my Rheumatologist gave me steroid infusion over 3 days which kept me going whilst new meds started to work. You shouldnt be in pain….ring the Helpline or your Dr. Take care

[flowerlover]

Make sure your rheumy team know how much pain you are enduring. I would be surprised if help with a course of steroids wasn't suggested. As soon as it was accepted that methotrexate was not working for me I was given a course of Pred while waiting for biologics to start. The Pred was then slowly tapered after starting Adalimumab & by the time the steroids were finished the biologic had kicked in.

Good luck

[Samwise91]

Thanks for your post, Sprite. I am in a similar position but very old - mid 80's! ?Elderly onset RA.

So sorry for those young people keeping a life together with the dreadful pain and disability of RA - I'm beginning to experience this once more - along with abdominal and other problems .

Had a TKnee Replacement last summer and been in trouble since. Knee a mechanical success...However had to be admitted Acute Medical Unit London hospital Jan. as unable to dress - eating a problem etc. Local hospital did not want to know and impossible to get appt. with GP - so taken to Tertiary hospital in London where they admitted me for 10 days and did many tests ... medical care excellent. Been on Methotrexate/Prednisolone etc. and previously plus Hydroxychloroquine, (quite high doses for old woman!) - since Jan. 2023. Gradually, helped a great deal with pain, stiffness etc. but many adverse effects arisen including continuing lack of concentration etc. More recently had to reduce medication because of number adverse effects including 'steroid induced diabetes and eye problems' and now liver and intestine investigations - '?medication induced' - possible carcinogenic - See local G. Intestinal specialist coming week after FIT test +ve. London rheumy specialist applied for Biologics 2 weeks ago but not sure now how successful that will be. Such difficult choices. A lot more non animal research needs doing as can't 'extrapolate' from animals to humans in all dimensions - as witnessed by this excellent service - thank you NRAS.

[oldtimer2]

Let the rheumy team know how much you are suffering. If the specialist nurse is not helpful this time, ring them every few days and be a nuisance. Don't just suffer in silence or they will think that you are coping. If you are not, then tell them over and over again!

[Sprite60A in reply to oldtimer2]

Thank you Oldtimer2. I hope my appt won’t be like that but I’m not discounting the possibility.