Hi all. Just thought I'd update on how things are going since being told I was in remission and being taken off all medication at the start of December last year.
I've had a good spell since stopping the Leflunomide. I've enjoyed a lengthy period of being both pain and side effect free. Despite the winter weather I've done some long walks with my partner, and Margo (the beagle, my son's girlfriends’ dog).
But after a long walk a few weeks ago I noticed a return of some knee pain and stiffness, and since then my legs, knees, hands and feet have started to feel a bit swollen and stiff. I'm also getting mild pain in my hands and wrists. But it has been mild I wasn't sure if it was RA returning.
I saw a physio yesterday (for osteo in my knees). She has experience of RA and said she was certain it was RA returning and I should contact rheumatology ASAP to get it under control before it worsens.
I contacted rheumatology and the nurse I spoke to yesterday said the consultant left things that if I became ill again they'd try me on hydroxychloroquine and she would book me in for a 'medication training' or something similar....Never had that before for any of the DMARDS I've been prescribed previously. Is this a new thing, or unique to hydroxy?
Unfortunately, the next nurse appointment (over the phone) is a month away. To be honest I'd rather just start taking the hydroxy and be given a leaflet or self-research, rather than delay starting it for a month.
Anyway, it seems my period of remission has come to an end, but I've made the most of it. Hopefully this next stage will in time see me both pain and if I'm lucky side effect free too.
Thanks for reading and best wishes all. Seb
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Sebastian247
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I’m pretty sure I had no ‘training’ of any sort when I started hydroxy many years ago. It is important to get a baseline eye test with an OCT scan of the inside of your eye before you start x although some people seem not to be told that. I knew because my husband was an optometrist at that time (he has since retired) so it could be that that they want to tell you about but who knows.
I was prescribed a three month decreasing course of steroids at the same time , the idea being that if the steroids worked I could start the hydroxy but even that wasn’t made very clear and after a while I had to double check.
Hopefully you will get help soon before things get more painful.
Thank you. I had read about the eyesight risk on hydroxy so I will ask the nurse about that.
I seem to recall another poster here mentioning an appointment with a nurse to be instructed about meds prescribed after first diagnosis. I've been on three different dmards so far and never had to go through this.
A great idea in principle, but the nurse I talked to admitted there was a significant appointment backlog, so I do wonder if adding more appointments into the process right now, when they are under so much pressure is the best idea. Fingers crossed my symptoms don't escalate much over the next month. Cheers. Seb
I think hardly any side effects. Maybe a bit sick so I take at teatime. I don’t have any side effects now. I do get my eyes checked every six months as is suggested when taking hydroxy
I think it was because I was having serious side effects to the drug I was on at the time (Leflunomide), and had been ill on the drugs before that (mtx), and was symptom free, the consultant decided to give me a break from all drugs. I appreciated his concern and was happy to go along with it. Seb
Sorry your remission seems to have ended! Before Hydroxy I had to have an x-ray to check for TB and a thorough eye examination. I also had to have a lung breathing check at the hospital can't remember if that was before hydroxy or another RA drug. May have been for biologics actually. I have always had an appointment with a rheumy nurse when they change my meds. She just runs through how I am, explains about the drug, tells what what to look out for the side affects that could happenvand also gives me a booklet about the med.
Thanks Haz. As I said previously I've never been seen by a nurse about medication (actually never been seen by a nurse for RA at all). There's been no mention of xrays, just a telephone call in a month. But I'll ask about it and eye test during the call. Thanks for the info. Seb.
I don't quite understand the pronouncement of remission. As far as I'm aware, RA is controlled and not cured. The fact that in 3 months you have had your symptoms return suggests that it was not remission but that the drugs were doing what they are supposed to do and it's taken 3 months for your body to become ill again with the withdrawal of the drug (just as it takes about 3 months for the drugs to kick in). Is there a reason that you can't just take the Leflunomide again?
I agree with Fruitandnutcase that a course of steroids would boost your management while you're waiting for the nurse to get back with the DMARD. It helped kickstart my methotrexate. Perhaps your GP would consider this?
Thanks for your thoughts. I don't think the consultant was suggesting I was cured and I don't think that's what remission means. It was as a result of physical examination and scoring of pain and stiffness that my scores meant I was clinically in remission.I also had to go through a washout process to get the Leflunomide out of my system, as it can stay in the body for a long time. So I wouldn't have been benefitting from it over the following months.
The lef triggered a lot of weight loss (an eight of my body weight) and internal bleeding, and bowel problems. Hence it was stopped, I don't think they'd prescribe it again, and I'm not sure I'd want to try.
It was really just a combination of factors, the lef making me so ill it was stopped, being assessed as in remission, and having been very ill due to the previous medication (mtx) that the consultant decided I should have a break from all meds.
I don't think this approach is the norm, but having been so ill due to side effects I was happy to go along with it. But I doubt I'll be having significant breaks from meds again. All part of the journey i guess! Cheers. Seb.
Ah I see, I misunderstood. I thought you'd stopped the lef because the Dr thought you didn't need medication anymore. As I am doing really well on MTX and tolerating it so far, I would be very dubious if a Dr said it was OK to come off it...but your situation is very different. I do hope that your alternative DMARD is better tolerated. Your side effects sound horrendous!
I would have happily stayed on the lef had it not been for the side effects. That was true for me on mtx as well. I tolerated it quite well for 18 months and was symptom free and then frustratingly developed neurotoxicity to it. Many thanks and hope you keep doing well.
Something, like similar to change of weather or ? may have taken you out of remission. My daughter's Enbrel needed kick start with 15mg Methotrexate after being in remission with just Enbrel for 8 years, She visited Copenhagen in middle of freezing temperatures. That was for a week. When she returned, her remission was over after 8 years of peace!!
Sorry to hear your daughters remission ended after such a long time. You could well be right about what triggers an end to remission.I had half expected my remission to end, as it did last year when I paused taking methotrexate for three months, until RA symptoms returned.
Obviously whilst I've been in remission I've not been taking any RA drugs, so slightly different situation to your daughter.
I'm very grateful to you for pointing this out. It's given me food for thought. Best wishes. Seb.
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