Restarting medication

[Sebastian247]

Hi all.

I thought I'd update on how things have turned out on my changing, pausing and restarting medication.

I posted previously about changing medication after being diagnosed with neurotoxicity to MTX, after a year of feeling ill, despite it totally controlling my RA.

I was switched to Leflunomide in July but paused taking it because when I previously paused the MTX for a month, I had no return of RA symptoms (I restarted taking the MTX simply because I felt I ought to). And I wondered if somehow the disease has 'gone away' (I know what a daft idea!).

It's now 3 months since I last took any RA medication, and I was really beginning to think the disease had magically gone away (or burnt itself out as a few clinicians have put it). Over the 12 weeks I did get the occasional twinge but very mildly and it never lasted.

That was up until the last week when I started getting some symptoms of RA returning. This weekend it escalated further to the point it was obvious I needed to start taking medication again (painful knees, swollen hands and feet).

It was probably a stupid idea to not start taking the Leflunomide as soon as it was prescribed, in the vain hope the disease may have 'gone away'. But given how strangely it started (immediately following the first covid vaccine) I was prepared to try. And I wanted to be certain that I needed to take RA drugs for the rest of my life.

So, my experiment is ended, and I started taking the Leflunomide on Sunday. I know it may take a while to work (assuming it does work...) and in the meantime my RA symptoms will likely worsen.

I don't regret pausing the drugs, especially after being so unwell previously on MTX. For a period, I felt totally back to normal, pre-RA, and it's been great. But now it is obvious the RA hasn't gone I know I have no choice but to use medication for the foreseeable future.

I did tell rheumatology what I was doing, but never had any response. I also told my GP who was understanding and supportive.

Thanks for reading and best wishes all.

Seb

[medway-lady]

Be warned LEF can make you feel worse for the first few weeks then it just worked for me. Remission achieved then for years and it worked better than AZA, Etanercept and Abatercept ever have done. It was stopped due to an unrelated AKI but if I was allowed it again I'd be so happy. I'm not sure how long it might take for it to work for you and indeed it may not but it took 12/14 weeks for me but so worth it.

[Sebastian247 in reply to medway-lady]

Thanks - that very helpful. it sounds like you did quite well on it for a while (AKI?). How did the Lef make you feel worse initially?

[medway-lady in reply to Sebastian247]

It hurt a lot more and un able to cut up food. Dreadful then I woke up one morning about a month in feeling well. First time for years! The world was really sort of normal then by week 12ish it was back to a normal life. Walking, dancing, gardening I had energy and no pain or swelling anywhere at all. AKI is kidney injury unrelated to LEF but with a low function it’s not good. And I mean low like 20 %. That impacts on nearly all medications now. Even antibiotics so life changed for good. But I stress not RA related just life.

[WilfDog in reply to medway-lady]

I'm sorry to hear your kidney injury has had such an effect on your life Medway-lady. Such a shame given you were doing so well on the LEF. I hope your RA doesn't escalate now you are off the meds. xx

[hazelcats]

Am wondering about time scales of drugs remaining in the system? Of many meds I am told it can take 3 months before positive effects can be felt. So my thought is maybe you felt ok for a period meds free because the drug was still in your system and keeping symptoms at bay until it all left your body?Wish you well on the LEF. Its getting your head round that we are in this for the long haul that I find hard sometimes.

[Sebastian247 in reply to hazelcats]

Thanks hazelcats. I read that MTX gets out of your system quite quickly (a week?) unlike Lef which I've read can take months or even years and sometimes requires another drug to flush it out more quickly. I could be wrong there though.

Yes, I agree - I guess I have been fighting against fully accepting I have RA. The neurotoxicity to MTX was just another nightmare (honestly as bad as RA, in different ways) and I suppose I'd had enough of the disease and the treatments. But now I just have to accept I have it and get on with treatment. Many thanks for the encouragement. Best wishes.

[medway-lady in reply to Sebastian247]

I’m sad for you but another way to look at it is that it in not life threatening and treatable just not short term. If you fight against things you can’t change all you do is wear yourself out. There are no prizes for being bent, twisted and being in constant pain but you might win one being in remission and running the race of life. Try not to think of it as life is over but that medications are your new friends who can enable you not hinder you. Diagnosis is a shock but I was relieved as it wasn’t what I thought it could be so stay positive and look forward to remission and life just going on as usual. Not everyone achieves remission and some go through a good few medications because there is no one size fits all but travel with hope rather than angst which is not good for the soul, blood pressure or mental health. Xx

[Sebastian247 in reply to medway-lady]

Thanks - such wise and inspiring words. I used to be very physically active (extreme sports were my thing, rock climbing, mountaineering, caving, all over the word, I was pretty good at it too). I had a pretty rotten childhood, lots of time in hospital, multiple surgeries, but over came it all to achieve more than most could imagine. I guess that experience made me a bit of a control freak, and I feel I'm not in control. But your advice is spot on. Thanks.

[medway-lady in reply to Sebastian247]

My son climbed Everest so I know about adrenaline junkies! But tore his Achilles tendon just walking along a canal footpath. So life throws us all a few curved balls. lol xx

[Sebastian247 in reply to medway-lady]

Wow - that is an amazing thing to have accomplished (Everest, not the tendon!).

[WilfDog in reply to Sebastian247]

Wow. That sounds fun and exciting. I'm sure you have great memories. Doing those things will have given you resilience, so put that strength into fighting your disease and not letting it win. Like Medway-lady said, be positive. Good luck xx

[Amnesiac3637 in reply to medway-lady]

Good advice!

[WilfDog in reply to medway-lady]

Spot on...good advice xx

[Peacox]

thank you for posting this, I’ve found it really interesting. I’ve had a bad four years after moving & changing hospitals/consultants. And two years on MTX begging the consultant to help me as the side effects have been as awful as the RA, and sometimes worse! Of course, it’s helped the RA enormously. But each week before injecting the MTX I’d be in tears, knowing that at least two days of illness would follow. I’d already tried all the other DMARDS & sadly couldn’t tolerate them either, so my consultant said there was nothing he could do for me! He grunted & gaslit me. I went to PALS etc but nothing changed. He injected steroids into a joint that didn’t need it, sent me for endless useless scans. I think he was trying to be seen to be doing something. Anyway, after he didn’t turn up for my 6 monthly appointment (he’d booked the day off as annual holiday but hadn’t told me) I cracked, broke down and asked to change consultants. The admin at the hospital were surprisingly helpful. I had my first appointment with my new consultant yesterday. Glory be! He was wonderful. He listened to me! And he said that there is no way I should be living with such severe side effects from the MTX. He has taken me off the nasty stuff & the relief is incredible. His idea is to keep me on the Hydroxychloroquine (I’ve been taking that since 2012) and just wait a few weeks/months to see how it goes. If my RA runs wild again he will then put me in biologics (I did all the blood tests yesterday to get the screening out of the way, in case it’s needed). BUT crucially he said that the best case scenario would be that after being on MTX for a couple of years, my condition may have levelled off, and in that case I will be able to manage just on hydroxy. How amazing that would be!! So it really is watch and wait. It’s a bit scary as I was in a lot of pain & could hardly walk or grip before I finally got the MTX (that was another story). But the sheer relief of knowing I’m not going to be so very unwell for half of the week each week for the foreseeable future, is amazing! I’m so sorry this is so long! But your post is so interesting after everything I’ve been through these last few years. Thank you!

[Sebastian247 in reply to Peacox]

Thanks for sharing your experiences. It is such a shame, and frustrating when individuals within the NHS don't support patients as they should. Your experience of MTX sounds similar to mine, although it worked so well in controlling my RA it was disappointing when I couldn't keep taking it.

But that's not really the issue. It's how rheumatologist respond to patients in those situations that really matters. And we've both had less than ideal help on that front.

Great to hear you've finally got the support and care you need and deserve. Hoping you keep well going forward. Best wishes. Seb

[Peacox in reply to Sebastian247]

Thank you. And good luck with yours. I hope the Lef works well for you. All best wishes.

[WilfDog in reply to Peacox]

I'm so sorry Peacox for your horrible experience with your old consultant. It has been critical for me to always have a good relationship with my rheumatologists, and something I vehemently bang on about in my book.

Your new consultant sounds brilliant. We should all be listened to.

It sounds like the best thing your old rheumatologist booking a days leave. It has done you a massive favour. Good luck with the hydroxychloroquine. xx

[Peacox in reply to WilfDog]

Thank you x

[JenniferBut]

Totally understandable to trial stopping, good for you. All the best with the new drug, I hope it provides relief for you soon.

[Sebastian247 in reply to JenniferBut]

Thanks. 😀

[WilfDog]

I'm sorry your remission wasn't longstanding Seb. Hopefully, the LEF will kick in quickly and you can return to some sort of normal life.

Isn't it strange your symptoms appeared after your first covid jab. I have had five covid jabs and I'm due for another but I don't think I'm going to have it for fear of it causing other problems.

Good luck and let us know how you get on xx

[Sebastian247 in reply to WilfDog]

Thanks. It was strange. Possibly coincidental, but the rheumatologist initially thought it was a temporary reaction to the vaccine. Unfortunately didn't turn out that way. I've continued to have the vaccine, but absolutely understand your concerns. Being out of the medication routine I forgot to take the meds this morning! Keep well. Seb.

[WilfDog]

Such a shame for you. I suppose you'll never know and have to navigate life with what you have now. Good luck. xx

[Vonnie69]

Very rare to go totally in remission. Please checkcwith your rheumy

[Sebastian247]

Thanks. Rare indeed, but happens for some lucky few. I'm waiting on a 3 month follow up appointment with rheumatology, which is overdue. Hopefully soon. Best wishes.