Hi all, I'm UCTD, and for about five years, I've been a full dose (2 x daily) of hydroxychloroquine. I've been having a flair more or less since lock-down started. Normally when this happens, I get a Depo-Medrone injection (methylprednisolonen), which settles me down anywhere from a few months to a couple of years.
The flair is getting worse, so I've finally gone ahead and booked an appt. with the rheumy. Last time I had a flair, he suggested that in the future he might want to switch me too methotrexate. (He said that for some people the hydroxychloroquine loses its effectiveness after awhile.) I'm reluctant to switch to methotrexate because of some of the side effects, and that you can't drink any alcohol on it. (I am partial to sharing a bottle, or even a little more, with OH.)
The COVID-19 situation is another concern. I've read that people on methotrexate are at higher risk of complications with COVID, and have heard the same about steroids (both injections and oral).
My question is, does anyone have experience of methotrexate? And steroids? Which has the worst side-effects? And how does COVID factor into it?
(Although I've not been shielding, my OH is doing most all of the shopping, etc.)
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Jaybz
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If you want experiences with methotrexate and steroids you will get loads of opinions on the PMRGCAuk forum. The only drug that works for us is pred but some rheumies have this thing about using mtx to get us to lower doses of pred - except there are no guarantees and it just doesn't work for some of us. That is probably different for you as they just want to switch one drug to another.
My personal experience is that I have no problems at all with permanent oral pred and no identifiable adverse effects - but then we are all well up on how to avoid them in the first place or manage what does turn up.
Methotrexate - I had none of the expected adverse effects, all it seemed to do was cause so-called steroid adverse effects that I'd never had before, whatever dose I was on! I was permanently hungry (never a problem with pred), gained 2lbs in a month, bruised worse than usual, my hair fell out in clumps despite folic acid, ached as much as I had with PMR untreated with pred and the fatigue was unbelievable. That was what I couldn't take. It is common to feel fluey the day after taking the mtx, my only good day was the day i was due to take the next lot of mtx at night!
Thanks PMRpro. So you're saying that in your case, the steroids (even the oral ones) were more effective and you had fewer side effects than with methotrexate? Vain as I am, I don't fancy gaining weight and having even more hair fall out!
Fingers crossed the rheumy will sort me with something without too many side problems.
I also wonder what options I'll have available due to COVID.
Problem is you are comparing apples with pears. PMR isn’t the same as UCTD. The question is what does the research show is more effective for UCTD? Steroids are used in PMR because there is no proven alternative, Rheumatology is moving away from long term treatment with prednisolone due to the adverse side effects.
Hi I’ve been on Methotrexate for past 4 years with no side effects what so ever but know that this is not the case for everyone- when I was first diagnosed I literately had 1 flaire after another and was put on steroids for 6 months that eased the pain but not the swelling. Hope you get sorted soon x
I had Covid and HCQ has neither helped or hindered. I have now been taken off HCQ to allow my immune system to finish it off. Only because i am on day 63 And I still have the persistent cough. But my chest is clear and lupus bloods normal.
I think HCQ has been hero and villain depending on study during Covid
I have been in HCQ for 11 years and have found no lessening of impact.
Methotrexate was not my friend but my mother in law thrives on it.
I found with drugs it is very personal to each person.
Hi I take Methotrexate 10mg once a week. I also take hydroxychloroquine 200mg x 2 daily (Plaquenil) so I'm immunosuppressed.
I think you call it shielded in Britain. My Covid restrictions therefore are more stringent than others....no visitors inside my house, no mixing with people or shopping centres.
I visit my family for weekly driveway coffee! I sit in the car and they sit on camp chairs at a distance and we have a chat. Throw kisses when I leave! I can only sit WITH them if we all wear a mask and I don't want to put them through that so I'll leave the current arrangement in place for much longer. My doctor is my guide for all this. I live in Australia and it is early winter here and I'm advised it will probably be like this for me until the end of winter.
So if you are on similar meds you also are immuno compromised so you need medical advice on your limitations also. Isn't it just great!!?? 🤣
My rheumatologist doesn't like me to have prednisone long term hence the methotrexate. She likes to have that as a reserve for sudden major flareups.
There are differing opinions aren't there? Keep us up to date! I have R.A and Sjogrens and query lupus, but not fibromyalgia.
I am on MTX, which had allowed me to go into chemical remission for about 1.5 years now. I was on Pred for about 6 or so years.
From the start it has been said that 20mg of Pred and above is not good. Then long term use of 5mg and above was not great either. At the start of lock down I asked my consultant if I could take Pred for a couple of weeks as I thought I had a chest infection so came off my MTX and was getting quite sore. He said please please please do not go back on to Pred, data is coming back telling us that Pred slows down the body's ability to removal Covid from the lungs.
In recent days scientists have also said that when they have looked back at data from Covid SARS - those that were given steroids had a poorer outcome.
If I was still on Pred, and I was on it for about 6 or so years I would just remain super super cautious.
With regards to the MTX my GP told me that there is a notion that some of our immune drugs including MTX help stop the cytokine storm. The story about the immune suppressing drugs are not new. As we all know they were investigated at the start of this Pandemic. Other scientists think MTX is neutral. So I guess the story is not clear.
Me I am going to keep taking my MTX - it has given me my life back. And as a scientist I am going to remain super careful in my actions.
I am on 20mg of MTX injections, 7mg of Pred and Hydroxichloroqiune and I am still in an ongoing Lupus Flare but apart from feeling quisey after injecting I have had no other side effects.
Firstly remember we are all different. I have Lupus but I do understand UCTD. I've been taking Hydroxychloroquine for fifteen years, steroids the same and for the last five years Methotrexate.
Lupus was something I knew nothing of when diagnosed in 2005 and so the sudden 'repeat prescription' was a shock. I also have APS and have needed warfarin.
Hydroxycloroquine appeared to give me no side effects and until January this year I was on two a day. Recent spinal fractures and a weight loss that took me under the need for two due to body weight which now only allow for one a day. Only problem with this drug is that a brand reacted badly, Quinoric. I now use Zentiva or Black Rock only.
Prednisolone was originally 12.5mg a day for some years until control was gained over the SLE & APS. I was then weaned slowly down to 5mg. Side effects again were zero. I disagree with many who consider that 'steroids' actually put weight on us. Steroids we need aren't anabolic steroids. I've read plenty over the years and apart from being very useful in keeping internal swelling down I believe that prednisolone helps to actually keep weight on us in the right way. What with the simple, but painful, vomiting, diarrhoea, and flares we suffer it's hard to see how anyone wouldn't lose weight, not gain weight with bad health.
Methotrexate isn't nice. I started on 15mg then raised to 20mg then 25mg. The 25mg put me off food, dropped to 20mg which I managed for a while and then finally dropped to 17.5mg. All tablet form. I take it Monday, Folic acid 5mg every other day. I take 4 × 2.5mg tablets Monday morning and 3 × 2.5mg Monday before bed. Tuesday appetite isn't good and nausea has to be ignored. Not always easy! By Wednesday all symptoms are disappearing. This was taken due to advanced osteoarthritis being found. Or should I say a doctor finally took note! Forgive my cynicism. I also have the condition in lower spine and have had rheumatic and arthritic problems since childhood. I'm 52 now.
I do know many have had an awful time with side effects. Nothing is easy but symptoms needs to be got under control. Enjoying a drink is your choice. I sincerely, believe me, would love one and need one sometimes but after fifteen years and lots of problems my tum is not friendly so just be cautious please.
As for Covid19, sorry if annoy anyone but I was fully diagnosed initially by a haematologist for SLE & APS after many years of serious problems being ignored and I do not agree that we, due to Lupus, are sitting waiting to be infected by every virus that comes by. I have never had flu & apart from a dry cough and mild hayfever symptoms rarely suffer more that a sneeze. As long as we don't panic, keep clean, eat at home and don't put yourself at risk of sharing an infection then keep your mind strong and keep safe. Read as much as you can about your concerns. Opinions from medical sites and patients all vary, and share your concerns with your doctor.
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