Methotrexate
Posted , 8 users are following.
ive been advised to take methotrexate so that I can taper off the steroids!
im looking for some positive feedback and support please
0 likes, 12 replies
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Notes on Methotrexate
EileenH anne28129
Posted
I'm sorry I won't sound very postive overall. But this is the reality for many.
What I can say is that I think it is worth a try to see if you can take methotrexate without problems. However - whatever your rheumatologist suggests, there are no guarantees that mtx will get you off pred altogether. It doesn't work in PMR on its own, only in conjunction with pred but using it may smooth out flares and it may allow you to get the same effect from a lower dose of pred. I have a friend in the PMRGCA charity who used mtx for a few years and is sure it helped her get to taking 7mg/day instead of 9mg/day. She was lucky and had no mtx side effects at all so there it may have been worth it. She was never able to get lower than that however so her doctor suggested trying leflunomide and within 8 months she had been able to taper off the pred altogether but was still taking the lefunomide. More recently she has had a flare - and is back where she was before mtx and before lefunomide.
I tried mtx and it was a rather horrible experience for me - I felt as if I was flaring, my hair came out in clumps, I itched and bruised which I don't normally despite being on anticoagulant therapy as well as pred. And the fatigue was overwhelming. I couldn't function and stopped after a month - the fatigue improved after a week or two but it took more than 2 months for my hair to stop falling out.
Where mtx may well work well is if it isn't PMR or isn't "just" PMR. Often PMR can be a forerunner of an inflammatory arthritis and then mtx WILL probably help a lot. But it will take time - most rheumies allow up to 6 months to see if it helps in arthritis and what studies have been done with mtx in PMR found it took a year for any significant difference in pred dose to be seen. When the patients were followed up after 5 years it was found there was no difference in the pred side effects experienced by the two groups. To do that patients are exposed to the not inconsiderable adverse effects of mtx itself.
I'm explaining my view because I believe we all deserve to be informed about what we are letting ourselves in for and my experience over the last 9 years has been that there is a great deal of dispute about the use of so-called steroid-sparers. One rheumy will swear by the use of mtx, saying he gets very good results, mine does and he is one of the circle of world experts in the field. Another world expert I know doesn't rate mtx at all but thinks leflunomide is wonderful.
It seems you takes your pick - and try it and see. Maybe it will work for you where it didn't for me.
anne28129 EileenH
Posted
EileenH anne28129
Posted
It is all mixed up together - of course you feel confused. And as far as I can see they don't provide good advice for PMR plus mtx patients - it seems better for rheumatoid arthritis patients.
How long have you had a diagnosis? Did you start with PMR and GCA follow on? Or did they arrive in tandem?
There is some evidence that starting mtx within a month of diagnosis does help quite a bit but delaying it beyond then doesn't seem to work as well.
How long have you been at what dose? The headache should resolve within a few days, week at most and if it doesn't you probably need a higher dose to start with. Yes, I know that sounds awful - but that is the case.
EileenH
Posted
I've just looked back at a few of your posts - you have tapered from 40 to 7mg in under a year., no wonder you have a flare. You started on a relatively low dose for pred and have gone to a very low dose very very fast by anyone's standards. As I understand it - adding mtx now is a bit late, it makes more sense to use pred and reduce the dose in a sensible way. But it is your rheumy you have to convince - and I am only a patient, not even another medic.
anne28129 EileenH
Posted
I was diagnosed with both PMR and GCA last November and put on 40mg of steroids.
Gradually I tapered down to 7mg as I really didn’t like the side effects and I seemed to be doing ok until about a week ago when the headache, jaw ache and high blood pressure returned! My doctor put me on 30 mg of steroids and I was seen by my Rheumatologist within 4 days!
They have taken x-rays and further blood tests and booked me into a Mxt clinic in the next two weeks.
The Rheumatologist is suggesting I go on to mxt and taper the steroids at a rate of 5 mg a week up to 10mg. I will need two weekly blood tests to make sure all is ok! He seems as though he believes it could work! And, like you say, it’s worth a go 😐
EileenH anne28129
Posted
He may believe it will work - but I am exceedingly sceptical. I have never heard of an approach to reducing pred after starting mtx like that. If mtx worked they would use it and not pred. They don't.
You might manage 5mg per month - I really doubt you will manage 5mg per week.
Mrs_Hobbles anne28129
Posted
I'm a bit confused as to why, if you're having a GCA flare, that your steroids were only increased to 30mgs!! I'm not surprised that you still have the headaches and jaw pain at that level, and more inflamation building up as 30mg isn't knocking a jot off it! 60mgs (or higher) is the unusual dose for GCA and for flares!! There is also evidence that within the first 18 months of GCA, that there will be flares. Even your starting dose of 40mgs was low. Having reduced to 7mgs in 10 months is very far, very fast, again which will almost definitely lead to flares. Personally I'd be asking my rhumy to shelve the idea of the Mxt and just put you on a higher dose of pred, for a few weeks, till everything had settled and then start to reduce slowly from there. All the best with whatever action you choose!
jean05221 anne28129
Posted
Hello Anne
I have Refractory GCA & PMR
I tried MTX 4 years ago for 3 months alongside 60mg Pred.
I was monitoring my eGFR (kidney function) with each weekly dose on the advice of my GP.
I was able to reduce the Pred by 10 mgs each month without symptoms or flare up.
However, with each dose my eGFR fell significantly until , at 29 eGFR, both my GP & myself
contacted Rheumy to say I was stopping the MTX.
A second opinion consultation confirmed that stopping the MTX was the right thing to do as MTX can cause kidney failure/problems in some patients.
I'm sorry this isn't a positive comment.
There's a lot of "try this" or "maybe that will help you " around tapering Pred.
Like Eileen, I ended up back where I started - at 60mgs - and have found, after 4 years of tapering, slowly & carefully is the answer.
I'm now at 16.5 mgs and at some point, will probably have to accept that I may have to take a lower dose for the rest of my life.
I feel this is manageable as on lower doses I feel better within myself & my symptoms are under control, most of the time.
Whatever you decide to do, all the very best.
J x
anne28129 jean05221
Posted
I’m so confused!
If they do fortnightly blood tests then that should ensure that any damage would be spotted!
jean05221 anne28129
Posted
Hello Anne
Yes - regular blood tests highlighted things for me which needed attention.
I had monthly blood tests for eGFR & inflammatory markers.
3 monthly whole blood count & liver function.
Annually - Thyroid function(which was well below norm about a year ago & I now take medication), Vitamin D & other things my GP wants checked.
It's a bit of a nuisance having all these blood tests, but worth it if anything is spotted.
I do hope you can feel more at ease with tapering more slowly. We all go through it - trying to hurry the process - but it never works and we end up back where we started,
At the moment I'm reducing by 0.5 mg every 4-6 weeks BUT only if the bloods are ok AND only if I feel well & have no symptoms.
Also, it's possible to have good blood results and still have symptoms.
NEVER ignore the symptoms.
Eileen has written many times -"Symptoms trump blood results" and for me that was true on several occasions.
Don't feel bad about being confused. We all feel that way at times.
Hopefully you can discuss with your GP/Rheumy, then decide what you're going to do.
Then go forward with a positive outlook.
Take good care of yourself
Jean x
ptolemy jean05221
Posted
jean05221 ptolemy
Posted
Hi Ptolemy
Yes I do - I forgot about that one.
I am very well looked after at my GPs surgery.
I'm so grateful for that when I read of other people's struggles with
their GP.