wondering if anyone with PMR has used methotrexate as a steroid sparing drug?
I was diagnosed with pmr in july of 2017 and started with 20 mg,s prednisone and I'm down to 10 mg. prednisone now...with blood work coming back higher and return of pain in shoulders hips and low back...for a month now.
Today my rhemy told me I need to try methotrexate as the damage from the prednisone is worse than the side effects of methotrexate.
Any thoughts on this or anyone tried methotrexate?
Thanks
There are a few people who have tried it. If you do a search you will find discussions. I take another dmard and after 12months I am still on 9mg going down to 8mg using Dsns. It's a big decision and it depends on you not the rheumy. They cant make you take anything. The unwanted effects of pred aren't as bad as previously thought so you may be okay taking low dose pred.
In my opinion, there is too much emphasis on getting off of Prednisone. I was on a low dose of of Prednisone for several years prior to my GCS with no side effects. 10 -15 mg or less of Prednisone daily usually causes very little in the way of side effects. Methotrexate was a chemotherapy drug with a long list of side effects and has not shown to be helpful with GCA or PMR. You can tell your doctor that you prefer to do Prednisone only if you prefer. I'm on 70 mg of Prednisone daily, starting 60 mg tomorrow. If I get it down to 10 mg daily, I will be happy to stay there. ☺
Hi there,
I was on Methotrexate but the side effects were too bad to carry on. I even tried the epipen variety but again I suffered side effects. It made me feel worse not better. However, we are all different and you may get on very well with it.
Liz.
I was diagnosed with both GCA and PMR on 31st July last year and started on 60 mg of Prednisolone, then 40 mg after 4 weeks. Twice, when I had tapered down to 25 mg, I had recurring GCA symptoms and had to go back to 40 mg. The second time (just after Christmas) I was also prescribed Methotrexate, 10 mg per week at first, increased to 15 mg per week in February. At my appointment in February the rheumatologist advised me to reduce to 25 mg pred per day from the beginning of March. I actually took this in 2 stages and went down to 27.5 mg for a month before finally reducing to 25 mg in April. So far, so good as far as my symptoms go, but I really don't know what effect, if any, the Methotrexate has had and I'm in 2 minds about continuing.
To me, 10 mg pred seems quite a low dose and it clearly isn't adequate to reduce your symptoms, so you do need some kind of adjustment. As countless others have said, some doctors seem to exaggerate the drawbacks of using steroids. I would have thought that an increase to say 15 mg per day was worth trying. Certainly if you did take the Methotrexate and it didn't help, you'd be justified in stopping it and asking for an increase in pred.
I should have added that I haven't had any nasty side effects from Methotrexate. It's just that I'm nor convinced it's actually helped me.
Tried methotrexate. No side effects. But it didn’t help either. Nada
If you try methotrexate and it doesn't work for you, could you request Actemra?
Hi Carol
I’m on Methotrexate, I’m currently on 7.5mg Pred; my PMR is either in remission or under control.
I’ve had PMR since October 2011 & on Pred when diagnosed since February 2012
I’ve written about my experience with Methotrexate before, l kept a copy so will copy below.
I’ve recently been diagnosed with Secondary Adrenal Insufficiency, curtesy of Pred & am now waiting to see an Endocrinologist, my Rheumatologist is happy for the Endo to change the Steroids but insists l remain on the Methotrexate at this time.
Mrs N 💅🏼
My Experience with Methotrexate
I'd been on Prednisolone for a couple of years but could never get below 11mgs while I was working so l decided to retire early to see if I could get the dose lower.
I had two separate big flares & my Consultant at the time put me on 30mgx1week; 20mgx1week; 15mgx1week; he did this twice within a couple of months. It was from then on that things got out of hand & I had to keep going back to 20mg as 15mg was no longer holding the PMR at bay, it must have been about for around 10months, to be fair my GP was beside himself with worry, he eventually got me a referral to a new Consultant who started me on the Methotrexate. I really was not overly keen on this but by now I'd packed on 3stone & could barely walk without getting out of breath & my BP was through the roof & my resting pulse rate was 100+ so there was no choice but to try it!
I had the bloods & X-rays done then started on 10mg Methotrexate once a week for 2weeks plus Folic Acid 5mg on the other six days, then increasing the MXT to 20mg once per week.
At first it was unremarkable but after about four weeks I suddenly started to find the smell of cooking made me nauseous (on MXT day) l tried changing it to take at night but still the nausea persisted if l smelt food cooking, l was offered injections but declined so l changed my MXT day, took a simple antiemetic, kept my food simple & within a week or so the nausea passed.
I came down 1mg per month & happily got to 7mg when unfortunately l was diagnosed with Breast Cancer, so the Methotrexate had to be stopped for Surgery & then Chemo.
For about six months post Chemo the PMR held at 5mg but then as it started to raise its head again, l went back to 7.5mg & asked for a re referral to the Rheumatologist, she started me back on the Methotrexate at the end of October & I'm now at 6.5/6mg l remained longer at 6.5mg as we were going on holiday & l wanted to be stable & not rocking the boat for a 0.5mg drop.
Methotrexate is not an easy drug but then Prednisolone is a double edged sword, at first it did me good but then it started to cause me other issues. There are several people on this forum who've had bad experiences with MTX but I can only tell you my story & for me it did what the Doctors wanted.
That's why when the PMR started flaring again, l was happy to increase to 7.5mg but I chose to ask to add in the Methotrexate again, this time with no issues whatsoever.
It's very much a personal decision but for me it worked, I've experienced Chemotherapy since so Methotrexate for me second time around was an easy choice.
If you do start it I hope you do well & if it doesn't suit you it can simply be stopped, no need to wean off it.
Don't forget to the take your Folic Acid as prescribed, my Consultant recommend's the other six days but other people have differing protocols.
If you have any specific questions please ask on the forum or direct message me using the two speech bubbles at the top of the page.
Best Wishes & Good Luck 🍀
Mrs N
Was she specific about ‘the damage’ from pred? Because I’d want to know what she was referring to. Are you osteoporotic? Have your blood sugars gone haywire? Have you got cataracts? High BP? What exactly.
If you’re in pain, then you need more pred, not less. Methotrexate isn’t going to act as your pain killer.
I think that if you’ve dropped 10mg in 10 months, then you’ve done well, maybe a little too well. Were you feeling ok at 11mg? 12mg? That’s probably where you should be.
Direct comparison is not necessarily good between us as individuals, but.... I started 20mg in April, dropped to 10mg by December, flared and had to go up. Now at 8mg after 13 months. Quite similar to your journey thus far.
If you consider that the average is 5.9 years for PMR, why does your rheum think you should be lower than 10mg after 10 months? What’s the point of prescribing pred if they don’t actually give it the time required to do its job?
Hi carol, similar story to yours. Had pmr since 2014. Every time I got below 7mgs pred I had a huge flair. I was never really pain free under 10 mgs. My consultant suggested methotrexate which I refused to take, for about a year. In desperation I decided to try it. Started me on 10mg to see if I could tolerate it, then up to 15mg once a week. Folic acid twice a week. After about 6 weeks I realised I was feeling much better. No claudication in legs and I could move more freely. I have been on it now for about 18 months . I had got down to 5 mgs of pred but unfortunately had to increase to 10 because I had suspected gca. (The jury is still out on that one). If you have regular blood tests there should be no problem. I do have the odd glass of wine and so far so good. I know it doesn’t suit everybody but it’s helped me a lot.
Hi Carol, I woke up 1 morning with PMR, in January 2016. Last year my doc added methotrexate weekly, folic acid, to 8mg prednisone. I didn't think it helped me at all so I stopped it, realized just how much it is helping. I don't have any side effects with it, unlike prednisone. I am now a type 2 diabetic and have high cholesterol. I recently started the dead slow method to reduce prednisone and will be on 7mg by mid May. It's going really well. I've also switched to a plant based diet and will start consulting with a plant based cardiologist(trying to ward off cardiac issues). I don't post very often but have found this forum very helpful.
Hi Carol, I was changed onto Methotrexate after 4 years of being on Pred and I was worried about what I had heard but I felt really good on it for a couple of years until I had to have a 4 hip and knee operations so I had to come off it and go back on pred, I have never gone back as I am having more ops but luckily I was told my PMR had finally burnt itself out so I am off the pred now and 3 stone lighter.I hope you and anyone reading this feel better soon or at least have some good days.
I wouldn't agree with him about pred (I have no problems after nearly 9 years of pred) and nor does a top PMR/GCA expert from the Mayo clinic. It isn't just anecdotal, they have done a study:
practicalpainmanagement.com...
medpagetoday.com/rheumatolo...
are 2 different slants of the report about the same paper.
Methotrexate seems to work better when given within the first month - a top GCA expert in the UK seems to think it isn't as worth it trying much later in a reduction. I know a couple of people who credit it with being able to reduce their dose of pred. One, however, required leflunomide in order to get off pred. And when that happens - my very suspicious mind asks if it was PMR or only PMR in the first place.
My feeling is that if you can take any of the so-called steroid sparers without any adverse effects, then it is probably worth the try. But if they make you feel worse - then it definitely isn't.
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