PMRGCAuk

Methotrexate anyone?

Hi All- I have been reading through different threads and appreciate everyone's input. Navigation of the blog has been getting easier for me, thankfully, however I am currently looking for a thread which discusses Methotrexate. I thought I recalled reading about that topic early on in here, but if not, I guess I'll start a Methotrexate-themed thread in the ongoing PMR discussion. (Wondering if there is a way to do a word search in this blog?)

On Tuesday June 27, I was prescribed 10 mg Methotrexate once a week, to increase by 2.5 mg each week until I'm at 20 per week. I'm currently at 10 mgs pred and doing "ok" at that level. Actually I was doing amazingly well at 11mgs pred, so 1mg taper made a big difference. My CRP is 2.4, a jump up from 0.8 in May ("normal " 0.0-0.7) My ESR is 18 ("normal " 0-20) significantly down from 82 ESR in March. I've had PMR since January of this year but not diagnosed till mid March when I started on 20 mg pred.

My rheumatologist says the Methotrexate will help me taper off of pred more quickly. My knees are pretty swollen and painful in the mornings. Shoulder and arm pain too. Feel "normal " about noon or 1:00 pm with some leg stiffness if I sit too long. She thinks rheumatoid arthritis. I also have advanced osteoporosis and anemia, even after iron and B12 regimen since March diagnosis. Bone strengthener pill once a week.

Until age 58, I was never a drug use person. Supplements and herbs were fine. but I've regularly resisted taking meds. Probably took aspirin or Tylenol once or twice a year, so taking Fosamax for bones once a week. and daily pred for PMR is all new territory for me. Then she introduced Methotrexate!!! Yikes. Just not wanting to take yet another drug.

It's one week since rheumatology appointment and I'm just now reading up on it. I haven't taken a pill yet. Does anyone have experience with this med??

Appreciate any /all feedback, good, or bad. And ideas for how I might proceed. Thanks in advance!

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Hi Joanna, If you look to the right of your screen you should see related posts that you can click on. I don't have personal experience of Methotrexate. I just know it is a steroid sparing drug that some doctors think is a better option. I empathise completely with your aversion to being on a number of drugs. I was similar to you before hand in that I avoided taking anything, now I seem to be dependent on Pred. And Thyroxine to name two.

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Thanks SheffeldJane. I guess we're all in the same boat here with having to take meds, and I'm trying to accept this. In the same way I'm trying to accept having PMR.

I only access this website/blog on my iPhone and don't see related topics on the right side, so am thinking I may have to try a computer which may show different displays. I appreciate your help. JJ

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There is a box at the top right of my page on the computer with "Search PMRGCAUK" as well as the side bar with related posts. That allows word searches.

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Hi JoanJo. I am on Methotrexate weekly in order to help me taper the Pred (on 11 mg Pred, tapering to 10 mg next week - reducing by 1 mg per month at the moment). The one side-effect I have really noticed is with my hair - it now comes out on my hands when I wash it and on my brush. It now looks very thin and I can see my scalp. Quite demoralising but if it helps me lower the Pred and get my normal face and body back - I look like a pregnant hamster - I will put up with that. X

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I have been taking mtx for about 12 weeks now,a weekly injection of 15mgs.I live in Spain where they seem to prescribe it right along with the Prednisone from the beginning, when, it is said to be more effective.I refused it, mostly because of what PMRPro told me, that there have been two clinical studies done, on the effects of mtx on PMR , the results were that it didn't make any difference ..the mtx did not improve the effectiveness of the prednisone in PMR.

I had a very rocky start on 20mgs of Prednisone which after 6 months had not lowered my markers at all, so a new rheumatologist put me on mtx, which after 8 weeks, did normalize my CRP and ESR for the first time in 2 or 3 years.

I'm not sure its the mtx that helped or not, I'm currently at 7.5/8.5 mgs of pred and feeling ok.I recently wrote on here about it, I wanted to ask people with experience taking it, how they felt. I found there are not that many PMR people that take it. It's not approved for PMR by the NHS, at least.

The side effects of mtx, at least for me, are much worse than the Prednisone.I found that it is hard enough to know whether the symptoms I'm having are from PMR, from Prednisone side effects, from pred withdrawal or from over- doing activity..it's important to learn the difference.

Methotrexate, it's true, seems to be helping me taper but I can't be sure if it's just due to tapering with the very slow method recommended on here and not the mtx.

The prednisone for PMR is only for lowering inflammation and to make life bearable while the PMR is active.With the side effects of Mtx, it kind of defeats the purpose, imo. But I must also say that the mtx side effects ( for me, painful diarrhea after each meal, nausea, horrible fatigue and more,) have subsided some.I guess your body gets used to it and stops rebelling against it. I hate having to make this decision to take mtx or not. I don't see my rheumatologist till mid September.I feel like I'm poisoning my body with mtx for nothing but can't be sure. I tend to think that if the NHS hasn't approved it for PMR, it might still be because there isn't enough evidence to warrant it's use.

Not sure if anyone can give you any advice on mtx here.Its because most people on the forums are British, they don't take mtx.

Hope you make the right decision.I m still deciding.

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Gaijin, I think the NHS must approve of Methotrexate for PMR - certainly I am prescibed it alongside Prednisolone (to help with reduction of Prednisolone)

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I'm sorry Bennifred, I meant that it isn't the protocol and in the NHS, they only approve of it for steroid - resistant patients . .But if it isn't prescribed at be very beginning, apparently it isnt effective a steroid sparing agent, apparently..so it's a mystery!

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Oh - I haven't heard that before. I wasn't prescibed Methotrexate from the beginning, but it is certainly helping me to reduce the Prednisolone, whereas before I just could not reduce without terrible pain.

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There aren't many of us on here that take mtx for PMR, I'm pretty sure. I was prescribed it from the beginning, I refused it at the time.N my case, on paper, it looks like it is helping, my markers stayed raised till I started on the mtx 7 months into the treatment with prednisone alone.

You are lucky that you can feel the mtx working for you. Im thinking of going off it but can't decide, as I don't know if I'll be able to taper as smoothly as I am doing now.

The dose of Methotrexate for PMR is very small, compared to the dosis needed for cancer and other diseases but it gives me pretty bad side effects that last the first three days after in give myself the injection. It seems to me like it's defeating the purpose of the prednisone..

Thank you for sharing your experience with mtx. ..I feel a bit more sure that mtx is actually sparing steroids.

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Hello Joanjo and welcome

I was "offfered" Methotrexate approx 2 years ago by my 12 ish year old Rheumatologist!! She made a huge mistake though when she said " take this once a week, and you will be sick!" Nitro glycerene to my ears as I have 1 phobia and it is emitaphobia ! Fear of being sick which controls my whole life! I declined the offer. So that's pretty much all I can say about it really, not very enlightening I'm afraid.

Oh I have PMR and RA and Osteo!

Ho hum

🌺

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"My rheumatologist says the Methotrexate will help me taper off of pred more quickly"

It might. But then again, it might not. And it won't help you taper "off" pred if it is (just" PMR you have, it may help you get to a lower dose, if you are lucky. I have a friend who takes it, has no side effects at all, has the occasional alcoholic drink with her doctor's blessing and is sure it allows her to be at 7mg pred rather than a higher dose.

An Italian study showed that while methotrexate did lead to patients managing on lower doses of pred (it changes the way your body metabolises it and enhances the effect) that did not affect the incidence of pred-related side effects and whether they took mtx or not, one third of patients were still on pred at 6 years. The paper actually mentions the idea that PMR is a benign self-limiting disease and warns: it isn't always. As long as the underlying cause of the symptoms we call PMR is active there will be symptoms without pred. Nothing else replaces it, if it did, they would use it, not pred.

However - there is a caveat: your doctor thinks you have RA. And that is a different matter altogether. Methotrexate is the first line drug for RA. It takes some months to work there but if it hasn't achieved something after 6 months they usually stop and try something else. In RA pred is only used to manage flares until the DMARD (Disease Modifying AntiRheumatic Drug) kicks in and is doing its job again.

So if she is right and you DO have RA - the methotrexate will help you reduce the pred dose. If you take it and have no side effects - fair enough. If you take it and it knocks you out for 2 or 3 days, you feel nauseated for more than just a few hours, whatever side effects appear, then that is a different matter again. I do know of people who take their pred on Friday night so they will be better by Monday morning to go to work - they spend the weekend feeling as if they have flu. But since they are in the USA they need their job to pay for their medical care.

I don't have that problem - but I wouldn't fancy spending 2/7 or more of my time feeling ill when I know that by reducing slowly I can get my pred dose down to physiological levels (under 8mg) without taking mtx. It is a very individual decision. I wouldn't be happy taking it for PMR. If I had RA, that would be a very different thing altogether.

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Hi,

I was on Methotrexate for about 9 months. I didn't find any benefit at all from the drug. I moved to a different Rhumy and after discussion we decided to stop the Methotrexate and start Leflunomide. Since starting Leflunomide I have found my recovery times after exercising to be much quicker and far less pain the next day. So Methotrexate was no good for me but I have a friend who suffered from pmr for 6 years and it was the Metho that finally got him off steroids.

I think you just have to try different approaches to find the most suitable one for you. Everyone reacts in a different way to these drugs.

I had no side affects from the Methotrexate though.

Hope this trial works for you

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Here is my two cents regarding the use of methotrexate. I have been on it since April 1 to reduce my prednisones, which I could not get below 20 mg at that point. Today I am at 10/12.5 dose, happily I can say.

I'm not going to say it was an easy road as I took the pills as prescribed which to begin with seem to be 4 one week then six the next week, current dose still six per week in the beginning - I was quite nauseous, I was very very sleepy when I took all six pills at the same time. So I changed my dose as per suggested to three on Saturday three on Sunday and I am much better. I did have one horrible week where all my joints hurt I took an anti-inflammatory, upped my prednisone that week and then presently back down to dose stated. I'm actually going to go have blood work done soon to see what my markers are but the road at first was rough and now I'm happily down to almost 10 mg which was impossible for me before methotrexate

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Hello Everyone Who Replied to my Methotrexate Questions-

I appreciate all of your comments, insights, suggestions and experiences with it, and will really have to weigh whether or not I want to pursue this course.

Long term, I'm thinking "what is the harm in pursuing pred reduction without Methotrexate and seeing how it goes?" I haven't started taper from 10 yet. But will keep in mind the 10 percent reduction rule.

If I were to start on mtx, hearing all these side effects, I would ask Rheumy if Its ok to start with 2.5 mg instead of 10 mg just to acclimate body to it. In meantime, I want to pursue info on the Leflunomide too.

Again, thanks to each of you for your time and effort responding, to give me perspective and good information.

JoanJo

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My first bout with PMR was diagnosed as Ra. The Md here on the USA used Methotrexate as Prednisone mAde me throw up blood. He insisted i stay on the Mtx or I would loose my joints. It took at least 6 months to reduce the pain to manageable and after 2.5 years it seemed to be hurting me and I stopped all meds. I was pain free for about 10 years. Now I diagnosed as PMR and am okay on Prednisone with a good meal. Probably a smaller dose then originally given. I am starting Placqnil and will see how that goes. I have been sick a year and just had a flare and trying to be pain free again at 15 mg.

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Sounds like a very rough road, Ronswife. Is Methotrexate a standard treatment for RA in the US, are you aware? (I live in the US as well). I'm not even sure I've been diagnosed correctly with having RA. What I'm experiencing in the mornings just seems to be part of my PMR symptoms, because by 1:00 or 2:00 pm (sometimes by noon) each day, when the pred is really taking effect, and after limbering up, I'm able to do long flights of stairs, sit/stand etc with little or no pain in my knees. If I had RA, wouldn't they be swollen and painful all day long? Thanks for sharing your experiences.

JoanJo

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I think methotrexate is a first line approach for RA all over the world - and it has been used for nearly 30 years in RA:

"Methotrexate (MTX) is now the most popular drug worldwide for the treatment of rheumatoid arthritis. Low-dose, weekly MTX (10 to 25 mg/wk) used as either monotherapy or in combination with other drugs has a superior efficacy profile as defined in placebo-controlled trials and comparable efficacy to other drugs including anti-TNF therapy. At 1 year, one third of patients on MTX have no radiographic progression and even greater effects are seen when combined with targeted biological therapies. MTX is well tolerated; gastrointestinal toxicity is the most common toxicity with rarely bone marrow, lung, or liver toxicity. MTX therapy has been a major advance in the treatment of rheumatoid arthritis and is now the cornerstone of therapy."

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I wonder if I even have RA. Im needing to read up on it more. If I don't have RA , there's no point in taking Methotrexate.

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It does help some people with PMR reduce their pred more smoothly and some feel to lower levels.

Ask your rheumy why she thinks RA - I read your original post again find it a bit confusing. Is she blaming your stiffness after sitting on RA rather than PMR? It is a totally typical symptom in PMR, myogelosis some doctors call it. For me it would set in after about 10-15 mins sitting still but it was worst after travelling in the car. I had to practically unwind myself to straighten up and walking was almost impossible for about 3 or 4 minutes. It was slightly better if I was driving - different seat position and always moving a little changing gear.

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You hit the nail on the head. Oh my goodness --long trips are awful. It's comforting to hear this because so often I feel like a freak. On July 1, my husband's family reunion was a 4+ hour drive to South Dakota. He mocks me at rest stops saying it looks like I have a corn cob up my butt. How rude!! If he only knew the pain and stiffness we feel. Thank goodness for cruise control though when he was too tired to drive. I could keep my legs moving back and forth a little more.

Yes, I think my rheumy was basing her RA assessment on my knees' condition at my early a.m. Appointment. Early morning is NOT the stellar time of day for a PMRer!!!😫 She should know that.!

I also think she wants the mtx to help lower my CRP which jumped from 0.8 in May to 2.4 in June. Is there a natural route (diet, more exercise, supplements???) for lowering CRP ?

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Not if it is due to PMR - all those things may help but no-one has really managed PMR successfully the "natural" way.

I trust she checked the CRP a week or two later to see where it was going. Have you had a chest infection? Or any infection if it comes to that.

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No I have not had any infections .

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RA "commonly affects the wrists and hands" --not in my case at all. So I'm not going to try Methotrexate till I get through my next taper to 9 mg pred and see where my markers are at the end of July. Thanks for your help PMRpro and Everyone Else contributing to this dialogue.

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Another penny's worth...if feeling sick and dizzy, but taking the folic acid prescribed in order to reduce side effects - try folate (metafolin) instead. Apparently it's nearer to the folate you get from food. It worked amazingly for me. Apparently there are some people who don't synthesize the 'chemical' version. Also step up intake of foods containing folate. Always stop taking folate day of MTX dose - folate stops the drug from working. As well as not taking the metafolin on the dose day I also limited folate-containing foods, though this is not strictly necessary on our doses - only if you are taking mega amounts. Not sure if doing this helped with hair loss. I also took supplements which I think helped there. MTX did help me reduce quicker. I needed to take MTX because DEXA scan showed osteoporosis getting worse. Otherwise Rheumy wouldn't have prescribed it. Good luck everyone on MTX!!

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I'd say that advice was a pound's worth. I greatly appreciate that kind of "healthier route" info and even wondered about natural folate vs chemical pill. Thanks for the insights and suggestions. If and when I do start on mtx, I will keep in mind all of what you said. Thanks!

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