Hi Does anyone suffer from polymyalgia and taking methotrexate? Are you suffering from side effects? My husband does and is. Had to come off it for a while and continue the steroids as the methotrexate was causing reduced liver function. He's back on it now as liver function returned to normal but he now has a blood clot in his thigh for which he is taking medication. He takes the methotrexate orally but considering injecting to hopefully avoid it going through his digestive system and causing further liver problems. Does anyone have any experience of any of this too and what are, if any, long term problems? He's 56.
Yes. All seems a bit experimental to me. He finishes with the steroids next month then it's a matter of getting the dosage of methotrexate right.... in the meantime more side affects ?
Methotrexate doesn't replace the pred if he has PMR - at best it will help him manage on a lower dose. The only thing that replaces pred in PMR is Actemra/tocilizumab, a biologic, a group of drugs that makes the side effects list of pred and mtx look like sweeties.
The mtx injections are used to reduce the nausea and other gastric problems that are common with mtx - as Snazzy says, doesn't bypass the liver. The injections can cause local irritation at the injection site. All drugs have side effects - you can't get away from that aspect.
If your husband is taking Methotrexate because he has polymyalgia I think in his case I would think twice about taking it if it is causing problems. Methotrexate has not been fully proved to help steroid reduction although it does seem to work for some people and not for others.
I could not get along with Methotrexate or any of the other steroid reducing drugs - unfortunately! I am still on steroids, but hoping after 8 years to get off sometime. It is just trial and error and a good Rheumatologist. Good Luck!
Concerned that your husband "finishes with the steroids next month". If he is still suffering PMR, that is to say, if he is not fully in remission, not simply steroid induced remission, he can't finish with the steroids. Nothing "cures" PMR, except maybe tocilizumab. Pred only controls the symptoms, hopefully at a very low dose with minimal side effects.
Hmm all very interesting.He's been on steroids since he was diagnosed almost a year ago. When his specialist got him on the methotrexate he was to gradually reduce the amount of steroids until he stops taking them completely next month. But we shall both be seeing her soon armed with a notepad and pen asking all the relevant questions regarding possible alternative treatments to methotrexate. I'm concerned that it has caused the blood clot in his thigh and has affected his liver function. Having said that we know people who have taken methotrexate successfully for years without any problems. I guess it affects different people in different ways but I personally don't think it's suitable for my hubby. Thanks for all the feedback everybody.
Methotrexate is the first line approach for RA. PMR is not RA - corticosteroids are the mainstay of management for PMR. I would want to know what makes the rheumy think that mtx will replace pred - has he changed his opinion about the diagnosis and, if that were to be the case, why has he not had the courtesy to mention that to you.
Is the rheumy confident your husband just has PMR - or may he have more widespread large vessel vasculitis/GCA where there is an increased risk of DVT and other cardiovascular problems n the first year. DVT as a side effect of mtx is listed and classified as rare - but that doesn't mean it doesn't happen. If it happens to you it isn't rare...
They did take a while to diagnose him because being only 55 it seemed unlikely that it would be and until it struck he was and always had been extremely fit active and sporty. So the final diagnosis is early onset polymyalgia rheumatica. Yes we are aware that the methotrexate although as you say rare will be the cause of the clot. No previous history of anything.
The guidelines say "over 50" - many of us on the forums were in our early 50s and some of us took a long time to get a diagnosis. The reason it is claimed to be rare in younger people is because they are not looking for it. Or decide it is fibro (laziness there), "your age" for women, depression and a load of other things. And it is also far less common in men. I still don't think it is a good excuse though - we have the symptoms, we have something.
Hello, I'm on this site for my mom. She takes the Metho and pred and it has helped her get down from the high dose of pred. She started on 40mg and now just going from 10 to 7.5. I was surprised her doctor isn't making her go more slowly from 10-9, but he is having her go from 10 to 7.5 for a month and then from 7.5 to 5. She seems to have good days and bad days. What were the symptoms your husband was having with the liver?
Hi. It was the routine blood test which showed his liver function was down. He had no actual symptoms. He was off mxt for about 5 weeks having regular blood tests until the 3rd 1 showed his liver was back within the 'normal range'. Then he got the blood clot in his thigh 😩
Just confirms why I am avoiding mtx. My rheumatologist wants me to take it, switched rheumatologists. My liver values have been above normal at times, don’t want to make a bad situation worse. I am 54.
Thanks Kath. Glad I came on here with my concerns. You've all convinced me that it's not the solution for my hubby.
I took methotrexate as was unable to reduce prednisone and due to other problems was not doing well on higher doses of prednisone. After I stopped it because I became very immunosuppressive I was started on azothioprine, which seems to be doing a similar job but without the sickness and hair loss I suffered with with the methotrexate. It might be worth asking about starting with azathoprine as an alternative to methotrexate.
Best wishes
Thankyou. Yes will ask about that. You mention hairloss.... hubby has lost all the hairs on his lower legs. Not caused any sickness but he feels completely washed out and unwell on methotrexate day 😩
Last year, before having any problems with PMR my GP did routine blood work, and liver enzymes were up indicating a fatty liver. She didn't believe me that I don't drink, but that's another story. I just personally feel that with the blood work I had done then was an indication that something wrong was "brewing" in my body. Anyway this was last July/August, then in August September I believe were the first tell tale signs of PMR and just diagnosed with PMR the beginning of this month. I have been on 20 mg of pred @day and 10 mg of methotrexate weekly, and folic the day after methotrexate. I feel a wee bit off the day of taking the methotrexate but the next after taking the folic acid I feel back to normal. I a blood work done 2 x for liver and all is OK. But then each person reacts differently.
Apparently Italians have done research showing that coffee can help fatty liver. It doesn't have to have caffeine in it, either, it's something else in the coffee which is working. In the Italian context they said five espressos a day would be good.
I have weened myself off coffee to a latte 2 x a week, I don't know since I started feeling ill with PMR the coffee just didn't agree with me. But in the last 2 blood work for the liver one in Feb and one 2 weeks ago after taking Methotrexate my liver is normal.
I don't think I've ever had a latte. Just plain coffee with a dash of cream (can't manage black). But it's great your liver is normal again now anyway!
Raised liver enzymes are often found in PMR, especially alkaline phosphatase (I think , haven't time to check). Has she not heard of non-alcoholic fatty liver disease?
I can also tell you that last year sometimes I would get these stabbing pains a bit from under my left breast, and mentioned this to her, she told it was pain from my fatty liver. I brought this up with my new GP and he had this small smirk on his face when I mentioned what she said. My new GP pointed out that this area is were the spleen is and overly active from my immune system. Amazing how some doctors have become doctors.
Never ceases to amaze me which lectures they slept though or decided were irrelevant. Like anatomy and physiology...
Hi. Yes the pred and methotrexate along with folic acid are definately working for the pmr. It's just that the blood clot and and liver being affected are more of a concern now. I'm sure in time with experimenting with dosages and changing drugs things will settle down.
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