1. < Polymyalgia Rheumatica (PMR)

Anyone having luck while taking methotrexate?

Posted by lindaadele @lindaadele, Mar 23 4:57pm

I have been on my third week of methotrexate tablets. I take 5 mg each week. So far every medicationI have been taking for my PMR are not working very well for me they work until they don’t work!!! Right now I feel worse taking this medication then I did before I took the medication !! Any information that you can give me would be very much appreciated as I am really getting pretty frustrated with this whole PMR thing which I have had since April 2023. Thank you very much for any help that you can give me at all!!!

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naveiraps | @naveiraps | May 31 12:02pm

My hands go numb a lot too mostly when I’m trying to use them

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gsm1 | @gsm1 | May 31 2:27pm
In reply to @pdxmac "I have been on it since early Feb and have had only one issue - I..." + (show)
@pdxmac

I have been on it since early Feb and have had only one issue - I had to give up all alcohol due to acid reflux. Don't love that part but it's only until I kick this PMR completely. And in the meantime I have no pain just occasional stiffness. I have been able to titrate down from 20 to 10 mg over the course of 5 months.

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I was on MTX for about 6 months. It helped me get down to 4mg of prednisone but any lower I would relapse to hurting shoulders and hip pain. I am pretty much pain free. I can go to the gym and play pickleball if I don’t push it too hard. I am 75 and have been taking prednisone for about 15 years at a dosage of 5 mg. The MTX was affecting my kidneys so my rummy told me to stop taking it. My kidneys are now back to normal function levels. My rummy is allowing me to stay at 4 mg of prednisone . So far so good for the last 5 months.

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lindaadele | @lindaadele | Jun 1 8:28am
In reply to @lindaadele "Great to hear from you! Right now the only thing I’m taking are methotrexate and hydroxychloroquine...." + (show)
@lindaadele

Great to hear from you! Right now the only thing I’m taking are methotrexate and hydroxychloroquine. Neither one is really doing such a great job for me as I’m not very good with any of the medication‘s I’ve been given for PMR. I hope things work out well for you and you keep feeling better and better all the time! My very best wishes to you for a speedy recovery!!! keeping in touch sounds great to me!!!

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How are you doing on your methotrexate? I have been taking 20 mg a week just like you were doing along with hydroxychloroquine. I still have side effects from the methotrexate. The worst ones or dizziness and loss of appetite which is no fun! I see my rheumatologist in three weeks and will see what she has to say. Some days the pain is a lot better than other days it is a little confusing to me! I’m just wondering what her next step will be because I’ve been taking methotrexate for three months already. This whole experience is absolutely no fun!!! How was your appetite and do you still get dizzy? I hope things are going well for you!!! I would love to hear from you!!! my very best wishes for you to get better and better and better each and every day!!! looking forward to hearing from you soon!!!

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cs48 | @cs48 | Jun 1 3:40pm
In reply to @juliemcgee62 "Im taking Methotrexate and it works..just takes time." + (show)
@juliemcgee62

Im taking Methotrexate and it works..just takes time.

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Inflammation too much, Rheumatologist has started Methotrexate 20 mg weekly. I am to start today. worried for too many side effects . Is it safe to take.

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kare1 | @kare1 | Jun 1 3:51pm

For me,( on prednisone since end of march 2025 at 15mg for a month then began the 12.5 for 2 weeks then 10 mg for 2 weeks & now stepping down to 9 mg for the next 2 weeks), I started Methotrexate 15 mg once a week on May 4.I’ve felt no ill effects w/it. Rheumatologist wants the prednisone lower as I have osteoporosis (72 yrs old!) I agree! Prednisone was a miracle after less then 2 days so I appreciate it but I don’t like what it’s doing to my body. Sigh. Because I didn’t get to exercise early on in Dec 2024 -March when I finally got on prednisone I am weaker. Taking a 3.5 mile walk today was not as robust as my old days. I have to be kind to myself & know that it will take some time to get back up to speed (I hope).anyway I’ve been told it takes Methotrexate several months to work. Not sure if Metho is to replace prednisone?

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lindaadele | @lindaadele | Jun 6 9:30am
In reply to @michik "Hello @lindaadele I was thinking about you this morning and thinking that I was going to..." + (show)
@michik

Hello @lindaadele I was thinking about you this morning and thinking that I was going to send you an update and found yours waiting for me. :o) Thank you. I am so sorry to hear that you are not seeing much change. Are you also on prednisone? If so what is the dosage at the moment?
The rheumatologist had put me on 20 mg once a week of Methotrexate followed by two days of Folate. This was about 9 weeks ago. At the time she put me on it I was on 12 mg of Prednisone and she wanted me to decrease that by 1 mg every two weeks. As the weeks progressed with the methotrexate I started to experience more and more side effects. Dizziness, foggy brain, headaches, nausea in the afternoons, a very painful ulcer at the back of my tongue that would not go away and increasingly severe irritability, which is just not me! So I put in a call to her. She called me back and instructed me to stop taking the Methotrexate for 3 weeks, at which point she will call me back. If all those symptoms have disappeared by then it would indicate that it was indeed side effects of the dosage and she will consider putting me on 10mg methotrexate instead. Well fortunately all of THOSE symptoms are now gone. I am down now on 9 mg of prednisone but some stiffness has returned to my neck and shoulders and a bit in my left hip. Not near as bad as when it all started a year ago ... but still .. no fun and somewhat discouraging !!! So there you go ... it's a bit of a rollercoaster!!! So like you .. one day at a time ... trying to stay optimistic that this too shall pass. Trying to accept the changes in my body due to ageing .. it is to be expected .. and I want to age as gracefully as possible, accepting that it is part of the journey and the process our finite bodies have to go through. Some days easier said than done. I try to focus on being grateful for everything I do have that works. I can walk, I can hear, I can see, I have a loving family and am lucky to live in a beautiful area in BC. So I do have lots to be incredibly grateful for.
I send you warm wishes and hope that your PMR journey becomes easier and easier. Lets keep in touch!

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I thought that I would give you an update on my situation with methotrexate. My dizziness got so bad that I ended up in the ER and was told by my rheumatologist to stop methotrexate. my next appointment is coming up soon and I am going to tell her I am not ever going on methotrexate again or hopefully none of these medication‘s because unfortunately they do not work for me because of my body. I don’t want to scare anybody else away from methotrexate because most people have absolutely no problems with methotrexate and they’re very happy with it. Let me know how you are doing and methotrexate and how you’re doing in general with PMR I would love love love to hear from you!!! my very very best wishes to you for a speedy recovery from PMR I hope that you get better each and every day!!!

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