Anyone having luck while taking methotrexate?
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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Please tell me more. Are you saying the Methotrexate has created vascular autoimmune conditions for you?
Hello @lindaadele I am now near the end of week 6 of MTX. 7th dose will be Sunday at supper.
My dizziness has definitely gotten worse, especially upon getting out of bed and most of the morning.
Had a telephone appt with Rheumatologist and she wants me to start tapering off prednisone (I am currently on 11 mg) 1 mg at a time every two weeks until 5 mg and then stay at that dosage until our next appointment end of July. I am also feeling kind of foggy in the head. A little spacey... for the most part I try to ignore all this and carry on as usual. If I get nervous I remind myself to just breathe ... it helps. How are you doing? Hope things are better for you.
Great hearing from you! this Wednesday I will be on my eighth week of MTX. I take 10 mg each week. On the day I take the MTX I do get quite dizzy and brain fog. After a couple of days I feel somewhat better. right now the two medicines that I’m taking are MTX and hydroxychloroquine only. I go to my rheumatologist a week from this Thursday. I still have joint pain. Unfortunately I don’t do well with any of these medication‘s and I’ve been on quite a few already For PMR. i’m hoping for the best and I like what you said about just breathing unfortunately I know all about Breathing but I always forget to breathe! wishing you the very very very best !!!
Hello @lindaadele I am so sorry to hear you still have pain. This is such a frustrating and sometimes disheartening condition! I find it very confusing yet interesting to read about all the different treatment plans that rheumatologist put their patients on. At times when I read about the drugs used and see that the rate of success when used for PMR is not great it makes me wonder. That said our bodies all react differently.
I do hope your rheumatologist will be able to help you on Thursday and that all this will be behind you very soon. Wishing you all the very best! 🤞🙏
I’m not sure if you got my last reply because I still don’t know how to work this website. I always love to hear from you and I always learn a lot from your post!!! I am still taking one day at a time and hoping for the best read which helps me a lot! wishing you the very best going forward!!!
How are you doing on your methotrexate? I am still taking one day at a time and hoping for the best and trying to be patient which I’m not very patient. The last time I went to my doctor I told her that I was doing a little bit better not much but a little bit it’s just working very slowly if it ever works at all we’ll have to find out going forward. At my last visit she increased my methotrexate from 10 mg a week to 20 mg a week of methotrexate. The one side effect that I seem to have is that once in a while I get lightheaded all of a sudden out of the blue. Are you having any side effects with your methotrexate? How are you feeling right now and how are you doing? I am still taking one day at a time and hoping for the best with this PMR it is no fun in my body does not react like other people to the medication‘s and then as I’m not doing me any good so I’m just taking one day at a time and we’ll see what happens. Wishing you the very very best moving forward!!! Love to hear from you!!!
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!
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!!!