Hsp/iga- methotrexate medication : I've been... - Vasculitis UK

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Hsp/iga- methotrexate medication

Ravi35 profile image
11 Replies

I've been given methotrexate from last week, as the steroids prednisolone And mycophenonlate are not making a difference to my condition.

Has anyone had methotrexate and how did it make you feel? I am feeling even more drained and ill. Don't know how much more I can take.

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Ravi35 profile image
Ravi35
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11 Replies
Lupylass profile image
Lupylass

I'm on methotrexate and it helps. It did make me feel ropey over the first few weeks for a few days after taking the methotrexate.

Now I feel unwell the day after the methotrexate but great for the other 6 days. It's really working for me and I can live a fairly normal life thanks to my current drug regime.

Ravi35 profile image
Ravi35 in reply to Lupylass

That's positive good news to hear, giving me some hope.

Jase222 profile image
Jase222

Hi I took it and it made me really ill and unable to get out of bed had to change to mycophenolate but

took weeks to get over it had fevers

And stomach probs

Sorry to here you are feeling ill.I was on same medications felt a bit unwell during change but Methotrexate has been really good for me and hope it continues.Hope after change you will begin to feel better

JanetR profile image
JanetR

Hi Ravi, I've been taking methotrexate for more than 2 years now, and it's working for me. I sometimes feel a little dull or woozy on the day after I take it, (15mg per week) but okay generally. I started off at the beginning of treatment with 6 x large intravenous doses every 2 or 3 weeks, then I injected myself with 15mg liquid for about a year a think, then went onto tablet form as the condition stabilised. I really hope you can find something that works for you.

lovestocook profile image
lovestocook

Hi , I have been injecting mtx for 12 weeks . Don't feel much different yet but also understand it takes a while to work . I couldn't tolerate the tablet form and easily inject myself . Worth trying as I have heard some good results . Good luck

Maudy1 profile image
Maudy1

I felt really awful on it, was on 25mg tablets and then injections. It also didn't work well enough so came off it, Both methotrexate and azathioprine made me feel unwell, but the methotrexate was worse but then I was on a high dose and lots of people have great success with it. Everybody is different so you need to try the different drugs to see what works for you. Good luck.

Ravi35 profile image
Ravi35 in reply to Maudy1

Thank you

ryjaro profile image
ryjaro

I am on methotrexate and it seems to suit me i have no complaint feel a little nauseous for a couple of evening but nothing dreadful i can cope with it. hope you get your medication sorted for you soon. good luck xx

Ravi35 profile image
Ravi35

Thank you

Christophene47 profile image
Christophene47

Hi Ravi, I realize your post is from 4 years ago. It is true that I was not doing well just on prednisone with confusing unclear diagnosis of PMRGCA and/or C-ANCA + vasculitis; Had a temporary loss of vision in left eye for several minutes; vision returned. Later I was referred to a neuro-ophthalmologist who ordered duplex doppler of both eyes. The left eye central retinal vein could not be visualized; thus a conclusion it was blocked. My rheumatologist at the time responded by adding methotrexate 1 × week @15mg. I don't think it did anything helpful.

Later I searched for another rheumtologist who was not happy with me being on it; a hematologist I was also referred to also disapproved the methotrexate pointing out it killed healthy cells, was cytotoxic and could cause lymphoma and leukemia in the pt. population with vasculitis, already vulnerable to blood cancers. On their independent recommendations, I stopped it on June 8th. Within 2 days, I began to feel much less musculoskeletal pain and got 85% of my energy back.It may have been a coincidence, but I also had a bad reaction to Azanthopine and stopped it. Now just on 8 mg. Prednisone and much better.

In medication, one drug does not fit for all. I hope this is light at the end of tunnel, but I don't want to speak too soon. I am better off without it.

Hope you are doing well. ????

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