Update again

[Wrexlu]

For those that have been reading my posts I thought I would write a little update.

I finally started on the methotrexate and so far have taken 4 doses of it. I am having one side effect of sleeping all the time and wonder if anyone else suffers with this?

I have a referral to see an opthamologist but my appointment isn't until 10th June. By which time my eyes will be well and truly suffering.

So far I am tolerating the medication and am currently on 15mg of it. The tiredness has floored me and I am not sure if I should contact my Lupus nurse about it.

Still having pains in my joints but taking naproxen for it. Is anyone else a new starter to taking methotrexate and how are people getting on?

Lucy

[PMRpro]

I didn't sleep well when on mtx - in fact I was awake half the night! - but the fatigue, not the "I didn't sleep..." tired, the autoimmune-type fatigue was overwhelming and increased week by week. That was the absolute end - the other side effects were bad enough but the concrete legs and inability to do anything made me say "No more".

[Wrexlu in reply to PMRpro]

Why does the overwhelming fatigue get worse? I am struggling so badly with it and don't know what to do. Is it not a side effect of the medication? Xx

[PMRpro in reply to Wrexlu]

Yes - combo of the a/i and the drug side effect. I just could not face it long enough to see if the mtx would help. It was only in the (unlikely) hope I could get to a slightly lower dose of pred. But I really could NOT face feeling worse than I ever did with the illness alone - and pred works wonderfully.

[Wrexlu in reply to PMRpro]

I can't take prednisalone unfortunately. I think I may need to ring the Lupus nurse tomorrow and talk to her about it as it terrible. Having not much sleep at night but make up for it in the day.

[PMRpro in reply to Wrexlu]

I don't take it for lupus. But any drug is only worth it if you can live with it.

[Wrexlu in reply to PMRpro]

Very true. I react badly to most drugs so will see what happens. I don't want my rheumatologist upping the dose every time I see her.

[Greentomatoes]

Hi

I will take my 3rd dose on Monday. I tend to feel bit tired on Monday but found Tuesday to be much harder, due to pain in joints and long bones.

I’m on pregabalin for pain which really helps.

I’m returning to work after a long absence and hope I can cope now I have these new meds.

Hope you feel better soon xx

[Wrexlu in reply to Greentomatoes]

Thank you xx

[Hidden]

I'm not a new user of MTX, but first started it about 10 years ago, for RA. I now have a low dose for Vasculitis (along with Pred) with Leflunomide for RA. It never gave me fatigue even on the high doses, although since my Sjogren's has worsened, my fatigue is horrendous But the Fentanyl Patches I use for Hip and back pain (Osteoarthritis,Osteoporosis) do make me fall asleep all over the place.

[wallock]

I have been taking mtx for over 11 years. It upset my stomach for a while the day after I took it but then was fine. It’s hard to know what to put down to mtx and what to lupus. Mtx has been a good drug for me, it’s pred that keeps me awake. I’m also allergic to many drugs like you and I guess we all react differently. Maybe give it a bit more time or if you can’t, there are several more drugs for you to try. Good luck.