Posted , 3 users are following.
Hi,
Been on cyclosporine for about 3 weeks now and I will be switching next month for a multitude of reasons. First, the side effects keep fluctuating in that some days, the nausea is unbearable and sometimes, it's non existent. Secondly, while I initially responded to cyclosporine the first 2 weeks, they are coming back now with a vengeance; almost as though my body is fighting back against the drug. Thirdly, because of my body weight, my dose is too high and while my skin is messed up already, I'd love to keep my kidneys and nervous system intact.
Sorry for the long preamble but my question is this: has any one used methotrexate for chronic urticaria or cholinergic urticaria? If so:
What dose?;
How long did it take to achieve symptom relief?;
We're you concurrently on steroids?;
How long were you on it till you achieved remission or are you still on it and if so, are you in remission?;
If you've stopped using it and are in remission, how long have you been hive free?;
What side effects did you experience?
Feel free to TL;DR and just skim.
Thanks guys :-)
0 likes, 10 replies
katieohla tonello26977
Posted
I too was on cyclosporine and had similar issues. First time round I lasted 3 months, had kidney problems. Then tried again 3 years later and had high blood pressure, bleeding gums and kidney problems after a couple of months on it. Worked a treat for the rash though!
I am 6 weeks into taking methotrexate tablet form for eczema and chronic urticaria. So far so good I think... Not sure yet. I've had 2 lots of blood tests and haven't been asked back to the derms so things must be ok so far. I am on prednisolone too, have been for quite a few months solid at various dosages depending on how angry my skin is!
My dermo said the mtx could take 12 weeks or so to work, so I can't really tell if it's helping my skin because of the prednisolone. So over the next few weeks the plan is to try and drop it down then finally come off the pred. I will have to let you know if it works! Apparently there is only 30% chance of it working. I'm running out of options for treatment so will literally try anything.
I started on 5mg, then 10mg the following week, then 15mg each week after. Until I visit the dermos again I don't know if the dose will change. I take it on a Friday in the morning, then 5mg folic acid every day except Fridays. Feel ok all day Friday and feel ok Saturday too. Feel like absolute rubbish on Sunday's, as if I have the flu coming. Ache all over and feel wiped out and have to have a little lye down half way through the day. It's really inconvenient! Monday is ok. I don't get any sickness feeling or any other major side effects that you read about on forums etc. (So far anyway, touch wood!) I read that people who have bad nausea it might be better on injections rather than tablets.
Anyways, it's worth a shot to try and feel comfortable with your skin.
Good luck, hope whatever you choose works a bit better than the cyclosporine!
tonello26977 katieohla
Posted
katieohla tonello26977
Posted
Umm I'm not sure the actual names of the blood tests but again mtx can be a problem for liver & kidney function for some. I guess there's always a risk with powerful drugs, it's best to get checked out. My blood tests are every 2 weeks at the mo but I'm sure that'll become less often as my body gets used to it. Hope so anyway.
With the pred, currently on 5 & 10mg on alternate days. Go up to 20-25mg when having a flare up. At my worst I've been on 40mg but only for a short period of time.
tonello26977 katieohla
Posted
Is your methotrexate dose weekly or daily (I'm assuming weekly) and will regular folic acid from the vitamin store suffice?
katieohla tonello26977
Posted
It's weekly treatment yes. Umm I assume folic acid bought from the store is just the same as from a chemist, I'm not entirely sure. I just go by what my dermo prescribes. I've read online some people only taking 1mg each day, but I take 5mg. I'm not sure the reasons why the amount varies, whether it's due to the condition the mtx is treating or what really. I've read some people take higher dose to avoid the nausea.
Has your doctor suggested what dosage to go on at all?
tonello26977 katieohla
Posted
katieohla tonello26977
Posted
Do you see a dermatologist or doctor? Apologies I never asked where you're living! I'd see a different doctor if I were you, if you can find a specialist that is. I do feel confident in my dermatologist ability thankfully!
tonello26977 katieohla
Posted
katieohla tonello26977
Posted
If you're not on it already there's a methotrexate group on Facebook that has really interesting stories on :-)
tonello26977
Posted
I've returned to weightlifting, running, cycling and other normal activities. I hope this lasts once I stop the MTX and steroid injections (knock on wood) but even if it doesn't I feel like a new person and I'll rock it while it lasts.
Side effects: Just one; methotrexate makes me feel like ass. No joke, especially the day after I've taken my dose. It feels like a solid 24-48 hour hangover after taking mtx. However while I am tired the rest of the week, I am able to cope and continue normal activities. From what I've read, the fatigue gets better around week 6-8 and I will soon be in that time frame.
I will continue to log my progress
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