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Methotrexate with or without steroids for hives experience

Posted , 3 users are following.

tonello26977
tonello26977

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

10 Replies

  • katieohla
    katieohla tonello26977

    Posted

    Hi,

    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
      tonello26977 katieohla

      Posted

      Thanks Katie. I appreciate the info. I haven't had any kidney or BP issues but I'm not ready to risk that yet if there is no guarantee of results. What dose of prednisolone did you start on and what are they testing your blood for?
    • katieohla
      katieohla tonello26977

      Posted

      It's ok, anytime!

      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
      tonello26977 katieohla

      Posted

      Yes I just did some extensive research on methotrexate and it's side effects listed on the label are quite alarming but apparently harmless lol, especially when you ask RA sufferers that methotrexate is routinely prescribed to.

      Is your methotrexate dose weekly or daily (I'm assuming weekly) and will regular folic acid from the vitamin store suffice?

    • katieohla
      katieohla tonello26977

      Posted

      They are quite alarming aren't they! But I'm prepared to put up with some of them for being able to get on and do things without being itchy!

      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
      tonello26977 katieohla

      Posted

      He's proposing starting at 15mg then 25mg if all goes well, by that I assume he means if the blood tests look kosher. I was asking because it doesnt seem like methotrexate is dosed by body weight and the recommended dose for chronic hives is 10mg-25mg per week. My doc isn't so bright honestly. I'm the one coming up with all the treatment choices, research etc. Initially he was condescending of my efforts but now he respects my knowledge of the disease, after all I'm the one suffering through it lol.
    • katieohla
      katieohla tonello26977

      Posted

      I think the dose can vary depending on the person. I reckon my dermo started me on a low dose because all of the other meds I've been on I have reactions to. I'm hoping this one will be ok though!

      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
      tonello26977 katieohla

      Posted

      I'm seeing an immunologist and I live in the US. I used to have a good one but I moved
    • katieohla
      katieohla tonello26977

      Posted

      Greetings from the UK! I hope you manage to get sorted out soon.

      If you're not on it already there's a methotrexate group on Facebook that has really interesting stories on :-)

  • tonello26977
    tonello26977

    Posted

    So progress update: So I'm on my 5th week of methotrexate and steroids. I started at 15mg per week and now on 25mg weekly. To kick-start the process, I got a shot of Kenalog once a week for the first 4 weeks totalling 160mg of Kenalog IM. In terms of the hives, I still get the physical manifestation at times but in terms of the stinging and pain, it's all gone and I'm in remission.

    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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