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Newly diagnosed. Starting methotrexate.

  • By hugosmom

    I was diagnosed last week. I have been symptomatic for 10+ years (I’m 40 now) with normal blood work. I’ve been to many doctors who just shrugged their shoulders. I asked one for rheumatologist referral and showed her my pitted nails and explained my other symptoms. She said I needed derm, and I got up and walked out. I’ve been so frustrated I would give up for the better part of a year before trying again with a new doctor.
    I changed medical groups recently and had a rhematologist spend nearly and hour with me, pouring over my history. The biggest hangup doctors have had is my lack of symptoms in my hands. Well, lucky me, it’s finally in my hands and those calluses on my knees are actually psoriasis. (That never occurred to me, duh.) The clincher was when the rheumatologist asked if I’ve had any skin problems and cracking in my belly button. I just got over a frustrating bout of that lovely problem. I’ve always thought I had eczema and sensitive skin.
    Anyway, that’s my long-winded, but very condensed, journey to diagnosis that sounds pretty typical, sadly.
    So here’s my question: what has been your experience with methotrexate? I had the option of jumping right to Humira, but I have past experience with methotrexate for an ectopic pregnancy. I just remember feeling really good after my injections, and I should have been feeling terrible because I was losing a pregnancy after fertility treatment. There’s also a concern that my insurance won’t cover Humira unless something cheaper has been tried and failed.
    My second question: how bad is everyone else’s fatigue when you’re untreated? The pain sucks, but the fatigue and malaise is almost unbearable.
    Thanks for listening.

  • By Sean

    Hi hugosmom.

    Someone else will have to speak to their experience with Methotrexate. I jumped straight to Humira because slightly elevated liver enzymes prevented me from going on Methotrexate.

    My experience with Humira so far – and I’ve only been on it six weeks – has been outstanding. My pain level dropped to zero the the first day after my injection and it’s been there ever since. I was concerned about getting sick during what is a really bad cold and flu season but, fingers crossed, I have not yet. I’ve been taking precautions on that score, however. Still living my life as I always have – just washing my hands more and using anti-baterical wipes a little more often.

    Fatigue was never really an issue for me when I was untreated. Maybe I was lucky. But I also like to work out a lot so many that helped. I don’t really know.

    I’m glad you’re getting treated. My advice to you is that if your insurance allows you to go on Humra, consider it. It’s been a pretty great drug for me so far.

  • By lida

    Been on methotrexate several years ago as treatment for extensive psoriosis.cleared my skin beautifully and I had no side effects. Presently back on for psA. Helps with keeping inflammation , fatigue, plaque outbreaks, swelling down some. Downside is some thinking of hair! Have regular blood work done. No problems.

    • By Rebecca Keymaster

      Wow that is so great to hear about it clearing your skin, @lida. So do you mean before you didn’t have side effects and this round you do? I wonder does it have to do with dosage or is that the same?

  • By hugosmom

    I’ve spoken to my doctor and he’s going to submit Enbrel for approval. We will see what insurance says. Hopefully they won’t deny it.

    • By VickiN Moderator

      @hugosmom, I’m keeping my fingers crossed for you that the insurance company doesn’t make life difficult!
      -Victoria, Community Moderator

  • By kjb1971

    If you go through the drug company they will help you with the cost of the medication. Also I had every side affect possible while on Methotrexate. This was not a fit for me, I am not on any medications right now I decided to try other things and so far so good.

  • By mich54

    I just stopped taking methotextrate that I was on for over 3 months. My rheumatologist had me try it before he would try a biologic. It did nothing for my joint issues at all. So tomorrow I am staring on Humira. And I am hoping I get the results that Sean has! That would be amazing!! I have been trying to find out what is wrong with me for over 30 years and just got it figured out (pretty much by myself) after having psoriasis – that my dermatologist diagnosed while she was treating me for alopecia areata. And when I looked up psoriasis on the internet and read about PsA I could not believe it!! That is what I have been feeling all these years. AND I remembered I had psoriasis on my scalp as a little girl. All these years and no one knew why I had all this joint stiffness.
    I have fatigue all the time. I don’t really remember what it is like to not have it. Seriously. It’s like it’s just my normal way of life. I wonder if that will get better with Humira.

  • By Leanne Donaldson

    @hugosmom 🙂 I just wanted to check in and see how things are going? Were you able to get approval for Enbrel or did you start methotrexate, or both? How are you getting on? Starting any new drug (especially at first diagnosis) can be scary and it is hard to know what to expect. Are you doing okay? -Leanne, Community Moderator