Treatment Issues

Methotrexate ?????

  • By Slittleton1211

    I am scared as hell to start methotrexate. I hear so many mixed reviews. My doctor wants me to start after Thanksgiving. Anyone out there have any suggestions, information, or experiences that can help me decide if this is the right thing for me? If you lose your hair is it permanent? The med itself causes extreme fatigue…. isn’t that what it is supposed to fix? It’s crazy to think about taking a medication that will knock you on your ass. Do these and other side effects that may arise go away as your body gets used to the medication? Please anyone out there have any information?

  • By VickiN Moderator

    Hi Slittleton1211, thanks for being here and sharing some of your fears with us. Starting systemic medications can be quite overwhelming. I haven’t personally used Methotrexate, but I thought you might want to check out the comments on our Facebook page under this Methotrexate article:

    Methotrexate has been used for decades to help with pain and swelling, and it can slow PsA progression over time. Folic…

    Posted by on Monday, November 14, 2016

    Hopefully some community members can chime in here as well! Warm wishes to you,
    -Victoria, Community Moderator

    • By kjb1971

      Did you start this medication? It is awful and the side effects are really bad. I had every side effect from sores in my mouth to stomach issues, extreme fatigue. I would tell my Dr. and she would add another pill to help with the side effects. Pretty soon I was taking so much medication it was ridiculous. I finally stopped taking everything and guess what?? I feel SO much better. Yes I have joint pain but you know what, I am okay. I am not going to die from PsA. I had a close friend her dad took MTX for years and it turned his lungs to “mush” as she put it. He passed away due to all of the side effects. Don’t get me wrong not everyone will get the nasty side effects like I did just be very careful with this medication.

  • By Luke

    My experience on methotrexate wasn’t great. It did eleviate my intense pain. But the side effects were terrible. Mild hair loss that did grow back. My skin looked terrible and I felt tired a lot. I’m not sure if it was related but I tend to think my skin cancer was caused by this drug as my melanoma developed and was diagnosed while on this drug. I know some people that have had some success with it but for me it was not a good experience. I hope you have found success.

  • By Sean

    For some reason this drug is still the first go-to drug of rheumatologists after NSAIDs. I’m not sure why.

    My rheumatologist was going to put me on it but because my AST is slightly out of the standard range she opted to go straight to Humira, which three weeks in is working great.

    I, too, have some skin cancer concerns with regards to these drugs that suppress our immune system as when I was young and stupid and in my bodybuilding phase, I spent a lot more time being tan than I should have.

  • By cchappo

    I, too, was afraid to take Methotrexate. I was given the pills first, which quickly increased to the max amount you can take. Within 9 months, I was on the injections. It took a few months to start to see any great improvement. It has been almost a year now. My really bad patches of scaly, bleeding skin are almost smooth and barely noticeable. My skin “peeling” has been greatly reduced. I only get increased “flaky or peeling” when I have a bad flare. I still have minimal “sheading” when I get itchy. I usually scratch in my sleep. I never thought that I would see a lessening of this horrid symptom! I have psoriasis all over my body, including my head, ears and my nails. My face wound get so bad that I refused to leave the house. I can’t use makeup because it burns my skin.
    At least I have made some progress.

  • By mulee581

    I have taken methotrexate for over six years. Along with the folic acid and celebrex, it has helped me to regain my mobility and really cut down on my swelling and discomfort. At first I took prednisone also, but have, over time weaned myself off of that particular medicine. Sometimes I think about switching to a biologic, but have been put off by the number and type of side effects that seem too prevalent with those treatments. I would not discount the methotrexate as an option. I am not at the maximum dose, so feel if I were to get worse, I could increase my dose. I am thankful that this medication has worked for me and kept me, so far, from having to be concerned about the biologics and their side effects. I am 66 years old and have had some thinning of hair, but not bad. Tired, yes-but worked up until 2years ago when I retired. I hope you find success with whichever treatment option you choose-

  • By dcwel

    Methotrexate caused me to have a chronic cough. When I went off the cough gradually tapered off. Then to be sure I tried it again with a different rheumatologist at a lower dose. Again a dry chronic cough that lasted over a month. Came close to depression in till my family doctor got it stopped. I do believe that is what caused scarring on my lungs. 2 weeks I see a new rheumatologist who has been highly recommended. No skin issues. Do have trouble getting to sleep and can hardly get put of till till a hot shower loosens me up.

  • By mich54

    I used methotrexate for over 3 months. I did not really notice much of anything, except maybe more tired. But it did not help my joint issues at all. I am now going to start Humira.

  • By Jdubb187

    Ive recently started mtx. My course of therapy is a little strange compared to others. Ive been in treatment for 2 yrs and we have JUST now added the mtx.

    I know that most ppl who suffer from PsA start with mtx, but i started with SSZ, then added plaquenil, then humira, then celebrex and now the mtx. And yes, if you were wondering, i am currently taking all the medication i just listed. Which is what i meant by “strange course of therapy”.

    Its really a pain, taking about 30 pills /day, but we had to be aggressive with treatment. I was in pretty bad shape & now, i am to the point that i can hold down a part time job. [Yay!]

  • By Mr Benn

    @ Slittleton1211

    So sorry, your possibly taking Methotrexate by now. I think there is an alternative.
    It’s hard to explain how I know this but in short it’s tried and tested.
    I stopped eating:
    Grains, (Every single one including rice & sugar)
    Some meats.
    Some veg.

    Proof is they all caused some swelling and sever pain.
    If I try to eat any in the categories above, I suffer with severe pain in the Spleen, Gut, Bowels, first. Then in joints. But, the pain in my muscles decrease. It’s a really hard life, that no Government official or Doctor can even comprehend.

    I refused Methotrexate as I don’t want any more complications in my health. All were caused by Vaccines, Anti-Biotics, and Anti- Depressants.

    Funny thing was that all these problems were caused by a Grain intolerance that no Doctor ever picked up on. I’m just the unluckiest person in life where health is concerned. I would never have had depression if I had known I was intolerant to grain. Funny thing is there are many of us out there but they don’t even know about it. Most people with I.B.S problems are told to eat more Fibre which is actually the opposite to what they need to do. Fibre is a grain after all. Their problems then exacerbate.
    All I.B.S sufferers need to stop eating grains. If they still have problems then they have a completely different problem. I.B.S should not be taken so lightly it’s actually saying your body is not happy with something your eating. Sorry to moan on out of control but Doctors have been saying the wrong thing for nearly a century. Pain & swelling is the same thing. It’s a reaction to something else. Doctors are always treating the end result and never the actual cause. Methotrexate is actually treating the end result, not the cause. Your choice!

  • By Jax53

    I had taken Methotrexate, I was sicker than a caged parrot, I could not tolerate this medicine, Even changed it to injection, was giving myself Insulin one side Methotrexate the other, I was discharged because I was considered untreatable, I am fighting for my life here, I want an option to try more different drugs, not left in the dark and fed Bull. I tried Acitretin, which knocked out my liver, Methotrexate which just made me very sick, Cyclosporin, which didn’t do jack, and a couple of others, I had a team of medics that delved into different body parts, but no actual treatment. Why?

    • By Mr Benn

      Jax 53

      Hi, what is your dx?
      Make it clear so we can all understand. If you don’t have a dx of every symptom, please describe them all. Try not to elaborate. Just facts. Maybe someone who reads this has a help, or possible comfort. Remedies are so rare so please do not get your hopes up! But, fight unto the end my friend. I’ve been fighting for 31 years now myself.

  • By sld173

    I’m also very scared/worried about taking Methotrexate. I was diagnosed with PsA a little over 2 months ago (after about 2 years of seeing various doctors, multiple tests for things likeRA, Lupus, Fibro, etc.). I was prescribed methotrexate (oral) and Prednisone (short term tapered dose) and folic acid. The methotrexate side effects I experienced included nausea, abdominal cramps and fatigue. I did see some improvement in my joint/tendon pain and also in my IBS, however as I started tapering off the Prednisone those improvements began to revert so I’m now convinced that the Prednisone is what was helping, and I don’t believe the Methotrexate did anything at all. When I reported all this to my Rheumie her response was to increase the dosage of Methotrexate and switch from oral to injections. Why would I want to increase the dosage of something that’s not helping me? And I really don’t want to do injections. At this point I just don’t know what to do. I’m scared and confused. Any advise?

    • By Acknud

      I have been on methotrexate as well. It really didn’t help and the risks with it didn’t seem worth it. Injections aren’t that bad. I have been on Enbrel and Humira but found they really didn’t help me. Th best was Otezla but it is about $2500 a month and I have no insurance.

  • By GCM

    I too MTX for about 5 years. First by itself, then Humira was added. I took MTX pills first, but the opinion was my body was not obsorbing the drug…so I started taking MTX injections (25mg), still taking Humira. I began having lots of respiratory & sinus infections, colds, etc. My doctor decided to take me off MTX and use Humira only, which worked very well for me for about 2 years. I recently started Cosentyx 150mg at once a month, after a 5 month break off Biologics. (I started 10mg Prednisone because I had a PsA flare at 2 months off any medications.)

    While taking MTX, I had mouth sores which taking Folic Acid mostly resolved. I would also have a day where I didn’t feel 100% (tied, nausea), but could still manage. Once I started MTX injections, most side effects disappeared. I would suggest you try injections if you are not getting results from oral MTX. (The injections don’t hurt at all; they are nothing when compared to Humira!)

  • By DonnaMarie

    I was recently diagnosed with PsA after a year-long issue with my ankle. It started with pain, then torn ligament with a boot for 4 long months. I have had fibro for 13 years. I have been on Sulfa for 3 months and MTX pills for 5 weeks. No side effects but I don’t see any real improvement. I am tired and think that I may be experiencing low points which I thought was from being stuck in the house for a year. Was an active person before this. I am sick and tired of this issue. Also developed psoriasis Dec 2017. I think the fibro is confusing my symptoms. Next step Rheumatologist mentioned is shots of embrel. Not sure where to turn next.

    • By Mr Benn

      @ DonnaMarie.
      Truth be told it’s your diet that’s making you ill. There are so many who do not believe in it that it’s like talking to a brick wall. 16 years research I have only come up with 1 answer. I’m not going into what to eat and what not to eat as I have been explaining myself black & blue. There are 2 main components of your diet you must not eat anymore as they are causing most problems. They are Grains & Dairy. Cut them out and you will feel much better. But, there are others.

  • By swcolter

    Exactly what do you mean by dairy….if you cut them out what do you eat…..I am having so much joint and muscle pain and just can’t hardly use my hands that I am willing to try anything.

  • By jerri

    I was on methotrexate for 4 mo & it helped. I was tired for 24 hours is all. Then added HUMIRA due to inflammation levels were still high. I started getting sick every 15 days & I have pitichea. Then I became short of breath. Stopped methotrexate. Staying on HUMIRA for now. My back has spondylolisthesis which has been flared up. Pitichea is bad, but the cardiologist told me to stay on Motrin until we pinpoint the inflammation.

  • By redsfan

    They started me on methotrexate 8 years ago after months of not knowing what was up and finally giving me steroids. Then to the methotrexate. After a month or two it started working and I was feeling better. Then the odd infections started. Infections in my elbows, knees and even little ingrown hairs would go from 0 to 60 in a day. I was able to use hot compresses and bactraban to combat them but was still very concerning. Then the methotrexate stopped working. Maybe got 6 months out of it. I tried otezla with no luck. They then wanted me to go to enbrel. I couldn’t bring myself to use it. Side effects really worried me and my RN wife. I’ve used Turmeric, fish oil, hemp oil and tart cherries for my inflammation. Of course Aleve when things get rough which can lead to 2 aleve being used every night for weeks and even months. I’m on a different path now that is working but not the best but no pills or shots.