Methotrexate, should I shouldn't I?

Posted , 12 users are following.

hello, have been taking high dose predniolone for 3 plus months now, the rheumatologist keen for me to start methotrexate, and I am very concerned with what I've read regarding this drug.  Does anyone have anything positive to say about it and GCA.

i do tend to react badly to drugs.

very fed up in need of advise.

 

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  • Posted

    Hi Judyg ,my Rhumy wanted me to start taking methotrexate also ,but after reading all the side effects I told him NO THANK YOU .......wishing you a pain free Christmas x
    • Posted

      Hi Karen, Thank you for taking the trouble to reply to my concerns, and I am with you , from what I've read, however, I do appreciate that long term steroids not a good idea either. 

      Rock and hard place spring to mind.

      Happy Christmas to you too.

  • Posted

    Hello judy, firstly, you say high doses, what dose is that and was this dose your starting dose? you say you have GCA, have you tried to reduce, if so what happened? Regards, tina
    • Posted

      Hi Tina,  At present on 42.5 mg start dose for 1 week 20mg then upped to 50 mg for GCA,  yes have tried to reduce a couple of times, with return of symptoms.  So trying now slow reduction, (fingers crossed) which I hope will work.

      judy

    • Posted

      Hello judy, sorry for the delayed response but I have a fault on my telephone line so am getting very little chance to use my internet.

      i do not have GCA so am not experienced enough to offer much advice but I think you must look up the Bristol pmr plan. There is a section there that refers to recommend treatment for GCA and from you have told me I don't think your clinician is following the recommended treatment plan.

      also it is not unheard of patients who fail to respond to eg, 40mgs of preds to have that initial starting dose upped considerably. It's all about getting the current level of inflamation under control and I suspect you didn't achieve that hence every time you try to reduce the inflamation flares up.

      i'm also sure that you will need to stay on each dose long enough for the preds to do there work which is to control the current level of inflamation and if you are not doing that then once again you will get a flare. 

      Definately look up the Bristol plan and anything else you can look up online and see if your treatment plan is comparable to them because I firmly believe that if you start wrong you will continue to have hiccups along the way. Start correctly and that means a high enough dose to control the inflamation, stay on that dose long enough for the dose to take effect then and only then reduce slowly and again in little jumps rather than huge ones.

      all the best, tina

    • Posted

      Thank you Tina sound advise I think.  I'm convinced wasn't given right dose to begin with, but you put your faith in these professionals.

      im having difficulty locating Bristol plan, can you set me tight direction please.

      if you are out celebrating tonight have fun!

  • Posted

    Hi Judy,

    I just started taking MTX on Tuesday this week. I like you, researched the drug online and was absolutely terrified by the info people were posting. The positive reviews were few and far between but I decided the discomfort from the side effects would be worth it if it improved my current quality of life (lots of pain and fatigue). So this is what I did...I read that taking it at night might be best so I planned to take it about two hours before bed. I read that Folic acid is a must to help prevent anemia and hair loss (my doctor gave me an RX for 1 mg of Folic Acid a day when he gave me the MTX RX (now I understand why) . So I took one a couple of hours before I took the MTX. I started drinking big glasses of water through out the day and ate things like baked chicken and crackers that would be easy on my stomach. Water is key ... I had also read that if you eat a bowl of oatmeal before taking the MTX it is easier on your stomach so I did. After I took the tablets I drank more water thinking I could expect to be throwing up and that I should try to stay hydrated. I told my husband he could expect me to be ill for at least two days and then I sat down watched a little TV. and waited. I went to bed at my normal time and only experienced a tiny bit of acid reflux (I was glad I ate what I did ..(.starchy foods). Through out the night I felt some joint pain (not unusual) and may have slept a little lighter than ususal (nerves?) If I got up to use the bathroom I also drank more water. When I woke up I was only slightly nauseated and had a slight headache. I ate more oatmeal drank more water. I did feel fatigued and did take a nap in the afternoon. The mild headache persisted but a couple of Tylenol brought me relief. I rested all day and went to bed early feeling tired. Thursday I awoke with a mild headache which went away when I ate..I felt good can you believe it? I actually felt  better than I have felt in months the pain is still there but it seems muted. I had a great day yesterday shopped went out to lunch. I didn't feel the weight of the pain and fatigue. I know it could be mental as I had myself pretty worked up about taking the MTX but who knows? My husband suggested that the people who don't have negative reactions don't post because they are out doing things and enjoying life not sitting at home on the computer. I don't mean to be offenseive but I think alot of people like me get scared to try medications that can help us because of some of these dramatic negative reviews. I was willing to be sick to feel better and I was pleasantly surprised. Judy please try it there is a reason that this medicine is prescribed so widely I chose to power through any side effects that it might cause for as long as I could stand it in order to improve my life I am in control and this was my decision. Good Luck and Feel Better,

    Sally

    • Posted

      It takes 6 to 9 wks. before this medicine works.  Pretty confident it is much too soon to see those results.  Perhaps a positive attitude.  I took it once and got so sick and ached in places I hadn't ached before that I now refuse to take it.  Good luck with your journey.
    • Posted

      hello Sally,

      well it it sounds that you are taking  a very positive attitude towards your new regime, good for you! 

      As to whether it's for me I'm still very undecided, which is more to do with the way I react to drugs In general than negativity from other people's comments.

      however it is good to talk to people in a similar situation, who have either experience of the drug or concerns too.

      may you continue to improve.

      good wishes

      judyg

    • Posted

      Great post thanks sally, very helpful!

      I've (literally) just taken my first dose of MTX so I'll see what happens. !

  • Posted

    Hi Judy,

    Based on my personal case of having PMR for almost 2 years, I believe that from over a year of taking Methotrexate (MTX), it has helped to reduce the activity of my immune system which typically is overactive in PMR conditions.

    The year before I commenced MTX I was having large flares - then after MTX taken at the same time as prednisone, I had less flare and much less intensity of the flare that did occur. I think that these drugs (DMARDs) such as methotrexate ‘dampen’ down the underlying disease process rather than simply treating symptoms. It took almost 2 months before the MTX seemed to become active.

    I have not had any apparent side effects – however, I take my ‘once-a-week’ 25mg dose on Monday morning and I distinctively notice more fatigue and a bit more aches arriving on Saturday and Sunday – and then improvements on Tuesday after taking my weekly dose on Monday.

    I think that MTX has definitely assisted me in maintaining my taper with less pain, but for sure it definitely it does not replace prednisone.

    My prednisone taper is actively being reduced and I’m currently at 4mg pred. I think that there is some significant benefit from using a DMARD.

    My rheumatologist has now recommended that I start a slow MTX reduction following success with my prednisone taper program (thanks Eileen!!) but not until I am happy with prednisone at consistent 4mg dose.

    It’s a personal choice and I think DMARD reaction differs with each person – my opinion is that it’s worth a try.

    Dave

  • Posted

    I have just started methotrexate and folic acid and just like you I was afraid at first. But I had changed rheumatologists and I trust this guy more and he said the same thing the first one did. So far so good but it may be too early to tell. Now taking 7.5 mg pred and trying to taper. Still have aches and pains but I guess I'm trying to live with it. 

    I agree with your husband. I'm out living my life pain or no pain. I'll let you know in a couple of weeks. I also taking pantoprazole for GERD (already was on it for years) and rogaine for hair loss (already on it). Maybe that's why no side effects?

    • Posted

      I have been taking omeprozole for GERD for many years. I  don't remember heartburn when I had the pill form of MTX. I seem to remember my rheumy saying it worked better injected. Maybe that's because it's avoiding the stomach?
  • Posted

    I have been injecting 1 ml of MTX once a week for about two years for my GCA. My rheumy added it (originally I was taking MTX in pill form) along with folic acid and continuing my pred taper to keep me from flares. I haven't found that it has done anything for me - side effects or keeping me from getting two flares. It's a subcutaneous shot. If I ice the abdomen area first it gets numb and I hardly feel it.
    • Posted

      Hi Jan,

      Thanks for the insight, all taken on board, still very undecided, but will have to make a decision eventually.  So helpful getting opinions from people with experience of this drug!

      thank you

      judy

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