Petrified of starting methotrexate

Posted , 9 users are following.

I saw my Rheumatologist 2 days ago and she wants to start me on methotrexate. I'm already on 200mgs of hydroxychloroquine can't tolerate 400mgs plus 5mgs of prednisalone. I am petrified of possible side effects from methotrexate and don't know if I want to start the drug. When taking 400mgs of hydroxychloroquine I had severe headaches nausea diarrhoea and blurred vision and severe reflux. I'm just worried it's all going to back again and I can't afford anymore time off work. Has anyone been ok on it with minimal side effects.

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11 Replies

  • Posted

    I was afraid too. I read all about the side effects. I have been on it for about 9 months and the only side effect I have is the thinning hair. It doesn't come out in clumps or anything... just thinning slowly.

  • Posted

    I have been on it since August.  I already had thinning hair from either other meds or the disease.  Luckily, the only noticeable side effect for me has been lack of motivation.  I am not super tired, I just don't feel like doing much, especially paperwork and housecleaning. rolleyes  It is better to take a chance with side effects than to have your joints dissolve.

  • Posted

    My 89 year-old mother was started on methotrexate 6 months ago - it's improved the swelling and pain in her hands so much that she's been knitting again, first time in 2 years.  The only side effect she's noticed is slight hair thinning.  Her rheumatologist also precribed folic acid which she takes once a week, two days after the methotrexate, to avoid any problems with nausea. She is also on a number of other meds (for other conditions).

  • Posted

    I have been on MTX for about 12 years now, every other tablet seems to cause me more side effects than the MTX. Some make me itch, others give me diarrhoea, and leflunomide although it worked the blood pressure nearly did me in.

    When my Dr started me on MTX, remember this is many years ago now, she said pick your day remember you may have some reaction to this drug, Friday night I said, today is Friday, I am still taking tonight.

    Started me on 5mg, no result, then 10mg my inflammation when down and my liver tests came back normal, so another level up to 20mg, my liver did not like that, after some years doing really well on MTX, adding other drugs, which my system did not like, back to solely on MTX, with increased amount, my liver has learn't to like my dosage, my immflammation levels started rising, and rising, Rhemo could not figure out why, eventually after some months tested how much I had in my blood stream, very low compared to amount pescribed 35mg, end result i now inject into my leg, works for me, and I take my Folic Acid on Sunday and Monday mornings.

    I notice others say their hair thinned out, not mine, my hair dresser still complains about my head of hair, she tells me its three people, only time I had a thinning episode was after surgery for hip replacements, and when I went on a diet and lost 10kgs. I got a bit worried and visited the Dr, and he laughed at me, pulled out a mirror and said look at all this really short baby and new hair around my face, he pointed out yes it had dropped but was growing a whole new bunch of hair, which it has done, and still down 10kgs, need to have another go at losing some more weight, it has also helped arthritis.

  • Posted

    No reason to be scared, every RA drug has side effects and mostly the side effects are the same.   If you do get side effects that don't agree with you - simple, stop taking it.   Fair warning though, the side effects from MTX are minor when stacked up against some of the other drugs.

  • Posted

    Thanks for your replies it's nice to hear some positive responses. I will have to choose the day I take it wisely.

    • Posted

        I hope you don't take the full dose the first time you take it.   My rheum. in the US had me increase by 1 pill 2.5mg ea week.  Not sure all doc start it that way.  Allows your body to adjust to it

         I agree with Tony,  it does have side effects but other drugs seem to have much more serious side effects.  

         Humira gave me all sorts of problems but many tolerate biologics and I will soon be starting another.  Waiting for insurance approval 

  • Posted

    Don't wish to frighten you any more than you already are Deborah, I had Methotrexate, one dose and it put me in A and E, but that's probably me who reacts badly to things I have weird system, I would suggest you start on the lowest possible dose.

  • Posted

    I've tried MTX, plaquenil, sulfasalazine, hydroxychloroquine, leflunomide, cimzia and actemra (all to not avail), the only one I suffered side effects from was leflunomide, it gave me diarrhea.   Easly fixed, I just added a few spoons of bran in my breakfast.   Ocassionally, I've felt a little nauseous with a few of them, big deal!   I must admit though, I was worried about hydroxy and it's possible effect on the eyes, fortunately it didn't work me so I stopped taking it.

  • Posted

    Hello deborah80143,

    I began Methotrexate injections once each week in January of 2016. I was on the pill form, but experienced many gastrointestinal issues just after the first dose, so I opted for the injections. Like you, I was a bit nervous about starting Methotrexate because of all of the possible side-effects. Thankfully I have not experienced any side-effects that I am aware of. I did however experience great relief from the inflammation and extreme pain of severe rheumatoid arthritis. However, I had to have surgery on October 26, 2016 for something not realated to arthritis. Had to be off all medications for ten days prior to surgery. Two days after surgery I hurt so bad that I thought death was the only way out. Gave myself an injection of Methotrexate on October 28, and by October 29, I was feeling about 75% better, not without pain, but I could at least begin doing things once again. But the Methotrexate was not working as well after my surgery so my rheumatologist started me on Enbrel 50 mg injections once a week on November 16, 2016. Almost overnight I was feeling close to 100% like myself again. In fact, I felt so much better that I was able to enjoy cross-country skiing on December 23 and 24, 2016. I had my life back. When the weather warms up, I plan to enjoy rollerblading again too.

    I do eat raw local honey every day as a way to help me stay healthy. I have not had a cold in over three years because of eating raw local honey, even though my immediate family, four other members of my family, have had at least twenty colds between them in this same time period. They all refuse to eat raw local honey. I eat two tablespoons in the morning and another two tablespoons in the evening. If you are not accustomed to eating honey, perhaps beginning with one teaspoon twice a day would be better.

    Please let me know what you decide and how you feel? If it were not for Methotrexate and Enbrel I would no longer be working or enjoying any aspect of life. I am 54 years old and have had rheumatoid arthritis since April of 2013.

    Beginning just after Thanksgiving of 2016 I began switching to a more vegetary diet with leaning toward becoming vegan. Extreme idea perhaps, but I am trying to get the RA to go into remission. My rheumatologist told me that because my RA markers in my initial blood tests were so elevated, that remission is unlikely. I figure it cannot hurt to try.

    Take care,

    Don

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