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Methotrexate and folic acid

Posted , 11 users are following.

Susanne_M_UK
Susanne_M_UK

Here's a warning! I've been on MTX since early January and appear to have been coping well with it.

At the beginning of March, I began to notice that I was losing my sense of taste. It was a gradual sensation, together with my teeth becoming very sensitive, especially to cold drinks/rinsing with mouthwash etc. Bad headaches, but not GCA ones and having a worse than usual brain fog.

I mentioned it to my GP during a consultation about something else. He dismissed it as me probably having an underlying virus. By then, I was also feeling pretty unwell and very tired, but then I often do. I very rarely feel well, except when I'm on 35mg plus of pred.

Last week, I went for bloods at St George's and asked to speak to a nurse about the symptoms. She discussed with rheumy on duty and I was asked to come in to see rheumy the following morning. My own rheumy was not there.

My bloods showed a folic acid deficiency. I normally take 10mg the day before MTX and its now been increased to 5 x 5mg over 5 days. This was on Wednesday (today being Monday) and I began to feel better by Friday. But, I then took the MTX on Saturday and went into a big black hole. I've been almost unable to move, major headache, teeth and lack of taste again, sleeping through the Easter weekend, feeling weepy and down, which is so unusual for me. During all this time of having GCA, I've never got particularly depressed. Frustrated, yes, but not depressed. These are all symptoms of folic acid deficiency. Rather than wait until today to take 5mg of folic acid as I should have done, I started again yesterday, Sunday, but the Saturday MTX has obviously killed off what little store I had.

I'll see how it goes this week, whether the 5 days of folic acid will give me enough before Saturday's MTX. If not, I'll contact my rheumy to see whether the dose can be increased.

I'm feeling so miserable and upset and angry with the whole thing. Rant over!

But it's something to be aware of if you are starting the dreaded MTX journey.

0 likes, 27 replies

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  • pam7653
    pam7653 Susanne_M_UK

    Posted

    I posted on here a month ago about starting Methotroxate. I was on it for a month. I took 1mg of Folic Acid every day. The day after I took my fourth dose last week I suffered stomach pain. Started in the upper stomach and moved around. After a couple days I called my rhumy and they immediately took me off of the Methotroxate. It can cause some abdominal issues. I ended up at the Gastroenterologists office as it would not get better. I was put on a proton pump inhibitor called Dexilant. After 3 days I finally have relief. The doctor diagnosed me with gastritis attributed to the Methotroxate. She had no other explanation even after all normal bloodwork from both doctors. I'm currently on 7.5mg and had PMR FOR 3 years.
    • Susanne_M_UK
      Susanne_M_UK pam7653

      Posted

      Pam, that sounds very painful. I haven't heard of Dexilant. Will look it up. Hope you are feeling better now.
  • Susanne_M_UK
    Susanne_M_UK

    Posted

    Time for an update. Just had a major flare with temple and jaw pain and am now back on 40mg pred. Oh, will it ever end!

    Following the increase in folic acid, I continued to feel utterly weak and exhausted, sleeping every afternoon. Saw rheumy, who suggested lowering my mtx from 15 to 12.5mg, as she thought that might be the problem. Also had B12 and another folic acid blood test. I was convinced I had B12 deficiency, but nothing showed up.

    I do know that B12 tests are often false, as they measure both active and inactive B12, so although it appears you have plenty of B12, it may not all be usable. I suggested this to rheumy, but they won't prescribe unless the bloodtests are positive.

    I then lowered my mtx on Saturday, as well as tapering my pred from 25 to 22.5. And, bang - big flare on Monday. Spoke with rheumy on the phone and told to go back up to 40mg pred. By the next day, Tuesday, I had a big change in energy and was able to function fairly well. Today the same. I see rheumy in a week's time.

    So I think that all this time of me feeling so unwell and lethargic has been due to a low lying gca flare, starting around the 30mg pred and below stage. Not sure what rheumy will say to that. I obviously can't stay on a dose above 30 indefinitely.

    • EileenH
      EileenH Susanne_M_UK

      Posted

      Um - why not? I am beginning to really think that where doctors mess about with the pred dose and shift it around it causes problems. It would probably be better to accept 30mg for some considerable time than go up and down like a yoyo.And I also suspect that MTX just clouds the view. 
    • Susanne_M_UK
      Susanne_M_UK EileenH

      Posted

      Well, you know what they are like, or at least a big proportion of them. Their overriding aim regardless of circumstances is to reduce the pred. And yes, you are no doubt right about the MTX clouding the view, but I was clutching at straws, - still am for that matter.

      I've been on such high doses of pred since the GCA started 18months ago, the side effects are bad and I look like a bloated fat hamster!

    • EileenH
      EileenH Susanne_M_UK

      Posted

      So did I - and I wasn't on very high doses at the time.

      But I went out and looked around - and do you know, I realised there were an awful lot of people out there who must be on pred, judging by their chubby cheeks and waist measurement at least. And I didn't feel quite so bad about myself...

  • Susanne_M_UK
    Susanne_M_UK

    Posted

    Saw my rheumy yesterday. Reducing by 2.5mg weekly until at 25. I persuaded her that 5mg was too much.

    She keeps telling me I'm atypical of GCA and wants to do some elimination tests.

    She is booking me in for a PET scan, probably in a couple of weeks time.

    And also a temporal artery biopsy! Yes, after all this time, but said that she just wants to check in case it shows giant cells. Of course, it means nothing unless they manage to find one and having been on big doses of pred for 18 months, it seems a bit pointless.

    She said she is determined to get to the bottom of what exactly is wrong. Reassuring at least.

    Today I saw my gastroenterologist, liver looking good, but that could be helped by the pred as the readings have gone up and down as I've tapered. Check up in 6 months. She said that as I have an autoimmune illness, there is also a risk of liver autoimmune illness, so will keep an eye on me.

    But there is one good thing in all this mess. My very straight hair is beginning to turn slightly wavy, just a little twist to it. I've always wanted a little more oomph to my hair. I know some of you despair of frizzy hair, but mine is looking better than ever! :-)

    • Susanne_M_UK
      Susanne_M_UK

      Posted

      I forgot to say that I have tingling/pins and needles in my left side, starting at the top of my head and working it's way down my arm and side, so the PET scan may pick something up there.
    • EileenH
      EileenH Susanne_M_UK

      Posted

      Better late than never I suppose. The PET scan should have been done ages ago - and the TAB is probably totally pointless now. There are other Large Vessel Vaculitides that can cause similar symptoms. She doesn't HAVE to have giant cells. 
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