The methotrexate experiment

I began taking MTX for my GCA from the very beginning of my illness because high dose steroids caused mania. So I have never been on 'just steroids' for the last 18 months. About 3 months ago I finally felt vaguely normal and pain-free and had some ENERGY and was only on 8mgs pred. I hate my MTX (diarrhoea, blood tests, always having to stop and start, can't get my surgery to prescribe them, reduced skin immunity) so I thought I would try stopping it and see what happened. It takes about 6 weeks for MTX to begin or stop working. Over those 6 weeks I gradually got more and more shoulder pain and stiffness. This week, I was waking up in the night groaning in pain! I didn't increase the pred although I thought I might if I needed to. So, here we are, 8 weeks into the experiment and I started back on MTX yesterday.

What did I learn? Well, it works! Whether as a steroid sparer or as a disease suppressant - it is definitely doing something. I also learnt that I can't bear to increase my pred. Months and months of dropping the dose and still looking like an over-inflated hamster - I just couldn't bear to put myself up to 10. And I still have active disease after all this time (4 years and counting now). Boo :( One of my hopes was that I might get some feeling back in my hands - they went all fuzzy overnight about 6 months ago and I work as a pianist. They are just the same. It makes me so sad. Another loss to grieve. I'll never know if it is the drugs or the disease causing a peripheral neuropathy.

So I suppose I had 2 months off MTX and avoided 2 blood tests and may six trips to the doctors and pharmacists to try to get my drugs. Now back at square one. But sometimes you have to just suck it and see. I am going to accept 8mgs pred and MTX for another few months and then I might just run the experiment again!

11 Replies

  • Oh Saxjody, what a hard lesson to learn, but we don't know until we try, do we. I find myself wondering, however, if just upping the steroids slightly may have worked for you this time without returning to MTX as the previous round has allowed you to decrease thus far. You may not have experienced a return of the previous "mania" as on the higher doses of Pred. I do hope that at least the MTX kicks in a little earlier for you this time around so that your pain and sleep improve quickly. Good luck.

  • I only restarted yesterday. Shall I try 10? It's just so depressing upping the dose and I might have to go much higher

  • You're obviously not really happy about the thought of increasing the steroid dose, so as you've already embarked back on the MTX, why not give it a go for several weeks. Then, once you feel better, if you feel like repeating the "experiment" and it doesn't work again, you will then have the option of increasing the Pred instead. But we are not medics on here and really you should be under the guidance of a good rheumatologist rather than just left to your own devices.

  • Saxjody, I had a similar experience to you. I have Atypucal PMR (due to age), and GCA symptoms for 2 yrs but dismissed by Rheumy for 2 years ( now diagnosed GCA by experts). I have been on Azathiopribe for almost a year and was starting to have to increase Pred, so Eheumy nurse didn't feel it was working, wanted to switch to MTX but Rheumy refused. So we decided I would stop Aza. Oh boy 12 days later a full blown flare of GCA symptoms, which are still not fully controlled. They did lessen though after restarting. Problem I have is because GCA has been dismissed for 2 yrs, all the experts agree we should manage symptoms. That is proving challenging. I see my Rheumy on Mon, and am considering asking if a switch to MTX may help as Rheumy nurse says it's better than Aza, but I have no side effects with Aza. I'm also not sure if things will worsen on switching, or if the 12 week rule for it doesn't apply if your just switching. Can't afford for things to get worse as I've decided to return to work in 10 days time 😚

  • Very useful information, thanks.

    I have been on Preds for over 5 years for PMR and was diagnosed with GCA at the end of 2014.

    Currently on 40mg Pred due to flare and about to reduce to 35.

    My rheumatologist is seriously considering MTX or Azathioprine in order to reduce Pred. Having a few tests done now before we decide on best option. Will decide when I see him next mid May.

    I don't like the sound of either, but the Preds are playing havoc and I've been on them for so long, albeit not at this level.

    Such a minefield, but so good to have feedback from you and others taking it. :-)

  • Hello Saxjody.. I am interested to read your post on Methotrexate and I have been on 12.05 mg of Methotrexate since November 2014 and I have had dreadful side effects and one of the effects was my hands and they were much more painful and i was unable to carry out my hobby of knitting and crocheting and getting dressed and doing my hair was worse than usual. I know i have osteo /Arthritis in my hands but they just didn't want to work.My main problem on the self injecting injections is that it drugs me up for days and makes me feel very giddy and nauseous and I am unable to go out. It gives me the blues and makes me very snappy with my partner .This is the second time I have been on Methotrexate as I took it Orally a few years ago and I take it with Folic Acid but it effected my liver and my Consultant at the time told me to stop it. I had a nasty fall in Decemberand I had a nasty PMR flare soon after my fall which I blame on starting the Methotrexate and had to go back up on the steroids to 17.O5 mg and I am now back down to 2 days 14 mg, 1day 13.05 but I know how I feel and I am taking the slowly slowly approach so to be fair I gather that the Methotrexate has helped with the reduction.. Because I wasn't feeling at all well and getting more side effects including more exhaustion than usual so when I had my blood tests done last week the nurse thought I should get some GP advice which isn't until next week so as I wanted to go to a very important PMR/GCAUK SUPPORT MEETING this week I decided not to have my injection last Sunday . This is my first better week in a long time and I have been out everyday. I think we have to listen to our bodies and YES having to take extra steroids when the body needs it may help to get us down lower . My PMR journey is 11 years at the end of May and I have been told quite a few times by different GPs and Consultants that I may have to stay on a 5mg dose for the rest of my life ..I have been down as low as 5mg a few times but a flare or a Virus hits me like a bolt out of the blue and up I have to go again.. It devastating But its nice to read some of the positive posts where other sufferers get down really low or completely off the steroids. Personally I don't feel that the Methotrexate helped my pain at all and I could feel the inflammation in my body. I hope that the Methotrexate works for you as you haven't been taking it that long .. I am nearly 69 yrs old and I don't feel I can waste days laying on a bed especially when the weather is nice outside . I have decided I am going to get more advice on the Bowen Therapy to see if any treatment helps with the pain and just continue on my pred reduction slowly , slowly . best wishes trish29

  • Hi, I was put on steroids and mycophenolate five years ago , and then methotrexate as myco didn't work. I have taken 20mg every week since then. I ALWAYS take 5mg of folic acid exactly 24 hours before. I always take them at luch time at almost the end of a big meal. I feel that a bit more steroid would have helped me feel better but the doctors never listen, so I have just plodded. I have GCA and am 69 years old. Until I joined this site I just felt so alone, and still have lots of days when I feel !!!!!!!!! Take care while you try and adjust.

  • Trish, it was great to see you at the meeting again on Wednesday, even if it did mean you stopping the MTX!!! Interesting that you have been feeling better in just a short time without it, but at least you have given it another go, and it sounds as though it has at last enabled you to get a little lower on the steroids. It might be wise for you to mark time where you are on the steroid dose for the moment rather than continue with the reduction programme at the moment, just to allow your body time to adapt to the withdrawal of MTX again. However, much as you have enjoyed 'escaping' out of the house every day this week, be careful not to overdo it just now, again to allow your body to adapt to the recent MTX withdrawal. Whilst on the higher dose steroids, if I had a day out, I used to ensure that I rested to re-charge my batteries on the next.

    With regard to Bowen, I now have the contact details of a Bowen therapist who is treating another Surrey member at present - apparently the therapist is interested in providing us with a talk and demonstration. I will make contact and get more information from this therapist and, if I feel positive after talking to her, will perhaps arrange for her to join us at one of our future meetings. However, if you manage to find someone in your area, perhaps we will be able to compare and find the best one for our meeting. We're booked up with speakers until towards the end of the year so it won't be any time soon. Meanwhile, you take care.........and don't overdo those days out! x

  • Thank you Celtic .. I understand what you are saying and I know I need to rest and take things steadier. I will show your post to Pete and see if He Understands . Hopefully we have a quiet weekend coming up ..ha ha . I want to take things quieter and I will try and stay on the 13.O5 -14mg steroid road but I would allow myself 14.O5 mg if I felt I needed it until I see my doctor .. I do feel that the steroids can't be doing anymore damage than the chemicals that are in Methotrexate or leflunomide . I hope to go and see Reena or Beccy my Osteopaths next week and see if Reena knows a good Bowen Therapist. I will let you know if I go for any treatment. Tuesdays meeting was wonderful ..I so admire the Professor ,he spoke so clearly and its nice we have the likes of him ,our lovely Consultant and you,Pmrpro and all the lovely caring people on this Forum. Have a lovely weekend Celtic and I promise to take things steady ..I've got plenty of books, puzzle books knitting and crocheting and my cleaner is due any time .love trish29

  • O the irony of my post becoming a Bowen-fest! I am going to laugh!

  • Saxjody, apologies for slightly digressing from your thread on Methotrexate - it's the nature of the forums and can happen sometimes, I'm afraid.

You may also like...