Update on weaning off Prednisolone - Methotrexate- any good?

[Bowenlady]

Hi, just an update. Some will have read my recent post where my rheumatologist seemed to have forgotten I was still on 10mg or Prednisolone and had been for too long. He gave me 8 weeks supply to come of it completely and I had terrible problems and a nasty flare up. He then told me to go back up to 10mg in weeks 6 because I felt so I’ll. After the increase I started to feel a lot better gradually. I had an appointment to see him 2 weeks ago. After taking advice here, and having explained the problems I had with the weaning process, I explained that people on this forum had reduced by 1mg a month with good effect and could I do the same. “That’s a very good idea” he said and set up a three month prescription to reduce 1mg every 28 days. I have to see him at the end of that period. I know in advance what will happen. They won’t call me for an appointment, I’ll get stressed to hell and back by making loads of phone calls and getting prescriptions sent out in the post. The calls are on an answer machine and they have 48 hours to reply. The machine tells you they are only able to give urgent attention to people experiencing a flare. Anyway, he continued to say that it is clear that hydroxy is not enough on its own so he would like me to consider taking methotrexate with it. Now I have heard from a friend that that drug can be nasty with side effects. This was his preferred drug but gave me leaflets on two others which seem to have worse side effects. So, kind people, what do you think about taking methotrexate and what are the benefits and problems with taking it? I’d like to be well informed before I make the decision. He also said he would get my GP to put calcium tablets on my repeat prescription as there was no room left on the prescription he was writing?? I was happy with the meeting with him, thanks to the advice given here. Thank you all.

[PMRpro]

We have a lady on the PMRGCAuk forum, MrsNails, who has been using MTX - successfully in that she has got from doses in the mid-teens to 9mg by using it. She has had problems but still thinks it is worth it and is always happy to discuss it with others facing the prospect. She has also added a lot of discussion about MTX to the relevant section of our FAQs

Personally, I can't be enthusiastic about its use - it made me feel so ill and unable to function that I stopped after a month, I was a sole carer and had to be able to function reliably. I had no nausea - the only thing I didn't have! That can be avoided by using injections anyway. But the fatigue was overwhelming for over 6 days of the week - I felt OK for the 12 hours before the next dose was due - and my hair fell out in clumps! I also experienced what are usually regarded as pred adverse effects but which I have never experienced with prednisone and prednisolone, although I did have similar problems while on methyl prednisolone for some months. I switched to prednisone and they all disappeared within a couple of months.

[Bowenlady in reply to PMRpro]

Mmm sounds horrible to be honest! I just hope I get down to a really low dose and can maintain in that low dose. I am so scared about the hair loss thing too as mine had thinned quite a bit already. Ive had to change the way I do my hair to cover the thin hair at the front. There are still kind people who pint out how thin it’s getting though!

[PMRpro in reply to Bowenlady]

Sometimes you wonder why you have that sort of person as a friend don't you!!

MrsN knows all about the hair thing - she was also diagnosed with breast cancer and the chemo did for all her hair so she has a superb wig because although her hair has grown back it is very very fine. No doubt ongoing MTX doesn't help. The folic acid does help a lot - but many doctors start patients on 1x a week when really they need it 6x a week so then they must play catch up. Never quite understand that!

[Krazykat26 in reply to PMRpro]

Hi Pro 🤗 Could u have a look at Simply Kea's post about wrist pain is u have a mo please? She's had no steroids for a few days n you can explain the dangers far better than I can 🌈😽😽xx

[Cathyan]

I was on hydroxychloroquine, azathioprine and prednisone for years and got stuck on a mid teens dose of prednisone. I only got it below 10mg (7.5mg mostly) once the azathioprine was changed to methotrexate. Felt so good to lose the cushingoid appearance!

[Bowenlady in reply to Cathyan]

That’s really helpful thank you. The other options to Methotrexate are Azathioprine and Mycophenolate. They give you a leaflet but you can’t beat listening to personal experience. I know we are all different but there must be some common ground. Thanks.

[Cathyan in reply to Bowenlady]

You're welcome Bowenlady. Hope you find the right treatment for you.

[svfarmer]

I’ve been on methotrexate injections for 5 years and don’t suffer any side effects at all x

[Bowenlady in reply to svfarmer]

Thank you. The more comments I get the clearer the picture I get. I’m grateful. X

[JL1w]

Hi I too have been on pred far too long and ended up with steroid induced Cushing syndrome so have been very slowly trying to reduce off them current dose 3-4 mg ,but every time I get sick or have an infection I have to follow sick day rules as they presume I have adrenal insufficiency , hence have to up steroids back to a higher dose whilst ill . The idea they put me on mycophenolate to compensate for the pred and hopefully get off pred , I tried azathiopine but had terrible nausea so had to stop that , the mycophenolate I have very little side effects but do seem to be picking up lots of infections eg , chest , uti , ear nose throat , so have to come off it whilst on antibiotics up steroids again then go back on it when well . You need very regular blood tests too . More than happy to offer more advice if you think it might help ,Good luck hope the mycophenolate works for you !

[HazelW]

I've been on methotrexate for years now and totally swear by it. It has kept my lupus under control & I have had absolutely no side effects. Of course it's different for everyone, but I personally highly recommend it ! Good luck, whatever road you take.

[Hamptons]

My mother in law is on MTX and it has meant she can come off steroids. She has a jet lag day on the first day but otherwise it has been amazing. Reduced all her joint pain, less swelling and more active. She loves it. She does monitor her liver checks.I was on it but it made me feel worse, leg and joint pain with reduced mobility so I stopped.

It is as all these things a lottery. I think many people on this forum have found it a game changer. I think you have to try it and see.

[Barbara17]

Hello. I’ve been on mtx on and off for two years now. I had two attempts to take the tablets but felt so ill I had to give up. After a short break I went on to 20mg injections - and I struggled on that too. So I reduced to 15mg injections and that worked! I now feel better than I have for years, although the day after the injection can be a bit like jet lag as someone else said. Additionally I’ve managed to reduce from 10mg pred to 2mg at half a mg a month over the past year. Good luck.