What alternatives are there to Methotrexate ?

[Geordieland]

Hi ! Diagnosed with PMR in March 2020, started on 20mgs of Pred and managed to taper to 5mgs Was diagnosed with rheumatoid arthritis and given Methotrexate end of December 2021 . Had the required blood forms given to me in the first 12 weeks but began to feel sick all the time and really dizzy ! Had no feedback so chased up the blood results myself to find my ALT ( normal range 0 -35 ) in my liver function had risen from 12 last October to 327 in the 21st March blood results !!!! I stopped taking the Methotrexate on 14th March and have a rheumatology appt on 23rd May and I’d like to go armed with knowledge about my alternatives - any help gratefully received ! I also have osteoporosis and bursitis in my hip .

[DorsetLady PMRGCAuk volunteer]

Sorry to hear you’re not getting along with MTX, sure others will be along shortly to advise, but might be worth asking question on NRAS forum as well - healthunlocked.com/nras

[Geordieland in reply to DorsetLady]

Thank you - will do that - knowledge is power …..I hope 😂 !

[PMRpro Ambassador]

The alternatives for RA are often not necessarily the same as for PMR so it is more what your rheumy likes to do I think. Methotrexate is the gold standard first line approach for RA and is doing something different there than it is in PMR. It must also be questionable as to whether it really was PMR last March - much more likely to have been a polymyalgic onset of LORA (late onset RA), something that is thought to be the case in quite a few GP-diagnosed cases of PMR.

Was the blood monitoring being done by your GP? If so, you need to make it clear to the rheumy that that was not being done adequately - the continuing prescription of MTX should be dependent on the liver monitoring showing no deterioration of markers. Monitoring with MTX should be very frequent in the first few months of taking it and the results NOT ignored. I'd be creating a fuss!

[Geordieland in reply to PMRpro]

Hi 😊 ! The bloods were down to rheumatology and not my GP it was only because I was feeling so rough that I asked my GP to access my results at the hospital that we discovered the rising levels 😞 I have “ made my concerns known “ and wait with baited breath to see what they say at my appointment ! Interesting to see what you say about my PMR maybe not being PMR …..am on 5mgs and was told by the consultant not to reduce ( that was back in December ) maybe I should start a slow taper ? Thanks again for your prompt reply 👍

[PMRpro Ambassador in reply to Geordieland]

He may have left you there to carry you over until whatever DMARD is settled on starts to work - which can be up to 6 months.

Naughty rheimatology - I might do more than "make my concerns known"!!!!

[Geordieland in reply to PMRpro]

😂😂 leave it with me ….they’ve not met me face to face ! 😂 Will update !

[Baileyw06]

I also have RA and other overlapping autoimmune diseases and on 6 mg prednisone. My Rheumotolgist put me on Plaquenil and it has not effected my liver readings and I have had problems in the past with cholesterol meds.He added in lefluonide and that seems to be helping.

[Geordieland in reply to Baileyw06]

Thank you - that’s really good info to have ! Will report back as to what happens 👍

[Baileyw06 in reply to Geordieland]

You’re welcome, I have blood test done every 3 months for Plaquenil and Inc a month for Lefluonide.

[Geordieland in reply to Baileyw06]

👍

[cranberryt in reply to Geordieland]

My story is long and complicated but at one point, after refusing methotrexate multiple times, my dr. convinced me to try Planquenil. The good news was that it seemed to be working, but the bad news was it tanked my liver numbers. So I had to stop taking it. I was at 9mg prednisone at the time and have gotten down to 2 since then. My question would be… why do you need anything besides prednisone if you have been tapering successfully and down to 5mg. At that level, you should be permitted a very slow taper and not be forced to take additional drugs to try to reduce the steroids faster.

[Geordieland in reply to cranberryt]

Hi 🙂 I was given mtx for rheumatoid arthritis and it was never to reduce the pred . My consultant told me not to reduce my pred . I’m interested to know what else others have taken for RA and the side effects My liver ( ALT) also rocketed and I was dizzy and nauseous so stopped it 😔

[tangocharlie in reply to Baileyw06]

Glad to hear Lef and Plaquenil/Hydroxychloraquine seem to be helping, sadly neither did anything for me so it just shows it's worth a try as everybody is different.

[Bennej30]

Hi, I was given methotrexate at first and didn’t get on with it so am now on leflunomide which has side effects of its own but I feel better on this than when on methotrexate .

[tangocharlie in reply to Bennej30]

In what way out of interest, do you feel better than on steroids alone?

[Bennej30 in reply to tangocharlie]

I was put on methotrexate quite early on and was reducing steroids. At the time I was having difficulties with pain and movement and rather than increase my steroids I was given methotrexate. I felt awful on this, very down and just felt awful all over I guess. Leflunomide has been better although it has given me stomach issues.I have been off steroids since February and although not 100% I am doing ok except for a recent set back when I got over confident and over did things which I am now paying for. It’s definitely a learning curve as to what you can and can’t do and to build up slowly.

If my progress is down to the dmards I guess I will never know.

[Geordieland in reply to Bennej30]

Thanks for your reply 👍 It really is a very steep learning curve with so much conflicting advice !! Will report on my “ progress “ ☺️

[tangocharlie in reply to Bennej30]

It's impossible to know if the DMARD have helped as there is the possibility the PMR went away by itself or whether it is still running but at a very low level. The key thing is whether you feel well now, and whether it has actually gone away. Even then it can resurge and relapse so you are doing right not to push things. fingers crossed for you

[Geordieland in reply to tangocharlie]

Thank you 🥰 Will wait with baited breath and see what happens 😳 ! X

[Alebeau]

I refused MTX due to the list of quite scary side effects. I finally agreed to Leflunomide and have been taking it now for 8 months.

I do have some dizziness but the main side effect has been and still is more frequent visits to the bathroom.

I take 10 mg in the morning and 10 at night to reduce the above mentioned sides effects.

[Geordieland in reply to Alebeau]

Thank you - that’s good info to have 👍

[Prof99]

Hi there, I don't know how helpful this will be, but my story is that to help me get off the Pred, I was first prescribed Sulphsalazine which sent my Liver Functions well beyond the normal range. I was told to stop that immediately and my levels returned to normal within a week. Then we tried Azathiprine 25mg - which also sent my liver functions up again so we stopped that too. I have been fine on Methotrexate and am now doing a slow taper from 2.5mg Pred to 2.25mg (I tried a drop of .5mg earlier in the year and symptoms returned so I am trying a lower drop this time. The problem with a low dose is that .5mg is more than a 10% drop!!) We are all different, and our bodies respond differently to the different drugs - but Sulphasalazine and Azathiprine didn't work for me, where as MTX did. I just wanted you to be aware of two more drug names that may come up in your conversations with Rhemy.

[Geordieland in reply to Prof99]

Hi ! Thank you for your reply - it looks like we’re mirror opposites as I’ve been to rheumatology today and because the Methotrexate made my ALT in my liver function rocket I had to stop taking it and he has now prescribed Sulphadalazine ! He also suggested I increase my pred from 5mgs to 7 and a half mgs for 28 days then drop back to 5 mgs ? This has thrown me because that seems a big drop ??

[Prof99 in reply to Geordieland]

So the problem with this is that if you up your Pred to 7mg (a 40% increase!!!) at the same time as starting the Sulphasalazine - how do you know if the SS is working? And then, just as your body is getting used to, and appreciating the increase in Pred, you are advised to drop again - 40%? As you say, "he also suggested" ........ that doesn't mean you have to act on his suggestion. If it were me, I think I would stay at 5mg (as we all know what a nightmare it is to get lower) and just try the SS to see if you notice an effect.

[tangocharlie]

I started taking Hydroxychloraquine after 7 months of trying Leflunomide which had no effect whatsover. But then after just a few weeks, before it would have had a chance to kick in, I thought about it and decided to try MTX instead, after putting it off for many years, as it is probably the drug most likely to work, although there is no guarantee and no hard evidence for it. If this doesn't work, I'll go back to the hydroxy again and give it a proper go.

[Prof99]

That initial diagnosis of Enthesitis feels such a long time ago now. I had done a new exercise class so when I got odd pains in my legs I just thought I’d used muscles that I hadn’t used before, but when the pains were still there after a week I began to think that was strange. Then, one morning I woke up and couldn’t move. It was very scary. Fortunately my husband gets private health care from his employer so my GP was able to get me to see a Rhemy within a day. His diagnosis of Enthesitis was based on the fact that my pain, at that time, was mainly the joints at the top of my arms and legs and my hips. An MRI scan seemed to confirm his diagnosis and he was sure it wasn’t RA. The diagnosis of PMR came about when I was forced to transfer care to the NHS (as the insurance company wouldn’t cover ‘an on-going’ problem any longer.) I was under the same consultant but saw his registrar (at a very thorough, and long, appointment.) When I researched PMR I could see that this was far closer to my symptoms than Enthesitis – although, to be fair, there is very little information out there on Enthesitis.

[Prof99]

Interesting, but I am not looking to label it anymore. PMR seems to fit and the drugs appear to be working with slow tapers, along with positive thinking, yoga, generally keeping fit, a healthy diet and this lovely forum when I have a question or need to chat. Good Luck on your health path.