Methotrexate and me...........or not as the case may be!

[Ladyblue74]

Really needing a bit of advice here - I have had RA for years and have managed it just fine with a balance of diet and lifestyle. In February this year I contracted a really nasty virus that had left me with mega inflammation all over, after trying every trick in the holistic book I was still in agony and was referred to Rheumatology. The consultant started me on Pred for RA and possible PMR combined and the relief was immediate and wonderful, I was on 40mg with the intention to taper gradually to 7.5mg. Methotrexate was discussed to start when I got to 20mg Pred. I've had great follow-up with the Rheumi nurse and discussed all the pros and cons.

However........I have type2 diabetes that the steroid is playing total havoc with - soaring to Hypers and dropping to Hypos regardless of what and when I eat so having to monitor 2 hourly day and night. On top of this I also have Atrial Fibrillation and again the steroids are causing havoc sending my numbers dangerously low - my heart rate is very high (for me) at twice my normal.

I dispensed the Methotraxate last night but couldn't bring myself to take them - I couldn't put yet another drug into this body!

I feel that I should call the hospital and advise them my decision but really don't want to get talked into it but am not sure of the ethics.

What I would like to do ideally is just carry on tapering the Pred and just see what happens - if I stay pain free throughout the number drops and do it carefully I will then see if this is just a flare up and a one off - if not then will reassess the whole thing. Does anybody have any suggestions or an give me any advice........please?

[SheffieldJane]

Do you know, that sounds sensible to me. However, I am not a doctor. If you tell your doctor, quite firmly, that this is what you have decided to try, you might be surprised at how agreeable they might be. Your case is complex, you do need qualified advice, so that you can assess the risk, and have a safety net if it goes wrong. Good luck!

[Telian]

You do need medical advice but at the same time you can make your feelings clear on what your preferred treatment is - you can discuss they should advice you accordingly. I think someone else will be along on here with more experience in your particular situation.

[jinasc]

I came a bit late to this, but our RA nurse who came to give a talk, told us that Metho was the gold standard treatment for RA.

Some people develop what is called LORA (Late Onset R. A) then Metho is added to the Pred. There is a wealth of info on the ARC site, so I would investigate it.

[katiemills]

I’m no expert , but I thought methotrexate was one of the preferred drugs to treat RA and prednisone was the preferred drug for PMR. Anyway , my journey might give you food for thought....

I only have PMR ( October 2018) but 15 mg prednisone didn’t do the trick so ended up at 30mg. I don’t have diabetes or atrial fibrillation but it made my glaucoma worse and when I got to 20 mg my rheumy suggested methotrexate as a steroid sparer to help my reduction. I refused but I really struggled to get to 15 mg Pred ( even doing Dorset lady’s slow tapering plan) and at that point he suggested methotrexate again, saying that in his opinion methotrexate was less harmful to be taking long term than prednisone. I started to take 15 mg Methotrexate weekly ( and 5 mg folic acid) and felt fine so then increased the methotrexate to 20 mg . I felt absolutely dreadful for 4 weeks and was on the verge of stopping it so rang the rheumy nurse who told me to take 5 mg folic acid every day apart from the methotrexate day . That helped immensely and the side effects from the methotrexate stopped.

I definitely think the methotrexate has helped me reduce to 8/ 8.5 mg prednisone quicker and with less pain but feel I’m going to struggle to get much lower , so I was interested to read that your rheumy’s aim for you is to get to 7.5 pred. I seem to remember my rheumy saying something similar ........

I’m sure your rheumy is familiar with people who refuse to take methotrexate at first, but then change their minds later, like me, so don’t worry about that . I hope my story helps with your decision. Good luck !

[Odosmum]

OK, first thing I am going to tell you is that sounds as though you may have had covid-19 in February. This is important because one of the effects of covid-19 is that can make inflammatory markers shoot through the roof. (I am speaking from experience here because my well controlled RA drugs were not sufficient to control the inflammation. My exposure to corvid-19 might have been December and it is only now, after a change of meds that the markers are coming near to normal for me - and I have kept up with pred as well). Now your taking pred will probably have an impact on your inflammation, but with your diabetes being such an issue at present, you have to seriously consider alternatives. You cannot just stop the pred but some form of disease modifying drug (DMRD) has to be a way forward for you. There are alternatives to Methotrexate, but, it is very effective in most people and that is why your doctor is recommending you take it. The stuff written on the patients leaflet is very scary, but remember, they would not be offering it to you if they did not think it would work for you. I think that you have to accept that both your Diabetes and AF are reasons why you MUST be moving towards a lower dose of pred and possibly stopping it. Uncontrolled levels of inflammation in your body are not going to do your heart any favours either. Please think again about starting the Methotrexate and if necessary contact your GP and Rheumatologists for reassurance. I really do not think that you should sit back and wait.

[Ladyblue74 in reply to Odosmum]

Thank you - yes I too believe I had COVID as does the Rheumatologist.

(see my response to PMRpro)

I'm going to have a long chat with the hospital this morning once I've been for my blood tests. This is so complex as there are 3 different departments and issues, I wish I had a single point of contact between Rheumatology /Diabetes and Cardiac as none of the departments are able to see the big picture - just their own little snapshots.

Thank you for your input x

[Odosmum in reply to Ladyblue74]

With me, it was both the cardiology and Rheumatology depts that came to the conclusion independently. I had a series of mild heart attacks (no personal history of heart issues) at the end of January and they have come to the conclusion that it was the uncontrolled inflammation that was to blame. I have been very lucky because it turns out that there was no full blockage. They know because my heart muscle was not permanently damaged, only paralysed. I never heard of that before, but am grateful! Hence my concern about you.

[Ladyblue74 in reply to Odosmum]

Oh heck- that must have been scary - are you OK now?

[Odosmum in reply to Ladyblue74]

Yes, I absolutely am. They put a stent in one artery, but the others were fine. I had a full checkup at the end of June, when they told me my heart was working normally. No residual paralysis and no muscle damage. I have been discharged from cardiology. Talk about dodging a bullet!

[Ladyblue74 in reply to Odosmum]

Wow -, that's for sure x

[PMRpro Ambassador]

I'm a bit confused by this statement "I also have Atrial Fibrillation and again the steroids are causing havoc sending my numbers dangerously low - my heart rate is very high (for me) at twice my normal." because it doesn't make sense to me.

However - pred has a positive effect on my a/f, it is always worse when my PMR flares and I had to use pred to manage some of the effects before I was fitted with a pacemaker.

I also have to ask - have they not considered that what you had in February was Covid-19? That might not have been a factor at the time - but it is increasingly evident that it was present in all sorts of places in February.

[Ladyblue74 in reply to PMRpro]

Thank you and yes, I do believe I had Covid, I had every symptom and to a degree still have (my taste buds have never fully recovered) The Rheumatologist did run the test as that was his belief too and it came back negative, however he said the tests are not 100% by any means. Regarding the AF - my blood is clotting too quickly, the AF means my heart is in an irregular rhythm - when it does a little stop the blood pools in my heart chamber and starts to clot, when it kick-starts again there's a risk of pushing a clot into my bloodstream resulting in stroke. The Warfarin is supposed to be thining my blood but, for some reason it's not working like normal so they're blaming the Pred!!

[PMRpro Ambassador in reply to Ladyblue74]

I know all about a/f - had it myself for well over 6 years (that's when it was diagnosed) and the cardiologist is pretty sure it is due to the a/i part of PMR having damaged the sinus node cells as it originally started about the same time as the PMR symptoms 5+ years earlier.

Then the next question is why aren't they using another anticoagulant? I used a warfarin clone for some years until suddenly the INR started swinging about in a way that simply couldn't be controlled. It could have been anything - maybe pred but not necessarily. So I was switched to Pradaxa/dabigatran which is recommended for a/f, is taken 2x daily and has an antidote (unlike some others) so less to fear in that context. I don't know the details in the UK but most patients nowadays are not started on warfarin but one of the new generation anticoags. You do have to be careful with drug interactions which sometimes means taking tablets separately - my specific antiarrythmic must be taken 2 hours away from the anticoag but that isn't a great trial.

[Ladyblue74]

Yes - I'm sorry - when I re read your message I realised that I sounded really patronising! That wasn't my intention at all - apologies!

Trying to get a Warfarin alternative - they want to get these other issues sorted out first before changing yet another drug regime. I think a lot to do with cost to the NHS -, Warfarin is cheap! 8

[PMRpro Ambassador in reply to Ladyblue74]

The assessment here is that the other drugs pay for themselves in 10 months - because of the removal of requirement for testing (though here they do keep a closer eye on us!) and the control issues with warfarin.

But in that case they are putting your life at risk of stroke/heart attack if the INR is not controlled - mine could swing from 1.4 to over 4 within a week so I was sent home and told not to use knives or do DIY!!! If that is the problem - they won't sort anything out!

[Ladyblue74 in reply to PMRpro]

I was at 1.2 on Thursday but just tested at 2.3 thank goodness! Have never been higher than 3.9 though! Strikes me that unless I make a lot of fuss it's not going to get changed - I bought it up a few weeks ago and was told "lets just get this current problem sorted out then we can chat about it"- Watch this space!! Where is home to you?

[PMRpro Ambassador in reply to Ladyblue74]

Northern Italy

That is a big rise in 4 days - and the increase with warfarin lags, it could go higher. That was the problem I had. They fiddled for weeks before giving in and admitting it wasn't going to work!