Methotrexate

[Dobermanlover]

Have had no luck getting down from 10 mg Pred per day, below that my life is rubbish. Saw the Rheumy yesterday and he has suggested I try Methotrexate as a way of reducing. Has anyone tried this? I am sure I have seen this mentioned in the past. I have a leaflet on it (which to be honest makes quite scary reading!) and am due to go back to the clinic next week to discuss how to take it. I know that Pred does not do you any good long term, but this drug does not appear to be harmless! Oh how I wish the PMR would just go AWAY!!!!! Sorry frustration taking over.

[SnazzyD]

Oh dear, your post oozes frustration. Can I ask, when going below 10mg how big are your jumps in dose and for how long to you stay on each dose before trying again?

[Dobermanlover in reply to SnazzyD]

I was using the dead slow method, 1 mg at a time, when I got to 8 mg went to half mg. Got down to 7 mg and was on it for a few months, but as soon as the nicer weather came and I was able to get into the garden, I couldn't do anything very much without getting exhausted. Was advised to go up to 10 mg and immediately, (well after a couple of days), felt so much better and on that dose feel normal (well almost). Of course the Rheumy is concerned about me taking too much Pred., but I am wondering that is it better to stick with the devil you know, than introduce a new drug with dubious side-effects.

[SnazzyD in reply to Dobermanlover]

I know we’re all different but around 7mg I hit the skids, feeling much worse than I had for ages. I felt achey but not stiff and soo fatigued and it also happened in the summer when gardening was beckoning but I could only fiddle with it. Getting up in the morning was for the first time in my life hard work and when I went on a day trip to some gardens I suddenly couldn’t stand any more. I found myself feeling very low and without warning like I had nothing left in the tank. My gut feeling was that it was my adrenal function because I had no GCA signs at all. My assumption was that it was too little Pred to keep me going but too much for my adrenals to realise they had to do anything. So, I pushed on, reducing 0.5mg every 6-8 weeks. Once I got to 5mg the fog started to clear but my summer had gone in the murk of fatigue. Later on an Endocrinologist agreed with my deductions.

Many people on this forum have said around 7mg is tough. It might be worth keeping going but with 0.5mg drops, provided you are not getting an increase in pain above withdrawal pains if you get them.

[DorsetLady PMRGCAuk volunteer]

Similar question to SnazzyD - perhaps you need to rethink how you reduce from 10mg.

0.5mg a time and maybe a slow taper - if not already - such as this - there are others see Steroid Tapering Plan under Pinned Posts -

healthunlocked.com/pmrgcauk... Posts

Plus are you in the mindset that your PMR should be gone by now - and trying too hard! I know you have had PMR for 4 years, but maybe you still have a way to go.

Don't beat yourself up about it, and hold off on the MTX for a while.

-

[PMRpro Ambassador]

MTX made me feel even worse than unmanaged PMR! All it did for me was cause so-called pred side effects I'd not had before and the fatigue was overwhelming. By the time I got to a month I couldn't face it any more.

I've been on pred for over 10 years, had symptoms of PMR for over 15 years now, and I feel pretty good on 10mg pred. Like you I have once been well below 10, even reach 5mg for a few months, but then it came back. I have no adverse effects of pred we can identify. Luckily though I have 3 doctors (GP, rheumy and cardiologist) who believe quality of life is all and I have that with just pred. The suitcase for medication is big enough without adding more.

Immunologists are concerned about the random use of multiple immunosuppressants in cases like ours - they say there is some evidence that the long term effects on the immune system are worse than just using pred at a couple of mg more.

[Dobermanlover]

Thank you, I can always rely on a sensible reply from you! I really do feel normal, (or as normal as anyone with osteoarthritis in knees, hands, feet and spine, also severe scoliosis and being 77 years old), on 10 mg, with no obvious side effects. It seems doctors have a fixation about getting us off Pred., though he did say yesterday that my quality of life was the most important thing! Quite a revelation!

[scats]

I am in a very similar position to you, except I ha ve only managed 3 weeks on 9mg before having to return to 10. If you click on my profile and read the post First Appointment, you will see my reasoning, and peoples replies.

I understand your frustration completely but PMRpro's point about quality of life is important.

[scrambledegg]

I am just the same as you. Have been on 10mg for about 3 years or more now with a few unsuccessful attempts to reduce. I'm sure I've read here somewhere that 10mg isn't considered a high dose and I'm certainly not being pushed by RHeumy or G.P. to reduce - l' m just left to my own devises and all the time 10mg works for me I'm not worried to be on it. I'm most of the way down to 9mg now on a DSNS method so here's hoping on what must be my 10th attempt!

[Smokygirl]

Best of luck with the DSNS tapering. Just had to say how much we adored our two Dobes! I used to breed & show Shetland Sheepdogs & thought they were intelligent until we got our first Dobe! Soo clever! But the oldest Shellie ruled the pack! Every good wish xxx

[Dobermanlover in reply to Smokygirl]

Yes they are a very special breed, we're on our 5th & 6th - love them to bits - thank you for your good wishes. xx

[suzy1959]

I too am similar to you!

I have had PMR for 7.5 years and, looking back , have only been comfortable on 11mgs for all that time. I have tried all sorts of tapering methods and amounts but have always flared and gone back to my safe 11mgs. I have tried 3 DMARDS- Methotrexate, Leflunamide and Mycophenlate. None have prevented flares, so not worked. I have also had flares due to OA pain alone even without tapering!

I have decided that I can't expect my PMR to budge until I have got rid of the OA pain, so I have had both hips and a knee replaced so far and expecting the other knee to be done in the new year. Then....who knows?

[scats in reply to suzy1959]

You certainly can't be accused of not trying everything, interesting that they all failed for you. I think you have the right attitude acceptance of what is happening reduces stress and will help you in the end. I hope all the surgery helps.

[Blearyeyed]

It is frustrating but you will get there , we have faith in you.

Lots of good advice above , and you can see that their are both positive and negative experiences of MTX , everybody is individual in the way they react to medications.

Mrs Nails has been doing a number of posts recently on Methotrexate and her experience , and has links to her past posts too , she is on holiday at the moment or she would be here reassuring you , but you can still visit her lovely informative posts and read peoples replies by looking on her profile page , or in pinned or related posts in the side bar next to this post.

I'm sure this will help you , take care xx

[astley123]

I was on a high dose 15mgs metho once a week 18 months ago but I got a chest infection and had to stop Doc blaming it on the metho

My consultant persuaded me to try again on a low dose last August 7.5mgs and it worked helping to bring my pred down to 5mgs to date. Unfortunately a couple of weeks ago my blood test showed low white blood cells and low neutrophil count. and my consultant has taken me off metho. Obviously using metho has to be carefully monitored

[pugrescue]

Not sure my own reality has too much relevance to yours as I have GCA, and am on much higher pred doses. Started at 50mg and now at 25. Had a lot of trouble at 30mg, added MTX 4 wks ago, and the taper since then went smoothly for the first time. Some have so many adverse reactions to the pred that a try at another therapy is certainly worth taking under consideration. MTX is the same as any other drug, some will react to it negatively BUT many won't. It is worth a try if you are stuck/frustrated with your pred dose. You can always stop taking it if you find you don't tolerate it well. It is not like pred where you have to taper etc. So far I have only had a mild upset digestion the next day after injection, and then fine. If it helps me lower the pred, that is something I can easily put up with. You do monitor blood with monthly tests, so any negative effects can be recognized even if you don't have physical symptoms.

[Tamtan2]

Take care we are all facing the same frustration 🙏🏽 Good luck

[Tamtan2]

Yes and now I have a nodule, my right lung and the worse breathlessness For the last 3 months wish I hAd never taken it.🙏🏽 Think hard and get info on what it does to your lungs not everyone it affected but get more info Before you start.🙏🏽😘