Steroid sparing - or maybe not?

[BlindTechie]

I'd be very grateful for any advice or experience that others can share about the decision to embark on steroid sparing with methotrexate. This has just been recommended by my rheumatology nurse and, following her explanation of the process I have some concerns.

I started GCA headaches in January 2022, followed by PMR in March 2022 and diagnosis in late March 2022 and prescribed 60mg pred with the usual tapering regime. That pretty much fixed all symptoms in a couple of days.

I've had a few flares during tapering, mostly mild headaches until the final stages.

In July 2022 at 10mg I was advised to raise to 12.5 and this worked. I was then advised to taper by 1mg per 8 weeks and did so using the varied daily dose scheme recommended in the FAQs here.

In May 2023 I reached 3mg and began to experience PMR symptoms. Rheumatology nurse advised 3.5mg but this didn't work and I followed advise here in FAQs to raise by 5mg which did work.

I decided to taper slowly at 1 mg per 8 weeks from 9mg, taking a more cautious approach than that recommended.

All mostly fine until I went below 3mg in February 2024. Increasingly severe PMR symptoms and mild headaches again. The rheumatology nurse suggested that the muscular problems may be atrophy due to the steroids and recommended tapering rapidly at 1mg per month to zero.

With misgivings, I did that and the PMR symptoms worsened. I couldn't make contact with the nurse so decided to return to 5mg pred in early July 2024 and this fixed PMR symptoms. Eventually contacted nurse and blood test confirmed high CRP and viscosity and now I'm back on 40mg and tapering down at 10mg per 2 weeks.

I feel that my mistake was to overrule my misgivings and to taper far too quickly past the dose that had caused me trouble previously.

Methotrexate is now being recommended to shorten the period on which I continue to use pred. I was happy with this until I realised that I would stay on methotrexate indefinitely and that this would definitely lead to reduced immunity.

My voluntary work means I do a lot of travelling by bus and visiting others in their homes and I'm more concerned about the inconvenience and risk of compromised immunity than whatever the risks of remaining longer on pred. I've not, to my knowledge, suffered any serious pred side effeccts and my bone density is fine so I'm inclined to request that I be allowed to experiment one more time with a slow tapering before finally resorting to methotrexate if that proves necessary.

I'd love to hear from others who have had to make similar choices.

Thanks

[SheffieldJane]

Hello,

I think your instincts have been pretty sound so far and I would be inclined to keep plodding along with the slow taper. In my view there is little point in trying Methotrexate ( which can be rather hit and miss) at this late stage. There is no hurry at a relatively harmless dose. Some of your Rheumatology Nurse’s advice made me wince. I believe it is highly unlikely with your active life especially, that you have developed muscle atrophy. Honestly, I would carry on following my own star.

[BlindTechie in reply to SheffieldJane]

Thanks, I appreciate your advice.

[PMRpro Ambassador]

If you can get back to 5mg without problems I would aim for that - and then anyone who wanted to add MTX at that stage would be rather OTT, and as my mother would have said "needs their head read"???

Shame - I bet a modified flare protocol would have sorted it out without going back to the start. They rheumy nurse was being a bit cavalier - with no knowledge of your adrenal status telling you to drop quickly from 3mg - that is where you really need to go even slower.

[DorsetLady PMRGCAuk volunteer]

Never offered steroid sparer and agree with others on reduction etc to date.

Would just say it took me longer to get from 10mg to zero than it did to get from 80mg to 10mg.

The lower you get on Pred, the slower the taper needs to be - for your illness (lot less spare Pred sloshing around and 2years is nothing in PMR terms) and your adrenals…

[Charlie1boy]

Just to endorse what DorsetLady says, it took me two and a half years to get from thirty mg to five mg, then five and a half years to get from five mg to zero. Took three goes to get to zero before finally making it!

[piglette]

In my opinion the nurse you saw should not be allowed loose in recommending drug use. They don’t seem to have a clue. It seems you are doing the right thing in spite of them.

[PMRpro Ambassador in reply to piglette]

Wonder if she had done the prescribing qualification ...

[piglette in reply to PMRpro]

Good point!

[BlindTechie]

Thanks so much everyone. I think that's my decision made to decline methotrexate and get on to careful pred tapering in the final stages. Very slow final pred tapering seems a much better option than compromising my immune system with methotrexate and I'm pretty confident I can get back down to 5mg with little difficulty. Thanks all.

[Greensleeves in reply to BlindTechie]

I thought the nurses advice was awful to be honest. Personally I’d continue what you’re doing without adding more medication.

[KASHMIRI1]

Hi! I restarted methotrexate at 5 1/2 mg a few months ago and have been reducing pred by half a mg every two months and it has so far made the reductions very easy. I have always found pretty awful withdrawal symptoms every time I reduced pred that lasted well over two weeks. I am hopeful that I can continue to take it.

[DorsetLady PMRGCAuk volunteer in reply to KASHMIRI1]

Do you use one of the slow tapering plans for your reductions we are always recommending, they usually help reduce the steroid withdrawal issues - one of the reasons they were initially designed.

[BlindTechie in reply to DorsetLady]

Yes, thanks. I have used the slow tapering regimes described here. Until they were drawn to my attention, by you I think, it hadn't occurred to me that my body would somehow average varying daily doses and allow me much finer control over reductions than a pill cutter! Sadly no such advice came from the hospital rheumatology department. I'm planning to do some very fine adjustments over the final reduction from 4mg when I get there again and will definitely use the slow taper regime to make the early reductions. I'm waiting now for the reaction to a letter I've sent to the hospital rheumatology department outlining why I don't want to try methotrexate at this stage. I do wish I could communicate with them electronically. The letter they sent me dated 11 July with the versusarthritis methotrexate leaflet arrived yesterday (23 July)!

[DorsetLady PMRGCAuk volunteer in reply to BlindTechie]

Actually my question was addressed to KASHMIRI1 re their steroid withdrawal issues, but good to hear you are aware of slower tapers. 😊

[KASHMIRI1 in reply to DorsetLady]

I hadn't when I was on higher doses. I went back on methotrexate because my markers had increased over three months and I think my rheumy was keen for me to go on meth rather than up steroids. I did feel the same when it was suggested.

[BlindTechie in reply to KASHMIRI1]

Thanks for that. It's the first pro-methotrexate response I've received. I'm grad it's helping you. For now, I've decided to hold off and persist with slower tapering in the final stages. If that doesn't work for me then of course I'll be happy to try methotrexate.

[PMRpro Ambassador in reply to BlindTechie]

Maybe I should explain that I am not anti-MTX in general. It works very well for some patients and you do have to try it to find out if you are one. However, the really good and experienced in PMR rheumies would have introduced it sooner rather than now youa re already at a lower dose on your own. There are no guarantees with it and only a small proportion of patients really benefit - and below 5mg, it is a balance between the PMR and adrenal function returning.

[KASHMIRI1 in reply to BlindTechie]

If you do don't worry to much if it doesn't work or gives you problems you can stop it without a taper.