Steroid sparers?

[AnniesRyder5]

I have just read Viveka’s post which was so enlightening and worrying at the same time. But this is the first time I’ve heard of steroid sparers.

What are the criteria for considering this treatment instead of pred for instance?

I have been on pred for 2 years and currently down to 8mg but so far I haven’t managed to get below 7 without a flare.

In anticipation of hitting the same wall I emailed my GP practice (from where all the original GPs have defected) and a very nice-sounding GP advised I just stay on the 8mg dosage for an extra 2 weeks (now 8 weeks).

Isn’t that just dandy ?

Because she doesn’t have to make a real decision.

[123-go]

DMARDS - steroid spares are prescribed in situations where the patient doesn't respond satisfactorily to Prednisolone, e.g. has repeated flares despite following a sensible tapering plan or develops another PMR related condition which requires a further immunosuppressant to manage inflammation.In my opinion 2 years is perhaps too short a time for consideration of a steroid sparer: happy to be corrected here.

Could you tell us more about your tapering plan that got you to 8mg, please?

[AnniesRyder5 in reply to 123-go]

Thanks DI started with 15mg

And over the last 2 years I have reduced to 7mg 3 times but the subsequent flare was so painful that I had to add 5mg and taper down again

This happened 3 times always under the advice of a different GP.

[MrsNails in reply to AnniesRyder5]

Hi Annie - my first thought is your Adrenals as we when we get to around 7mg that is the approximately the equivalent of what we need each day (the Physiological Level) Thats kept happening to me but it was at 11mg & l had to keep starting again from 15mg until l had two major flares resulting getting stuck on 20mg……

I was extremely reluctant to try MTX but l was facing a No Win Situation Health Wise, l was staring down the barrel of a gun - my weight, heart, lungs, vision were all impacted & they thought l was going into heart failure!

As 123-go has explained prescribing a Steroid Sparer you’ll get more bang for your buck.

I tapered easily from 18mg to 7.5mg so l was always prepared to tolerate side effects - now l have none!

Are you in the U.K.? As a GP can’t prescribe8 any of the DMARDS initially it has to be a Rheumatologist.

Another thought - are you dropping in 0.5mg steps?

The other thing is - to quote Pro - it’s not a relentless taper to Zero but to the lowest dose possible to keep the inflammation at bay & subsequently the pain…..

I have written about my MTX Journey & you’ll find it in FAQ’s

Kind Regards

MrsN

[AnniesRyder5 in reply to MrsNails]

Thank you Mrs Nails - I much appreciate your advice and shared experience

[123-go in reply to AnniesRyder5]

You have received excellent replies from our experienced and knowledgable members 😀. We are indeed fortunate. I wish you well as you go forward.🤞🏼

[AnniesRyder5 in reply to 123-go]

So true 🎅

[PMRpro Ambassador]

You aren't ever heading relentlessly to zero - you are looking for the lowest dose that manages the symptoms at any given time. The underlying autoimmune cause of PMR can last a lot longer than the 2 years they so glibly trot out so often - and as long as it is active you need some pred. How much you need varies a lot - depending on how much you absorb of that oral dose, the disease activity, you and your personal needs. That's why we titrate the dose to find our personal right dose. You appear to have found it at 8mg. Your body has told you that pretty clearly!!

It is claimed by some doctors that DMARDs can allow you to have a lower dose of pred - but it is very rare that you get off pred altogether and it is at the expense of adding another layer of potential side effects. The only way to find out is by trying it. I would say if you are stuck above 10mg then it may be worth a go - but most good doctors stop panicking at 8mg as that is what is called a physiological dose, similar to what you require in the form of the natural corticosteroid, cortisol, in order to function.

I tried methotrexate - and experienced steroid side effects I had never had before! The fatigue became overwhelming and I stopped it because I wasn't prepared to feel worse than I ever had with pred and even untreated PMR!

There are lots of posts about it if you look at FAQs and the related posts.

[AnniesRyder5 in reply to PMRpro]

Thank you again- I wish the local GPs were as knowledgeable and caring as you 😷

[PMRpro Ambassador in reply to AnniesRyder5]

They haven't got it!!! Nor have they listened to as many experiences

[DorsetLady PMRGCAuk volunteer]

Further to other responses would say adrenals may be the issue - so have a look at this post -

healthunlocked.com/pmrgcauk...

and maybe try a slower taper -

healthunlocked.com/pmrgcauk...

before you think about adding in another drug - with it's own side effects.

[dancersize2]

I was stuck on 6mg pred after 18 months on pred. Stuck for six months so rheumy recommended Methotextrate. Found some side effects but stuck with 20mg weekly plus folic acid on the other days. Got down to 2.5 mg in 12 months. Now two more years have passed. Down to 1/4 mg pred and 15mg weekly of MTX. Trying to add zero pred days, Feeling better on 15mg of MTX than I did on 20mg.

[PMRpro Ambassador in reply to dancersize2]

That is a the sort of rate of reduction you see in patients NOT on MTX as well. To get lower than 6mg in 18 months is relatively unusual with one retrospective study finding half of patients get to 5mg in 18 months.

[AnniesRyder5 in reply to PMRpro]

Thank you - one day I might think I know even a little!

[PMRCanada]

I’ve been on steroids from 3.5 years, starting at 20mg. For the last two years I’ve been “stuck” at 9mg, despite trying to taper down to 8.5mg very slowly (5 times).

There’s not many options for PMR treatment/steroid sparing, but I’m giving methotrexate a go in the new year (14 days after getting my 3rd COVID shot). I’ve been instructed to stay on 25mg methotrexate (injectable weekly), for 4 weeks, and if tolerated begin to taper pred down 1mg monthly. No taper was provided however I do have access to a few sample tapering schedules. This is supposed to continue till I get down to 4mg.

Sounds straightforward and simple, but not sure it will be given a drop of only .5mg of pred is a challenge. Hoping I don’t get side effects, and I’m not keen to avoid sun exposure as I’m a big fan and spend loads of time outdoors in good weather.

Everyone seems to react differently to methotrexate from what I’ve read. So I guess I won’t know till I try. I tolerate pred well (minimal, manageable side effects), but when I asked one of the clinics interns what the biggest concern was about long-term steroid use was, he replied bone deterioration and “mental issues”. To which I responded, then why am I only afforded a bone scan every 3 years, and why is there no alternative treatments. I also added that I’ve not experienced any mental issues except some mood swings at much higher doses.

In the end, if I can’t lower my daily pred dose, at least I’m stuck at a moderate dose. I hope you can find a way forward that works best for you.

[PMRpro Ambassador in reply to PMRCanada]

My mental issues were far worse with untreated PMR than anything I have had while on pred - and that includes the last 2 years. I don't think it is unreasonable to say that without pred for the last 2 years I'd have been a real basket case!

[AnniesRyder5 in reply to PMRpro]

I agree and despite some off days I feel as if I’ve found a magic compound which has taken a few years off my physical and therefore mental age.

[Constance13 in reply to PMRpro]

You're lucky - only "the last two years"? 🤪

[PMRpro Ambassador in reply to Constance13]

If you mean I'm a basket case anyway - I know

[AnniesRyder5 in reply to PMRpro]

You and me both 🥳

[Constance13 in reply to PMRpro]

There are quite a few of us on here!😂👵🏻

[AnniesRyder5 in reply to PMRCanada]

I would say that your experience is far from straightforward or simple. PMR is not life threatening I agree but I find the not-knowing how we will respond to our treatment does affect us mentally.

[MrsNails in reply to AnniesRyder5]

It may not be Life Threatening but it is certainly Life Changing……