Taper advice

[papadapadoo]

I was diagnosed in December and started at 20mg prednisone, which did the job. After 6 weeks I went to 17.5, then to 15, then to 10, waiting about 3 weeks each time and alternating. Now my doctor wants me at 7.5. My question: is this too fast? Have others made this jump successfully? Thanks for any advice you can give.

[DorsetLady PMRGCAuk volunteer]

Too fast…

“This is tapering regime from guidelines -

The suggested regimen is:.

Daily prednisolone 15 mg for 3 weeks.Then 12.5mg for 3 weeks.

Then 10mg for 4–6 weeks.

Then reduction by 1 mg every 4–8 weeks

*However, there is no consistent evidence for an ideal steroid regimen suitable for all patients.

Therefore, the approach to treatment must be flexible and tailored to the individual as there is heterogeneity in disease course.

Some benefit from a more gradual steroid taper.

Dose adjustment may be required for disease severity, comorbidity, side effects and patient wishes”

[papadapadoo in reply to DorsetLady]

Thanks, DorsetLady. I am trying to gauge the effect of the LDN and therefore was wondering about dropping more rapidly from 10 than the guidelines suggest. If it works for me when it is too fast for others, I will learn something. If not, it's back to slow.

[DorsetLady PMRGCAuk volunteer in reply to papadapadoo]

No experience of LDN -either personally or from comments on forum so can’t hazard a guess whether it will be achievable.

But always worth a try …..

[Hidden in reply to DorsetLady]

what is LDN

[DorsetLady PMRGCAuk volunteer in reply to Hidden]

Low Dose Naltrexone - is occasionally discussed on here -

verywellhealth.com/low-dose...

[Sharitone]

I'm impressed you got from 15mg to 10mg in one go! Generally people don't reduce by more than 10% at one go. Personally, I never reduced by more than 1mg under 10mg, and I think that's what most people do.

[papadapadoo in reply to Sharitone]

My error, sorry. I was at 12.5 between 10 and 15. On my second day at 7.5 all is well, but I am also taking low-dose naltrexone.

[PMRpro Ambassador]

From 10mg - 1mg at a time is more than enough. LDN or not - this is the point at which adrenal function turns up to play a role.

[papadapadoo in reply to PMRpro]

Thanks, PMRpro! I had thought adrenals might or might not kick in below 7. At any rate, I should find out pretty soon. Sixteen years ago I had very heavy dexamethasone over 8 weeks for a brain stem inflammation. The difference is that the infection that caused that inflammation was killed by heavy antibiotics. I wish we knew what caused PMR. If it should turn out to be a virus, as some suspect, the irony would be that the prednisone would be contraindicated, whereas LDN might help by boosting the immune system. I gather it is difficult to get LDN in the UK, and of course there is no hard info about how it works on PMR. I'm trying to find out.

[Loyd]

way too fast IMO! I made the mistake of going too fast when I was under 10mg 3 times with bad flairs! I’m at 3 and a quarter now (after 4 years!) and going down a quarter a month. Good luck. Doctors often don’t know much about PMR. Hope you do well.

[Flivoless]

I my humble opinion you have already tapered too quickly. I certainly wouldn't consider tapering at more than 1/2mg at a time from10mg and below.

[papadapadoo]

Many thanks for all responses. I'm afraid my query was misleading or incomplete. What I hoped to find out was if someone had successfully or unsuccessfully tried this taper solely on prednisone, so that I could measure the impact low-dose naltrexone had on my PMR. Should this too-fast taper be successful for me, I would be encouraged to continue to pursue LDN as an alternative or at least an adjunct to prednisone. From other posts in this forum I infer that LDN is not widely known or used in the UK, but here in the USA it is now being used to alleviate many autoimmune diseases and has been formally approved for use in long covid.

[Chiqui1950 in reply to papadapadoo]

I am tapering solely with prednisone--- cautiously with a schedule similar to the one suggested by DorseyLady. This forum is wise and knowledgeable and it has helped me tremendously!

[Colleen1974]

What dose of LDN are you taking? I've tried to take it but it makes me incredibly tired. I'm currently on 9mg of prednisone.

[papadapadoo in reply to Colleen1974]

I started with 1.2, then 3, now 4.5mg LDN tablets. After 2 days of the big taper all is well, but I am on the alert for a flare. One night I woke at 3 AM and reaqlly felt the endorphin rush!

[Strelitzia]

I have realized there is no hurry getting to zero prednisone. As long as you protect your stomach with food when taking it. The key thing is to go gradually. After 15 months I am down to 5 and a quarter mg. I am reducing one quarter a month now that I am on a low dose. My new rheumatologist says 5 and under will not do any harm. I hope he is right! To repeat the experts on this forum…our goal is to be pain free. Good luck!

[LemonZest11]

Hi there papadapdoo, I’m coming to this a bit late but I thought it worth telling you about the analogy that PMRpro and DorsetLady use to describe how a flare can creep up on you. They aliken the slow increase in inflammation, when you are not having enough pred, to a dripping tap slowly filling a bucket until it overflows, that is, you experience a flare. The problem with fast tapering is that you don’t get a chance for your body to demonstrate if that dose is ok for you. If you persist, all of a sudden your bucket can overflow and you have to go back to square one. It happens a lot, in fact I am hopeful at the moment that my own bucket is not being filled, drip by drip.

[papadapadoo in reply to LemonZest11]

Thanks, LemonZest11! I am aware of that analogy, which is very clear and makes sense. Of course, we don't know very much about the evil disease that pumps out the cytokines each night. One thing I don't know is to what extent the degree of inflammation depends on the severity of the underlying disease. Nor do I know if the rate changes over time, or as a result of environmental influences (which may have triggered the PMR in the first place). Since the rate of PMR cases is growing rapidly, perhaps some lab will be able to define the disease--and then maybe we can talk about a cure. Till then I think it is useful to explore other mitigating solutions, and that is why I am trying to see if low-dose naltrexone can supplement, and eventually replace, prednisone. In terms of Dorset Lady's analogy, I am hoping that LDN is a second scoop in the bucket.

[LemonZest11 in reply to papadapadoo]

Well all the best with your research, I hope you make a discovery, to the benefit of us all. 🤞

[Chiqui1950]

Dear Papadapdoo, to reduce every three weeks was too fast for me, every 5 weeks worked much better and have been able to avoid a flare this way. But you are also on LDN and it may allow you to follow a quicker schedule. For me, looking at my ESR levels (below 18 and preferably 12 or so ) and CRP (3 or below) levels before I taper has been really important to do it safely and also paying attention to symptoms. It will be great once to get to 7 1/2 and maybe can taper by one from there. Best of luck!!

[papadapadoo]

I belong to a Facebook group about LDN. Mentions of PMR are plentiful in that group, although PMR is not among the leading diseases addressed there. I have compiled a spectrum of stories about LDN use for PMR, which you can see on my Google drive: tinyurl.com/2q8ebstu.

[PMRpro Ambassador in reply to papadapadoo]

Yes, my daughter said that. Not so easy to get LDN here where I live though!!!