Stop Prednisone completely?

[Mansplainer101]

I was diagnosed with PMR about one year ago and placed on 13mg of P. It hit me most in the shoulders and hips: e.g., I could not pull up my trousers because the action of doing so naturally moves your elbows towards the rear of the center line of one's body and that caused great pain. Could also not thread my belt through the trouser loops for the same reason and, naturally, had great difficulty sleeping.

Went to bed w/o PMR, arose next morning with a full-blown case.

Started on Prednisone took 13mg, went to bed, arose next morning and the PMR was gone. It was a little miracle and I have been worshipping at the altar of St. Prednisone ever since. I have had zero flares.

The results of the blood tests in August 2022, when diagnosed, were:

Rheumatoid Factor: 11.4 [Reference interval is <14.0]

Sedimentation Rate - Westergren: 32 [Reference interval is 0 - 30] High

C-Reactive Protein - Quant: 15 [Reference interval is 0 - 10] High

In November 2022, three months later the results were:

Rheumatoid Factor: this test was not repeated

Sedimentation Rate - Westergren: 2

C-Reactive Protein, Quant: <1

I am now down to 1 mg every other day. I am back to the gym, almost daily, working out on the rowing machine three days in a row, then doing one day of free weights/planks/dead bugs/etc.

I am debating whether to simply stop altogether. I have a routine physical exam coming up in 2 months at which time I will request another blood test and chat with the doctor about this problem.

I guess what I am asking here is what have been the results when others have completely stopped taking Prednisone?

Many thanks for any advice.

Bob

——

“The older you get, the healthier you have been”

- Peter Attia MD

[DorsetLady PMRGCAuk volunteer]

So long as the PMR has gone into remission when people stop Pred there shouldn’t be too much of problem so long as adrenals are given time to get back to full function- but that can take anything up to 12 months.

You don’t know your PMR is in remission until you have been off the Pred for a few months with no return of symptoms. However I would say if your PMR is gone in about a year, you are one the very fortunate ones, it can last a lot longer.

Reduced ESR and CRP look good, but you must remember that the Pred is keeping them low and it doesn’t necessarily mean PMR is in remission.

Hope it is, but as I said, time will tell … and you may find the very small dose of Pred are on is doing more than you think.

Good luck

[Deneez99 in reply to DorsetLady]

I have been on my journey for 3yrs and eventually got down to half mg every other day. FLARE UP.... started with pins and needles in my hands then full blown CTS so I have now had to increase my dose and start to reduce again.

[SnazzyD]

Regards the PMR, the only way you’ll know is how your body reacts after some weeks or months after you have stopped. If you still have a very low level of inflammation it’ll take longer to build up to a symptomatic level. Even 1mg can be enough to hold that at bay. Perhaps cut down even more and see what happens?

Remember that the 1mg of Pred is taking the place of 1mg’s worth of cortisol production every other day. If you suddenly take it away the adrenal glands need to make up for that. If they are working fine, you won’t notice the difference but if they are still a bit sluggish, you may find fatigue is noticeable until they catch up.

Unfortunately, others’ experiences won’t tell you what is going on in your body. You can but try as long as you have no symptoms niggling away, and time will tell.

[Mansplainer101 in reply to SnazzyD]

Interesting what you say about fatigue. While I do not feel overall general fatigue during the day, I have noticed that if I am sitting down reading or sitting at the computer I am fairly likely to doze off. Yes, I know that's not unusual for an 84 year old, and I was dozing off before starting Prednisone, but it is noticeably more frequent now. We'll see what happens when I completely stop taking Prednisone.

[SnazzyD in reply to Mansplainer101]

Do make sure you carry Pred with you when out and about just in case you meet with some physical challenge like an accident which requires a quick and large cortisol output. Medical advice says you should have a medic alert on you to say you have been on Pred for a year after stopping. Even when I had been off Pred for up to 2 years I was still caught out a few times and needed to take extra due to deal with a physical collapse. To be fair I had had a hard time with adrenal function previously but at these times I thought I was fine.

[Mansplainer101 in reply to SnazzyD]

Good advice on keeping Pred. available when you are out and about.

While I do not wear a medical alert bracelet, I am never w/o my iPhone and, as you may know, you can set up an iPhone so that if, for instance, you are unconscious and an EMT is at your side, he/she can access any medical data you choose to make available if you properly set up your Health.app ahead of time. I suspect that the same feature is available on Android phones also.

[PMRpro Ambassador]

Most people do get off pred altogether - but that will only happen if the underlying autoimmune disorder is in remission. We know from experience that even 1/2mg pred can be enough to keep low level activity PMR under wraps - it prevents the inflammation building up over time. As Snazzy explains, there is also the question of how much that pred is contributing to adrenal replacement.

The only way really to find out is to take the plunge and stop the pred. Whether you do it over a couple of months taking less and less or just stop is entirely up to you Either way, if you decide to stop do so with an open mind and don't be in denial if it is really only at a low level of activity and you get symptoms again as any left-over inflammation builds up. Ignore that at your peril!

Did your PMR appear after a dose of Covid by any chance?

[Mansplainer101 in reply to PMRpro]

AAMAF, it did. Let me check the dates...

My first Moderna COV ID shot was on 19 Feb 2022.

My "medical log", which I keep, indicates I saw my doctor on 21 Feb.

With the amount of pain I was experiencing, there is little doubt in my mind that my doctor's appt. was hard on the heels of that COVID shot, so it does indeed look like within a day or two of that first COVID shot, my bout of PMR began.

My goodness!! I had never checked the dates that closely before but now that I have, I wonder if the COVID shot brought on the PMR. I had two boosters after that, one in March and one in November of 2022, but no shots since.

I am due for my first COVID booster shot since November 2022, this coming Friday.

I approach this shot with some trepidation.

[PMRpro Ambassador in reply to Mansplainer101]

They have identified a connection between vaccinations as the trigger and PMR - other vaccines can do it too but there were a lot of vaccinations in the age group so you would expect an increase in examples - and also that vaccine triggered PMR seems to be shorter in duration than other forms.

AAMAF?????

[Mansplainer101 in reply to PMRpro]

Whoops. Should have typed AAMOF - As A Matter Of Fact.

If I may: who are the "they" of whom you speak. I have done a few searches on any connection between COVID vaccinations and PMR and found answers like this:

There is a possible link between COVID-19 vaccinations and polymyalgia rheumatica (PMR), but more research is needed to confirm this.

There have been a few case reports of people developing PMR after receiving a COVID-19 vaccine. However, it is important to note that PMR is a relatively common disease, and it is possible that these cases were simply coincidental.

A study published in the journal Rheumatology in 2023 found that the rate of PMR was slightly higher in people who had received a COVID-19 vaccine than in those who had not. However, the study's authors concluded that this difference was not statistically significant, and that more research is needed to determine whether there is a true link between COVID-19 vaccination and PMR.

Overall, the evidence for a connection between COVID-19 vaccination and PMR is limited. However, it is important for doctors to be aware of this possible link, so that they can properly diagnose and treat people who develop PMR after receiving a COVID-19 vaccine.

——

“The older you get, the healthier you have been”

- Peter Attia MD

[PMRpro Ambassador in reply to Mansplainer101]

It is not so much PMR per se but autoimmune disease in general. This

ncbi.nlm.nih.gov/pmc/articl...

was mentioned the other day as a scene setter. We don't have any problem accepting it triggering PMR - something has to trigger it and we know other vaccines do it. I have said all along that yes, if your PMR.GCA started within a few weeks of either Covid or being vaccinated, then it is pretty likely that event triggered your immune system to have a meltdown. But you can't say as a result that the vaccine is a bad thing - Covid is far more likely to trigger something nasty and Long Covid is just one version of an autoimmune disorder - or a conglomeration of many.

[Mansplainer101 in reply to PMRpro]

Thanks so much for that link which I bookmarked. Now I can point anyone who says "baloney" when I gently suggest there M A Y be a link between COVID inoculations and auto-immune diseases.

Don’t forget: “Good health is merely the slowest possible rate at which one can die."

😎

[PMRpro Ambassador in reply to Mansplainer101]

It has never posed a problem for me - it prods the immune system, if it is on a knife edge it doesn't take a lot to push it off.

[Nominem]

I stopped prednisolone about a month ago . I t was originally prescribed for gca. No adverse effects so far. I attended my local rheumatology appointment two days ago and can refer to them anytime over the next two years should any symptoms recurr,without the need to seek a fresh. Gp.referral

[cranberryt]

If you are ready to try to get off prednisone entirely, I would first go to 1/2mg every other day for a few weeks. Then maybe 1/4 mg every other day for a few weeks before stopping completely. That gives you a chance to see if any symptoms start to return.

[Mansplainer101 in reply to cranberryt]

Not to split hairs, but doesn't taking 1 mg every other day give you the same amount as half a milligram a day? It's so much easier than trying to split those small pills that are not scored.

And as for 1/4 of a pill how it heaven's name do you split one of those tiny pills into four quarters?

[cranberryt in reply to Mansplainer101]

1/4 tablets definitely isn’t an exact science, though I have heard of at least one person who crushed them and weighed out a 1/4 dose. For me, the dose wears off in one day so I would prefer the same dose every day. But since you’re already doing every other day, you could stick with that and just lower the dose. For me, I cannot do 1mg drops but maybe if your body is in remission and your adrenals are ready, you can just go for it.

[Mansplainer101 in reply to cranberryt]

1/4 tablets definitely isn’t an exact science, though I have heard of at least one person who crushed them and weighed out a 1/4 dose.

This person must have a pharmaceutical-quality scale to weigh a crushed 1mg Pred. tablet!

E.g.

In general, the cost of a pharmaceutical quality scale can range from a few hundred dollars to several thousand dollars. For example, a basic analytical balance with a capacity of 200 grams may cost around $500, while a more sophisticated scale with a capacity of 100 grams and features such as automatic calibration and data logging may cost around $5,000.

[MiniSpec in reply to Mansplainer101]

Buy a pill splitter. They are available in most pharmacies for a couple of pounds/dollars, or failing that, Amazon or Ebay. They help a lot with trying to reduce Pred dosage as they allow you a much more precise level of control.

[Mansplainer101 in reply to MiniSpec]

Got one! If a tiny pill like Pred. is scored, works fine. My 5mg pills were scored; my 1mg are not and splitting a 1mg into quarters with a pill splitter, IMHO, is mission impossible.

[MiniSpec in reply to Mansplainer101]

I wouldn't say impossible, I've managed to do it, but not very accurately, admittedly. However, as I don't have one of those very delicate balances that allow you to measure out 1/10ths of a gram or so, my trusty pill cutter is the next best thing.

I found that using tweezers to get the pill into the right position helped a lot, as my fingers are to fat to fit into the narrow space where the pill has to go for slicing.

[Mansplainer101 in reply to MiniSpec]

You, sir, are one very patient (no pun intended) gent!

[DorsetLady PMRGCAuk volunteer]

Not to split hairs, but doesn't taking 1 mg every other day give you the same amount as half a milligram a day? It's so much easier than trying to split those small pills that are not scored.

Yes it does give same, say over a week, but on a day to day basis it better on the body… Most of us think the same dose every day is better than say 1mg one day, zero the next….[which is a 100% difference].

But whatever works for you….

[Mansplainer101]

Grazie mille !