Therapeutic prednisone dose question

[Darcy2000]

I have been on Prednisone up and down for 3 years for PMR and GCA . I have been as night as 60 and I am now at 3mg It looks like my PMR and GCA. seem to,be on thw way out 🙏.The issue is the lower I go the more my osteoarthritis rears itsugly head. I am planning to talk to my Rheumy as soon as I can get an appointment . I am 74 years old so my question at this age is ..what would the downside of maintaining myself at a therapeutic dose for the rest of my life to give me a better quality of life

[DorsetLady PMRGCAuk volunteer]

If your QOL is affected by your OA rather than GCA/PMR then there are other drugs that are better for that, so please discuss with your Rheumy - but I think I can guess what he will say about staying on Pred IF PMR/GCA is in remission, although you don't know that at the moment.

I found I needed to be much higher dose than you quote to mask my OA.

[piglette]

You are a lot better off getting off pred and using a drug specifically for your arthritis rather than staying on it solely for the arthritis. I am sure your rheumatologist will give you advice.

[PMRpro Ambassador]

What sort of dose were you thinking of? Prof Dasgupta told us he keeps patients at 2-3mg longer term as it is safe. I know my own rheumy wouldn't find a problem at that sort of dose. But the question is, is that enough?

As the others have said, there are other drugs used for OA - but in my own opinion, whether they are better/safer than a low dose of pred is a moot point. A very low dose of pred probably is safer for some patients than some NSAIDs used long term.

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

Not sure that 2.5-3mg would help in most cases of AO -certainly didn’t in my case, but depends have much pain you actually have I guess. Obviously if PMR/GCA is still active then that puts a different light on the matter.

[PMRpro Ambassador in reply to DorsetLady]

Well yes - which is why i asked what sort of dose was under consideration.

[Darcy2000]

Thanks all for your feedback… will discuss with my Rheumatologist

[izzyart]

D , i am your age and tapering slowly to 2 mg pred after 3 years...my rheumy put me on methotrexate a few years ago due to arthritis but i have tapered that also to a 5mg a week. Both my brother and sister are in their 80s and on a daily dose of 5mg pred for life, they have the same rheumy and both had tapered down several times, even off pred for a year or more...our family inherited a nasty strain from my mother who had GCA.My rhuemy wants me off pred before gettimg off metho, and i do too, but too afraid of flareups. I stretch and take an occasional tylonol for pain...

Pat

[daworm]

im in the same boat, will be 73 soon, I was on pred for about 3 years till tapering off, I never had any real problems with being on prednisone and while I "think" the PMR has left my body I am not sure, I still have some crappy days caused by "something" I also have hypothyroidism and OA so sometimes I have no idea what is causing my soreness and fatigue, left over PMR, thyroid issues, OA, who knows, but I have gone back on prednisone for 3/4 days at a time when I've felt really crappy and also have considered staying on a low dose for a much longer time...I take meloxicam (Mobil), and other NSAID'S as needed but not daily...I mostly try to use any pain meds as needed not daily....what I really want is a really good physical and work-up at a top notch medical center such as Mayo's or UofM..(I live in Michigan)...been to one rheumy in my life when this all started and he didn't know much about PMR and said all my problems were thyroid related which was partially wrong...I personally think a low dose of pred is safer than a constant barrage of nsaid's..I don't think prednisone is really meant for OA though...but it does help with any inflammation so theres that...

[Darcy2000]

Thanks very much for your informative reply ..yes sounds quite similar I have pain in hands mostly fingers which I doubt is PMR .Originally it was thighs and torso stiffness and tightness which went away with Pred. In the meantime I contracted GCA which appears to be on the wane …small complaints considering age

[Sunny465]

I agree Darcy, the old aches and pain can return.

I was good at 3mg pred. But I chose to come off it and was free of concerns for about 2 wks.

When I was reducing it was by one-half mg increments being at each level for recommended days as per dead slow method. I was told I had PMR at the time of diagnosis. Is this a disease or a collection of symptoms ? I did not have GCA.

Coming off Pred. there are flares but the adrenals are being signaled to function again. My CRP was no longer a feature of PMR. The distinction to be made for each person (my guess is) - is what are we left with when we are no longer on Prednisone.? We each have our own set of clues...??

What are the options to improve quality of life?

For example, the original source of my difficulties needed to be addressed. If it's OA why settle for that and be miserable. It took quite a while to understand what I could do to gain the correct information as far as I know to date. .

I wanted to know if I could address issues such as reducing muscle/nerve/joint pain, improving my sleep, sequestering strength from muscles not being used, improve my range of motion and balance.

At this stage and age 73, it is like having a disability. I wanted to increase my ability to move safely with care and be more comfortable.

I don't know if this helps Darcey - but I can offer you my reasoning at this point.

I didn't want to have operations on joints due to referred nerve pain down my legs/ presenting as stiff/sore knees not bending well (difficulty standing /sitting) - when the core and leg muscles needed to improve.

However, it isn't a gym workout.

An assessment to find how the body has compensated over time due to old injury, wear and tear, (what I was born with? ) - where the imbalance occurs is useful.

Pace is important. Muscles do get sore. I allow for repair days in between activities. Shifts occur in the body as one area improves or wakes up. 1 ml Magnesium chloride in water at night helps prevent cramping.

There are good days and not so good but overall improvements are still possible. I want to work with what I have got - as those old compensations that lead to pain and inflammation are in retreat. On the whole I'm better.

At the very least - if muscles/joints/even between vertebrae can hydrate, as blood flow improves with movement/ impinged nerves are released - is there relief to be had thru correct instruction?

So far I say yes.

All best Darcy.

[alvertta]

Hi Darcy. I am 74. Been up to 60. Now on way to 3. Live in Ontario. Diagnosed in October 2018. Have been on actemra since October 2020. In November 2020 developed prednisone induced myopathy which meant my legs stopped working. Most of that has resolved. I am stiff and in pain. Swim 5 days a week to keep moving.