Not sure what to do.

[christi48]

I was diagnosed with PMR two years ago. Reluctantly started 5mg. of pred because I was worried about side effects but could not tolerate the pain and stiffness. Felt better immediately. Have been slowly weaning. Each reduction (1/2 mg/month) resulted in a return of pain/stiffness, some episodes worse than others... Only had to backtrack once to feel better. Otherwise I slowly adjusted to the lower dose. I'm now at 2 1/2 mg. Felt OK for a while but then the shoulder/neck pain returned as well as stiff and painful joints, but mild. I'm wondering how long one should continue with a lower dose and mild PMR symptoms. How does one know if their body will eventually adjust to the lower dose? Is it OK to just carry on with mild symptoms while waiting for PMR to burn itself out? At what point does a person accept that a low dose of pred might be necessary for a long while, and how long might that take? I'm thinking adrenals will never get back to normal as long as one is taking pred, even in small doses... Thank you to everyone who asks questions and provides answers and experiences. I have learned so much from this forum - it has been an invaluable resource. Wishing everyone a healthy new year...

[DorsetLady PMRGCAuk volunteer]

As we have commented in the past, starting at 5mg [your choice I know and can appreciate your thoughts] was probably not the best plan.

Personally I have my doubts that your PMR has ever been totally under control [or at least what we would consider totally] … maybe just on the cusp most of the time… and when you drop just below that point then it grumbles. PMR does vary in intensity during its lifetime, so sometimes your low level of Pred might be enough, at other times, not.

You can manage mild symptoms, but is it worth the risk, and what sort of quality of life does it give you? Your PMR will last as long as it wishes, so why not be comfortable whilst you have it.

At 5mg and below your adrenals probably are working to a certain degree…

If I were in your position I’d try upping dose for a week or so to mop up inflammation and then drop back to 3mg.

I’m probably not the person to offer advice on your situation as I have a very different view of Pred than many on here having been on very high doses with very little issue, and no fear of it. 😊

[christi48 in reply to DorsetLady]

I am so glad you did offer your advice and opinion. For me, having PMR is quite a lonely experience because I don't have anyone to talk to about it other than my PCP. Fortunately, she is great and seems very willing to help me find what works best but don't always know what that is or how my choices might affect my well-being. She wanted to me see a rheumatologist but the only one in town got terrible reviews so I feel much safer and better cared for staying with her. My inner circle doesn't really think about it because I appear well, and feel pretty good most of the time, but issues arise that baffle me so this forum is invaluable. Thank you.

[DorsetLady PMRGCAuk volunteer in reply to christi48]

It certainly can be a very lonely journey - wherever you live. So many are totally unaware of it, as were many patients before they succumbed. I’d never heard of GCA until 15years ago when I was diagnosed out of the blue…

Although in the UK there is a lot more info, with local support groups, and despite all the work the charity does, many medics are still seemingly bemused by it.

This link contains YouTube videos which explain in PMR etc in simple language -they aren’t new but might be useful to look at.

healthunlocked.com/pmrgcauk...

I would just reiterate that Pred is not always the evil that many think it is. I’m not saying it’s great for everyone, but it does give most good quality of life -so maybe try and view it as your friend, not your enemy.. 😊

[christi48 in reply to DorsetLady]

Again, thank you for your kindness and concern. That is so helpful and comforting. Best wishes

[Chiqui1950]

Dear christi48,

I think being at 2 1/2 is great, but I do hear your concerns about prednisone! you have been doing a very slow taper which has worked the best for me---Do consider LadyDorset's wise and knowledgeable comments!

I just read on this forum that after consecutive flares, it may be a good idea to wait a few months before trying again and then do what you are doing which is to go slow--- it is also possible to reduce by 1/4 mg---

Have you checked your inflammation levels with the ESR and CRP lab tests?-- monitoring those before I attempt a taper is quite helpful to determine whether it is safe for me to taper now. Also periodical lab results for me ordered by my doctor are reassuring that all my blood levels are normal as I continue to taper---

And of course my goal remains to taper as much as my body is ok with it--- I am learning that I need to modify my busy schedule to help my body heal and recover--- All the best to you!

[christi48 in reply to Chiqui1950]

Thank you, Chiqui. I'm seeing my PCP in a couple of weeks and will ask her to check my ESR and CRP levels. I think I'll try to increase my dose by 1/4 mg and see if that makes a difference. I appreciate you taking the time to share your insights and experiences, Best wishes to you, too.

[PMRpro Ambassador]

If you have symptoms despite pred, whatever dose it is, then there is uncontrolled inflammation due to inflammatory substances that are more than the pred can do. Over time, that will build up slowly until it reaches a point where you will feel it far more than is bearable. It is like a dripping tap that will eventually, sooner or later, fill a bucket and it will overflow. That tap varies in how much it drips - so on the lesser days you may feel OK, on others not so good.

Like DL I am never going to offer the answer you want me to - I have no fear of pred, I've been taking it for a long time after a very unpleasant 5 years when I had no choice - I "managed" PMR pain and stiffness for 5 years because no-one seemed capable of making a diagnosis. I don't recommend it. It limited my lifestyle greatly and it is thought possible that the long period undiagnosed is the reason underlying the 20+ years I have had PMR and have required pred. Even with Actemra I can't get below 7mg. But at least with that I am free from PMR-pain! I'm lucky, I don't live in the UK so Actemra is an option for me.

Unmanaged inflammation in the body is also a risk - far greater in the long term than a low dose of pred. It increases the risk of developing a range of cancers, vascular disease and depression. It isn't a simple case of pred bad, no pred good. The so-called side-effects of pred can happen with PMR itself - even with aging alone. One study found the only adverse effect not found in a matched population of patients not on pred was cataracts - and they are easy enough to deal with these days. And even they don't always form due to pred - apparently I have the first signs of a cataract in one eye but I'm over 70, I'd been on pred for 14 years when it was found and even 2 years later it isn't affecting my sight. But I'd gained weight with PMR, had sweats, my skin and hair were a mess and I was so bad tempered - and into the bargain could barely move, struggled to get out of bed, couldn't walk far and was in constant pain. At least with pred all that went away.

[christi48]

Thank you, PMR Pro. You're right - it isn't what I wanted to hear, but I needed to hear it! Looks like I will have to go back to 3mg where I felt good and try again in a month or two.