PMR for 2.5 years tapering

Hi, I'm 70 and have pmr for two and 1/2 years. I started with 20 mg of pred and tapered too fast (i guess) down to 3 mg, when I relapsed after 1.25 years. My markers went back up so I went back to 15 mg in Feb 2016, which I stayed on for 3 months, then started tapering again. I am currently down to 1 mg and my markers are normal. But, I have had bi lateral neck pain since Dec and shoulder pain on left. Yesterday I started with hip pain on my right side. Not sure if this could be pmr stuff but it all happened after going below 3 mg which was in late Nov. My rheumy thinks I have neck spasms and that the shoulder is caused by tendonitis. It just seems coincidental that all of this stiffness and pain comes after lowering pred below 3 mg. I spoke to my gp nurse and suggested that I try going to 5 mg of pred for a week or two to c if there is any difference. Anybody having this type of experience?

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  • I agree with nurse. Pmrpro will no doubt also advise that you've dropped too low, below your magic threshold and allowed inflammation to take a hold again.

    You may need to go back higher and start again but be aware and stop at 3mg

  • It has happened to loads of people I'm afraid! Some have even managed to get to zero pred - and a few weeks later the PMR symptoms start to appear again.

    When something similar happens at the same sort of dose twice it is a pretty good indication you have got to your target: the lowest dose that manages the symptoms. I agree with the GP nurse - go back to 5mg, get the symptoms under control and then go back to 3mg and stick there for a couple of months at least. Then very carefully try 1/2mg and see what happens.

    3mg is a very low dose with next to no side-effects and most of us would take it and run!!!! For some people the markers won't go back up while they are still on even a small dose of pred so you take the symptoms not the lab values.

  • Do you happen to know what would be the lowest mg. with almost no side effects?

  • Sorry - don't get what you mean? Do you mean the highest with almost no side effects?

    Everyone is different and some people have few side effects with pred any way. I'm currently on 8mg and I really don't think I have any side effects to mention. I gained weight with another sort of steroid, I lost it all. I still need to lose a bit more weight but I never was skinny! I do have minor sweats but I think they are due to PMR not the pred. My cholesterol is a bit up - is that pred or is is me? My BP was high (now well managed) but that was due to atrial fibrillation - which was due to the PMR not the pred.

  • I'm sorry I wrote that wrong. I was wondering about the effects it had on your body, bones and etc.

  • There was some research by physiotherapists who said that even 3mg can affect bone density. However, since about half of the population develop osteoporosis anyway and a similar proportion on pred develop osteoporosis I do struggle a bit when they are so adamant it is the pred that did it! I know several people on the forums who didn't take medications whose bone density remained fine - and some who had low bone density BEFORE taking any pred.

    But as I say - we're all different and one person may have side effects at 5mg and someone else next to none at 15mg.

    But bear in mind that the inflammation in PMR and GCA can have some fairly deleterious effects on your body too!

  • PMRpro I was unaware that PMR could cause atrial fib. I would have blamed that on Prednisone. I would guess then that you could also get atrial fib with GCA. What are the main differences between PMR and GCA? When I had PMR I left myself in the rheumatologists hands. I think that was a mistake but I did get better after three years and was prednisone free for a year before the GCA kicked in. I am now an educated patient regarding GCA. Thanks to you and this forum. Can you tell me what causes and affects the PMR? I know the GCA is inflamed arteries etc. I would like to know the fundamental cause of PMR. If it's not too much trouble can you explain a little. Thank you

  • The main difference between PMR and GCA is really which blood vessels are affected most I suppose - although even that is disputed and not clear-cut at all. GCA is a large vessel vasculitis - and can affect any artery with an elastic component to its wall structure.

    No-one knows what causes either of them - it is almost certainly an autoimmune disorder that makes the immune system go wrong and it attacks the body tissues by mistake but what triggers the autoimmune disease isn't known for many of them, there are some 140+.

    It is the autoimmune part that can lead to a/f, the heart has electrical cells that send signals to the heart muscles to contract and relax - and the autoimmune disorder can damage them. I imagine it can happen in a lot of autoimmune disorders.

    Sorry - it will need a better person than me to tell us what the fundamental cause of PMR and GCA may be. When they work THAT out they may be well on the way to a cure! Until you know what causes something it is not possible to work out the answer - except by accident.

  • Am I thinking correct, the small vessel has control in a/f? It certainly makes more sense to me now. But there is so much to learn I also think some of this stuff does not make 100% sense, but must be accepted. I question the blood clots in the stomach and chest that I will check every year or so. Don't know if its the meds. or disease. There was a lot I learned from sending my DNA away but cannot share this on a public website. I do know how this happens to folks like myself. In my case I am glad for only the minor damage so far that I am aware of. However, down the line we do not know what is in store for us. Everyday that I wake up on the upside of the soil is a gift. One of the big gifts was finding you and this site. We in the US need help, but it won't happen because there are so few with this disease.

    My children are down from the North, New Jersey, and I am going to enjoy the rest of my weekend with them. Hope you enjoy yours. I thoroughly enjoy the knowledge you impart and share with us.

    Thank you.

  • "Am I thinking correct, the small vessel has control in a/f? "

    Sorry don't understand what you mean. a/f is due to the electrical cells in the heart firing irregularly - and while they don't know why this happens any existing heart problems which have damaged the heart in any way make it more likely to do so.

  • I guess what I was looking for you answered PMR involves the smaller vessels. GCA the larger. It does seem inevitable if you have one the other is lurking around the corner. I was not terribly surprised when diagnosed with GCA just disappointed that I didn't have more time off the prednisone

  • Happened to me too but now trying 5mg alternate days with 7.5mg which is working well, will be on this for another month before trying to go down to 5mg. Hope this helps you.

  • I got down from 15mg to 1mg and felt quite good on 1mg.....did have acne though which I believe is a side effect.

  • Hi, my wife started with 15 mg of pred last May, and her rheumy has progressively reduced her dosage, to the point where here rheumy had her alternating daily between 10 and 7.5 mg in October. It is at this point where she started to get the PMR symptoms back. But, because her Sed Rate and CRP are normal, he wants her to keep reducing the dosage. When she got down to 2.5 mg, her pain was back to what it was at diagnosis in May. She is now at 5 mg, and still with much pain. Today, she saw her GP for her diabetes and we asked him if she could go to 7.5 and he said she had no choice, simply to improve the quality of her life - regardless of what the markers said. He then adjusted her diabetes meds to accommodate the change in pred dosage.

  • What a sensible chap - hopefully this will be enough. She might need a few days of 10mg to clear things out first and don't be afraid to ask for a bit more if she needs it.

  • Hi Jes, we seem to be going down the same road. I woke up xmas morning 2014 with such pain and stiffness, mainly in my neck, arms and shoulders. Thought it was just stress due to xmas family gatherings etc. By April pain still there, painkillers not really working and now my groin, buttocks also painful. Finally diagnosed with PMR in May, went on 15mg of Pred and a miracle happened, within 48hrs, all pain practically gone. Gradually got down to 1mg and my markers were normal......so in her so called wisdom my rheumatologist stopped the pred altogether, this was 2 months ago and my neck pain and right shoulder/top of arm came back with avengence. She told me to take paracetomol 3 or 4 times a day......this did nothing to alleviate the pain, so I came on to this site for advice.....most gave the advice to get back on the Pred asap...which from yesterday I have. Now back on 5mg and already pain is easing and I am a happy bunny again. So I would say go with the advice of your GP nurse and try 5mg, it will be worth it I'm sure. Good Luck.

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