Contributors' Brief Histories

Todd, if this is PMR, and the pain started in your mid to late 30's,then you are about the youngest such patient I have heard of.  I assume you have been tested for rheumatoid arthritis, although the relevant test for that isn't totally reliable.

It's true that around a 15mg starting dose of steroid is often used to confirm the diagnosis of PMR, especially where PMR might be suspected in spite of normal inflammatory markers.

Steroids remain the only treatment that really controls the inflammation of PMR.  Whilst an anti-inflammatory diet can help to ease some of the pain and stiffness for some sufferers, it is not sufficient on its own to tackle such inflammation.

In the case of PMR, you can expect around 70% relief in symptoms within a few days, sometimes within a few hours.

As to how long it can take for PMR to go into remission, that depends on the individual and to some extent their lifestyle.  For instance if people are still of working age and not able to take sufficient rest in the early days of treatment, it can take longer for the steroids to get control of the inflammation and keep it under control.

Whilst a few people can recover in a year or so, for some it can be a couple of years whilst for other it can take much longer.  It might reassure you to hear that we come across a lot of men who seem to recover much more quickly than us ladies - perhaps due to different hormones etc.

After spending a year undiagnosed, I started on 40mgs of steroids for both PMR and GCA, reaching remission and zero steroids a couple of years ago but it took 5.5 years on steroids to achieve that.

We can offer you more information but I feel it would be best if you wait for the outcome of your other blood test and confirmation that you do in fact have PMR before we go into more detail.  

Meanwhile, have you had your Vitamin D levels tested?  Any deficiency can lead to pain similar to that of PMR. 

Todd, you remind me of myself when I was diagnosed with PMR in Jan. 2010.Finally, after a long tedious journey with this disease, it seems to have gone away and I'm off prednisone since Sept.

 I was terrified of prednisone and never dreamed I would take it for 4.5 years. LIke you, I wanted to know if there was a more natural way to deal with this condition but unfortunately, nothing will give relief like the prednisone. I was lucky to have none of the usual side effects like raised blood pressure, or diabetes. But I did have some strange things happen, like capillaries in my fingers popping for almost no reason at all. Strange stuff.

The one thing I regret not doing is  going on an anti-inflammatory diet. A chiropractor and other alternative medicine people suggested it.  There was no clear idea of what exactly this would be, so I stumbled around and just gave up on it after a few weeks. I was loathe to give up my comfort foods if I had to suffer with PMR, too! In retrospect, I wish I had pursued it because it really doesn't feel like deprivation ; I'm now sort of following an anti-inflammatory way of eating and feel better. I say "sort of " because I'm not being iron-clad about it, just eat lots of vegetables, salads, nuts, seeds, fish, turkey and try to go easy on dairy, wheat, sugar. Trying to go gluten free as much as possible. I don't like to think of it as a diet, because that implies some crazy thing people go on to lose weight, at least that is what most people think of. To me, "diet" just means the sum total of what a person eats.

Some people do get over PMR more quickly and usually men have an easier time reducing the steroids...but not always...It seems like everyone's experience is different.

I'm sure some of the medically-oriented members of the website will come along to help you better than I. There is also another website also based in the UK which you might want to check out; most of the people here also go over there. Not sure I can post a link but try googling PMR and GCA--UK Northeast Support Group.

Good luck to you and welcome to a site where no one really wants to be a member, but you will find good support and help.

freesia

Todd, I didn't notice your young age! So sorry,although I still stand behind what I said if you do indeed have PMR!

MrsO is right...

freesia

Most of it has been said already! Some complementary therapies can help - I managed 5 years of fairly mild but nevertheless painful and stiff PMR using Bowen therapy (also called Bowtech) until it went totally haywire. Pred was a miracle in 6 hours! And there are several of us who have used that sort of thing plus making our diet more antiinflammatory as an add-on - it isn't that anyone is against it, I have tried omitting most things at some point and it made not the slightest difference. There is evidence that a very strict vegan diet can reduce joint pain in half of rheumatoid arthritis patients - the slightest bit of dairy brings the pain back. The diet is so strict that most people struggle to stick to it for more than a few months.

I do know of a man on another forum who was training for a marathon when his PMR struck - and in just over a year he was back to running. He had access to a hydrotherapy pool and other therapies - which most of us don't - so was better able to exercise in some way and one or two of us believe that probably helped him recover so well so fast, but men do seem to be different and there are far less of them, the ratio of men to women is 1:3.

According to the literature about a quarter of patients get off pred within 2 years - but this group is more likely to experience a relapse at a later date. About half take up to 4 to 6 years and the rest need pred for even longer, some even for life but that is probably due to another problem. Bear in mind that the forums are almost certainly biased towards patients who are having problems - someone who steadily reduces their pred dose the way the doctor says and is down to zero in a couple of years won't bother to look for support. 

This link will take you to a thread which has links to other forums and info sites - the first one is particularly good for info and has the stories of a load of patients. In posts 4 and 5 is a reduction scheme - I couldn't reduce even 1mg at a time without pain, by spreading the reduction over a few weeks I have reduced from 15 to 4 over about a year and a half. Reducing too far or too fast is the most common cause of a flare and reducing slowly avoids that as I explain. 

https://patient.info/forums/discuss/pmr-gca-and-other-website-addresses-35316

PMR is the outward expression of an underlying autoimmune disorder - and autoimmune disorders can burn themselves out and go into remission. Some do, some don't. The vast majority of PMR patients do get off pred sooner or later. Using that very slow reduction a lot of people seem to have been able to get below 5mg, some well below. By that stage the side effects are minimal and at 4mg I really can say I have none I am aware of - some more obvious ones that developed on a different sort of pred have all disappeared.

If your rheumy DOES decide this is PMR and you do respond well to the pred please ask him to write a case report and publish it. We are sick of doctors denying it is possible to have it under 50 - some even try to say under 65! I believe most young PMR patients get diagnosed as fibromyalgia or something else and told there is nothing to be done without trying pred. The youngest patient in the literature was twenty-something, a runner and in a wheelchair until someone decided to try pred - he was back to running within days. 

Follow this link and you will get the "front page" with the list of all the existing threads with topics that may help. I won't guarantee they stick to the subject - it becomes a conversation and we often get sidetracked and go off on a tangent. But all of us have PMR so somewhere along the line you will get something useful out of any conversation.

https://patient.info/forums/discuss/browse/polymyalgia-rheumatica-and-gca-1708

Ask away if you have any other questions we've missed between us.

Todd, I started with the classic symptoms early Oct. (age 58 in New England)

After thinking it was Lyme Disease, was diagnosed with PMR about a month later. Unable to sleep and function in the AM were remedied in a day with Pred.   I'm on 15 mg and will try to reduce to 12.5 on the 21st.  MrsO and EileenH are spot on with their posts, heed their comments and best of luck on your journey to remission 

Careful with that reduction kern! Don't know whether you are intending STARTING on the slow reduction on the 21st but if you are not and intending dropping "overnight" I'd suggest waiting a week! Never try that sort of drop if there are "things" coming up in the following week that you can't cancel and rest if necessary! 

Just following my rheumy's instructions.  You  think that's too soon?

If it weren't for the fact it is 4 days before Christmas I probably wouldn't have said that! I've given the link to my very slow reduction - it is fine to use that even if you have a holiday or something coming up.

Doctors seem to struggle with the idea that one size does NOT fit all and you aren't aiming to reduce to zero as you would with most uses of pred. The PMR is the result of an active disorder and won't be manageable without pred until the underlying autoimmune disorder has burnt out and gone into remission. In the meantime you are looking for the lowest dose that controls those symptoms. This early it might still be 13mg - and that half mg can make a big difference. Or you may be very sensitive to reducing the pred - and that can mimic a return of the PMR so you don't know which it is. I couldn't reduce below about 10mg and even above that I had pain - until I slowed the reduction down to 1mg at a time and even then I spread it over a few weeks. As the daily dose got lower I had to spread it over longer periods.

You may be fine - but don't try it just before Christmas. Unless, of course, you are of another religious persuasion or a total bah humbug person like me for whom the 24/25/26/31 Dec and 1st January are just like the rest of the year. Then it won't matter ;-)

Well, Here's an update: My doctor and I decided to go ahead and start prednisone. I'm coming to the end of day day two on 20 mg. On day one I took the dose at about 7:30 AM and felt an incredible difference by noon. I also felt kind of high – energetic and euphoric. I think I was partly just excited that it was working, but it definitely felt kind of unnatural. The next morning I woke up with some of the pain back, but not as much as usual, and it seemed more achy than acute. Today it was about the same story, but without the weird high feeling. My biggest trouble spots still have some pain, but it’s only about 25% of what it was in those areas. So, it’s looking pretty much like this is PMR despite my age of 40 years old.

One thing that still makes me wonder if it's PMR though is the fact that I have felt similar relief from NSAIDS and I’ve heard some say that NSAIDs aren’t very effective for PMR pain. I managed the pain that way for 2 – 3 years, but it was always a rollercoaster – I would get terrible rebounds and feel even worse than before when they would wear off, plus I felt weird when I took them a lot, and was starting to get tinnitus (ringing in the ear), so I stopped taking them and believe I felt better overall without the rollercoaster.

As far as my pred. dosage, I’m only supposed to be at 20 mg for 7 days, then drop to 10 mg and stay there for longer. I’ll meet with my doctor in a month or so and see how I’m doing before reducing again. I’m sure it will be a slower reduction after that. I hope that it isn’t too big of a drop from 20 to 10, but I don’t think my body will have adjusted that much to the pred. after only a week, so as long as the pain doesn’t come back I’ll be happy to be on a lower dose. I haven’t met with a rheumatologist yet. I have an appt., but they are booked two months out, so it won’t be until February.

One question I have is that I’ve heard some say that the prednisone is just treating the symptoms as the PMR runs its natural course that it would anyway. Is there any truth to that? I was under the impression that the treatment helps to get it into remission sooner. I hope so.

I was also wondering if anyone could point me to information about how PMR affects the blood vessels and circulation, and what role that plays in the condition.

Thanks.

-Todd

Todd, good to hear that the 20mg of Pred has almost immediately improved your pain by about 785% - just exactly what we would expect in the case of PMR.  Now it will be very much a case of seeing how things progress before having real proof of the diagnosis.  BUT, for Heavens sake do not reduce from 20mgs to 10mgs in a week's time - if it is PMR that could well result in a flare and you will be back to square one on the starting dose again, and then it can be more difficult to reduce second time around.  20mgs to 17.5 would be a wiser reduction, but even then not just after one week - you need to stay there for at least 2-3 weeks.

You have heard right in that Pred just reduces the inflammation that causes the pain but it does not cure anything.  PMR will only go into remission when it wants to and not when we or our doctors want it to.  And that can take anything up to 2 years for a quarter of sufferers, and 3-4 years for many; for some they have to stay on a small maintenance dose for life.

It is unusual for anti-inflammatories such as Ibuprofen to relieve the pain of PMR, but, as you say, it did result in a bit of a yo-yo situation rather than a resolution of your symptoms.  Certainly do not take any such anti-inflammatories whilst on Pred.

I believe the jury is still a bit out on whether PMR alone actually affects the blood vessels and circulation to any extent, although its linked condition, GCA (a vasculitis) certainly can.

So slowly slowly now with the reductions is the best advice we can give you from our experience, along with getting plenty of rest during these early days, so allowing the steroids to do their job - you will probably have read our advice many times to not overdo things on a good day or PMR can and does come back to bite on the next.  Good luck Todd.

PMR is a vasculitis, that has been accepted for a few years now, but where GCA affects medium and large vessels, PMR affects the microcirculation (the very small capillaries that supply the organs and muscles, a bit like the fine twigs at the end of a tree's branches). There is actually a research project going on about it at present.

When it comes to your reduction then maybe you and your doctor would be interested in the paper referred to at the end of the first post in the thread this links to:

https://patient.info/forums/discuss/pmr-gca-and-other-website-addresses-35316

It is the Bristol group's recommendations to help with management of PMR - they do 6 weeks at 15mg, 6 weeks at 12.5mg and 1 year at 10mg and find that results in a flare rate of 1 in 5 rather than the more common 3 in 5. Flares are almost always due to reducing too far or too fast. I would at least ask the doctor to consider going via 15mg first as that is the normal starting dose.

Painkillers do seem to work for a few people and are recommended in guidelines for mild cases. I never found it did more than take the edge off the worst of the pain. However, ibuprofen has its own portfolio of side effects and one lady, told to take it by her GP, ended up in A&E after 3 doses with a gastric bleed. It is possible that the activity of the underlying autoimmune disorder has waxed and waned in the past - and now has hit properly. That is what happened to me, I had 5 years when it was liveable with - then I was felled totally and only pred dealt with the pain.

The high feeling is the pred - it will improve. But do not go mad doing all the things you haven't been able to do for the last few weeks - you will think the PMR is back. Yes, all pred does is manage the symptoms, it has no effect on the underlying autoimmune disorder that is causing them.

Thank you everyone for your responses and input. I'll respond to this thread with an update when I get the CK test back and start on pred.

I know my age and gender makes a PMR diagnosis unusual - I guess maybe I'm just special... yay.

One more thing that I'm concerned about is starting on the pred. right as we go into cold and flu season. Did people here notice a big difference in how you were able to deal with sickness & infection on a 15 - 20 mg dose?

Todd, although I started on a 40mg Pred dose, I didn't have any infections in the early days of treatment.  For years I have started off my day with a glass of warm water with a few squeezes of fresh lemon juice.  I also have Manuka honey with my breakfast.   The former is said to be a good detox and the latter is very helpful to our immune systems.  I also ensured I ate plenty of fresh organic veggies and fruit.  Friends were very considerate and stayed away if they had any sign of a cold.

Todd, my doc put me on 12.5 mg pred to start and I reduced quickly to 10 mg. I think if I'd gone to a rheumatologist at the beginning, I would have started out at a slightly higher dose, such as 15 mg. So I was never on too high a dose, but I seemed to have fewer colds, sickness and infection during the time I was on pred! My doc did send me to a rheumy fairly soon and I was under a rheumy's care most of the 4.5 years. 

What is unusual is more that your doctor is prepared to consider PMR as a diagnosis - I suspect there are plenty of people under 50 with it!

I have never had any more infections while being on pred - in fact, like Freesia, I have probably had fewer colds! The risks are at the higher doses of pred used for GCA, the lower doses are almost always associated with fewer or less severe side effects.