Is ongoing pain common in newly diagnosed PMR?

Bones, joints and muscles
1

Hello,

I'm brand new to this forum and have recently be provisionally diagnosed with pmr.

I am 49 years old and have had fairly classic shoulder and more recently hip symptoms for 6 months. I have been on naproxen with some effect and high dose codeine at night. Diagnosis has been difficult because I am 'too young' and all my blood tests have been normal. Two weeks ago, however, I persuaded my G.P to try me on prednisolone as I had great difficulty walking, in constant severe pain and have been unable to work since July.

After 4 doses of 30mg pred I could lift both arms above my head, could walk normally and generally do much more. I no longer needed codeine every night. My pain was lessened and much more localised, responding to heat and rest (especially in my arms).

It is now 2 weeks since I started the steroids and whilst my mobility and pain are much better, I still have problems and am certainly not symptom-free. My arms are fairly good, with pain after I use them for general housework etc but tolerable. My right hip, however, can be very bad - I cant stand for too long and if I sit on a hard chair for any length of time the pain is awful for hours and I need codeine occassionally.

I had to reduce my dose to 25mg today as my GP instructed but am now very nervous. I've tried to stop the naproxen but went back on it after a few days. Can anyone relate to my experience, is this common? I thought the steroids would take all the pain away? I'm starting to panic because I need to get back to my demanding job soon or I will have my contract terminated.

Even with my improvement my GP was still dubious about the diagnosis, but I would say I am approx. 70-75% better, its just the last 30% that the issue. Am I expecting too much?

Any help/advice would be greatly appreciated.

Happy New Year to you all.

2

I think your GP is possibly right to be dubious about the diagnosis - at least, in terms of it being simple or pure PMR.

Google the following paper aimed at GPs which is freely available online and you will see an expert assessment of what I mean:

Our approach to the diagnosis and treatment of polymyalgia rheumatica and giant cell (temporal) arteritis by V Quick and JR Kirwan

Although younger patients with PMR do tend to be a bit atypical, pure/simple PMR should respond to about 70% to a dose of 15-20mg/day and very quickly, within a few days not a few weeks (see pages 2 and 3). It is a shame in that sense that your GP gave you such a high dose as the dramatic response to a moderate dose of pred is the final piece of the jigsaw of diagnosis. Other things will respond to a higher dose although not to the lower level.

Frankly, most of us have found that other painkillers don't do much in PMR, that is also fairly typical, and whilst for many of us the response was dramatic it certainly didn't leave us pain-free and we still tend to have some stiffness. So in that sense - expecting 100% relief is perhaps too optimistic although some people do achieve a very good result.

What else did your GP consider? I assume he has done all the tests to rule out some form of cancer (sorry, that is one of the possible alternatives). Has he considered late onset rheumatoid arthritis? He also needs to think about bursitis, trochanteric in the case of that hip, and that would respond better to a local cortisone injection if it is that. It would probably also respond to the highish dose of pred you are on but it will take time. Another possibility is a polymyalgic syndrome associated with hormonal problems pre- and peri- menopausally - that responds to HRT and can be diagnosed by specific blood tests for hormone levels. There is a thread on here somewhere where a lady was similar to you - some relief with pred but dramatic results on HRT.

I say all this because I have been where you are: I was early 50s with normal bloods when my PMR started and the bursitis progressed over the 5 years I had no diagnosis until when the PMR hit like a 10 ton truck I could barely walk or hold anything. It improved over several months at 15mg but returned about 20 months ago and this time I had cortisone injections - magic, though it still took 2 lots a few months apart to get it really sorted and accompanied by a lot of work on my back as I also have myofascial pain syndrome which leads to referred pain radiating into arms, neck and legs. It can be found alongside PMR but is different and needs different treatment - specific to its trigger points rather than "all over" as is the case with oral pred.

As you will see from the paper I have recommended, such atypical patients do really need to be referred to a specialist rheumatologist. Of course, stress doesn't help PMR at all - and you are still under stress, that is obvious.

Does any of this help?

Eileen

3

Hello Eileen,

Thank you very much for your reply, it certainly gives me food for thought. I've found and read the article you recommended and I see what you mean.

When this first started I was referred to a rheumatologist who felt that with normal bloods - ESR, CRP, rheumatoid factors among others and having bilateral shoulder pain only at the time which literally came on overnight,- that bilateral rotator cuff disease was probable. One month later I had steroid injections into both shoulders but as they had absolutely no effect, I was then referred to an orthopaedic surgeon. He was convinced that I did not need surgery and, as hip and thigh pain had then started in earnest, that PMR was a possibility. My occupational health doctor at my work was of the same opinion. The surgeon also ruled out ostoearthritis as the cause of my hip pain even though I have, apparently, very early signs of wear in the joint.

Unfortunately the waiting time to see the rheumatologist is so long that I have not seen him since september and am still waiting for a follow-up. My condition deteriorated a lot whilst waiting , hence my trip back to the GP out of desperation.

I'm guessing I've been checked for malignancy via bloods, but I might be wrong. I don't feel I fit for fibromyalgia, with generalised arm tenderness rather than points and no headaches. Rheumatoid factors were negative.

The idea of a hormonal problem is very interesting in view of my age, I have been very hot over the last 3 months but episodes last hours not minutes. That is certainly something I will look into.

My pain has been in joints/upper arms/axillae/thighs/buttocks/groin/lower and upper back/shoulder blades prior to steroids. Now mostly joints/thighs and upper arms.

Janice

4

Have a look at this thread which was started by Lesley and she was eventually dx'd with a hormonal problem:

https://patient.info/forums/discuss/could-it-be-polymyalgia--36561

Does anything she says ring any bells?

Eileen

5

Thanks Eileen, this is a very interesting thread.

Many of her pain descriptions are similar although I have no other joints involved except shoulders and hips. I have had permanent pain at rest for months prior to starting steroids and it was only when I kept a clear concise pain chart for a couple of weeks showing pain levels and positioning and showed the docs that PMR came up as a possible diagnosis. I too felt that the degree of pain had not been appreciated before.

I do not, however, have the extra symptoms such as dryness or burning pains that Lesley identified, just the fatigue.

I remember ANA being tested for along with thyroid - all normal.

I do not have any problem disagreeing with doctors or asking for tests (I'm a nurse)! So will ask for my hormone levels to be checked when I'm next seen - either by rheumatologist or GP.

Thanks again

Janice

6

Hello,

I am completely new to this forum but have been reading it for some time since I was diagnosed with PMR in May of 2013. I had been a very active 69 year old up to the day that I woke up with this. I had been walking 3 miles a day as well as water skiing during the summer months. I also had been babysitting my very active grandson every other week all day. I think that indicates some of my activity level. But about mid-April of '13 I woke up with such pain I could hardly move. I do need two knee and a hip replacement and this pain started about the time I was getting ready to schedule one of these surgeries. My GP could not give me an ok for

surgery because I was anemic on top of all the other issues. When she investigated this it turned out that I also have lymphoplasmacytic lymphoma. I did 3 rounds of chemo and am in remission at this point and am

anxious to get one of the surgeries scheduled. At this point though I am in such pain from the PMR that I am not sure how I will be able to do rehab after the surgery, but I am sure my orthopedic Dr. will advise me on

That. Anyway I wanted to ask if anyone out there has a lot of the symptoms of PMR that I do. First of all

the pain in the morning is not too, too bad. I think that may be because I take 20 mg. of prednisone every

night. I have been on that for about a week now. I had been down to 5 mg. and then tried to taper to half of

that (upon advisement of my rheumatologist). After one day I had such a flare up that I could hardly stand

it. My rheumy then did a burst and taper for me in that I did three days of 40 mg. of pred., then 3 days of 30

mg., 3 days of 20 mg., and then down to 10. After about a week it was obvious that 10 was not controlling it

so I was put on 15 which didn't do much better and now am at 20 mg. I still have a very, very difficult time

getting up from a chair or out of a car. Do any of you experience that? I have a very difficult time putting my socks on. In fact this evening my husband put them on for me. When I wake up in the morning I take 2

Utlram pain pills, then 5 to six hours later take 2 more and one more time during the day take 2. I haven't

read of anyone else taking pain meds. I hate taking them but I have to to get by. Even with taking them,

By 5 or 6:00 in the evening my hips/legs/thighs are so very sore I can hardly walk. It is very depressing when I read that this may go on for 3 or more years. I was looking forward to it being gone in a year or so. Any

tips or ideas of anything that might help?

7

Oh dear Diane, there could be a few things going on here but if your PMR diagnosis was correct then the most likely reason for your ongoing severe pain is that you weren't kept at the starting dose for long enough to get the inflammation under control and then reduced far too quickly - for instance if you went straight from 5mgs to 2 1/2mgs that is a recipe for disaster. The lower we get on the steroids, the smaller and slower the reductions need to be. Yoyo-ing up and down the doses has caused problems for many.

If you need to be on painkillers, then it means that your steroid dose isn't high enough to control the inflammation.

You don't say whether you were diagnosed following blood tests or a diagnosis of exclusion, for instance was rheumatoid arthritis ruled out? We have come across patients who have been diagnosed with PMR and when steroids haven't given the expected 70% or so reduction in a few days to a week, they have then been found to be suffering from something else, even a hormone deficiency.

It is generally recommended that we take our Prednisolone first thing in the morning to be in line with the time that our bodies normally make their natural cortisol - perhaps that would give you more relief from your pain during the day.

If 20mg eventually eases your pain, then stay there for a few weeks and when you reduce only try a 1mg reduction.

Do hope some of this helps, and good luck.

MrsO

8

I was diagnosed with a sed rate of 136, but Creactive was normal. So it was that and process of elimination. And the crazy thing is that I was lowered to 10 mg. in August and did very well. I had started at 20mg. in Mayand was there for 4 months. after that i was taken down to 10 mg. and was good, but still just taking a occasional pain pill. In fact in late October I did a week of gardening that kind of made up for what I did not do during the summer because of the pain. I did not ask the question in my first post as to whether everyone with this has a very difficult time trying to walk up stairs. I have to pull myself up stairs using my left hand/arm because the right one is too sore to do that. I know part of it is because of my hip/knees, but I was managing that a lllot better before the PMR hit. Going down stairs is a little better but still have to do one at a time. Interesting that the suggestion was made to take the pred in the morning. I was doing that originally but still having some pain so my rheumy suggested taking it at night and that he had many patients whom that had helped. Thank you for reading my post and responding Mrs. O. Diane

9

Hi Diane and welcome!

The getting up out of a chair and the stairs are typical situations in PMR and I could only get upstairs on hands and knees when my arms hurt too much to pull myself up - and down was like a toddler, 1 step at a time. But they are things that should improve dramatically with pred.

I don't know - I'm finding it difficult to make a mental map of what you have been through - but one thing I would say is that your rheumy has gone about treating PMR in a very cock-eyed way. Fast tapers don't work - it's as simple as that. Once you start to yo-yo the dose as you have done it gets harder and harder to reduce. And reductions of more than 10% of the current dose cause trouble - some people can't even cope with that without a return of the symptoms.

I was put on pred by a rheumy who was sceptical about PMR: 2 weeks 15mg/day, 2 weeks 10mg, 2 weeks 5mg. Within 6 hours of the first 15mg dose I could walk downstairs normally whilst holding the handrail. Within 3 days I was back to normal except for the tendonitis I had in hands and knees (that took months to go) - but within 24 hours of stopping the 5mg dose, at which I'd been OK, no more, I was in worse pain than pre-pred. It has taken me 4 years to get below 10mg again. But the return to 15mg DID work for me. It was the reduction that was the problem until I did a reduction of never more than 1mg at a time - and even then I don't go directly from the current dose to current dose minus 1mg. It takes me weeks of decreasing the number of days I take the old dose between single days of the new dose.

IF what you have is simple PMR, the pred should control it and most of us have never found painkillers do anything for PMR pain. I would suggest there might be two possibilities: one is that you don't have plain and simple PMR. The other is that you are what is called steroid resistant - the form of pred you are on just doesn't work in your body. It's not common - but it happens.

Certainly, the dx of the lymphoma suggests that IT might have been the original culprit for your PMR - I personally feel it shouldn't be called polymyalgia rheumatica but PMS - polymyalgic syndrome. PMR isn't the disease - it is the symptoms of something underlying that leads to inflammation which causes the pain and stiffness - "many painful muscles".

It also sounds as if you got a bit better and made the typical mistake of trying to catch up with missed tasks - and that can do a lot of damage to the muscles and lead to a return of the symptoms. We've all done it - but you sound worse than most of us as a result.

Do I gather you are in the USA? If not - where are you? And what sort of pred are you on?

I was first put on simple ordinary prednisolone which is the standard in the UK. I moved to Italy a few years ago and that meant I had to be switched to methyl prednisolone, or Medrol, which I know is commonly used in the USA alongside prednisone. The rheumy here was adamant medrol was better than prednisolone (which can't be got here anyway) but although at first it felt no different, it certainly wasn't any better. Then side effects developed which were horrendous (weight gain, a beard, muscle wasting, none of which I had had before).

After a few months I developed other problems which led to me spending 3 weeks in hospital. Soon after I had to increase my medrol dose to 20mg, taken at night as you are doing - and it still seemed to do nothing. It took until mid afternoon for me to feel any better although the morning stiffness wasn't too bad. I had been put on statins in hospitals - within days I hurt all over and couldn't walk more than about 50yds and that on crutches. I had never been that bad before. I stopped the statin immediately (no problem with the cardiologist) and slowly improved again - but it has taken a year to get back to where I was pre-medrol and pre-statin. I was also switched to a different form of pred - I went from 20mg medrol which did almost nothing to 15mg of the new form of prednisone and it was almost as miraculous as the first dose of pred 4 years before! I have been able to reduce steadily, though never more than 1mg at a time, and am almost down to 5mg/day.

This is already a long and complicated post so I won't say any more just now but can you answer a few questions for me please:

What sort of pred are you on?

What other medications are you on?

Have you been given antibiotics at any point and if so, what?

Do you have/have you had any other back problems - especially lower back pain?

cheers for now

Eileen

10

Yes, Eileen I am in the USA. As I went through your post you asked what type of pred I was on. I didn't know there was more than one kind. My bottle doesn't give me any other information. We are out of town right now and I don't have all the paperwork that came with it. I guess that since all of my life, except 2013 I have been very active and very healthy that I just don't think much about those warnings, etc., and sometimes don't even read them. (I am now seeing the importance of that.). My oncologist assured me that the symptoms I am having have nothing to do with my lymphoma. Other meds I am on are dyazide, evista, iron, cranberry, omeprazole, calcium with D, and a multivitamin.

11

Both evista and omeprazole list muscle pain as side effects, dyazide lists muscle cramps.

Also - have you had blood tests to check your potassium level? You are on a diuretic and that can sometimes lead to a low potassium level - which has very similar symptoms causing muscle weakness, aches and cramps. One lady on another forum had muscle pain and thought it was the PMR, but it was actually a low potassium level.

Even if each of the medications just caused a mild level of their side effects - together it might be worse. I'm not saying that any of these ARE the problem - but it is worth thinking about. It isn't uncommon for patients on several medications to find they interact - maybe taking two isn't a problem but each one added changes the situation and they are not tested in such situations until they go on the market.

By the way - it is a good idea to take all the details of any medications with you when travelling. It is far too easy to mislay what you've taken with you and if you have been on pred for a while you can't just stop it without risking becoming ill. And always take far more than you think you will need and pack it in more than one place. Especially if you are flying and have hold baggage - always keep one lot in your hand luggage! And be really pessimistic - that could be stolen!!!!!! So keep a pack in your pocket if possible!

Are you SURE the bottle doesn't say what it is? Unlabelled medications are a dangerous item!

Eileen

12

Hello Eileen,

Again I can see how it is so important it is to hold onto those drug info sheets after getting an RX. All of this is so new to me I have to learn new things. I will be doing that the next time my meds come. About 3 years ago I had an inguinal hernia repaired and my anestheologist kidded me when taking vitals, etc., saying 'you are just one of those disgustingly healthy people, aren't you'. So everything was in line. Also I have had so many blood test taken of late with all these issues and my potassium is right in the normal range. I have looked again at my prednisone bottle and it is listed as Prednisone 10 Mg. tab. rox. I take the dyazide because the prednisone has caused an increase in my blood pressure. The evista is for bone health as well as prevention of breast cancer which I am at high risk since my mom and her sister had it. I take omeprazole for stomach protection. It is amazing as to how good I feel this morning. Could it just be getting on this forum and talking to people who are dealing with what I am? It is nice to have someone who understands. My husband is great and he tries to as do my friends, but I don't look like anything hurts and sometimes I wonder if they even wonder if I am making a big deal of a little thing because as we all know, it is not a little thing. I did take a good nap yesterday afternoon after we had gone swimming. The swimming was very comfortable and relaxing and didn't hurt! I hope to do that today again. I am getting embarrassed though to put my suit on since I have really gained the weight. I read one post where someone said they felt like the Michelin Man. I can relate with that. I try to control my eating but the pred causes me to be very hungry all the time. I try to drink lots of water to help fill my stomach but then I am at the restroom all the time. And getting down to that seat is very uncomfortable. We are out of town for the rest of this week so when I get home I have my raised seat there which will be much more comfortable.

Thanks for reading my posts and offerings of helpful ideas. I have written down a lot that I will be taking with me when we are back home and go to see my internist and rheumy.

13

Yes - I think it does help when you find someone who has been there and knows what it can be like. The support group in the north of England have actually made a DVD about PMR for the benefit of not only the patients but also their family and friends - we don't LOOK particularly ill and once we are on pred we certainly don't! How we FEEL though is another matter.

Swimming - or even just walking - in a warm pool and using the steam room/sauna afterwards is very comforting. Keeping the muscles warm does help - and some people find using an electric blanket in the morning BEFORE getting up helps with getting going. Who cares what you look like - it's nobody's business but yours and actually - I bet most people don't even think about it. They can't see once you are in the water!

Something that helps a lot of people on pred is to cut the amount of carbs greatly. Contrary to popular belief we DON'T need much carb, you can get all you need from vegetables and a small amount of fruit per day but cutting carb to a very low level won't hurt either - the first short while may be a bit unusual but the body soon realises there isn't the sugar to work from and starts to burn the fat to get the energy it needs - and you lose weight, especially the nasty stuff sitting around your middle which appears so quickly with pred. I have lost over 30 lbs in the last year by cutting my carbs and mixing it with the ideas of the 5:2 diet - I'm not fanatical about either, if I were I could probably have lost more or quicker - even though still being on 10mg or so of pred at the start. Pred changes the way you metabolise starch, and especially sugar. You eat some carbs, your blood sugar spikes and then falls dramatically - and you crave more carb. If you keep the carb down low you don't have that effect and you don't get the cravings.

I know it is difficult in the USA - but cut the carb and eat half portions of the rest! My husband and I often share a meal in the USA! Knowing about portion sizes is what leads to weight loss - but noone has told restaurants anywhere! Here in Italy we take a tub - most meals here will do me for 2 meals! I take the leftover meat home and do fresh veggies. A pizza each in the village is easy - 1 evening meal and 2 lunches and they even provide a pizza box to take it home ;-)

14

Thank you Eileen. I will try cutting way back on carbs to see if it will have an effect. And yes my husband and I do often split meals or both of us have our own and take the rest home for the next day. Going to go get ready to do some swimming. That is at least getting my body moving and it feels good. Again. I thank you and everyone for responses.

Diane

15

Hello,

I thought I'd update you on whats happened since my original post in this thread.

I finally saw my rheumatologist on friday, 3 months after last seeing him. After hearing how I deteriorated and my response to steroids he agreed that it could be atypical PMR. He was not, however, convinced so he has referred me for a second opinion to Prof Dasgupta in Southend. I specifically asked to see him as I'm aware of his work with PMR.

Eileen - you were spot on with the advice you gave about my hip, he found bilateral trochanteric bursitis and injected them both. They're currently worse but its only just 3 days post injection so I'm hopeful they'll improve.

He also has ordered a chest xray, more blood tests, a bone/joint scan and and abdominal scan to exclude other things.

He's going to check my hormone levels too at my request.

I feel much happier now that a definitive diagnosis should come with Prof Dasgupta's opinion.

Thank you for your help and support

Janice

16

Is your GP sure you have PMR ? Your symptoms should subside quite quickly if your dosage is high

enough. Steriod treatment can lead to other unwanted symptoms such as thinning skin.I now have the

hands of an 80 year old .