Has anyone with pmr suffered with hip and knee pain.

Hi Linda and welcome!

Can you tell us more about the ups and downs and what exactly you mean by "hip and knee pain". If you really have simple PMR then you should have got a lot of relief at the beginning when you were given pred: did you? What was it like at the beginning? And what is the pain like now? Where, what is it like?

There are things that can cause pain in your hips and down into the leg - but we need to know a bit more.

Eileen

Hello Linda,

Welcome to this group. I just got recently started in it - about a week or two ago. I have really enjoyed reading it for much longer. I feel almost exactly like you. I was diagnosed in May and started on 20 mg. of prednisone. My first weaning went pretty well because my GP had me wean slowly, but when I got to 5mg. my rheumatologist had me cut it in half and it was almost instant flare up. I see him next month and am going to ask if it is not better to wean at only 10% of the dosage at a time. This is from information i have gotten from this forum. I recently had another flare up and he did a burst and taper with me. It was 3 days of 40mg., 3 days of 30mg, 3 days at 20 mg. and three days at 10 mg. I became very painful at 10 mg. so he put me at 15 mg. and after about a week now, I am feeling quite a bit better. On the weekend, Sat., Sun., and even Mon. I had a pretty bad headache and in the evenings the back of my neck started hurting. I was afraid that it could be GCA, and knew I would be seeing my GP today so I am going to ask her about it but today and yesterday it is/was not hurting. I hope she can give me some answers on it.

I do want to let you know though that yes, I do have hip and knee pain. The reason for it is I need two knee replacements and one hip. Have you seen an orthopedic Dr. about yours? I see my orthopedic Dr. tomorrow about that. I am hoping I can do one of the replacements early in April. But I must say that some days I don't know if it is PMR causing a lot of the pain or the fact that the three joints are bone on bone. Between today and tomorrow I hope to get some answers and will share any important information with you that I get.

One other symptom that I have a lot is extreme tiredness. When I am well I am almost like the "energizer bunny". Now there are days I wake up, eat some breakfast and have to lay down or sit down and often fall asleep for another hour or so. Then I can make it through the day. I also am still concerned that I still have to take pain pills - sometimes up to 6 a day. I will be asking about that today and tomorrow also.

Wish the best for you.

Diane

Hi Linda,

Yes, I understand where you are coming from, as I was diagnosed with PMR last July and put on Preds of

20mg and became like a spring Chicken, energetic etc, now having reduced the Preds ,over the past few few months

I am n 12mg the pains and discomfort are coming back.and everything seems to be an effort.

it seems to be that the inflammation is returning,and I know that when I was on a higher dose theESR .I

think that the GP seeing that the level was reduced ,said you can aim at coming off the Preds as being on them for 6months is a long time..... I read that many people are on them for longer than 6 months,

I have to say I do not like taking Steroids for various reasons, like putting on weight,I am not as hungry on

the Preds as I was when I first started on them,,,

Just before Christmas the GP wanted me to reduce from 15mg to 12.5 and then aftrer 2 weeks down to

10mg. If I am having problems with the 12mg surely I will have more probs with the 10mg

I am somewhat confused here....especially now that the pains ,stiffness etc are returning on this present dosage

Irene R

I too have an appointment with the Rhuematologist in February, so I am trying to hang out with the lower dose of the Preds so that he can see what I am like, I suppose I am not doing myself any favours,,

Escot - It is possible the reduction of 2.5mg at a time was simply too much at one go and to reduce from 15mg to 10mg within weeks is definitely far too fast. Some people simply can't manage the bigger steps even though lots can.

You could try going back to 15mg for a couple of weeks and then reduce just 1mg at a time - which is something many of us have found successful. I had never got below about 9mg without a return of the symptoms before but since a massive flare, possibly a mild degree of GCA, about 18 months ago I was stabilised on 15mg and since then have reduced 1/2mg at a time every 4-5 weeks and am currently at 5mg with no problems at any time at all.

I'm sure you thought my reply to Linda wasn't very helpful - but unless she can tell us the symptoms it is impossible to hazard a guess what the problem is.

For example, it could be the PMR - even on pred many people do not manage to be pain-free and when you have to work it is that much more difficult. If you are older and/or retired you can rest - and that is part of the management of PMR.

Or, if it isn't simple PMR it may be that pred isn't the best treatment - higher doses of pred will mask quite a lot, slightly lower ones don't. A good basic way of being that bit more sure is "did the pain and stiffness improve by 70% within a few days on 15mg?" - if it didn't it could well not be PMR but possibly late onset rheumatoid arthritis or another arthritis.

Or it could be bursitis - which is often found alongside PMR and shoulder and hip bursitis are often said by experts to be part of PMR. It sometimes goes away on its own, sometimes it improves after several months of 15mg pred - but lower doses aren't as effective.

And Irene - you can have a flare of PMR at pretty much any time if the underlying autoimmune disease becomes more active. The most common cause of a flare is reducing too far and/or too fast. And yes - if the PMR is active at 12.5mg you could be worse at 10mg.

It is all very difficult - because some people get muscle pain from pred or other medications we are often on. Are you on statins (for cholesterol) or anything else? And have you had your vitamin D level checked as a low level of that can cause sore muscles - and it is at its highest in September - by this time of year it can have fallen to very low levels.

Eileen

Dear Eileen

We were in contact some weeks ago, and I think I told you all about the problems that I have been experiencing.and you very kindly suggested people to contact.

I mentioned to you about the Temp GP standing in for my own GP who has been urging me to come of the

Preds as soon as possible, and suggesting that I drop down to lower levels,, the point is that I think that

many GP are used to prescribing a few days of Steroids for an infection, but perhaps not geared up to

support patients who have problems like PMR and perhaps this is the problem

I know that they have some training on perhaps how to recognise PMR but we perhaps should not expect them to be experts in all

I also think that when they see the ESR levels drop, then they think " OH Well" now this patient can come of the Preds or reduce them to a much lower level,and the patient then becomes misguided and looks for other ways of searcing for the help they need.

You yourself have /are very helpful,and I have taken on board your suggestions. and often refer to them

Yes when first taking the Preds, the pains seems to disapear within hours, so something tells me that it but since dropping down, even at 15 they were coming back, and even on the 12.half.they returned,causing me problems with pain in my hip region, I find that I cannot stand for very long, and although I did

suffer from muscle cramps from time to time, now they seem to be with me all the time.

I may have mentioned that I was advised to continue with my Co-amilofruse.2.5mg/20mg as I tend to

retain fluid, and also I have COPD for which I take/use Puffers . I have asked several times as to whether or not these 2 medication interact with the Preds.and nothing definite has been given to me, although on the Preds information it does state inform GP if you are taking other medication. which I have done, but I

am still not sure if they are interfering with the preds...

I was also recently diagnosed as having fluid on my knee which was drawn out and a cleanout of the knee was suggested, and I was told that I would be our of action for about 7 weeks. and because of the

COPD they would do it with a local.

I was also informed that I may need to have steroid injections into the Knee, I do not feel at this time that I can take on board having this procedure done, as I would like to know how this prodcedure would affect me and the fact that I am already on Steroids.

The biggest problem, that i seem to be having is that I cannot obtain the answers that I need for all this

and this is why I said that in general GP are not always geared up for people on long term use of

steriods, Please believe me, I would dearly love to come off of steroids, but how and when this will

happen I do not know, especially now that these pains are returning.

Thank you for your time in reading this

Kind regards

Irene/Escot, and any advice from here would be welcome

Absolutely Irene - they are used to giving a week or so of pred and it's fine to stop straight away and the idea of a patient being on it for years scares the living daylights out of them!

If you have a knee problem it could easily be affecting your lower back and that could cause problems in your upper leg especially though it can also go further down into the calf and foot, like sciatica. I had low back problems and it had that effect and it also made the PMR worse. The PMR has steadily improved since that was sorted out separately. We know people who have had hip replacements and then found the things they thought were PMR have improved!

There is little to fear with the steroid injections - I had them into the knee years ago but also needed them into the hip last year for trochanteric bursitis. That wasn't into the joint so was slightly less complicated maybe but it certainly wasn't a problem having it done whilst being on steroids. Most of the steroid remains locally - it does raise the blood level a bit but not a lot - and it is really only like having a slightly higher dose for a couple of days. Some doctors use such injections for PMR but the effect doesn't last very long in some people.

If you want information about interactions of drugs - ask a pharmacist! They know far more than any GP - they did 5 or 6 years of training in pharmacology, not just a course spread over a year.

Sorry I didn't register the name - I knew I recognised it but with about 40 or 50 different names floating about on one or other forum I couldn't quite place it!

Eileen

Dear Eileen

Thank you for coming back to me, and also it is nice to know someone has the same views re the Drs and the steroids, as you say, they are scared to go beyond the few days and do not know what to do, but this in

itself is scary as they maybe giving our the wrong information on how to reduce them. with this attitude,how do I know if I am reducing them in the correct form.

I must admit that the last few days that I have reduced the Preds from 12.and half to just 12, I am not feeling too good, mood is lower,and tension headache, I do not normally suffer with headaches,so I am aware of it being there, my shoulders ache and my arms and lifting them up hurts also. Re my knee and back, all the points you have raised seem to be there also, so all in all, I am taking 2 steps forward and 10 back as they say.

The other piont is why do the GP go on one reading of the ESR levels being lower to tell you to come

down of the Preds,I did mention about these aches and pains returning, and was told that I should take

Paracetomol to help and not to increase the Preds....

help, where do I go to from here....?

When I was first diagnosed with PMR my ESR level was 33 perhaps not as high as many other people,

but the consultant wrote to my GP to confirm that it was PMR and that I should be put on Steroids to start aat 15/20 mgs, with view to reduction over a period of time and this time could be anything between 1-3

yrs. so you can see as to why I am getting really confused all over this problem

I did question the GP and i must say I think he did not like this, and he said that his thoughts are that it is not PMR but just aches and pains......!!! so who is right a consultant who is specialist or a GP.

Thanks Eileen

Your comments will be welcome

Kind regards Irene/Escot

We know paracetamol does not appear to help most people with PMR pain and stiffness so telling you to use it is pointless.

Why do they go by one reading of ESR? Ignorance I'm afraid - the ESR being in the normal range doesn't mean there isn't some activity there but that is something that some of us have worked out by bitter experience. In fact, 33 was in the "normal range". Have you looked at the Bristol paper? It's on the link at the top of this forum

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

and gives a good reduction scheme - but you can't reduce if there is still inflammation. It is aimed at GPs - but you are on to a bad thing here really as your GP obviously is dismissive of the consultant's opinion. Is there another GP in the practice you can see who might be more sympathetic?

So far, no one has looked at what is the best way to reduce the pred dose. Some people are aware this is a missing link so it isn't being ignored.

I'm a bit concerned about your mention of the muscle cramps - is it general, sort of all over, or just legs? If your GP won't do a blood test for potassium and magnesium (both can cause muscle cramps if they aren't correct) you could try eating more potassium-rich foods:

Fresh fruits: bananas, cantaloupe, oranges, strawberries, kiwi, avocados, apricots

Fresh vegetables: greens, mushrooms, peas, beets, tomatoes

Meats: beef, fish, turkey,

Juices: Orange, prune, apricot, grapefruit

Another lady was put on diuretics with her pred and that was a problem for her - a few bananas helped!

But really you need to go back to the GP (preferably another who doesn't have preconceived ideas) and discuss it. If all else fails you could ring the consultant's secretary and explain the problem and see if you could see him sooner.

Eileen

Dear Eileen

I have an appointment to see a Rheumatologist in February 11th and the week before for a Dexa Test.

I have opted at seeing another GP in the surgery, who I must say she is helpful and I think that she

understands a bit more, she is working there as a fill in, so perhaps she is trying her best to show she is keen and helpful.

Re the ESR levels, you mentioned it was in the normal range, but It was never explained to what a normal orabnormal range was....all I was told by the Neurologist that the 33 was indicating PMR... The other GP told me that the blood tests that he arranged came back satisfactory/acceptable.....not sure as to what

these other tests were for, but he did do a Liver Test,and Kidney Test and said they were acceptable/satisfactory. I did mention all this to this lady Doctor and she did say, that she thought that now I have the appointment with the Rheumi that they would perhaps want to take their own tests so I should wait unitl the 11th of Feb.....

Re the fruit and Veg you mention I do include all in my diet. and I love them all so it is not a problem for

me.

The muscle cramps are all over, and can come on at any time of the day or night different positions,

I always have a bottle of Tonic water in my bag ,it works for me, my husband says he cant believe that it

works, but it does for me, I have also a bottle by the side of my bed, and I make sure that I leave a bottle in both of our daughters homes.

I did have test some time ago, that stated that I have mild carpel tunnel, but even using the keyboard my

fingers are cramping, holding cutlery,the cramp can come on in my hands /fingers,sometimes my fingers cramp into my hands, and it is painful

I have to-day increased the preds back to the 12 and half because the last few days on just 12 have made the pains worse in my arms and shoulders, I cant believe that such a small amount has made this difference,and it is only to-day of the increase so I am sure that it is going to take a f ew days before I will see

any improvement if ant=y, I also seem to be getting cramp if I bend down, my hands are also painful, is this part and parcel of the PMR and the imflamation that is hovering,

Because people cannot see you have these problems they do not understand that there are some

you cannot do very easily, and very often I hear, you can if you try, like holding a dish,and if I drop the dish because

my hand goes into cramp, I am told,well you can be clumsy you often drop things, so you use this as an excuse...

Please believe me it is not an excuse, If I have to carry 2 cups of tea upstairs, I use an empty icecream

container. I do look for ways to help myself and others for that matter.

Thanks for being there Eileen

Kind regards

Irene/Escot

I recognise the hand cramps you describe - a lot of us found we broke a lot of stuff in the early days of PMR! So no - no way do I think it is an excuse Irene! Mind you - I couldn't have carried anything and walked up stairs - I put things onto a stair as high as I could reach, pulled myself up to it - rinse and repeat!

I'm still a bit concerned if you say you have cramps all over - I assume you told the new GP? But she sounds a good thing - I have met a few fill-ins who could leave the others standing. They are often less jaded perhaps - I pray they will stay the way they are when we meet them.

Had I had an ESR of 33 it would have been very high - for me. Maybe this neuro has had enough experience to realise that many of us only have readings at that level when there is something wrong rather than assuming that "you're 60, your ESR will be at the top end of the scale."

all the best and it isn't very long until Feb 11th (better remember that, it's my daughter's birthday ;-) )

Eileen

Hi,

For seven months I had had lower extremity issues and then the pain moved into my upper body. I am still on 10mg of Pred and thinking of trying a higher dose for three days or so and then going back to 10mg. Hopefully some of the pain will go away. The last week or so I have been experiencing stronger pain in my knees than before. Every day seems to be a little different as the pain locations float around to different parts of the body.

I cannot work now, so I have a life of forced leisure.

Shawn99

Has your doctor considered it may not be PMR but an inflammatory arthritis? Rheumatoid arthritis also manifest by joint pain that moves around the body - one joint last week, nothing this week, another next week.

If it is PMR and you are having a flare only a suitable higher dose will do much. But PMR doesn't often manifest as knee pain so maybe a visit to the doc is in order.

Eileen

Hi Eileen sorry I hav'nt replied sooner, when I was first diagnosed I was given 15mg pred it was a miracle cure no pain at all, I slowly reduced the pred getting down to 6mg then I had a flare up. I haven't felt 100% since that. I have pain in muscles up either side of my spine and my legs are stiff and they just don't wont to go. And of coarse the usual tiredness. The pain in my hip and knee's seems to come and go, at the moment its not hurting but last week I was struck with a sickness bug so I wasn,t able to work so I,m thinking a lot of rest is what I,m needing but when you work what can I do.

It is often difficult to reduce after a flare, especially if you didn't go back up enough to really hit the inflammation hard.

I wonder though - have you got access to physio or a good massage therapist? If you have stiffness down the side of your spine and sore legs it could be myofascial pain syndrome - that causes knots in the muscles in trigger points, some are down the side of the spine and there are also some in the lower back. They can pinch nerves and cause symptoms similar to sciatica and other referred pain. It has been a problem for me but having had that treated has made the PMR far better too in the long run. The hard knots in the muscles have been found to be concentrated spots of cytokines - the same stuff that causes the rest of our inflammation and pain/stiffness - so for a short time the PMR can get worse after "releasing" these areas and the cytokines. I got a lot of relief from seeing a Bowen practitioner - not cheap but I found it excellent. Google it and see what you think.

And yes - rest IS what you need with the right sort of exercise (probably not work!). Have you been to your occupational health department?

Eileen

Hi Eileen

Thanks for the advise, I have just been refered to occupational health through work it will certainly

benefit me in the long run. Its funny though but when i'm not at work or doing anything at all the pains

just disappear it seems that slowing down is the only action to take.

I will also google Bowen practitioner, its nice to have a little help with this dam condition that we,re

all coping with.

linda