I have Post Polio Syndrome PMR and GCA. I recently started treatment. I am hearing that this knee problem/cramping/stiffening what ever you like to call it may be linked to the steroids I am taking. I feel so down right now and not at all myself. My work is suffering. Has anyone else experienced this please.
Over the past few weeks I have been unable to unbend my knees when I wake up and for 10 - 20 minutes
Hi Christine, are you saying that you have PPS and PMR and GCA? Are you on 15mgs of prednisolone? Has the knee problem started since your PMR? GCA? Diagnosis, since you began prednisolone or was this problem part of the PPS symptoms.
please return with clarification. Regards, christina
Hi Christine, You have a lot on your plate there you poor thing - but don't panic. I have PMR since July 2013 and I certainly had severe stiffness of muscles at the back of both knees BEFORE MY DIAGNOSIS that made it really hard to bend my legs. I tried to describe it to the GP who said she had never heard of it before. However, after less than a week of Prednisone (20mgs) it disappeared - and hasn't returned since. I'm now gently tapering down the Pred. and am fine so far. This is a great forum and you'll get lots of support, so keep in touch. Kind thoughts. J
Hi there, as far as I can recall the knee problem started soon after the steroid treatment 15mg. I was really confused about this as the consultant said I would feel great as the steroids would boosst me up and give me lots of energy. Yes I have the diagnosis for PMR. GCA and PPS. My first thought was that I was beginging to be paralysed again as with the initial polio but I wondered if anyone had experienced the difficulty unbending the knees after sleep and rest with PMR. I am not feeling the pain I did with the PMR.
Hi there and thanks for the kind message. My problem now is unbending the knees after sleep, rest, sitting. I look like a very old woman and I am only 61. I am working and standing much of the day. When I am standing up I am okay but I dare not sit down durning working hours or my legs refuse to unbend when I get up. It is very embarassing. Before I see my PMR consultant in a few weeks I need to get my head straight and work it all out. I see my PPS consultant in a month. The up side is that I get a trip to London :-) although on two occasions I was to exhausted to do anything but get back on the train.
My gyny said the same as yours "steroids give you a boost of energy". I have had PMR for 3 1/2 years and I'm STILL waiting for the boost!!!
Hello Christine, the trouble with having multiple medical conditions is pinpointing which one at any particular time is playing you up. The trouble with your knees could very well be either the PPS or the PMR. However, if all your PMR symptoms have been brought under control with the 15mgs of pred I'm of the opinion that the knee problem is related to your PPS and it's simply a coincidence that it's surfaced when it did. However, I'm no Dr so it will be interesting to hear what your rheumatologist has to say. All the best, christina
Hi Christine,
I had this about 3 years before being diagnosed with PMR. It started with not being able to un-bend my kness after sitting etc. It would take about 2mins before I could stand up properly and I was only 50 at the time! It then changed after a year and the opposite happened; I could hardly bend my knees, especially my left knee. It was excrucialtingly painful, from behind my knees, up to my buttocks. I went to my GP several times about it, but although it felt muscular, she kept on insisting that it was due to my Osteoarthritis. I saw a consultant and a physiotherapist, who both said the same. I had a job walking for more than 10mins and had to use a stick. When the PMR really exploded, the pain expanded to the front of my thighs and my groin. Once on the Pred, all these symptoms have largely gone away and I'm walking and flexing my knees better than I have done for years. No more stick! I even manage the gym twice a week and can walk long distances. I also now know that the pain I and stiffness I experience in my arthritic knees, is quite different to PMR pain. I'm telling you all of this, because in my experience Prednisolone has really helped control my symptoms. If I do over do things a bit, I get a minor flare of stiffness and swelling, so it could be that you need to see your doctor about changing the amount of Prednisolone you are taking.
I do wish doctors wouldn't tell porkies about pred! You DON'T feel like new, you AREN'T pain-free and by no means everyone has a boost of energy.
We broke that news to a group of research medics last year - they were so surprised!
Sorry - can't help much with the pred and stiff knees though. How very strange.
Hi Christine, Every morning just before I get up to have my pred one of my knees are so stiff and do not unbend or bend whichever it needs to do. I stretch ( with much pain I might add) and flex and once I'm up it is okay although i cannot kneel down and expect to be able to get back up again any time. Other than that my knees then work fine for the rest of the day. I think it is the lower dose of pred I'm taking and not necessarily the pred causing it so suspect the pmr. I'm now doing the 3.5 - 4mg slow reduction. This knee pain was not so noticable when I was on the higher doses.
Myogelosis is a recognised part of PMR - after sitting you are very stiff when you get up to move but it is mostly pretty much all over, especially lower body after sitting. I had that pre-pred - but with pred I now need a long time in one position before I have a problem which isn't so very different from normal!
Hi Christine, so sorry you are feeling the way you are. All I can say that there is light at the end of the tunnel and as I have said before, some tunnels are shorter than others. Health is my number one priority, everything else comes after. It's a lifestyle you adapt to and pace yourself. Good luck on your journey. Regards Pat
Thank you for your encouraging words Pat
Thinking about it that sounds very simmilar to what I experience. I have started the reduction from 15 to 10.
Hi there, I have no real pain with the stiffness not like when the PMR hit and I was in agony. The actual PMR symptoms have subsided and this spazmodic paralysis has appeared. I will tell the consultant what you have said and I am hoping it may help him see a clearer picture. At first I was sent to him because they suspected :Lupus, seems something in my bloods hinted at that.
I am going to tell the consultant about the Pred myth. He told me not to take it at night because I wouldn't sleep!!!!! hohoho....I think even a cup of coffee would keep me awake better.
Hello Eileen I wrote to you some time ago. I have PMR and GA six years ago and have been on predisolene ever since. I went down to 5 mg last year and have gradually reduced my dose until I am on 1mg at the moment. I don think the 1 mg is effective my arms and knees and hips are all stiffening up. The problem is I don't know what to expect. I thought PMR went altogether and I didn't expect to be this uncomfortable. My GP has retired and my new doctor doesn't seem to know much about PMR. Any insight would be much appreciated
It is more than likely that the autoimmune cause of the PMR is still there but not terribly active so you are getting away with a low dose - that is the idea, you are looking for the lowest dose that keeps you comfortable.
You have to remember you are 6 years older which does make a difference as well as having been not terribly active in that time so probably unfit. However - it sounds as if you are a couple of mg too low. If the autoimmune disorder is very mild it will take a few months maybe for the inflammation to build up - since you are still taking pred it'll be like a dripping tap into a bucket where you are scooping out some water but less than the tap is delivering: the daily dose of pred is removing some of the inflammation but not all so it slowly builds up over time and then spills over. We often say in the support groups that you should hang around at each dose for a few months below 5mg to be sure it is still enough - this is such a low dose there is little harm being done.
You can't know at what dose that started to happen so if it were me I'd try 2mg and if that doesn't work 3mg and so on until I found the dose that worked.
Another lady on one of the forums just recently was told by her rheumy that the 1mg dose she'd been on for some months couldn't be doing anything so she should stop. Within 2 months the pain and stiffness was back - 2mg is just holding it so far but she could have been faced with a proper flare and being back to nearer 10mg to deal with it. Even these very low doses are doing somehting - and it isn't all "in our heads". Even if it were, a couple of mg isn't doing any harm if it keeps us feeling well.