Confused about Polymyalgia diagnosis
Posted , 8 users are following.
Having being diagnosed I am starting to wonder if the diagnosis is correct. The GP and specialist says it is because I improved so quickly, however this last week since reducing first from 20 mg re predesilone to 15 and now to 10 I am feeling unwell - not just the aches etc but tiredness and sleep disturbance along with mood changes. Any advice welcome? Also, I am paranoid about cancer having lost my husband to it just over a year ago. How do they know its not cancer? Thank you
1 like, 13 replies
steve_1
Posted
As for the cancer bit, you do have to have some faith in your doctors.
EileenH
Posted
You should improve quickly once you start of pred if it is PMR - I went from unable to walk up and down stairs properly to being able in 6 hours! Other bits took a bit longer but the improvement was dramatic, as it should be.
If you dropped from 20 to 15 and then to 10 in 5mg steps I'm not surprised you feel wobbly! 2.5mg is quite big enough and the top experts have said for a long time never more than 10% of the current dose. Many of us "oldies" (time with PMR, not age I hasten to add) feel that after 15 reductions of 1mg at a time are quite enough to ask your body to deal with. You don't say how quickly you did it either - most of us like at least a month at each dose to stabilise and be sure that dose is still enough. It isn't a race to get off pred - the pred hasn't cured the PMR, it is allowing you to manage the symptoms by reducing the inflammation caused by the underlying autoimmune disorder that leads to pain and stiffness.
Some people can reduce faster than others - but you have two things to think about: you don't want to jump too far and miss the "right" dose to control the symptoms at the moment nor do you want to suffer from "steroid withdrawal". Your body gets used to the pred very quickly and if the drops are big it is more for your body to deal with. Little steps and a rest between makes it easier - it isn't a race, patients who get off pred in less than a couple of years are at a higher risk of relapse - and then you start all over again and the second lot may be nothing like the first lot!
Before they made the diagnosis of PMR they should have done a load of blood tests and other things which should rule out the other possible diagnoses. The cancers that can mimic PMR would be found with blood tests and the symptoms wouldn't respond so dramatically to a moderate dose of pred either - only simple PMR does that.
Tiredness and sleep disturbances are common when you take pred - and fatigue is also a part of PMR which doesn't always disappear when you start on pred. Pred also makes some people moody - it didn't make me moody but PMR certainly did! So either way - it's there. And I will lay odds that since you have felt so much better you have been "catching up" on what you didn't do while you were ill haven't you? That, combined with such fast drops, is pretty much programmed to wipe you out. Calm down - rest a bit and look after yourself and give your body a chance to heal. You haven't been given a miraculous cure - you have to do your part in the management and that means taking it a bit easier.
I know it is easy for me to say - but you also need to stop worrying because the worry of "is it cancer not PMR" is a stress. PMR feeds on stress, many people who develop PMR have been through a stressful period in the year or so before. I know where you are - been there, done that 20 years ago. We were lucky, my husband survived but it was very touch and go and know all about the "is it happening again/to me" feeling. It is there, it is part of your life - but for now you need to concentrate on dealing with the PMR.
There is another forum which is chattier and more like a proper support group which you'll find a link to here: https://patient.info/forums/discuss/pmr-gca-and-other-website-addresses-35316
as well as a website with lots of reliable info all approved by medics but written for patients. The forum is always there for a complain/whinge/scream/questions - there are members all over the world and a load of night owls so there is often someone around even at night. That's when the fears and worries jump about all over the place - so don't ever be alone.
Eileen
christine26681
Posted
What is concerning though is the speed at which you have reduced the prednisolone. Coming down from 15 mg to 10 mg in the space of a week (if I am reading correctly) is much too fast. I was on 15 mg for 7 weeks and have been on 13.5 mg for 2 weeks. It is best to reduce very slowly, no more than 10% at a time, or it is very likely your pains would return.
As for feeling generally tired and unwell this is likely to be steroid withdrawal symptoms from reducing too fast.
Wishing you all the best, Christine
caravankath
Posted
Thanks again, so glad I found this site.
EileenH
Posted
Yes, you need to trust your doctor but often they are out of step with current thinking and many are not prepared to consider the fact that everyone is different. It isn't unusual for people to be given a reduction pattern that might fit with other illnesses but not with PMR.
Eileen
diane26757
Posted
I have a question I would like to pose to others. Does any one also have GCA? I have been having pain in my temples in the last few days and a little blurred vision and my teeth hurt. Has anyone had any of those symptoms and if so, what was done? I will be talking to my docs about that when I see them. I am wondering if this could be GCA.
Again, thanks to any and all of you for your responses as well as wonderful information you are posting.
Diane
EileenH
Posted
GCA is a medical emergency - it must be treated promptly to avoid the risk of loss of vision and although some people can go for months with symptoms and nothing happen, equally it can get worse very suddenly and there is no way of knowing who is which. The treatment is just the dose of pred is much higher to reduce the swelling in the arteries that is the problem. If you have been on even lower dose pred for a time the doctors often don't do the biopsy that is the only way of knowing 100% it is GCA - if it is positive. It is only positive in about 40% of patients with GCA anyway but it is currently the only option. That is a procedure to take a small amount of artery from your temple and look for the giant cells that give the illness its name.
However - since it is the weekend coming up, if you can't get to a doctor today don't wait for an appointment next week, especially if the headache or blurring gets any worse go to the ED/A&E immediately and tell them you have PMR and about the symptoms and that you are concerned about symptoms of GCA. It is better to go once too often than once too few times.
caravankath
Posted
I agree with Eileen, I have also been having headaches and I have had blurred vision, which I was told was due to macular degeneration. I think the headache is due to the steroid reduction - but with the blurred vision. Not sure. Will be seeing my GP on Monday if I can get in. The consequences are too serious to ignore in the case of GCA.
Kind regards
Kath.
MrsO-UK_Surrey
Posted
Yes, I have had both PMR and GCA, and temple pain, blurred vision and jaw pain were among my symptoms at diagnosis. It took a while for GPs to diagnose GCA but once they did, 'it was all systems go', with immediate treatment of 40mgs Pred and urgent referral to a rheumatologist. I can't stress enough the importance of getting your symptoms checked out as a matter of urgency - you have nothing to lose and everything to gain. Your steroid dose has been reduced very quickly and the dose you are on is not sufficient to protect your eyesight if you do in fact have GCA. Lots of good luck wishes and do come back and let us know how you get on.
MrsO
MrsO
diane26757
Posted
We will be on another trip in March for about 3 1/2 weeks to escape again to some warmth. Hopefully by then I will have everything under control. Since my walking is very slow with the PMR and I cannot walk very far, my husband bought me a little scooter for me to get around. I don't use it all the time because if distances are short I like to try to do them on my own. But when we vacation we typically in the past have walked many, many miles viewing things. We often do walking tours. That is out of the question right now so my hubby walks and I scoot. It has been wonderful for that. I even used it in the house yesterday as I was going from room to room putting things away and doing laundry. I would recommend it to anyone who is having some trouble walking.
I also will be talking to my orthopedic surgeon next week hoping to get either a hip or knee replacement scheduled. Sometimes I wonder if some of my pain is just bone on bone joint problems and not all PMR. But the difficulty getting up and the difficulty getting up stairs and the weak, sore feeling around my hips/thighs and only one arm are there and my doc feels it is PMR. I am hoping I can get a hip done in April after we are back from our trip. My concern and I know my doc will be able to help me, is am I going to be able to do rehab, which is so important after those surgeries, with my PMR?
That is it for know. Again, thanks to all of you for your help and information.
caravankath
Posted
EileenH
Posted
On that link I gave you:
https://patient.info/forums/discuss/pmr-gca-and-other-website-addresses-35316
there is a link to a paper from the Bristol group about diagnosing and treating PMR. They've done work on it and do know what they are talking about - on page 4 is a table with the reduction scheme that they find works for 80% of patients without inducing flares (because what you had wasn't steroid withdrawal, it was a return of the symptoms because the dose was taken too low too quickly). They suggest 6 weeks 15mg, 6 weeks 12.5mg, a year at 10mg. This is a paper aimed at GPs so not wibble and not Dr Google.
You have to think of PMR inflammation as being a bit like a forest fire - you can smother the flames with sand or water - but as soon as you take that away the fire flares up again. Eventually it will burn out because there is nothing to feed on but until that happens there is always a risk of more fire if you stop dousing it.
Better luck next time
Eileen
MrsO-UK_Surrey
Posted
So good to hear that you feel better after upping the dose to 15mg - there's your proof that your original reduction was way too fast and too steep.
Even though you are feeling so much better, don't be in any hurry to reduce but stay on 15mg for a good 3 weeks now, and then try reducing to 14mg and see how you feel. Far better in view of your recent experience to go very slowly this time. Few PMR patients, if any, would have any sustained relief in their pain reducing in the way that you have done previously. Good luck this time round.
MrsO