Confused about Polymyalgia diagnosis

I have just come down from 20 to 15mg (1 week ago) and I have a few aches and pains, especially first thing in the morning, and I don't feel quite as bright as I did, so I had a word with my brother who has been through this and come out the other end relatively unscathed and he tells me this is quite usual although he thought the drop was a bit steep. He seemed a bit surprised that my mood hasn't changed much. He apparently got quite uptight at times and became a proper doom merchant.

As for the cancer bit, you do have to have some faith in your doctors.

Hi and welcome.

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

Hello caravankath. The rapid improvement on 20 mg is what is to be expected with PMR. Most people find the improvement at this dose is quite dramatic.

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

Thank you all, a lot to digest. I think I need to revisit the Doc re the quick reduction- probably withdrawal is my initial thought, also need to clarify what the initial blood test showed. I know I need to trust the doctor, and to be fair he has been helpful, but the specialist is the one prescribing and I feel the doc doesn't want to interfere, though I have only had one apt and he just gave me the tabs, the reduction regime and one telephone consultation. He's clearly in demand!

Thanks again, so glad I found this site.

Kath - please tell us more details of what reduction you were given so we can comment with a bit of founded knowledge - we are in a position to provide sensible medically based info with references to back us up.

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

Hello kath.I am rather new to this site and really love it even though I have only written in it a couple of times. I love being able to talk to others who have this same debilitating problem. I started out exactly like you at 20mg. of pred and because this helped so much was reduced to 15 and then 10 mg. I was feeling so well that I was then reduced to 5mg. and did pretty well so my rheumy had me cut that in half and that caused a miserable flare up. After reading many other's responses I realize that I first of all did not stay on the doses long enough and also cut back way too drastically. I will be seeing my primary care doc next week and my rheumy next month and will be talking to both about much slower cut backs. That is what seems to work for the people who have been successful with the meds. I would suggest you talking to tour doc about the same thing. Also, I do agree with Eileen about the slow and small reductions of pred. And considering the fear of cancer I agree with Eileen again in that worrying about it is a stressor not good for PMR but also many blood tests most likely were done to get your diagnosis and a cancer most likely would have shown up in the blood tests. In fact that is exactly what happened to me. Some of my tests were coming back with strange results - surely not in the normal range. I was also diagnosed with lymphoma for which I did three rounds of chemo and am in remission/stable at this time. I still don't always feel the best with the PMR yet though. And I know I do not help my situation because I am a typical type A personality and I always have to have things perfect. This makes too much work for me now with the PMR and I am trying very hard to settle down about having things too perfect all the time. I am at least trying to work a little, rest, work, rest, etc. but still sometimes bite off more than I can chew. I wish you the best and hope you can get to feeling more comfortable.

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

Diane - - you don't say WHEN you are intending seeing your doctors but (personally at least) I would feel happier if you went to see someone as soon as you possibly can. Temple pain and blurred vision are both signs of GCA, teeth hurting wouldn't usually be classified as such - but jaw pain that comes on when you chew but goes away when you stop only to start again next time you chew is.

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.

Hi Diane

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.

Hello Diane

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

I do have Dr. appointments next Wednesday and Thursday. As I woke up this morning, the temple pain is not there. We just got home from a long trip yesterday and had all the putting away of stuff, washing, ironing, etc. to do and I guess I am tending to blame it somewhat on that. Temples were just moderately sore or not at all while we were on our trip. We were in Florida and we thought the warmth would be good for my PMR which it seemed to be. For any of you who have or have had GCA, how much pain do you experience in your temples? I guess a few days I didn't even pay much attention to mine since it was mild and I don't know if that is good or not. After all of the specialists I have seen in 2013 I guess I am a little gun shy to go too soon, but the docs I am seeing next week are wonderful doctors and I feel they will help me well. I sometimes wonder if my primary doc (who is an angel and I totally love - and according to all her nurses she is a great detective and will find what the problem is) can believe that I could have something else. She is the doc who found my blood test abnormalities and she sent me to an oncologist at which time the lymphoma was diagnosed. So I totally trust her with anything I go to her for.

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.

Hi, after reading the posts, and because I was anxious, I went back to my GP who has 'upped' my steroids back to 15mg - much better and brighter this am - and no headache. My original regime was 20 wk 1, 15 wk 2 and 10 wk 3, my GP agreed that I may have to slow down to prevent any steroid withdrawal. According to the GP this sometimes works and sometimes doesn't - of course it is better if it does, but in my case I think the slower approach will be better. Thank you.

Hmmm - it might work for something other than PMR but it certainly has never been suggested in any of the LARGE amount of literature and textbooks I've read nor do I know of a specialist who would use it in what they thought was PMR.

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

Hello Kath

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