Just diagnosed with PMR. What can I expect?

Hi Brenda,

Welcome to the group that nobody really wants to be part of but are really glad that it's here!!!  I haven't had heart palpitations but hopefully someone else here will be able to address this issue for you.  I am not aware of PMR shortening our life expectancy.  It just makes it more "interesting".  After a bit your GP will want to start lowering your prednisone dose but do NOT let him lower it too much at one time!!! The guideline I see here all the time is dropping the dose no more than 10% each time, especially when you go below 15 mg.  Otherwise you risk the pain flaring up again and then having to go to a higher dose like 20 mg to get relief.  I have been at dosages of 15, 12.5 up to 20, down to 15, up to 30(!) and now am at 15 again.  Don't get fixated on how many mg you are taking - it's whatever keeps you free of pain or mostly free that's important.  Yes, we want to take less prednisone but no rushing the process or the PMR will kick ya in the butt.  The only time you'll increase the dose is if you aren't able to control/eliminate pain and swelling at a lower dose.  Everyone has a few or a lot of side effects from prednisone.  There's no predicting what yours will be.  Mine are relatively few, such as thinning of skin as if I was on blood thinner, messed up sleep cycle, blood sugar has kicked up so I'm considered pre-diabetic and at the end of a normal work day I'm fatigued to the point of having to forget about doing normal chores at home or even a trip to town.  Could be worse - could be better.  I'm sure not complaining though.  I remember PMR before I got put on Prednisone.  I don't want to experience that again.

Hopefully your GP explained that the prednisone controls the pain and inflammation.  It does not cure the PMR.  You get to live with it until it decides to go away on its own.  Don't be afraid to ask questions here - I guarantee that there will be someone who has had the same issue or has information that will help you.  My rheumy specialist is an hour away for me so it's nice to be able to ask questions here or just read all the conversations that go on.  I have a feeling that your doctor might be much further than an hour from you if you're in the more remote western provinces.

My lowest point was before I was diagnosed as having PMR - not knowing what was happening to me and wondering if I was going to be an invalid or worse shortly.  I've had PMR for 16 months now and been treating it for about 9 months.  I'm 62 now.  Life isn't the same but it's sure not bad.  You adapt, learn a lot about PMR and yourself, experience setbacks and successes and give thanks for prednisone giving your life back!  Take Care.

Hi Brenda, I am a man of 70 years living in England also taking pred. I started on 15mg 2 years ago now down to 6 mg. I got heart palpitations at the start but they have now stopped, also got loss of balance not a lot just enough to make you unsteady occasionally about 3 or 4 times a day. The last 2 months I have had pain in my left breast just under the nipple and my breast have got bigger, not good for a man. Had to go for a mammogram results came back ok not cancer, I have heard on this forum it could be a side effect of prednisolne. I am taking Alendronic Acid tablets one tablet per week to keep my bones healthy.

I go to the gym, & swim at least 3 times a week.

hope this helps. Plenty of advice on this site from people who are in the same situation.

This is a great forum to help ease any fears you may have. I hope you find it helpful. I would caution against reducing too quickly with the prednisone but you don't have to go up any more if 15mgs is working for you. There is a method for reducing to which someone else will give the link. I had palpitations which are unnerving. I eventually realised it was the calcium which I was taking for the bones which wasn't helping so with medical approval I stopped taking it. I would not advise you to do this without eliminating other possibilities and discussing with your doctor. I went over to decaf tea and coffee and this helped greatly. I also found that as I reduced the steroids the palpitations reduced. I was referred to cardiology and all was fine. I am now on 2mgs after 2years and 4 months and all the side effects are disappearing. I had only one flare and that was reducing from 12.5 to 10, I had to go back up to 12.5 for a few days and the reduced to 11.  The one piece of information I wish someone had given me was that weight gain can be avoided by cutting carbs from the beginning. As not everyone puts on weight it may not happen to you. Best wishes on your journey. You are not alone.

No, this disease has no effect on life expectancy and there is no need to be scared - PMR does not cripple or damage organs, it is just a pain in the anatomy, literally! And it can be well-managed with pred - which isn't half as bad as most doctors try to make out.

This link is to  our resources page with links to useful and reliable information, including the charity websites - the NE of England one is particular good with loads of past issues of newsletters:

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

Pred CAN cause palpitations - but so can the autoimmune part of PMR and that is what caused mine, it was definitely not due to pred. If it is pred it should improve as you reduce the dose.

You won't stay on the starting dose forever - once your symptoms have improved and your blood markers are back to normal range (if  yours were raised, they aren't always) you will start to reduce SLOWLY. If your doctor tries to make you reduce 5mg at a time - DON'T. You will miss the end point you are looking for: the lowest dose that manages the symptoms as well as the starting dose has. It may take a while to get below 10mg - and many doctors get impatient. Don't let anyone bully you into reducing if it isn't working. There is no point letting it all come back, you will just end up going back to a higher doses and having to start over again.

I have never taken any "bone protection" drugs except calcium and vit D. My bone density has barely changed in over 7 years on pred, much of it at above 10mg. You are relatively young - you should have been sent for a dexascan BEFORE the decision was made to give you anything more than calcium and vit D. Anything stronger may not be necessary - and it is now recommended that bisphosphonates are not taken for more than a few years to avoid the side effects that are potentially associated with them. Doctors seem blissfully unaware of such recommendations! Anhaga is our expert there - and she also lives in Canada.

Where in Canada are you? There are members of the forums scattered across Canada, maybe someone is near you.

I agree with Eileen re the bone med.  I was offered alendronic acid but I insisted on a DXA scan first.  It did show "low bone mass" or osteopenia but I still refused the drug and over the course of a year through supplements and appropriate exercise improved t-score from -2 to -1.6 and the drugs are no longer being recommended.  It's best to avoid taking them if you can as they come with their own set of side effects  and as Eileen says can really only be taken for a few years anyway.  Whatever you do with your prednisone taper be sure not to be pressured into too fast a taper, and understand, unlike many doctors, that remission will come in its own good time, not necessarily according to a one to two year schedule, it may take longer.  but a slow taper should get you within a year or a little more to a level where prednisone side effects, if you've even had any, are minimal or gone.  Our aim always is to take enough pred to control our unpleasant disease but as little as possible to avoid the unpleasant side effects of the medication.  A balancing act, but it can be done!

Hi Brenda, I am so sorry you have been diagnosed with PMR. However steroids are a wonder drug, apart from the side effects, including palpitations, although some people are not affected at all. Your doctor should check your blood inflammation markers CRP and/or ESR to ensure that the pred is on top of everything. Once things are going well you will need to start reducing the pred. In my experience this should be done slowly although doctors want to go as fast as possible! PMR should not reduce your life expectancy that I know. It should go into remission eventually, normally it takes two years or longer. 

You say you are taking a drug for bone loss. Your doctor should have given you vitamin D and calcium. Bone loss can be a side effect of pred. Some doctors are very keen to give stronger drugs such as Alendronic Acid. However you should be offered a Dexascan to check your bone density. A lot of doctors forget to offer it. If you have a good bone density in my opinion you should think twice about taking bone strengtheners as they can have some nasty repercussions; new research is being done on them.

 

Hi Brenda

I too am in Canada and there are different degrees of pmr as to how it effects us. I just recently learned that 2 of my cousins have it and we are all different as to how it effects us. I have alot of side effects to prednisone were they don't or not as many.

I started late September 2015 on 20mg and could barley lift my arms were as before my husband and I built garages, landscaped etc. Very active.

I love water so i immediately went to the pool 3-4 days a week and regained arm mobility however i do suffer from exhaustion i can no longer go all day like i use to. I have to pace.

I cannot drop doses like most I'm dropping 1mg each time using the dead slow method and stabalize for about 4 weeks before i attempt another drop. I'm now at 12mg.

This time i over did during a drop and I'm having to take 2-3 months to stabalize. Know your body and don't rush. Those who usually do end up increasing there dose.

My concern is your bone drugs. Most of us say no. As my gp says no one is winning a nobel prize over this. My rumi wants me on and i say no and i lost 4% bone in 1 yr but my bones are still in the normal range. You need a bone scan asap so you have a baseline and then yearly compare.

I'm in Toronto and Georgian Bay were are you.

Mariane