With being on prednisone and the pain levels being up and down, exercise is very difficult. I try to eat healthily. I'm open to suggestions
Hi Margaret and welcome to our little club - which I'm sure you'd rather not be part of but that's the way it goes!
If your pain levels are up and down it does suggest that maybe you need a slightly higher dose of pred if the PMR pain and stiffness is breaking through but I have no idea how much you are on or your history of course.
I used to do aquaaerobics for the first 5 years of PMR, before it was diagnosed and treated with pred. I was lucky in that the local Bannatynes gym catered well at that time for people who were free to go during the day, the membership wasn't extortionate, they had a warm pool you could walk down into and out if via steps and there was a class every day except Sunday. With aqua you have little impact on joints, the water supports you - all you have to be careful about is not overdoing it to start with. It is harder work than you think because you work against the water.
Having just been through the "Type 2 diabetes" hoops recently with my husband I sympathise - although he had a brilliant dietician who realised the positive result was more to do with being given 75g of sugar at one go! Under normal circumstances he never eats more than about 30g at a time and his Hb1ac is perfectly normal - panic over.
Eileen
Hi Margaret, I've got both PMR and T2 diabetes, but there we part company as I've got hypothyroidism.
I agree with Eileen, the best exercise you can do is swimming - even being in water is helpful, but make sure the water isn't too cold.
I'm unable to do the swimming bit, but I do walk daily which is also good and I try to get out whatever the weather.
If you can let us have a bit more information - when you were diagnosed and what dose of Prednisolone you are on - we may be able to help further. Also, if you look at the 'Pinned' information threads at the top of this forum, you will be directed to additional help and information.
Thank you so much for your help. It's so good to have someone to talk to who understands what I'm going through.
I as diagnosed with PMR 3 years ago. At the moment I'm on 14mg of prednisone, and coming down. I haven't been able to get lower than 10mg.
I have done aqua and loved it. I did that when I was first diagnosed with diabetes. At that time I did the aqua once a week and walked the other days. Last year, I broke my ankle badly, and couldn't do anything for pretty-much 6 months. I did get back into the aqua again. My health wasn't good. I was losing a lot of blood from the back passage, so kept going dizzy. November, I had surgery to rectify the problem. Now, my body needs to adjust with the hyperthyroidism. I have been having severe chest pains on exercise. I'm to go to the Chest clinic this morning to see if the problem is my heart, or part of the hyperthyroidism.
I would love to get back into aqua again.
More similarities: I too have struggled below 10mg for the entire 4 years. At present I have finally got back to almost 8mg (not quite yet!). I have done it by taking nearly 2 months to reduce by 1 mg each time. I can't cut the 1mg tablets I use so I start by taking the new dose on one day and then the old for 9 days, new dose for one day, old dose for 8 days. I continue to reduce the number of days between the new dose by a day each time until I have got to alternate old/new dose. When I get to 3 days between I do it twice, then twice for 2 days between. That has taken the dose down to new dose plus 1/2mg. Then I do the next 1/2mg by INCREASING the number of days of the lower dose between the days of old dose.
I'm at 5 days 8mg, one day 9mg at present. It has worked so far!
I was having chest "sensations", couldn't say it was pain and it wasn't necessarily associated with exercise. However, last year I had severe back pain due to muscle spasm/sacroiliacitis and was admitted for treatment which involved valium given in a drip. I reacted badly with a heart rate of up to 230 (known but rare reaction)! It was atrial fibrillation as well - and now it has been dealt with the chest problems have disappeared - the episodes before were almost certainly atrial fibrillation and the valium made it far worse.
And: I had achilles tendon problems in March last year and spent until nearly Christmas on crutches. It wasn't helped by a doctor insisting I need to take statins and I developed severe muscle problems within a couple of weeks. It was an interesting year to put it mildly ;-)
I can now walk about 2 miles (no crutches!) and have lost 9kg since September. The heart problems are also fine - thanks to a suitcase full of tablets. There is no offer of aqua aerobics here at present, only in the winter (I live in Italy) and in the winter I couldn't have got there, never mind get in and out of the pool! But you will get there.
We have come across people before who cannot reduce at the rate most doctors tell them to do and are classified as "not PMR" or "resistant to pred" - but can manage when they go very slowly. If you want more info about my slow slow slow version I'll try and write it more clearly if what I've said is confusing. Any reduction should NEVER be more than 10% of your current dose - so in practice that means in 1mg steps after a daily dose of 15mg. Slowly this is also occurring to the rheumatologists as being an idea. Unfortunately, most GPs expect to be able to tell their PMR patients to reduce at the rate other patients on pred do. It's a different ballpark here.
Good luck at the chest clinic - since when was heart a "chest clinic" problem? By the way, where are you based and (approx) how old are you? Helps us help you :-)
Eileen
Thank you Eileen. I did understand what you do in reducing your prednisone. At the moment, I'm on 14mg. The way my doctor suggests is to come down 1mg at a time. So - 14mg for another week. Then 13mg. Stay on that dose for 2 weeks, then 12 mg etc.
I'm 59 and live in New Zealand.
I didn't end up doing the tread-mill test yesterday. About 30 minutes before I was to leave home, the hospital phoned to say they had decided to cancel my appointment. As I did that test in October/November and my heart was normal, they said it wouldn't have changed. Going on the tread-mill would only create pain, and what were they going to do with that information when my heart was normal. Pretty poor being given such short notice of cancellation. They are going to write to my GP to say what has been decided. She won't be happy at all. I'm back to square one again. When I go for a walk and it doesn't have to be far, I get severe pain right across my chest and down my left arm. I also feel very nauseated. A couple of weeks ago, it was so hard I didn't wish to vomit on someone's front lawn. That would have been so embarrassing. I'm actually quite a mess at the moment.
1mg at a time every 2 weeks could be a bit fast if you are sensitive (lots of people aren't) which is why we suggest every other day old/new at least a week before going to every day new dose. However - if it works, that's fine.
One big research group in the UK keeps their patients at 10mg for a year before continuing a reduction and that r educes the relapse rate with flares to 1 in 5 instead of 3 out of 5. If you try to force the reduction it makes following reductions more difficult. I will give you the reference for the paper if your GP is interested.
So you can't develop the symptoms of a heart condition in 9 months eh? Did you have the problems when walking then? Pain radiating into the left arm needs clarifying. Have you been given a GTN puffer for angina? Does that help?
Eileen
Hi Eileen
That's what the hospital said. Yes, the pain is much worse on walking, even a short walk. I do have a GTN puffer and that does help, though it does give me a headache too. At the time, last year, I had been admitted to hospital. I also had an echo and an angiogramme done and all was fine. When the appointment was cancelled, I explained what was going and that the pain was the same as last year. Nothing has changed. Just wish we could get to the bottom of it. The same with the cough I have had since February. It all has made me extremely tired and not feeling much like doing anything.
This site is so good to have someone I can talk to about these things.
I didn't say, I also have asthma, so as my doctor says - a lot going on in my body
The cough you have is fairly likely to be associated with the PMR. Many patients have a sort of halfway house between PMR and GCA as it is normally recognised. The scary and dangerous presentation of GCA is as temporal arteritis - which affect the artery supplying the optic nerve. It is very common to have inflammation of the arteries in the chest and neck without the obvious visual effects.
IF that is the case, what will provide the answer is imaging using a contrast substance with a specific form of CT or MRI (sorry off the top of my head I can't remember which and I'm very short of time today - off on holiday later) which will show up the inflammation. I would think that COULD also cause the other symptoms - but a specialist should know about that.
Eileen
Thank you so much for that. No one has told me that. What is GCA? I will be seeing my doctor in another week or two, so will mention the problems to her again.
Have a great holiday.
I was diagnosed last year and i only just joined this forhm and hoping to find out about this condition, Does PMR lead to Thyrodism or is yours not connected. Hope you get some advice
Hi,
I also have type 2 diabetes but it is totally controlled by diet alone. I eat low carb - have you tried that? It has worked wonders for me. I used to eat a high carb diet and I never exercised. Now I walk every day for up to an hour with my dog and feel much better by restricting carbs. It might be worth your while investigating that - also try Dr Bernsteins books on diabetes, they are excellent.
PMR doesn't lead to thyroid problems but both are autoimmune disorders and if you have one autoimmune problem you are more likely than other people to develop another.
I have lost much of the weight I put on with pred by going low carb - not that I ate much anyway. Several people have found that low carb helps with the pred-associated weight gain. And you are right - I feel far better!
My favourite blog in that context is by a doctor, Steve Walker, and is called Diabetic Mediterranean Diet Blog. Cheaper than books and I find it's a good read. I'd give you the link but the post would disappear and the link might not appear in the end after they've checked it. Google is a wonderful aid ;-)