I was diagnosed with PMR in December (5 weeks ago) by which time I was in agony with hips and shoulders . Started on 15mg pred. which settled things by about 80% . After 2 weeks, the pain and discomfort grew again and I managed to persuade the doctor to prescribe 20 mg daily . Ive now been on this dose for 3 weeks and I am in a holding pattern of maybe 90 % pain free and functioning relatively normally .
I am however noticing side effects which worry me . I think My blood pressure is elevated and pulse rate races quite a bit too. Also according to blood tests my calcium levels are low .
I have three questions if possible ? Any help would be appreciated !!
1. How soon can I reduce the dose from 20 and by how much each time ?
2. Have other sufferers experienced blood pressure changes ?
3. Can anyone recommend a supplement list to rally against the damage done by the steroid to natural vitamin and mineral levels in the body ?
Thank you in advance
Marek Pawlik
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Marek1
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Elevated BP is not unusual on higher doses of Pred, but should go back to normal and you reduce p, but do keep your eye on it. Many also notice an increase in pulse rate, again monitor, but don’t get paranoid.
Reductions - you are not reducing come what may, you are trying to find lowest dose that gives you control of your symptoms….
Generally would say 20-17.5-15mg about every 3-4weeks, but only after you are sure your current dose has things under control….and likewise at each taper. If in doubt, don’t reduce. You may be able to also take 2.5mg steps down to 10mg, but not everybody can.
You should have been prescribed a Calcium/VitaminD supplement- maybe Adcal-D3.
As for functioning as normal…just go careful, you have a serious systemic illness which needs managing, not as simple as take the meds and all okay…you need to learn to pace yourself - more details in info post below.
Have a look at FAQs for posts on supplements and a myriad of other advice - scroll down past the covid posts and you find lots of info-
Very helpful thank you !! Yes I may have appeared a bit gung ho . In truth I am having to cope with less output than usual and continuous pacing of myself .
I am sorry you have been diagnosed with PMR. It is important to realise that you have a life changing illness and PMR holds the upper hand so you need to take things easily. Rest, rest, rest. If you overdo things the PMR will bite back. You should be able to start reducing soon. Unfortunately steroids do have quite a lot of side effects, but on the plus side, they are a wonder drug.
Edited to point out that the extent of exercise mentioned in the link will not apply to you. You should moderate your exercise and not engage in anything that overexerts you. Walking is good but short walks to begin with and no heavy lifting. You are early on in your journey and it's really important to listen to your body.
I can’t really add much to what’s already been said but just wanted to welcome you to the forum. I was diagnosed last March (PMR) and June (GCA), didn’t find this site until around September and have found it invaluable. There’s almost always someone around if you have a question, or if you just want to vent a bit!
Re supplements, I take Vit C and B for general health, Vit D for bones and magnesium for bone and muscle health. Should probably take calcium too but find it hard to fit in as it shouldn’t be taken within two hours of a pred dose.
Just to add to the above, ask your GP to order a Dexascan. It enables you to keep track of your bone density which sometimes(not always) may be affected by pred medication.
Hi Marek1, I was diagnosed in September, and then GCA two weeks later. The pred made my pulse race too, and my blood pressure went sky high. This was on my initial dose of 15mg which was increased to 40mg once GCA was diagnosed. At times, especially around 4 - 5pm, I could feel my pulse thumping away in my head, neck and tummy. I also had palpitations, especially in the evening. I have been slowly tapering and I'm now down to 17.5mg and these symptoms have all gone away. I presume it's because my body has got used to the pred (at last) as the dose is still higher than the original 15mg. However I have started taking magnesium which I read helps with this, and switched my calcium to bedtime. It really helps me sleep - something which I have struggled with since the start of my PMR journey. Good luck!
Hi and welcome - it isn't just a case of taking enough pred to manage the symptoms. You have to do your bit too by adjusting activity levels and lifestyle - you have a new normal now. Do too much and PMR will bite back.
Yes that's top of the list of 'Things my doctor never told me'. I was given the impression 'just take the meds and carry on as normal and it will all burn itself out in 2 years'. I just wished I'd discovered this forum earlier, I only discovered you when I was still feeling really ill after 3 years and it hadn't miraculously gone away.
They really do believe it - you'd have thought they might have noticed their patients AREN'T back to normal wouldn't you! Then there's the "pred ALWAYS makes people feel better" ...
The one that really made me fume was 'Pred doesn't cause weight gain, it just increases your appetite so you eat more'. None of those were as bad though as the rheumie who said I couldn't possibly have PMR because I was too young (54 at that stage, 51 when dx)
Since pred increases the appetite - can it not be admitted that pred causes the resultant weight gain? If you weren't taking the pred - you wouldn't have increased appetite ...
The one about appetite was my GP, the one about age was CP. I was delighted to hear he's retired now. Re the weight gain, I was actually dieting and not losing weight - I didn't know about low-carb in those days
Hi Marek! Many of us are prescribed calcium supplements with Vitamin D. some people recommend taking more Vit D3 than is contained in those tablets, and also maybe Vitamin K2 which helps the calcium to end up in the right place, ie your bones. There is more about this in the Topics section
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