getting desperate : I was diagnosed with PMR two... - PMRGCAuk

PMRGCAuk

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getting desperate

834527 profile image
29 Replies

I was diagnosed with PMR two months ago and advised to take 20mg. This dose increased my BP and doc reduced to 5mg.

I had a really bad day last week and doctor prescribed a further 2.5mg Pred which on the second day raised my BP and I was unable to sleep.

I feel that unless I increase the Pred I am not going to feel any relief. I am due a doctors appointment next week but would appreciate your views

Thank you

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834527 profile image
834527
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29 Replies
Koalajane profile image
Koalajane

Are you on any medication for high blood pressure?

I am and my blood pressure is now absolutely fine.

SnazzyD profile image
SnazzyD

Hello, did the doctor say why they didn't treat the high blood pressure but lowered the Pred instead? You need to be on Pred because the inflammation caused by your autoimmune activity needs a powerful anti-inflammatory until it subsides over a few years. Pain killers don’t really work for this reason.

You started Pred only two months ago and to be on 5mg already one would expect PMR symptoms to resurface. When you say you can’t sleep and had a bad day, what symptoms were you getting?

piglette profile image
piglette

I too think if you don’t increase you won’t get any relief. Your doctor is not doing you any service by reducing the amount like that. Why do so few doctors know anything about drugs?

834527 profile image
834527 in reply to piglette

I wonder if doctors have the correct approach regarding PMR thank you for the advise

piglette profile image
piglette in reply to 834527

I do think doctors should have more training on both drugs and nutrition and stop using tick off lists for things such as PMR.

PMRpro profile image
PMRproAmbassador

Your GP needs to get himself in gear - if pred raises BP you don't reduce the pred to a useless dose, you medicate the BP. There is a way to manage PMR and it isn't like that.

You need an adequate dose to manage the inflammation and then you taper to identify the lowest effective dose - which is likely to be higher in the early stages than later. If you aren't on enough, then you might as well be on none because the inflammation just builds up again.

Unfortunately in the early stages you have to learn to cope with the adverse effects of pred and medicate them if necessary since there is no other option for management of PMR symptoms.

834527 profile image
834527 in reply to PMRpro

Thank you for the reply I do need to speak to my doctor and raise my medication for BP

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

Not surprised you’re having bad days- you can’t sudden drop from 20mg to 5mg without a reaction -and GP should know that…

Maybe a look at this - so at least you have a better understanding of what’s going on, even if your GP doesn’t-

healthunlocked.com/pmrgcauk...

As stated you need the Pred at the right dose to control your PMR -side effects can be controlled and most reduce significantly as you reduce the Pred

834527 profile image
834527 in reply to DorsetLady

Thank you so much for this information I will certainly speak to my doctor about increasing my BP medication to enable me to take the prednisone unless there are alternative steroids?

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to 834527

No -steroids are steroids.

You may get offered other drugs added in to help you reduce steroids more quickly -but they are a bit hit and miss, and aren’t the “go to” meds for PMR.

SheffieldJane profile image
SheffieldJane

Raised blood pressure is a common side effect of Pred. Mine has normalised with 2 blood pressure meds.

834527 profile image
834527 in reply to SheffieldJane

Many thanks all very helpful

Merryfield profile image
Merryfield in reply to SheffieldJane

I agree with Sheffield. I was on BP meds and steroids caused BP to jump so he doubled the dose. Lost some weight which lowered BP and I have cut the beta blocker in half. Still on BP med with diarrhetic though.

834527 profile image
834527 in reply to Merryfield

My appointment with doctor next week I don’t like to increase BP medication without her approval. Thank you for replying

Merryfield profile image
Merryfield in reply to 834527

Not only would you need her approval, she would need to prescribe the higher dose My doc put me on/prescribed the higher dose because the steroids had caused my bp to go too high and he needed to bring it down. Once I lost weight, he said I could go back to an almost normal dose Without the meds, my bp would be out of control . I have the genetic factor for high bp as well as the steroid factor.

Missus835 profile image
Missus835 in reply to SheffieldJane

Halloo SJ. I've been put on a BP med. On it for approximately 2 weeks now, but BP is still in the caution range (yellow), so the 140/90s, on my home monitor. Are you on just the one pill? Thanks ~Deb

SheffieldJane profile image
SheffieldJane in reply to Missus835

Initially I was given the Beta blocker Atenolol. My readings were around 153 over Doxozosin was tried, I take it at bedtime and pretend it’s relaxing along with Atenolol ( which is apparently old fashioned) .Nobody gets excited about my readings now I am safely on the meds. They are not really a lot lower. 140/90 would be a satisfactory reading for me. This was all fairly soon after diagnosis, when everything was a further blow. I have hopes that it will come down as the Pred decreases.

PMRnewbie2017 profile image
PMRnewbie2017 in reply to SheffieldJane

Jane, I'm a bit confused. Metformin is mainly prescribed for Type 2 diabetes, though it can be used for Polycystic Ovarian Syndrome. Were you never prescribed an ACE inhibitor or ARB? No thiazide diuretics I guess as you are having raised blood sugar issues if I remember correctly? Are you taking an alpha blocker (Doxazosin) and a beta blocker (Atenolol) to treat your high blood pressure? This would be very very unusual especially if it's first line. This combo is normally used in males with prostate enlargement who are also hypertensive.

PMRpro profile image
PMRproAmbassador in reply to PMRnewbie2017

I wondered that - metoprolol maybe? Though apparently metformin is sometimes used for hypertension to modify it through weight loss.

PMRnewbie2017 profile image
PMRnewbie2017 in reply to PMRpro

But Jane says she's on Atenolol. You wouldn't use 2 Beta blockers and we know J was having issues with her diabetic nurse and the SGLT 2 inhibitor they wanted to use.

PMRpro profile image
PMRproAmbassador in reply to PMRnewbie2017

Yeah - but I assumed it was a trial, one thing after another sort of thing. 'tis confusing ...

SheffieldJane profile image
SheffieldJane in reply to PMRnewbie2017

My mistake, it was 8 years ago and I can’t remember the name of the BP med. that was tried. Yes of course Metaformin was for borderline Type 2 Diabetes.

I have queried the Atenolol, the practice pharmacist couldn’t answer my questions. I don’t know why I have been left on it. I go to Australia for 6 weeks in early December and will sort out the questions when I return. Thank you for your input.

Bcol profile image
Bcol

Nothing medical to add to the previous posts. Your doctor needs to get his head into gear regarding the treatment of PMR and BP.

Munny22 profile image
Munny22

My blood pressure also went up when I started prednisolone and it remained high for a while, higher than I would like should I say. I don’t usually suffer with high blood pressure, but now that I have reduced the Prednisolone to quite a low dose, it’s becoming normal again, but that is after nearly 2 years. I was offered blood pressure medication after around a year or so, but declined it, only because I knew the prednisolone was the cause and I didn’t want to be on more medication than I needed to be on. I agree with the other replies that your steroid medication has been reduced too quickly.

Maybe your GP should be speaking to, or referring you to your consultant for advice.

PMRpro profile image
PMRproAmbassador in reply to Munny22

It doesn't matter WHY your BP is high, you need medication to bring it down to a level that isn't damaging your body. Long term raised BP can lead to other problems such as heart disease, heart failure and stroke,

Missus835 profile image
Missus835

Perhaps the doc should be treating the high blood pressure? Are you on low salt/low sodium with your food? I'm on a BP pill and it is lower than it was. Not the best yet. That dose of Pred will not reduce the inflammation and pain you're experiencing. Keep in mind that Pred does not cure PMR, it handles the inflammation and symptoms. Your reduction is too soon and too much. Pain itself can increase your BP. I was on 20 mg. for 4 months, prior to starting a reduction. Stick with our forum because many GPs and some Rheumatologists are not up-to-snuff on PMR. If I did not have this wonderful group, I would have been lost.🌹

PMR_sufferer1 profile image
PMR_sufferer1

Your story is a little confusing. 15 mg is the normal start point for pred which in most cases quickly reduces pain and lack of sleep so within 24 hrs.It's like a miracle

I am no expert on Pred and blood pressure but the stress of having PMR or any other pain and mobility problem causing lack of sleep can increase your BP.

I suggest you get pain free with pred first then try to relax or If the pred isn't working then maybe you need to challenge the diagnosis with your doctor as you may benefit from other treatment

Good luck

PMRnewbie2017 profile image
PMRnewbie2017

As you are so new to all of this, can I add that you should have a look at all the information we have on site regarding cutting carbs in order to avoid weight gain and development of Type 2 diabetes.

Merryfield profile image
Merryfield

I agree w Pro. High BP for any reason puts you at risk for stroke, enlarged heart and other issues. Get the BP meds and reduce them when appropriate.

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