Dosage: I was diagnosed with PMR early March 202... - PMRGCAuk

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Dosage

Tinasleepyhead profile image
18 Replies

I was diagnosed with PMR early March 2020, after six months of pain three different diagnoses by three doctors. Posture - I did the exercises given to me for six months. Anxiety - I was told to go home and rest. I struggled getting out of bed, had pain in neck, back, shoulders, thighs. Couldn’t open my mouth very wide, difficult to eat too painful. Ate yogurt, scrambled eggs.

Saw another doctor who sent me for blood tests received a call the next day with diagnosis of PMR, 15mg Prednisone. Couldn’t believe the following day after one dosage such a dramatic improvement in my symptoms. Within three weeks I was feeling 95% better.

I have continued the guidance and am down to 3mg. Five weeks ago I started suffering with Sciatica, this is very much better now but I think masked the fact that the PMR had returned in a small way. I have slight pain in my legs and now shoulder. I hadn’t had a blood test since August, so messaged our surgery and got relevant paperwork for blood test. Had the blood test on Tuesday and looking at my test result on line it says Abnormal. I’ve received a message from the surgery that I have a telephone appointment on 8th December, I’m guessing they will tell me to increase my daily dosage

I’m thinking I’d like to increase it right now, perhaps to 5mg.

I would be interested in anyone else’s thoughts.

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Tinasleepyhead
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18 Replies
DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

Probably a good idea to increase now rather than wait another 2 weeks. By then, things might have got a lot worse,

Have to say you have reduced very quickly - so lucky to have had no issues previously.

Tinasleepyhead profile image
Tinasleepyhead in reply to DorsetLady

Thank you, what a great site this is, during these months I hadn’t spoken to anyone with PMR during these months and then yesterday I found this site, invaluable.

SnazzyD profile image
SnazzyD

Hello. Sadly your story of a protracted diagnosis is a familiar tale. To have got to 3mg in 7/8 months is quite good going. At what dose were you last comfortable?

Just a thought on the sciatica symptoms. There is a muscle related problem that some here seem to get with PMR is piriformis syndrome, thought it isn’t exclusive to PMR. This muscle in the buttock becomes upset and aggravates the sciatic nerve. PMRPro might say something about this.

webmd.com/pain-management/g...

Tinasleepyhead profile image
Tinasleepyhead in reply to SnazzyD

Thank you so much for your response. it was whilst I was on 4 mg I noticed symptoms, so am thinking 5mg, I was doing fine. I will take a look at the sciatica information that you mentioned.

Very many thanks

123mossie profile image
123mossie

How annoying, that’s just happened to me too, ‘abnormal’ results but no one can speak to you. Luckily I only had to wait 4 days. I think 8th December is absolutely unacceptable, sounds like inflammation ramping up again & you could be in a lot of pain by then. I stopped tapering straightaway & now feeling better. I’d act now, go back to 5 & ask for an urgent phone appt on Monday. Hope you feel better soon.

Tinasleepyhead profile image
Tinasleepyhead

Thank you so much I can’t tell you how much better it makes me feel getting information from others with PMR.

Really appreciate your post, thank you.

PMRpro profile image
PMRproAmbassador

I wouldn't wait 2 weeks! It can get away from you in that time. Hopefully 5mg will work straight off.

I agree with Snazzy - piriformis as a specific part of myofascial pain syndrome, Look for piriformis stretches

spine-health.com/conditions...

is a good site usually.

Tinasleepyhead profile image
Tinasleepyhead in reply to PMRpro

Thank you so much I will follow your advice.

Keep safe and well.

piglette profile image
piglette

I am in the same boat, I have some items which are Abnormal. I have not got a GP telephone appointment until 9 December though.

Suffererc profile image
Suffererc in reply to piglette

Why such a long wait to see a GP. What are they doing that makes them ask patients to wait a month. Our surgery is very good. We can have telephone consults or f2f with very little delay. Abnormal blood results and they ring me

piglette profile image
piglette in reply to Suffererc

I was told it was because my appointment was not an urgent one, as the GP had said on my blood tests notes contact me - non urgent!

Tinasleepyhead profile image
Tinasleepyhead

Gosh that’s a coincidence, sorry you have to wait so long though. Keep safe.

Daffodilia profile image
Daffodilia

May be increase now?

Tinasleepyhead profile image
Tinasleepyhead

Thank you that’s what I’m going to do from today.👍

Loyd profile image
Loyd

Definitely increase and rest for a few days. Don’t loose all the good you have done by getting a big flair- hope all well.

Tinasleepyhead profile image
Tinasleepyhead

It’s so valuable to get your response, haven’t been able to talk about the PMR, mainly because of all the calls on NHS with the virus. Just to know there are others like myself makes a difference. Thanks so much took 5mg this morning and will look after myself. Keep safe and well.

Noosat profile image
Noosat

You seemed to have reduced very fast. It took me almost 2 years to get to 2.5, which for some is speedy. I have been on that for at least a month and as I have surgery coming up in December plan to stay there as long as needed and hope not to have to increase dosage.

Tinasleepyhead profile image
Tinasleepyhead

Wishing you well with your forthcoming surgery. I reduced as my Dr told me by 1mg each month from May, with no symptoms returning until I was down to 4 mg, then just slight symptoms. Still quite slight but enough for me to want to get on the right track.Keep safe

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