Prednisone Dosage: When I first encountered this... - PMRGCAuk

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Prednisone Dosage

Alfryd profile image
14 Replies

When I first encountered this support group I thought my goodness, there are lay people giving out medical advice and I thought that was so out of order. However after having PMR since Jan 2017 and reading all that I can on this list - I am amazed and impressed with the terrific advice that comes out of here. The discussions are so good as well as then you get several opinions and can make your own decisions! So a while ago I posted something and almost as an aside I mentioned that I was on 20mg of Pred and still had pains in my shoulders, neck etc. PMR Pro and Dorset Lady both picked up on that and mentioned that on 20 mgs I should be feeling ok and perhaps that was not a high enough dose. Since then some pain has left (such as my bicep pain and neck) to be replaced with what feels like a sciatica pain down my left leg (related to PMR?) and pain down my left forearm. Here is what I am wondering. Could I up my dose of Pred, say for one of two days to see if I feel better? How much would you say to increase? I don't want to discuss this with my doctor as I know he is planning on weaning me down next week. I have been on 20mg for at least 6 weeks straight (with a sometimes reduction in pain) after going down to 6mg and relapsing. I just wonder if I might feel better with a higher dose that I could try for a day or two - without getting hooked on it. If so, I would report this to my rheumie - if not I would remain silent, go back to the 20mg and let him take it from there. PS although my pen name is Alfryd (my dog's name) I am a 75 year old woman from Florida who woke up in January feeling 90, hospitalized for almost a week, dxed with PMR and pericarditis and who has gained 35 pounds making me now an old, FAT lady. Right before this illness I was in the Honor Guard of the local American Legion and in pretty good shape.

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14 Replies
PMRpro profile image
PMRproAmbassador

I have to say - I suspect that your pain at present is less PMR itself and more due to tight or even spasmed back muscles. Myofascial pain syndrome can cause the effects you describe by tight muscles trapping and irritating nearby nerves and causing referred pain and MPS is often found alongside PMR - it is due to the same inflammatory substances except in PMR they are systemic (throughout the body) and in MPS they are concentrated in trigger points which form in pairs on either side of the spine, in the shoulder muscles, about rib level and in the low back about where the baby's dimples are. The pain I had in my left forearm was also probably tendonitis - and that was PMR. It took several months at 15mg to resolve fully - patience!!! ;-)

However - I do think that a couple of days of a higher dose to see if it helps isn't a bad idea. You are fine for up to a week or more and can still drop back to the current 20mg if it doesn't help.

Marilyn1959 profile image
Marilyn1959 in reply to PMRpro

Picking up on your comment about Myofascial pain PMRpro, how would one know the difference? I have sharp spasms of pain which come and go just below shoulder blade that doesn't seem to respond to different pred levels (15mgs or 12.5mgs.) Could this be Myofascial syndrome? If so how is it diagnosed and is there any treatment for it?

Many thanks.

PMRpro profile image
PMRproAmbassador in reply to Marilyn1959

That's what mine feels like. A good physiotherapist should be able to identify spasmed muscles - so should a good doctor, my GP can, but she is rheumatology-trained and we are in Germanic Italy where they acknowledge muscle problems! Treatment varies - I've had massage and manual mobilisation of the tight muscles and fascia. I've also had steroid injections and a couple of other techniques. But they aren't standard practice in the UK. Bowen therapy also helped me a lot in the UK.

In the UK? Sports physio or massage therapist, Bowen therapy. There is something called intramuscular stimulation which is available in the southern half of the UK privately - a bit like acupuncture but not. But on the NHS you will be struggling - why I went to Bowen!

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

Hi,

Do love your comment "when I first encountered this support group" - makes us sound like a little-known, uncivilised bunch of nomads in deepest, darkest Africa being described by a Victorian explorer! 🤔 You could be right!

As PMRpro says, give it a go for a few days, you'll soon get your answer. As the saying goes, "nothing ventured, nothing gained"! And we'll keep it between ourselves!

Good luck.

PMRpro profile image
PMRproAmbassador in reply to DorsetLady

Aren't we?????

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to PMRpro

According to the medical profession - yes!

Present company et al excluded of course😉

Now where did I put my "all a witch doctor needs to know" manual?

Sandy1947 profile image
Sandy1947 in reply to DorsetLady

Very funny! People on this forum are just as much, if not more valuable than a doctor. Your accessibility, ideas and reassurance alleviate stress that helps recovery. I keep singing, "I get by with a little help from my friends".

I am grateful for all you do!

sondya profile image
sondya in reply to PMRpro

Ha ha~~!!!

Alfryd profile image
Alfryd in reply to DorsetLady

Yes, as I wandered further into the deep, dark jungle I spotted a light way in the distance. As I approached the light, which was a campfire, I heard chanting or conversation. Afraid to come out of the darkness, I took a giant leap of faith and showed myself to the group. One of the leaders approached me and stated: "Hey mate, you have a proper moonface, you do, welcome you have come to the right place.

SheffieldJane profile image
SheffieldJane in reply to Alfryd

That was poetry Alfryd. This group needs a poet.

Estellemac profile image
Estellemac in reply to Alfryd

Keep the humour going Alfryd it helps us all lighten up and feel better.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

Bet the chanting was - I hate Pred, I hate Pred!

jinasc profile image
jinasc

pmr-gca-northeast.org.uk.

'You are Not Alone' a newsletter with articles in from PMRpro, written in language we can all understand. These articles explain in depth frequently encountered problems, like Myofascial pain.

You can read browse and then if you want, block and copy or download the whole shebang.

From an elder tribe member...................who joined a gang and has had a very interesting and different like marching to a new drummer.................

Alfryd...............you might like to read this one...............before your visit to your 'hopefully friendly 'witch doctor..................Page 3 of the Summer 2017 issue..................

Alfryd profile image
Alfryd in reply to jinasc

Jinasc thank you so much for the resource. I will devour it. PMRPro has great Knowledge and a great manner of explaining to the unwashed masses.

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