Spike in PMR symtoms: Hi everyone, I was diagnosed... - PMRGCAuk

PMRGCAuk

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Spike in PMR symtoms

Buzybe profile image
6 Replies

Hi everyone,

I was diagnosed with PMR last year and have been reducing from 15mg of Prednisolone to 5mg which I am on today. However, last night I began to have aching neck, shoulders and the left side of my body. I felt like crying because I received a call yesterday to go for my vaccine next Friday. So instead of taking the 5mg today I took 6mg (and tomorrow I will try and speak to my GP, although I am not hopeful about being successful)

I was hoping that by June I would be off the steroids, and must add I am now type 2diabetic spiked y the steroid. Also taking medication for this and medication for high blood pressure.

I am 74 and have always been in good health.

Just looking for some guidance and hope about the PMR and vaccine .

Thank you all.

Buzbe

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Buzybe
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6 Replies
PMR2011 profile image
PMR2011

Oh dear, it sounds like you may have overshot the mark on tapering. You want the lowest dose that controls the symptoms not zero as this disease usually lasts longer than the 2 years that many physicians become attached to. Yes Pred has side effects: why gain, diabetes...these can be manageable. Eliminate all simple carbs, get regular gentle exercise, pay attention to bone health (consider a decaf scan). There are many pinned posts on here that will assist you with “managing” the effects of Pred.

In regards to the vaccine, if you can bump Pred back up to where your symptoms were controlled I shouldn’t think it would make a difference.

Buzybe profile image
Buzybe in reply to PMR2011

Thank you for your reply

PMRpro profile image
PMRproAmbassador

The pred makes no difference to having the vaccine - people on far higher doses are getting it so don;t worry about that. Go and get it,

I'm really sorry to have to disillusion you but your hope of being off pred by June is built on very shifting sands. PMR lasts as long as it wants and as long as the underlying autoimmune cause of the symptoms lasts you will need some pred. Half of patients take 18 months to get to 5mg, only 1 in 5 patients is off pred in a year and remain at a high risk of relapse, and even by two years only a third of patients is off pred. In the great scheme of things 5mg is a long way from suggesting the PMR has gone away - and it is already a low dose, called a physiological dose, similar to the amount of natural corticosteroid the body requires to function and produced in the form of cortisol. It isn't produced as long as you are on enough pred but now your body will start to have to make some again.

If you are struggling with weight and being diabetic - cut your carbs, especially processed ones and added sugar. You will find loads of posts about both on the forum if you look. Several people who did become pre-diabetic on pred reversed the situation by cutting carbs.

Buzybe profile image
Buzybe in reply to PMRpro

Thank you so much for your reply

SheffieldJane profile image
SheffieldJane

Don’t despair! We all get these set backs. Taking an extra 5 mgs for 10 days then returning straight to your original dose can sometimes knock the inflammation out. It is perfectly ok to go ahead with your vaccine.My steroid induced diabetes normalised as I reduced and followed a low carb, no sugar diet.

Buzybe profile image
Buzybe in reply to SheffieldJane

Thank you Jane

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