Advice needed

[York54]

Hello everyone, I've been following this forum for a couple of years but don't often post. Here is my scenario, diagnosed with PMR in May/June 2016. Put on 10 mg of Pred and fairly instant relief. Had a slow taper , arrived at 6 mg in January 2017 but had a flare so back to 10 mg. It has taken a whole year to get to 5 mg. waited till after Xmas to attempt 4.5 mg. Symptons returned within a week, first extreme fatigue, sweating, headache on waking. Returned to 7 mg but now feel like a full on flare. Arms, and especially hands are so painful. Do I return to 10 mg? During all this a letter arrived from my rheumy saying my last blood test for my cortisol level was 269 (??) and borderline (???)) and I should remain at 5 mg Pred. He wanted me to have another test which I duly did on 26 th of January. Of. Course since then I have slowly gone downhill!! Rang his secretary yesterday, requesting a call back to see what they suggest. I'm in real discomfort today, struggling to use my arms and hands. I think I will just try 10 mg, what do you think? Added into this scenario , I returned to Simvastatin in December, I read that this can cause muscle pain , so saw GP on Tuesday , he has changed me to Prevastatin. Don't know if this will help but willing to try. My right hand/ arm has become very weak over last 6 months , so he has referred me for a nerve impingement test!!

Oh dear , things were going so well until the first week of the new year!! Back to the drawing board! Any suggestions , gratefully received!! 😃😃😃

[DorsetLady PMRGCAuk volunteer]

Hi,

Sorry to hear you’re in a bad way at moment.

I would try 10mg, hopefully that will help until the Rheumy nurse gets back to you, and then you can discuss more fully with her.

When I first started statins many moons ago (long time before GCA) I had problems with leg muscles on Simvastatin & Prevastatin (so did my brother) and we both ended up on Rosuvastatin - no problems (but apparently dearer, which is why it’s not first on the list to be prescribed!)

Hope things soon improve.

[York54 in reply to DorsetLady]

Thanks DL for responding. I was hoping that the Prevastatin had the least side effects. I had left off them completely but my Cholestrol and blood sugar has been slowly climbing whilst on Pred.

This blinking illness bites you on the but after lulling you into a false sense of security!! Lol 😉😉😉😉😉

[DorsetLady PMRGCAuk volunteer in reply to York54]

Yep it surely does !

[Soraya_PMR in reply to York54]

Have you heard of Olive Leaf Extract? Not tried it myself, but might help your cholesterol and blood sugars without the statin side effects? (Would need discussion with GP I think). I guess it’s a bit like the Mediterranean diet.

examine.com/supplements/oli...

[York54 in reply to Soraya_PMR]

Thankyou for the suggestion, not heard about olive leaf extract before.

[PMRpro Ambassador]

That's your total cholesterol - what is your HDL? I refuse to take statins after a really bad PMR-related reaction and the rheumatologist here suggested trying omega-3 supplements - so I am (when I remember).

I would go back to 10mg for a few days, up to a week and then drop back to 6mg and see if that holds it. But don't try to go below 5mg again and if you reduce the dose and there is a return of niggles, don't wait until a flare happens. Nip it in the bud.

[York54]

I've no idea what my HDL is , the nurse/GP just says it's back up to. 6.3!

Consultant rang yesterday. Up my steroids to 10 mg, he will ring again on Monday to see how my pain is. If no better he may suggest 15 mg but they will want me to go in for blood test. Feeling slightly better after 2 days on 10 mg, fingers crossed .

[Grammajoy]

I am in similar situation. I follow every day but haven't posted in awhile. I have bounced between rheumatologist, primary care, opthomologist, since symptoms began Feb. 2017. No absolute dx among possibilities: PMR, GCA, RA. Up and down on prednisone for a year. Have had extreme vision/blurred/double vision problems plus very stiff legs, stiff hands, back, etc. for a year. Prednisone makes no difference. Lab marker 11/17 normal. Rheumatologist ordered 40 mg. prednisone with 2.5 step down each week. She wants to start methotrexate but I hesitate because I have COPD. Will discuss with pulmonologist this week. I was on Duloxitine 30 mg when all this began and am now 3 weeks without any. Rheumatologist thinks all symptoms caused by prednisone. Am reading Kate Gilbert's book and working on inflammatory diet and light exercise. Very discouraged as being couch potato is difficult for me, a typical chocolate loving Aeries. Thanks to all for listening and caring.