Some Advice Please......

[anniekins1]

I was diagnosed with PMR in 2012 and placed on 15mg prednisolone daily. Over time the reduction of medication went fairly well but I reached 5mg daily I found the tiredness becoming increasingly more pronounced. I reached 3mg when I had an appointment with my Rheumatologist who referred me to an Endocrinologist to check my adrenal function. This found my baseline reading was 99 and rose to 160 after the medication was administered. I was then placed on Hydrocortisone instead of Prednisolone and I am gradually reducing my daily dose as advised by the consultant and I am currently taking 7.5mg daily.

On Easter Saturday I noticed my calves were both swollen and very hard, I found it difficult to bend my legs to the usual extent. On Easter Sunday however I woke feeling very unwell,I had a red burning rash on both lower legs, I had a temperature along with a very bad headache which I never really suffer from. I felt so unwell I went to the out of hours clinic at the local hospital. The doctor confirmed I was running a temperature 38.5 and gave me some antibiotics and said to see my G.P in the next few days for a blood test. I had the bloods done the following Friday and the results were as follows: CRP 6.6 and ESR 50, these were checked a week later and the results then were: CRP 2.8 and ESR 26. The receptionist said the message from the doctor was to repeat them in six weeks time.

I was wondering if this is a common occurrence and if the rash and temperature are likely to be linked to PMR?

Thank you in advance for you help and advice.

[Hidden]

Hi anniekins1

I can't offer much advice. Glad you went to the hospital etc. I will say that my thighs in both legs get really hot and a bit red sometimes and that is my sign that I need more pred. I think they get harder but I I presumes it was them responding to inflammation.i don't know if that helps at all. I am sure others will be along with help and advice soon.

[SheffieldJane]

What an alarming experience anniekins1. You seem to have been cast adrift without much explanation for your treatment protocol. I would want to know whether it was believed that I had steroid induced Adrenal deficiency. I would also want to know why I was moved from a drug I got along with to one that I didn’t. Pred is used to support inefficient Adrenal Glands too. I would want to know what the Endo envisaged for me long term. If what you are experiencing is a side effect then distant telephone advice is not acceptable. You need a face to face appointment with the Endocrinologist to discuss your medical situation.

[Nap1 in reply to SheffieldJane]

Wow Sheffieldjaneyou took the words right out of my mouth. I agree. Most likely it is an adrenal problem caused by steroids, but why change the meds. I need to post my results when I have time.

[PMRpro Ambassador in reply to Nap1]

HC is the usual steroid used for adrenal insufficiency and given 2x daily usually, morning and afternoon, which is more like the natural production of cortisol.

However - HC doesn't agree with some people and they prefer staying on pred. It doesn't always work as well for the PMR problem.

[Nap1 in reply to PMRpro]

Well I’m going to see one more endocrinologist in New York City when I get home. I too thought the HCwould be better for me. If it agrees. Just for the record I stopped my Actemra four weeks ago after a month of every other week, that worked well. At every other week my blood markers remained the same but now my CRP and ESR went up a bit. I’ll check it again next week because I am feeling lousy and since I know it’s not the adrenals because I am on 9.5 mg of prednisone it might be inflammation. It’s time I looked into an anti-inflammatory diet. I was concentrating on a low carb diet because of the pre-diabetes, now it’s time to look into anti-inflammatory as well. Any thoughts? Thank you. Marilyn

[Nap1 in reply to PMRpro]

Thank you Pro

[Klah]

I have had PMR For 4-1/2years, took prednisone only for most of that time and managed...although that time was not without weird episodes of a rash, extreme fatigue, etc. I started on Actemra 10 months ago to help me reduce the prednisone from 8m to 2m. I still can flare if I do too much...and I do a lot! I am not a doctor, but I have two comments to make....

I regularly get SynviscOne shots in my knees and that makes them feel great. Last summer the doctor added a little extra cortisone to the mix and I “got a period”!!!!...@70 yrs. old. Needless to say, I had to do the whole bit...pap, endoscope, etc....it was all good. No more cortisone for me! I would not be surprised if the hydrocortisone caused leg issues. Sometimes you have to “make the connection” on your own. Trust your instincts.

Secondly, prednisone is the treatment of choice, like it or not, for the pain and suffering of PMR. The PMR will burn out when it is ready to burn out....you can only treat it until that time. Regardless of how low you get on the prednisone, most people must still taper...maybe even more slowly as you get below 5. There are no shortcuts for most of us. PMR can last 2 yrs. or 10+ years...no point in fretting that...just let the prednisone give you relief if it works for you😊 Hope you can feel better soon.

[anniekins1]

Thank you for all your advice. I guess the PMR journey is full of ups and downs!