Adrenal deficiency, muscle or joint pain

[Pirnilla]

I am reading a lot about adrenal problems as I am down at 3,75 mg and have some issues with my body such as pain in my left hip and lower back on the right side. Feels like impingement or artheritis pain I guess. It comes and goes.

My tapering is, apart from that, successful. Coming down to 3,75 now without bigger problems than a couple of days with some fatigue which I can handle.

I’ve read about adrenal deficiency that one of the symtoms is pain in muscles and joints. How the heck should I know for certain what my pain consists of. Here in Sweden it’s quite rare to have the Synacthentest done so I have no Idea about my levels.

I guess it’s not easy to know what’s what here. Maybe this is ”only” my adrenals troubeling my body and this will go away when or if they kick in....

I can understand those who can’t judge whether their pain is PMR, tapering pain or something completely different and increase their dose for the wrong reasons....

Tricky!

[jinasc]

However rare...............push for it.

[Hidden]

It is a difficult one. I would push for a test too. The link below sets out the symptoms related to secondary adrenal effeciency. But after that it says

"tapering off the steroids may cause a relapse of the disease that had been treated, causing a combination of disease symptoms overlapping with adrenal insufficiency symptoms. That is why it is very common for steroid tapers to be aborted, with a temporary return to therapeutic doses of glucocorticoids, followed by a slow attempt at tapering if the primary disease is in remission."

nadf.us/adrenal-diseases/se...

[SuziCutie in reply to Hidden]

Very helpful site. Thank you 😊

[SheffieldJane]

I would certainly want an XRay to find out what is causing the hip and lower back pain. I am much more aware of arthritic pain now I am on 4 mgs of Pred. Synacthen Tests must be possible - it can be a life and death issue. My Adrenals were found to be producing too low levels of cortisol and I was given an emergency syringe and ampules of Hydrocortisone. They are working normally now thankfully without any drama. I have significant deterioration in my lower spine according to my XRay. But the Adrenals are situated there too and I wondered if it was them. It is a symptom of insufficient Cortisol. I will have my 3rd Synacthen Test when I am at 3 mgs.

[powerwalk in reply to SheffieldJane]

Are you feeling an better now on the 4mg, I know you weren't feeling that great for a while there.

[SheffieldJane in reply to powerwalk]

My mood has lifted which just helps everything. I was really wobbled by conflicting advice from Endocrinologist and Rheumatologist . My Adrenal function improved on its own, so I continue to taper,slowly as I wished ( no swop to Hydrocortisone, which would have set me back). No Methotrexate either. (Yay!)

Sorry if I was a moaner. We can’t help it sometimes, can we? 😉

[powerwalk in reply to SheffieldJane]

Oh no you weren't a moaner at all!!!! I know we have similar timelines so would be interested as to how you are going. No, no you were not moaning. X

[SheffieldJane in reply to powerwalk]

You should hear me at home. Some things are better and other things are surprisingly challenging. PM anytime as we are twins on the journey. X

[markranson]

I developed the symptoms of PMR around August/September 2015 and had it diagnosed (in Hong Kong) in November 2015 and was placed on the usual Pred taper. In December 2016 I returned to the UK for several months and at the time the tapering seemed to be going OK. I reached 0mg Pred in February 2017 and almost immediately had a recurrence of the classic bilateral PMR symptoms. Moderate hikes resulted in that lactic burn sensation in my leg muscles and so on. I went to the local GP (in Leeds) and described my situation and asked if I could have blood test to check inflammation markers. A few days later, the receptionist called to cheerfully tell me the blood tests were negative. Bye bye, end of story and I still had PMR symptoms.

In late April 2017 I had to return to Hong Kong where Pred is available over the counter at pharmacies. I purchased myself a stash and went straight onto 5mg to see if it would help my symptoms. It didn't and so I went up to 10mg, which helped and since then I continued with the normal tapering regime. At the time I returned to HK, both knees were painful but after being back on Pred for a while they improved. Well over two years lated I am alternating day by day 5mg/4mg/5mg/4mg etc.

However, and I hope this is relevant to Pirnilla's questions/observations, in March this year (2019) I developed a very painful left shoulder. Painful to the point I could not sleep on that side. I was on around 6mg of Pred at that time. After a while of sleeping on my right side, my right shoulder and arm also started to hurt but nowhere near as much as the other one. Anyway, I continued with the taper and even used the occasional NSAID (Diclofenac), which helped a lot, though I'm aware I'm not supposed to use them with Pred. In about June, the pain in the left shoulder began to reduce and is now much better, though still uncomfortable to sleep on.

I should mention that when the left shoulder became very painful I did a few days on 10mg of Pred but it had no effect, which led me to believe that the pain was caused by something else; perhaps it was/is related to the adrenal function waking up.

Anyway, as I say, I'm close to being on 4mg now and I have to say that my left knee started to hurt again but as I write these words, it feels OK. Tomorrow something else might start to hurt and I also now have the sort of age-related aches and pains that I had before I developed PMR. So basically, I would say that my adrenals are trying to get back to work and, in doing so, they've caused me joint and muscle pains.

[Hidden in reply to markranson]

Mark

Your Reply would be better as a Post of your own as you may get more answers.

Just Copy & Paste.

MrsN

[markranson in reply to Hidden]

Many thanks, MrsNails. I wasn't really looking for answers on this occasion; I was mainly trying to demonstrate to Pirnilla that aches and pains seem to pop up fairly randomly when the the adrenals start kicking back in. One thing that seems clear to me from this forum is that everyone's experience of PMR is different to greater or lesser degrees. When I saw Pirnilla's post heading (Adrenal deficiency, muscle or joint pain), that was a kind of answer for me.

[Hidden in reply to markranson]

Oh that’s fine Mark, you raised a lot of interesting points though.

I do feel that while we are on Pred it helps with some of our other aches n pain; hips, knees & back so as we get lower & lower they become more apparent, plus we’ve also aged several years or more.....

Glad you are doing OK & hope the shoulder(s) improve.

MrsN

[markranson in reply to Hidden]

Many thanks, and I think you're spot on.

[Hidden in reply to markranson]

And helpful in profile I edited form. It will save you typing it all again.

[Theziggy]

How do you get 3.75 mg Pred????

[Daffodilia in reply to Theziggy]

2.5 plus 1 mg tablet?

[Gaz227 in reply to Daffodilia]

That 3.5 , cutting tablets is the only way I know

[Pirnilla in reply to Theziggy]

In Sweden we basically have 2,5 , 5 and 10 mg tablets. We can get capsules with 1 mg, but they are expensive and not able to split. So now I am on 1 1/2 2.5mg tablet.

[Theziggy in reply to Pirnilla]

Good tablet splitters on eBay

[powerwalk]

It's very difficult to now what's what! As you say increasing the Pred as a way of improving things. It really is a minefield.

[Pirnilla in reply to powerwalk]

This pain has not improved at all with increasing Pred, I tried that in May.