My current dose of Pred is 2.5mg, taken between 9 and 10am each morning. (I wrote previously about feeling dizzy when I tried to reduce to 2mg.)
I’ve had the bicep pain since reducing below 5mg, if my memory is correct, and the pain (alway the right side - left is ok) sort of indicates adrenal insufficiency to me. I can control the pain with Paracetamol and sleep, and when I awake in the morning ( usually 8am ish) the bicep pain has gone. Another indicator to me that the adrenals are functional, but not 100%.
I spoke with a locum Dr yesterday, she told me to stick at 2.5mg, especially when I informed her that we’re moving in 2 weeks time due to house move (stressful).
The surprising thing coming from her, she said “I don’t think you’ll ever get off steroids, and even 1mg may be insufficient and you could end up with a flare”. Wow! She wouldn’t authorise a basal cortisol test, but did agree to CRP & ESR, plus full blood count.
When I get established in our new home and surgery I may ask for re-referral to Rheumatology.
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Why? If you have got to 2.5mg there is nothing a rheumy can offer. And to be honest, given the state of the NHS I wouldn't be surprised if they triaged your referral and decided it was unnecessary since you have got to a very low dose on your own.
The locum is being a bit pessimistic - you may well get off pred, it is a balance of adrenal function and PMR activity and patience. The limiting factor can't be identified really and I don't know that the absence of bicep pain in the morning is any indicator of adrenal function. Cortisol does have an antiinflammatory effect but in a more complex way than pred.
To be fair the locum, referred to earlier, planted the re-referral seed in my head. I think she said the need to examine my arm, then possible referral. She phoned me back 2hrs later before clocking off reminding me to be vigilant about GCA symptoms. Just what I needed to ensure a good night’s sleep. Then coincidentally there was a post on GCA this morning. Of course it’s one of those things NOT to be brushed under the carpet.
Agree with PMRpro - never come across bicep pain as a/i before.. was it one of your original symptoms pre diagnosis? If so, it may be showing loo low a level of Pred...if not, maybe too need to look at it being something else completely random but which has been masked by Pred at higher doses.
Certainly no reduction before move, and as for never getting off steroids, not sure anyone can tell you that ....either way.
The onset of PMR in December 2019 was excruciating pain in both biceps that no amount of pain killer or anti inflammatory would touch. I couldn’t sleep in bed because of the throbbing and being a side-sleeper, and the only way to attempt sleep was in a chair. I put up with this for a week not knowing what the problem was, until my wife recommended making a Dr’s appointment.
I get your point that the higher dose (5mg) may have been masking something, now revealing at the lower dose. Glad we still have GPs so I can ask them.
Sympathise with you, had similar early days ... just be aware that one sided may be the pre-cursor to both playing up. (and as you say stressful times)... but sure you will monitor and take appropriate action.
Good luck with move, and keep extra Pred at hand in case required...
Thank you kindly. 😊 I alway have extra Pred with me, even if going out for the day. I’ve experienced cytokine storms twice since having the underlying a/i disease and it can make you seriously i’ll (hospitalised once).
I am on 2.5/2 Prednisolone and my GP has referred me 3 times. Keeps asking if I have heard from Rheumatologist. Why would I . I am on such a low dose, hopefully on the way to zero. What she can’t get her head round is, it’s not a rush to zero and flares will happen. 4.5 years since diagnosed
I have steroid induced adrenal insufficiency and I have never heard of bicep pain being a symptom. Extreme fatigue is a normal symptoms of AI and headache, nausea and vomiting are symptoms of an an adrenal crisis.
my initial symptoms were in both upper arms, causing excruciating pain and unable to sleep in bed as normal. I’m repeating myself here so I apologise, the only way I could get a bit of sleep was in a chair. Did this for about a week before my wife encouraged me to see the GP.
I have just moved house. I'm on 2.5 mg pred at the moment. My rheumatologist wrote a letter for me to pass on to my next GP saying that I must be referred to the care of a rheumatologist. He did not say why, but I am grateful that care will continue.
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