Has anyone had problems with scalp crawling sensations? I reduced from 15mg to 12.5 mg. No PMR symtoms, but mid afternoon I get the scalp sensations. I read it may be the result of anxiety from lower levels of steroid to the HPA axis in the brain. The sensations decreased when I took a tiny but of Prednisone. The symptoms seem to gradually lessen the longer I'm at the lower dose. My doctor's leaving me to taper as I wish and just check in by email. I have let her know about problems, but I don't think she knows that much about it. I was originally diagnosed by a Rheumatologist 4 years ago after having symptoms for 5 mos. By the time I saw him it was resolving on its own and I never needed steroids. I really have had to educate myself from sites like this because I have gotten very little info from my GP and the Rheumatologist is no longer available. I initially anticipated 1-2 mos and everything would be done. Big surprise! But I can see I've been very lucky when I've seen what many go through. Thank goodness for all the help from experts on living with this.
Scalp crawling sensations when lowering Prednison... - PMRGCAuk
15mg to 12.5mg although being a recognised taper can be too much for some people. Many find that a reduction of only 1mg at a time easier- and it may well stop the steroid withdrawal symptoms if that’s what you think your scalp may be.
You may also find that a slow tapering plan where you take about a month to get from old dose to new rather than overnight alleviates the withdrawal problems.
Just one of many plans attached -
Hello, yes I do. I’ve had many a scare thinking it’s my GCA coming back, but it resolves after a few weeks on the new dose. I’m on 3mg almost now and I’m pretty sure my adrenals are doing quite well now. However, the scalp thing hasn’t changed.
Yes I experienced that too ,it's creepy isn't it but it did pass .Rule of thumb ,if it worries you get it checked out . Put your mind at rest and yes I have learned a lot from here too .It's the shared information that helps so much from voices of experience . We all have different things to help create a picture don't we ?
Sorry I don’t understand. You said you didn’t have to go on steroids but then you mentioned you were reducing. And yes I do get the same sensation!
I started getting that sensation on and off a few months before my pmr diagnosis. Some numb feeling too. It went away during treatment with the higher starting doses of prednisone and returned (on and off) at a certain point in the taper.
I was also told I was one of the unfortunate ones who is having nerve issues from the biopsy for GCA three years ago (negative). I get tingling in that part of my head, and sometimes just a light touch there gives me a weird sensation that there is a string being pulled inside my head. Ouch. That’s the most accurate description I can come up with.
The 1st time I had PMR was 4 years ago. It was resolving when I got the diagnosis, so I opted out on Prednisone. This summer it came back following my 1st Cataract surgery. It has surged and wained since June and my GP suggested I try Prednisone. It felt so good to have no pain, but the drug scares me. I'm tapering currently, so hopefully less Prednisone will mean fewer side effects!👍
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