Scalp crawling sensations when lowering Prednisone dose

[Ruidoso74]

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.

[DorsetLady PMRGCAuk volunteer]

Hi

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 -

healthunlocked.com/pmrgcauk...

[Ruidoso74 in reply to DorsetLady]

Yes, I have found the crawling sensations lessen gradually after a few weeks. I have had a total hysterectomy 30 years ago with estrogen replacement therapy for 20 years, so I wonder if my hormones are off kilter anyway.

[SnazzyD]

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.

[patriciawhite]

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 ?

[Suet3942]

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!

[SusanEleven]

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.

[Ruidoso74]

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!👍