Scalp Sensitivity

[GivenUp24]

I’ve been riding the prednisone rollercoaster. I finally got to 17.25 for the last three weeks or so my CRP went from 19.7 to 2.0. But now I have scalp sensitivity that I’ve never experienced before. The first two times lasted about three hours, but this one’s on day three. It’s not excruciating, feels like my head is bruised …it burns and it feels cold.. my ESR has always been normal. But rheumatologists wants me to continue to taper. I’ve had polymyalgia for 3 years and GCA for a little over a year. I’m baffled because they both said because it wasn’t long lasting, that it was intermittent that it’s probably not GCA. But that’s not what I’ve read. I’m baffled once again.!!

[SnazzyD]

Is it always in the same place?

[GivenUp24 in reply to SnazzyD]

No, it moves all over the place. There is one particular place that’s more stable and that’s on the back of my head at the top.

[Researchfreak in reply to SnazzyD]

It sounds like neuralgia. I get this and the pain is sharp and sudden. You can touch 1 hair and wow it’s like an electric shock pain. I take a gabapentin for neuralgia as they work for me. Good luck

[PMRpro Ambassador]

I know this sounds nuts - but have you tried washing your hair REALLY thoroughly and massaging the area that is sore? I used to get similar sensations and would often send them packing doing that because the hairs were not lying "right".

[GivenUp24 in reply to PMRpro]

I usually wear my hair up on top of my head in a bun, so I decided to wear it down to see if my hair placement had anything to do with it. It doesn’t seem to matter right now. I just can’t believe how little rheumatologists know about PMR GCA. I don’t wanna go back on the higher doses of prednisone because of side-effects. I think the next step is an MRA to see where the inflammation is coming from according to the rheumatologist. I don’t know…..

[PMRpro Ambassador in reply to GivenUp24]

They do know a fair bit but with every patient being different and there being relatively few patients who have GCA, many do struggle badly. A GP may never see a patient in their entire career and the same applies to some rheumies who mostly see patients with inflammatory arthritis, They think it is similar and it really isn't.

I do appreciate the unwillingless to go back on higher doses of pred - but what you do have to bear in mind that pred rarely has side effects that are as a bad as the ultimate adverse effect of GCA, total and irreversible loss of vision. It can also cause stroke or MI - also potentially devastating.

[GivenUp24 in reply to PMRpro]

I went to a rheumo that has been dealing with PMR and GCA for 38 years. It’s still all just guess work with him. And there are no answers if 17.25 is enough to keep GCA at bay, just so fed up.

[piglette in reply to GivenUp24]

I went to a rheumy like that. He did diagnose PMR for me very fast as my GP had failed miserably. The trouble is he thought he was the be all and end all on the subject and he wasn’t.

[GivenUp24 in reply to piglette]

Exactly!

[PMRpro Ambassador in reply to GivenUp24]

To some extent it is for anyone - they are both very unpredictable. But I think it is fair to say that we see a far less informed level of care in the USA than here in Europe. Which might have something to do with the fact a lot of research, developments and discussion originate here and maybe there are a lot of doctors in the USA who on principle don't take any notice of publications that come from outside the US. Some don't even read them as one rheumatologist told a patient asking about something we had discussed here.

[GivenUp24 in reply to PMRpro]

I don’t think America cares about their people. It’s with everything…. the food, the medicine.

[PMRpro Ambassador in reply to GivenUp24]

Big business doesn't - they just care about the bottom line. And that is why big business shouldn't be mixed up in running healthcare. Big article in the Guardian today about US doctors saying the insurance cover insistence on approving and "peer to peer" discussions is killing people. They aren't peer to peer - the doctor at the insurance office doesn't have the same training and knowledge as the surgeon wanting to operate but also wanting to know if the tumour has spread which would change the way they go about it. The insurance bod prevaricates about the PET scan that would give the information required, eventually says yes, 6 months later. In the meantime the patient has died.

[GivenUp24 in reply to PMRpro]

It’s disgusting. My one rheumo said he was *not allowed* to schedule a pet scan, but another rheumatologist in the same state said that that was basically a lie. The other problem is he will prescribe me a medicine like Metropol to control my heart rate, and then he will never fill it again. He prescribed me famotidine For my stomach and refuses to refill it. He’ll send me to my GP. I don’t understand any of it.

[Chiqui1950 in reply to GivenUp24]

When I was taking 17.25 mg of pred--- that was quite high so I needed the daily famotidine to protect my stomach lining--- my doctor told me that once I got below 10 mg pred, I could diminish or drop ot--- that advice has worked for me--- I wish the same for you!

[AlamedaCounty in reply to PMRpro]

A silly question, I'm afraid, but I'm tapering after 3 years. Now down to 4 mg/day and being encouraged to taper further by my GP. What is the balance between the level of pred taking and the possible problems of strokes/losing sight etc?

[PMRpro Ambassador in reply to AlamedaCounty]

Never a silly question - but not sure what you mean? Being able to taper the pred to zero without a return of symptoms is the sign the GCA is fully in remission and the guide all the way down is that you don't get symptoms returning so the inflammation is fully under control. Whatever dose does that at any stage reduces the risk of stroke or visual loss. The very high doses used in GCA are to reduce the inflammation that causes that risk by narrowing arteries as quickly as possible. Once that initial "clearout" is done and you then taper without any signs of symptoms, you should be OK.

The greatest risk of stroke is in the first year after diagnosis - and that is when you are likely to be at the higher doses or symptoms reappear if you taper too fast so care is required. When you say "I'm tapering after 3 years" - did you stay at very high doses for a long time? Normally you would start to taper after a couple of months once the symptoms are well controlled.

[AlamedaCounty in reply to PMRpro]

Many thanks for the encouraging clarification. I started on 40 mg/day and tapered to 0 at the end of 2 years (as the consultant told me). It didn't work so I went back on and over a year later am on 4, having gone up from 2 after a little flare. Will keep hoping symptoms disappear. It would be great to know what causes the inflammation behind this.

[PMRpro Ambassador in reply to AlamedaCounty]

Much the same as any autoimmune disease - something sends the immune system haywire and it turns on the body, unable to recognise it as self. There is a genetic predisposition but it isn't hereditary as such. Then the immune system just eventually gets overloaded and bang - PMR or GCA or something even worse.

[Chiqui1950 in reply to GivenUp24]

Yes!! Good Idea!!

[SnazzyD]

I have had scalp tenderness from four things:

1. Just before my hair fell out in a more than the usual amount. Had this 5 months in from GCA diagnosis, at the end with adrenal insufficiency and with chemo. More minor events in between after Covid infections.

2. Intermittently before my GCA bloomed at which point it became incessant.

3. Shingles.

4. Extremely tense neck muscles. Relieved by massage and my favourite, Bowen therapy.

[GivenUp24 in reply to SnazzyD]

So sorry….😞

[SnazzyD in reply to GivenUp24]

Thank you but it sounds worse written in a list. I did get breaks in between!

[Luciejane]

Hi short answer would be don't raise your steroids if your bloods are normal. Longer answer is scalp tenderness is a symptom of GCA and I've had it throughout the past 31/2 years although lesser now. Don't go on symptoms alone to detect a flare. You were diagnosed with raised CRP and as it's now normal it's unlikely to be a flare. I trust my blood results, if I'm having symptoms and they are normal then my symptoms are due to tapering. I have always had scalp sensitivity and tingling sensations in my face hands and feet which remain even though I'm on 2.5mg and bloods normal There's a lot of great advice on here, we are all different. Good luck with your journey

[PMRpro Ambassador in reply to Luciejane]

"don't raise your steroids if your bloods are normal" - some of us would never have raised our pred on that basis!! As you so rightly say - we are all different and you have to know YOUR illness and whether blood results tell the true story.

[hill-walker in reply to Luciejane]

One possible exception: if you are taking Actemra. With Actemra, lab results may be normal, but symptoms can be a reflection of continued inflammation.

[GivenUp24 in reply to hill-walker]

Same with prednisone.

[Avadip12]

I have had PMR for many yrs I am on 4.5 mgs . Never had GCA. But recently I have been experiencing scalp tenderness on the top of my scalp , as you described it , very sore , tender, hot and slightly spongy . It happened on and off over the month . Due to our problems with GP access , I didn’t bother. Now it’s gone , so no idea what it was .

[IlovePorridge]

Sensitive and itchy scalp is the bane of my life. My GP has ruled out PMR, despite many symptoms, and more recently, GCA. I do have Sjorgen's, pulmonary fibrosis, and collagenous colitis. Sjorgen's shares many PMR symptoms, one of which is tender scalp. I've tried steroid mousse, OTC preparations, massage, etc. Nothing has worked for me, and rheumatologist and GP dont have any answers. I hope you can find something to help you. We're all different so good luck.

[GivenUp24 in reply to IlovePorridge]

Same to you….🥹

[hill-walker]

I wonder if you're also taking Actemra or Tyenne? Both are tociloizumab, which reduces inflammation and assists with lowering pred. dose for controlling GCA.If not, talk with your doc. I've struggled with the symptoms that seem like possible GCA that I never had before diagnosis, which respond positively to a slight bump in pred. dosage. Scalp issues being one of them. With the help of the forum I've started to trust what I feel in my body, to explore possible other reasons/treatments for the symptoms, (like deep hair washin as suggested) and if no joy, act accordingly.

[GivenUp24 in reply to hill-walker]

I can’t take it, as I’ve had cancer….☹️

[sew-lady]

my experience has been with scalp sensitivity that it is a flare. My flares usually come in the winter time when it’s cold and some stress issues. I would find a rheumatologist that will test for it or increase your prednisone at least for a little while. these flares can be serious on your eyesight.

[GivenUp24 in reply to sew-lady]

I have my CRP tested every two weeks. It’s the lowest it’s been since I’ve started on this miserable path. I’m on 17.25… considered a high dose.

[Chiqui1950]

Hello dear Given Up24, I would like to share that I have also experienced scalp significant sensitivity that moves all around even at normal inflammation levels for months at a time---I got Tea tree shampoo and conditioner and I washed my hair more often and got some relief---what really helped was the Teatree mint scalp treatment (although temporarily) then the sensitivity disappeared by itself--- it comes back from time to time but it is a lot milder and it goes away quickly--- I hope this is helpful!