GCA Hair Loss & Skin Changes

[driveway77]

Hi All

Sep 2022 was admitted to hospital suffering from severe headache, facial swelling &jaw movement difficulty. Diagnosed with GCA ( Right Temporal artery biopsy) & placed on 50mg Prednisone daily & 10mg AMLO daily

Dec 2022 commenced weekly injections of 162mg Tocilizumab (Actemra) & still having the injection as I write

Dec 2022 commenced tapering of Prednisone as directed & last dose was taken April 2023

April/May 2023 started losing a considerable amount of hair from the scalp, skin from the scalp, forehead & ears. Question I would like to ask is hair loss & flaking skin on the face part of GCA, medication or maybe should I be looking at another medical condition?

Prior to GCA diagnosis I was healthy; with no known other medical conditions, so this is all very new to me. Currently I am having monthly blood tests & attending Hospital Rheumatology Clinic

Thank you & hope someone can assist with my query

[Kendrew]

Hi driveway77,

Others with more knowledge will be along soon, but just to say that although I can only comment on my experience of PMR and prednisolone, my experience definitely involved scalp hair loss & thinning and much more sensitive and fragile skin.

[Plains in reply to Kendrew]

my hair has been thinning too. I hope it stops now that I am down to 1mg.

[Kendrew in reply to Plains]

My hair is definitely improving and feeling fuller and thicker. For the past 6mths I've also been using a really good specialist shampoo & conditioner that nourishes the scalp, and that seems to have had a positive effect.

[Plains in reply to Kendrew]

Hi, what is the shampoo you are using?

Thank you

[Kendrew in reply to Plains]

It's called Viviscal and both the shampoo & conditioner come in tubes. (Google it)

I've found it hard to locate 'in-store' anywhere so I order mine online. Its not cheap but it lasts a long time as you don't need much of it.

Obviously, other nourishing hair products are also available!

[Plains in reply to Kendrew]

thank you very much!🌼

[Bluey-1]

Yes, I concur re thinning hair and fragile skin. I have GCA.

[SnazzyD]

When I was a nurse, many times I saw people lose hair and skin after a systemic shock like a bad infection for example. Often it was months after the main event. When 5 months after my sudden emergence of GCA my hair was falling out in clumps, I realised I was no exception. It was almost nearly as bad as when I had chemo, but instead of bald as a coot I had a variety of tufts like a toddlers haircut. It grew back. It happened again when I had another deep systemic shock of adrenal insufficiency on low doses of Pred. I’ve seen people’s skin peel off in strips, though it is not as common as the hair. At a few points in between it threatened to do the same but didn’t quite follow through, though played havoc with my hair do’s.

Pred makes the skin thin and it will recover to a greater or lesser extent. Mine took at least 12 months after I stopped Pred but I always did have thin skin. Since you main issue is flaking on the head, it might be worth trying a shampoo like T-gel (coal tar extract), or Selsun (Selenium Sulphide) in case it is a fungal overgrowth due to being immunosupressed.

Many all of us were fit a well before GCA struck so we do understand the shock of the change in circumstances. Many also look back and see that actually our lives were fairly 100 miles per hour plus or minus lots of stress beforehand. For some it’s a one off hit like infection, vaccine, illness.

[DorsetLady PMRGCAuk volunteer]

Hair loss not necessarily all down to the drugs - as SnazzyD says the shock of the illness can be the cause - have a look at this compilation of posts on the subject from the FAQs- and now you have written this there will be related posts to view -[either on right of screen or scroll down below current posts depending on which device you are using]

healthunlocked.com/pmrgcauk...

[PMRpro Ambassador]

It is very common to experience effects on hair about 6 months after a serious illness - and GCA is a serious systemic illness which can affect the blood flow to the scalp.

By AMLO do you mean amlodipine?

[driveway77 in reply to PMRpro]

Just checked the box & yes Amlo 10 is Amlodipinemg

[PMRpro Ambassador in reply to driveway77]

You say you have no other medical conditions - had you had no BP problems before? Didn't you look or is this an effect of the tocilizumab?

The NHS and Mayo pages list flaking and peeling skin as a rare side effect of amlodipine and one you should report to your medical team urgently. Do you have a rash to go with it?

[driveway77 in reply to PMRpro]

I had not been on any medications prior to being hospitalised & diagnosed with GCA Sep 2022

Hospital Rheumatology placed me on Prednisone & Almo -10 (Amlodipine) Sep 2022 & Tocilizumab (Actemra) Dec 2022. Prednisone stopped April 2023. I have no rash, just flaking of scalp, flaking of facial skin & hair loss. Some scalp hair comes out with bits of skin attached. I will research Amlodipine side affects tonight & give my local GP a visit tomorrow as I am now a little concerned

[PMRpro Ambassador in reply to driveway77]

Did they explain WHY the amlodipine? There must have been a reason - it isn't standard therapy for GCA.

[driveway77 in reply to PMRpro]

When I was admitted to hospital they did not know what was wrong, I had high blood pressure, high, temperature (40), massive headache, confusion etc. During the two week hospital stay they had given me many medicines and ran many tests, CAT scans, MRI, Lumber Puncture, Blood tests (CRP was145.5) Right Temporal Artery biopsy etc as they were looking for infection. On hospital discharge after GCA diagnosis I was referred to the Rheumatology Clinic for ongoing treatment. Rheumatology explained Amlodipine was to keep my blood pressure normal which is tested monthly with blood count reports (CRP now 1.0). One thing I did forget to mention is that I have ringing in the head which although mild is another ‘rare’ symptom for Amlodipine. I will speak with my local GP tomorrow morning & ask if I can have this medication changed. Thank you for your help & input, much appreciated!

[PMRpro Ambassador in reply to driveway77]

I know - in the UK they seem to have a fixation with amlodipine for hypertension - never been mentioned for me here! I was allergic to an ACE inhibitor so then they used 2 others both at low dose. Actually, once the GCA inflammation is under control, patients often find their BP falls considerably as the inflammation narrows the blood vessels and raises the BP.

[driveway77 in reply to PMRpro]

Greetings from Down Under-Australia

Saw my local GP today regarding the 10mg amlodipine daily & she said I need to consult with the GCA Rheumatologist which I will do in several weeks time to see if this if this medication may not be suitable for me. Thank you for bringing this possibility to my attention

[PMRpro Ambassador in reply to driveway77]

What/ Can't GPs do ANYTHING these days?

[driveway77 in reply to PMRpro]

There is no such thing as a personal or family GP anymore, they just write scripts for medication, give vaccination shots, write referrals for specialist treatment, arrange blood tests etc. They are cautious & if you ask for any treatment information they Google as you sit in their surgery. Bulk billing is nearly non existent & you are now asked to contribute a co-payment for GP visits. It is what it is & I feel better going to Hospital Rheumatology clinics where at least they keep your files up-to-date

[PMRpro Ambassador in reply to driveway77]

That's a problem with your system - not all systems are the same and I have a GP who answers the phone herself and I can see same day if I need to - turn up and wait. She has access to the same hospital records the rheumy does but he doesn't have access to HER records for reasons of patient privacy. It's the other way round here - GP visits are free, so is in-patient treatment and for certain long term conditions. Otherwise you have a co-pay for appointments and treatments. Works well enough for me so far.

[driveway77 in reply to PMRpro]

Just checked the box & yes Amlo 10 is Amlodipine 10mg

[LucilleG]

"Sep 2022 was admitted to hospital suffering from severe headache, facial swelling &jaw movement difficulty. Diagnosed with GCA ( Right Temporal artery biopsy) & placed on 50mg Prednisone daily & 10mg AMLO dailyDec 2022 commenced weekly injections of 162mg Tocilizumab (Actemra) & still having the injection as I writeDec 2022 commenced tapering of Prednisone as directed & last dose was taken April 2023."

Hi driveway77,

From what you have written, I just want to confirm that you started with 50 mg of Prednisone in September 2022 and you tapered off of Prednisone by April 2023?

[driveway77 in reply to LucilleG]

Hi Lucille, Greetings from Down Under - Australia

Yes you are correct, started with 50mg Prednisone daily Sept 2022 & commenced tapering of Prednisone Dec2023 as directed, last dose being taken April 2023.

Saw my local GP today regarding 10mg AMLO daily & she said I need to consult with the Rheumatologist which I will do in several weeks time to see if this if this medication is not suitable for me

[driveway77 in reply to LucilleG]

Edit - mistake in my earlier reply, should have read "commenced tapering of Prednisone Dec2022 "

Hi Lucille, Greetings from Down Under - Australia

Yes you are correct, started with 50mg Prednisone daily Sept 2022 & commenced tapering of Prednisone Dec2022 as directed, last dose being taken April 2023.

Saw my local GP today regarding 10mg AMLO daily & she said I need to consult with the Rheumatologist which I will do in several weeks time to see if this if this medication is not suitable for me

[DorsetLady PMRGCAuk volunteer in reply to driveway77]

You can edit your response - just select the More v box - gives you options - make your changes and then reply as usual. Then you will see comment that it has been edited [as mine shows].

But on the subject of your tapering of Pred -very quick even with TCZ in the equation.

[driveway77 in reply to DorsetLady]

Thank you Dorset Lady, did not know how to edit original post, new to all this including GCA, much appreciated! With regards to tapering of Prednisone just did as Rheumatology instructed. Hoping this all works out for me. I am 72 & this is the first time I have been ill & taking drugs. Happy to be part of this forum xxx

[DorsetLady PMRGCAuk volunteer in reply to driveway77]

Comes as a shock doesn’t it? But stick with us -and we’ll get you through it 🌸