Scalp pain advice: You know my story-gca since... - PMRGCAuk

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Scalp pain advice

Spanky2019 profile image
10 Replies

You know my story-gca since April 2019. Tapering prednisone- been on 15 mg almost 30 days. Scheduled to go to 12.5 next week. Headache started 2 days ago on top & back of head- this is where I had pain previously with the gca. Yesterday scalp pain from top of head down right side back of scalp. Very painful to touch. Haven't had this symptom before. (Not that I can remember). Not sure what protocol for this is. Do most ppl call Dr office or just wait & see?

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Spanky2019 profile image
Spanky2019
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10 Replies
enan-illuc profile image
enan-illuc

Spanky 2019,

I have GCA and PMR and has the same thing happen when I tapered to 20mg of Prednisone. I called my Rheumy and she said to increase my dosage. I am no medical person but I would contact my Doctor.

Spanky2019 profile image
Spanky2019 in reply to enan-illuc

Thank you so much.

Yellowbluebell profile image
Yellowbluebell

Hi spanky, the usual recommendation with any new symptoms of gca is to see your doctor asap and if you have any disturbances of vision you need to get to an emergency room urgently. Please keep us up to date on how you get on.x YBB

Spanky2019 profile image
Spanky2019 in reply to Yellowbluebell

As always, thank you for your advice. Will call right away in morning.

Yellowbluebell profile image
Yellowbluebell in reply to Spanky2019

Make sure you let us know how you get on. Good luckx

Marijo1951 profile image
Marijo1951

I started on 60 mg pred in July 2017. In December that year I had two flares of GCA when I tried to reduce below 25 mg. I went straight to the Accident & Emergency Dept of the hospital where I am treated, gave my hospital number and asked to see somebody from rheumatology. I did this on the advice of my rheumatologist who had told me to go straight there if I had any flare up of symptoms. The second time I was prescribed Methotrexate as a steroid sparer. There is controversy on the forum about this drug, but in my case I think it has helped me to taper successfully and I haven't had a flare since. However I think I'm also helped by my rheumy's attitude as she's happy for me to taper slowly at my own pace.

You need to see your doctor without delay preferably this morning. I think he/she will advise you to increase the dose and probably take an ESR or CRP while you are there.

PMRpro profile image
PMRproAmbassador

Speak to your doctor asap. ANY return of potentially GCA symptoms when reducing must be looked at.

There is study evidence that GCA can still be very active even after 6 months on high dose pred, i.e. above 20mg/day.

Blearyeyed profile image
Blearyeyed

Definitely get to the Doctor and have your inflammatory markers checked , they should tell you to stop the taper until it is resolved or may recommend increasing the dose.

If you are in cold and wet weather at the moment ( or hot humid weather ) this might have added a trigger to your head pain , so keep your head warm ( or if it's not keep cool ) .

Paracetamol through the day should help any added nerve pain or tension headaches .

Try and keep your face and neck relaxed and sit comfortably but with a good posture .

Keep hydrated , warm drinks can be soothing in any weather .

Massage your scalp gently through the day to help prevent the pain making it itchy .

jinasc profile image
jinasc

Apart from calling your medics, asap...............in the meantime try this to relieve some of tha pain in your head. Spread your fingers through your hair and gently tug all over. This releases the tension in the little muscles at the root of your hair. Bit like Shiatsu.

People forget that both GCA and PMR affects the muscles..............PMR more so as the oxygen supply is impaired.

However, call your medics..................your sight is important and the others have already told you.

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