SCALP PAIN....

[cjatthesea]

I was diagnosed with GCA and PMR about one year ago. I started with 60mg of prednisone, am now down to 17 1/2. Certainly not doing as well as I would like. ( Silly remark, LOL ) For me, an early symptom was scalp pain. In fact, I mentioned it to a GP about 20 months before my diagnosis. My scalp pain is worse now than it was early on. I believe it's only been gone for a period of about two weeks. That was in October, I believe. I was taking 20 mg at that time. I am, also, taking Methotrexate. Have been on that for about four months.

Of course, the scalp pain is only one of many problems but wondering if others are dealing with the same issue.

So very grateful to have found such a knowledgeable group. Even after a year....,I have a lot to learn.

[PMRpro Ambassador]

You aren't heading relentlessly for zero (much as I know everyone wants to be) - you are looking for the lowest dose that manages the symptoms well. That is a pretty speedy reduction - and I have to wonder if it has been too fast? That the 20mg coincided with the inflammation finally being properly controlled - and then you kept going allowing it back again. It is said that flares are common in the first 18 months of GCA - and the most common cause of flares is reducing too far or too fast.

Of course - the scalp pain now could be something else - I had scalp pain briefly in the relatively early days of my PMR but it went away. I had something similar last year, it really was discomfort that was very similar, but I found eventually it was something a bit like cradle cap that was making my scalp so sore and made my hair feel the same. I dealt with that and haven't had the soreness since.

[polkadotcom in reply to PMRpro]

Scalp pain has been one of my annoyances all through a rather long journey and I still suffer from it, but it is now manageable and I have found various ways of coping with it.

I have never found the answer as to what it was or what might be causing it, both consultants and doctors have glossed over it and as it doesn't appear to be anything serious (I think I'd have found out by now) I've just coped with it as I've gone along)

I will get the answer some day - I hope.

[pilgarlick]

I had an extremely sensitive (bald) scalp for about two years before being diagnosed with GCA last June. The only other symptom in that time was a fairly regular headache, with which I learned to live. I started on 60mg of Prednisolone and have been reducing steadily to 12.5 and hoping to be on 10mg early in the New Year. Since starting the medication, I have had no scalp tenderness at all and only the odd headache.

[Nap1]

Hi seems to me scalp pain is a Huge indication of active disease. I too have GCA since July 2015. Just reduced to 35 for the second time and waiting for results of blood test . Have no symptoms from the disease but lots of symptoms from the prednisones . For me the numbers in the blood tests have always ruled. When I had PMR if the ESC was too high the pain came back. after three years I was PMR free for at least a year before the GCA. I hope my experience helps you. Happy New Year. Good health in 2016.

[cjatthesea in reply to Nap1]

I'm in agreement. I had a pain free scalp for two weeks. I tapered from 20 to 17 1/2 and have had pain most of the time since. It comes and goes. When I was first diagnosed by a Rheumy, I was told telling a GP about scalp pain should be an immediate red flag. Other than GCA, not many things will cause scalp pain. I had mentioned it to my GP about 18 months before my diagnosis. She acted like I was crazy. I am still at 17 1/2 and will stay there through this month, at least. We will be traveling and don't want to rock the boat. My numbers are always good. My Rheumys say to ignore them....not accurate. I have all the symptoms of GCA and PMR including loss of vision in left eye. Some hearing loss on that side, as well.

Hoping for improvement this year. It is tough and it is slow. This site is a real blessing, Thanks Nap1.

[bunky52]

Yes I also have scalp pain. May 2014 diagnosed with GCA. My scalp is still sore. My skin is also changing. On my arms the skin is very thin. I have scars and still bruise terrible. I am on 4 mg of pred however I am having actemra infusions. I have had 7. I have now developed welps on my arms. Itchey sometimes. Anyone else experience this?