Severe head sensitivity and when do symptoms get better

[bjacobs]

Hi all. We are new to this group. My husband was diagnosed with GPA in February. He is taking Tavneos and Prednisone and has had 2 infusions of Rituximab. His main symptoms were sinus and ear related, but head sensitivity was always in the picture too. Now his head is SO sensitive that it can't be touched. He can't sleep because when his head touches the pillow, it starts to radiate pain throughout the rest of his head. He can't wear his reading glasses because it hurts his nose too much. Is this a normal symptom of GPA? And when do the symptoms start to get better? Thank you!

[Pete]

bjacobs

Wow! The head sensitivity is a new wrinkle to me. Is your doctor aware of this? It sounds absolutely miserable.

At any rate, the ear and lung symptoms should be abating soon. How much prednisone is your hubby on? Do his labs include an inflammation marker such as sedimentation rate or C-reactive protein? Is his doc familiar with vasculitis? (Ask how many cases s/he treats in a year.) A vasculitis specialist will be treating several hundred cases a year. The docs who dxed me at Ohio State were only treating a couple dozen cases. My specialist at Cleveland Clinic treats 60 cases a WEEK.

There are many forms of vasculitis with different symptoms. Or, your hubby could have something else going on. I’ve learned to tell my doc about any strange symptom so it can be evaluated.

I was dxed about a month after my first symptom (earache that wouldn’t resolve with normal treatment) appeared. I was put on the “Fauci Plan” of cytoxan and high dose prednisone. It took about a month before I started to feel ok and about six months to get back to near normal.

Good luck!!

[bjacobs]

Thank you, Pete! That is helpful - because you can start to wonder when you might ever feel better again. He is on 15 mg of Prednisone, but he has been on it more than a month, and the Tavneos is supposed to be taking over. Thankfully his doc is a specialist in vasculitis at Hospital for Special Surgery in NYC. But we have a virtual second opinion upcoming at Cleveland Clinic, which I understand is the best resource in the country (you must know that!). He has mentioned the head pain to the doctor, but she hasn't ever really focused on it - which is one of the reasons we are going for the second opinion option...

[CapeKay]

Years ago I was treated for GCA (Giant Cell Arteritis), a vasculitis of the temporal artery. I had a horrible symptom where my scalp felt like it was on fire. It was so sensitive. Washing it, brushing my hair, was brutal. Likely not the same thing but thought I would pass it on. Inflammation plays a role in both. I feel for you.

Kathy

[bjacobs]

Oh that is very interesting, Kathy. I am going to ask his doctor if it could be that - it looks like the treatment is the same as what he has been receiving for GPA (steroids), but it also looks like it would be important to know if it was in fact giant cell arteritis. Thank you so much for this - we have been at a loss and so puzzled, and this is the closest to what it could in fact be. Thank you very much.

[CapeKay]

Just an update. My new Doc at MGH that specializes in GPA believes that I have had it all along and that possibly what was previously diagnosed as Giant Cell Arteritis was incorrect. He claims he has seen this same symptom in a few other GPA patients. Hope you are feeling better.

[bjacobs]

Just an update. My new Doc at MGH that specializes in GPA believes that I have had it all along and that possibly what was previously diagnosed as Giant Cell Arteritis was incorrect. He claims he has seen this same symptom in a few other GPA patients. Hope you are feeling better.

Thank you so much, Kathy. That is very helpful information because we were having trouble confirming that this was in fact a symptom of GPA. His rheumatologist is at HSS in NYC but we also consulted with someone in Cleveland Clinic, and neither knew of the burning head/scalp sensation as a symptom of GPA. My husband is, knock on wood, feeling better with his treatment. I hope you are as well. Thank you, again, for taking the time to circle back - I am really grateful.