Doctors not helping me, desperation

Hello,

I am a 23 year old male with a highly unusual presentation of giant cell arteritis in my right temporal artery. I cannot believe I am saying this but the rheumatologist I have been seeing still refuses to give me steroids until the results of the temporal artery biopsy that I just had today become available, which could take up to 2 weeks!! Ugh I am in so much pain and all I need is someone to prescribe me prednisone! The head artery pain is so maddening and I can't sleep, think or work! Why won't this doctor help me?? I believe it is because I am so young and the rheumatologist does not think I can possibly have GCA since it affects only older people. I need to find a GCA or vasculitis specialist USA preferably on the east coast so that I can get the treatment I need and deserve! Does anyone know of a good doctor in USA? swear I am complelely at my wits end with this isolation and desperation. If no doctor can help me I don't want to live anymore; I'd gladly just throw in the towel and give up. I'm even considering ordering prednisone on the internet since I cannot find a doctor to help me and prescirbe the prednisone. All my blood tests and scans have been normal. The biopsy result may be positive but I cannot be sure and it takes too long to get the results especially when you are in such excruciating pain.

Devin

[cdenoncourt]

Hi Devin,

Most of the people on this forum are in Europe where it is the middle of the night right now. I live in FL. If you want a good place to pursue a thorough diagnosis and treatment on the US east coast, I highly recommend Mayo Clinic in Jacksonville, FL. You can make an appointment online where you can also see what insurances they accept. You don't need a referral.

In the meantime, take what available pain medication seems to help and try to sleep. You can handle this Devin.

[knit1purl2]

Devlin, I don't know what state you are in but Dr. Mark Moster is at Wills Eye Hospital in Philadelphia, PA. He is the doctor who diagnosed me with GCA in January 2015 and is a wonderful doctor.

The phone number is 215-928-3130.

Hope this might be of some help to you.

[Megams]

Hi Devin

I live in NZ so can not assist with names of a Specialist.

What I want to offer you are my thoughts and prayers to hang onto hope during this hugely difficult time. Pain is crippling, so is lack of sleep. Hold onto hope even if it is a mere glimmer.

There will be an answer and I pray that it is soon.

Hugs in abundance.

[Hidden]

Hi Devin,

Dr Peter Merkel is a world renowned Vasculitis specialist and is in the USA. There is a charity called the Vasculitis Foundation ( I think ) I will see if I can find a link. Hopefully they will be able to help.

[Hidden]

Check out their website. They have a list of Dr's with experience in Vasculitis.

vasculitisfoundation.org/re...

[PMRpro Ambassador]

The first thing you need to do is go back to this current doctor and tell him what you have just told us - having suicidal thoughts because of pain is something that needs dealing with and possibly he will rethink the pred. You must emphasise to him how severe the pain is and that painkillers don't relieve it.

I can't remember now, have you have already had pred that worked for the pain? Otherwise, the doctor may be working on the possibility it is juvenile temporal arteritis which isn't normally treated with pred because excising the artery cures it, it isn't quite the same as GCA.

However, since you have already had the biopsy done, I doubt whether any doctor would treat you without the results. You can but use the link Keyes has given you to try to find one. They are reluctant to start using the sort of dose of pred required in GCA without very good grounds - used in someone your age it has tremendous implications for the rest of your life including osteoporosis, hypertension, raised cholesterol to mention just a few.

[Hidden]

Thank you everyone for your thoughts and support. I convinced my primary care doctor to prescribe prednisone for 10 days until the results of my temporal artery biopsy come back. This was great news!

Devin

[DorsetLady PMRGCAuk volunteer in reply to Hidden]

Good! Hope you get the right results from the Pred! At least you can now relax a little and worry less because something is being done. I'm sure you'll keep us informed of your progress.

[Celtic PMRGCAuk volunteer in reply to Hidden]

Oh what a relief for you Devin, especially as you know that your pain resolved within just a few days on Pred previously. I really hope you have the same result again - even one day spent without that sort of pain will lift your spirits, so chin up, we're all rooting for you.

[cdenoncourt]

Good for you Devin. We have to learn how to advocate for ourselves with this disease.