COULD IT POSSIBLY BE GCA

[Doctortotrust]

I am a 47 yo female who has been having symptoms for almost 2 years. First onset was after taking nap and awakening with severe pain all over, flu-like but worse. It gradually went away but left with severe neck pain and fatigue. I didn't seek attention for a week because I couldn't take fatigue. At that time the only thing abnormal was a CRP of 56. I had severe tooth pain that started in the back and worked to the front, but dentist said nothing was wrong, so went to neurologist and CRP was still mildly elevated. I am learning that going to the ER at the onset is the best answer in order to get an elevated ESR. Too many episodes to mention in between but after being told so many things by different docs, I gave up. But when I did go, I always went a week after symptoms started but CRP was always elevated. I have told them my vision literally changed overnight but opthalmologist didn't see anything. I am still losing vision and for 2 weeks I felt my head was being pumped up and have tender spots all over top of head, ears are ringging, bad vision (worse in right eye), severe shoulder and hip pain, and extreme exhaustion on a lot of days. I am just waiting on a severe flare any day now. I need input on whether anyone else has these symptoms and if so, did you too have a normal ESR. I just have tried to play tough and not go to the ER, but I know I will have to this time to make sure the ESR is not elevated, because it does go back to normal within 24 hours of peak. Any insight would be greatly appreciated

[DorsetLady PMRGCAuk volunteer]

Hi,

As PMRpro said in response to your previous post, many of the symptoms are similar to GCA, but GCA does not come and go as you describe. Once the inflammation is causing problems it just get worse until you take Pred.

My CRP was 26, ESR 56 when I was finally diagnosed - 18months into things, and sight loss in one eye. In many sufferers ESR is much higher, and again as PMRpro says it can reflect a myriad of other things.

As already stated, the experts in the field are Rheumatologists, so would suggest you request appointment. 47 is quite young for GCA, but certainly not unheard.

Don't play it tough, you need to get this sorted - whatever it is!

Good luck.

[Doctortotrust in reply to DorsetLady]

I failed to mention that a rheumatologist did put me on prednisone, but just 15 mg, and the first thing I noticed was an improvement in vision. I did, however, have another major flare about 2 weeks into treatment with prednisone. It did help relieve a few aches and pains but did not touch any of the neck or hip pain I experience. Also, the symptoms never fully go away, they just aren't so severe, but then they pick up and are a completely different symptom of some sort of awful pain. At the present time, I have severe left neck pain, but 2 years ago, it started out on the right side of the neck and that is not really hurting anymore. I also have hip pain and my head feels like it has fluid rolling around from side to side and hurts to high heaven. Also, my vision will vary from day-to-day. I just want some help from this nightmare. Doctors have left me desperate to find the answer as they are so textbook and cannot think outside of a box. My stepdad went through a year of pain and then eventually started losing memory and very confused to the point he could not drive or work. It took a year of mouth lesions and changes in his brain that went to the stem, to find out he had Behcet's (vasculitis). It took Vanderbilt to figure this out. What is wrong with our doctors. My mom went from ER to ER for months and got called a drug seeker, to find out she had rheumatoid and vasculitis and was about dead from it before it was found. You have to see my desperation. I do thank you for your help.

[DorsetLady PMRGCAuk volunteer in reply to Doctortotrust]

Hi again,

Believe me, I do hear your desperation, and fully understand your fear and frustration, as I said I had 18months of similar feelings. But, like the majority on here, I have no medical training, only experience of being a patient!

If your vision improved then that may indicate GCA, and if it is then 15mg is certainly not enough, needs to be nearer 60mg, so no wonder you had a flare.

If you were in UK , there are plenty of good Rheumies you could see privately, but I guess you're from either US or Canada, so unless you put out a post specifically asking if anyone can recommend one you're stuck with the one you've got.

Sorry I can't be more helpful, but I think you need to keep persevering with your doctors, going to ER if necessary. Is there anybody you can take with you who can confirm how ill you are, doctors are apt to take a bit more notice if you go mob-handed - less likely to bully you into their way of thinking!

Do hope you get some definitive answers soon.