Update on my neurology appointment- not sure where to turn next?

[Bro-]

Went to a neurologist yesterday and it was the worst appointment I’ve ever had! Said it could be an extension of Covid because my arms and legs were tingly and my face and chest were flushed well obviously they were !! I’m on high prednisone my anxiety and blood pressure is through the roof right now . Suggested I see an infectious disease doctor. - I said I am diagnosed with PMR & GCA And he disregarded all those symptoms. So I came home and called my eye doctor and he basically said I’m gonna start lowering your prednisone a little bit and see if the symptoms come back snd my GP said the same thing I went from 60 mg now tapering to 30mg and all my GCA symptoms are coming back I don’t know where to turn I haven’t seen a rheumatologist yet I feel like I’m driving my eye doctor and GP doctor crazy- the tingling in my feet and hands have subsided somewhat from the lower prednisone and the the severe headaches and pain come in episodes. Very heightened in morning or after a nap when my head is flat . Once it’s elevated and I ice it I get relief. Sorry for this long post but any suggestions where to turn or just stay with eye dr and GP

Merry

[SnazzyD]

So, your symptoms of tingling and flushing could easily be high dose Pred effects and also some of those who have had Covid, however mild, also report these symptoms. There is rather a smoking gun in the 60mg.

Remember please, that IF your medical people are going “crazy” it is because they are not able to put you into a nice neat box with a label, give you pills and it all goes away. It isn’t your fault.

The first place to go is the GP to say the experiment has failed and demand a rheumatologist who specialises in GCA. This is beyond the scope of a general doctor. Although GCA can affect the eyes, it isn’t just an eye problem, so unless they have extensive experience of dealing with GCA beyond the ocular area, they need to bow out perhaps because it could be in the other arteries of the head. Perhaps find out what their plan is from here. Keep a good diary of dose and symptoms. Tapering this fast alone can make you feel dreadful.

When my GCA was flaring up in the beginning, lying down was not pleasant and early morning was the worst.

[Bro- in reply to SnazzyD]

Thank you! Yes I’m calling today and set up rheumatologist appt. From what I am reading they suggest a team of doctors and I’m only at the beginning phase so I’m not stopping

[Bro-]

Thank you! Yes I’m calling today and set up rheumatologist appt. From what I am reading they suggest a team of doctors and I’m only at the beginning phase so I’m not stopping

[PMRpro Ambassador in reply to Bro-]

"From what I am reading they suggest a team of doctors"

Who does? It depends where you are - in the UK you will get a rheumatologist. Here in Italy I will get a rheumatologist. In both cases the GP will do the donkey work. In the USA you appear to be able to assemble an array of doctors to take your money. As you have found - that doesn't make them any better!

By the way - your ages as quoted on your profile and your thumbprint biography vary - one says 40, one says 54!

[Bro- in reply to PMRpro]

I agree with you about too many doctors. I’m going to stick with my GP eye Dr and see a rheumatologist. I am 54 edited my profile a couple times with my birthdate hope it works now

[MsDirecto in reply to Bro-]

I am in the U.S. I had switched my primary care from from GP to Internal Medicine dr last fall, and glad I did. She is a very thorough diagnostician. Not warm. All business. But good.

I was already eady seeing rhe rheumatologist for osteoporosis. He is not in the same group practice: he is on his own. My PCP said she could have managed the GCA treatment, but turned over the managements of my GCA to rheumatologist- did not want to have too may people driving the bus. . I still get checked by her abut every 6 months - sometimes by Zoom, sometimes in person. When I had a severe infection in my arm in August, she managed that part of my care. These 2 doctors had not worked together before, but they seem willing and able to managecooperatively., and the we all can access my lab tests through digital shared records. If some other situation arisies, iy could be interesting to see who might be in charge.