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← Return to PMR diagnosed but now headache for almost a month.
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PMR diagnosed but now headache for almost a month.
Polymyalgia Rheumatica (PMR) | Last Active: Aug 5, 2023 | Replies (18)Comment receiving replies
Thank you for all the comments and information. Back home now from ER where they did a CT scan and bloodwork. CT scan didn't find any vasculitis and doc said no GCA because of that but rather he thinks the headaches and blurry vision are PMR caused. Blood work was wonky but he said that was caused by prednisone for PMR (high platelets, high white cells, high immature granulocytes, low lymphocytes) - OK...I guess that makes sense. But I am now going to rheumo in an even farther off city this Thursday and the ER doc upped prednisone to 40 mg. until then so maybe he's hedging his bets? Making an apt. with an ophthalmologist today because I too am trying to cover all bases. Does anybody else feel like they are quarterbacking the team of doctors without a medical degree? Yes, having a good rheumatologist to do that is the number one priority. I have one that originally diagnosed me but he punts everything to primary who defers back to him and they are both hard to reach; that rheumo is in another city too. Rural health care requires creativity and a good car/driver! A million thanks to everyone who is chiming in, so very much appreciated.
Replies to "Thank you for all the comments and information. Back home now from ER where they did..."
I actually had a headache and blurry vision at the beginning of my prednisone treatment. Once my own cortisol production was shut down, the headaches subsided, but the blurry vision persisted. I think it is a bit better now that I am almost down to 6mg (from an initial 15). I was told by my ophthalmologist that blurry vision is extremely common with prednisone, as are headaches. It is so difficult to differentiate between GCA symptoms and prednisone side-effects.
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I know it’s a lot of travel and waiting, but I’m so glad to hear they were able to rule out at least urgent symptoms of GCA and that you were able to get a rheumatology appointment so quickly (albeit farther away). Maybe if they’re a better fit for you and you get established, you’d be able to do telehealth?
That is interesting the ER doc upped your prednisone dose too. 40 is quite high if he truly doesn’t feel you have GCA, but I guess at least the base is covered and you’ll see a rheumatologist soon.
And YES, having a complex chronic pain/illness I feel requires us to be the quarterback, as you say! It’s unfair and can be frustrating because our healthcare system isn’t set up for this.
I literally just wrote that to someone the other day: “It’s unfair and it shouldn’t be this way, but in many cases we have to be the CEO of our chronic pain. I realized I have to own it, ask questions, learn as much as I can, otherwise wishing the right doctor would tell me the right thing was just prolonging my suffering. It might be better or easier to sit in the backseat and have a doctor tell us exactly what to do, but with these situations we might be waiting a long time for that day to come, face long term consequences or worse.” >_