PMR diagnosed but now headache for almost a month.

That does sound troubling. I’m sorry this is happening to you. My family has definitely also been in that boat of the emergency happening on a weekend or holiday…

The month-long headache and vision changes do sound suspicious in the context of PMR with there being such a high risk of GCA… It’s my father who has PMR (I am his caregiver). We never got confirmation on if he had GCA or not—he had a severe stroke shortly after being diagnosed with PMR =(

Not trying to scare you, but that’s literally what happened. The hospital said it wasn’t GCA, but I know there’s no way they’d know.

Anyway. I recall his rheumatologist also saying “scalp tenderness” is very common with GCA, if that helps you at all to know? For example, it’s usually very painful to brush your hair. That happened to my dad, but the symptom went away after he started his initial prednisone dose.

Because of all that, I’m glad you went to the ER but disappointed the NP wasn’t familiar with GCA. And it’s situations like this that make me wonder, “Can’t medical professionals Google things??”

I agree it’s worth checking out—looking into GCA and/or the vision changes. Who is treating you for the PMR, and can you follow up with them to ask?

A good place to start might also be with running labs to see if your inflammatory markers are up. Did they do that at the hospital?

It’s also possible it could be another condition causing it, even another or different inflammatory condition.

Hello @5333, I would like to add my welcome to @emo and others. I'm glad that your symptoms started improving and the headache went away when you upped the prednisone to 40mg. GCA is not something to mess around with and if it were me, I would seek a referral to a rheumatologist as soon as possible. Here's some information from Mayo Clinic on GCA.

"Giant cell arteritis frequently causes headaches, scalp tenderness, jaw pain and vision problems. Untreated, it can lead to blindness."
--- Giant cell arteritis - Symptoms and causes: https://www.mayoclinic.org/diseases-conditions/giant-cell-arteritis/symptoms-causes/syc-20372758

@tsc @oztrax @artist01 and others who have experience with GCA may have additional thoughts or suggestions to share with you.

Thank you so much for your reply. I am going to travel to another city this morning to a bigger hospital. This Mayo Clinic group's sharing info literally is amazing and helpful. Because of the varied way that these autoimmune conditions present, sometimes little details don't get shared in a short doctor office visit. And getting information is really important in managing everything. Trying to get healthy with PMR and all the stuff that can happen; from prednisone side effects to possible GCA is just a lot.
Learning what happened to your dad, the symptoms, and the way the initial prednisone dose affected them helps me because it's similar. I can't thank you enough for your reply!

You’re so welcome. You’re right, it is definitely a lot. It sounds like a good idea to try a larger hospital. I know it takes a lot of time and you may even feel self-conscious, but I’d much rather be certain and have the peace of mind. And suspicion of GCA is an ER-worthy scenario specifically because it can cause blindness. We were prepared to take my dad to the ER if we couldn’t get him in to someone to provide a prednisone RX and consider PMR, but eventually his PCP provided the RX.

Also, as @johnbishop said, if it were me I’d establish with a rheumatologist as soon as you can. Wishing you fortitude today and moving forward!

Hi @5333, I was diagnosed with GCA and had PMR for a year previously. My diagnosis was confirmed by temporal artery biopsy. I had short stabbing pains from my ear to my nose, some problems seeing out of my right eye tro and a severe very painful stiff neck. The rheumatologist perscribed 40 mg prednisone, based on my size, about 100 lbs.
What I've learned from this site is that most that are diagnosed with PMR are toldd to be on the alert for symptoms of GCA. In this circumstance, you were correct, I think, in upping you dosage of prednisone. As @johnbishop and @emo mentioned, it's best for you to see a rheumatologist as soon as possible. I wish you the best!

@5333 and @emo
Oh my goodness! Yes!
@johnbishop is so right. You must hasten to a rheumatologist.
My GCA began with extreme fatigue and persistent and severe pain and tenderness of my scalp and the side of my face. It was so bad that I attended the hospital emergency department FIVE times before a diagnosis was made. By that time, I'd lost the vision in my right eye. Permanently. That was in 2019. I was immediately sent straight to the hospital from the doctor's office and given 3 days of prednisone by intravenous in order to stop blindness in my other eye. After about a year of prednisone I was put on Actemra (a biologic), and easier medication, by weekly injection. I've had constant Rheumatologist care, which is so very important, especially since GCA is such a rare disease that most of the medical world knows nothing about.
Only this week, my Rheumatologist newly diagnosed that I have Fibromyalgia, which he told me often goes with GCA. I've suspected it for a long time.e but I have so many other conditions I didn't want to seem like a hypochondriac and ask if I had that one too. Lol
It's been a long ride and certainly not a very nice one, but with a good Rheumatologist and your family doctor looking out for you, it can be done to your best advantage! Good luck!! Warmest wishes, Laurie

Thank you for sharing that, and I hope you're doing better. I think I may one day quote you with: "You must hasten to a rheumatologist" lol. I feel that captures the urgency.

Since you mentioned fibromyalgia--that was actually my last (so far) diagnosis, after diagnosis of my inflammatory arthritis and a conglomeration of other things. Ultimately, the physician who diagnosed me told me it's very common to happen with these other conditions. He said it's thought to be because being in pain for so long with these chronic conditions, especially when it can take so long to diagnose or treat effectively can alter the way the brain/body process pain...leading to fibromyalgia. So we're definitely not hypochondriacs!

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.

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.” >_

Could you describe your stabbing headache pains in a little more detail? Were they unilateral or bilateral? Where were they located. Did you ever have them in your temple? Were they just seconds long or persistent? Were you still on prednisone? If so, what dose?

Thanks!