Symptoms coming and going in severity

Posted by paulagcl @paulagcl, Jul 10, 2023

I suddenly am having symptoms after having none for a couple of months once I was started on medication. Now headaches so I am in panic mode that it is progressing to GCA. My doctor responded with "keep an eye on it." From what I read people say about higher doses of prednisone, I am finally facing the reality of this diagnosis.

Interested in more discussions like this? Go to the Polymyalgia Rheumatica (PMR) Support Group.

I know this is complicated! If prednisone is the medication you are on, one of the side effects is headaches. Praying you can get the help you need.

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@paulagcl, Did the symptoms reappear after lowering the dosage of prednisone you were taking? If so, it could be that the dosage was too big of a drop or tapering down was too soon. Each of us are different and you really need to work with your rheumatologist on a tapering plan while watch for symptoms of GCA. I would definitely talk to your doctor about the headaches.

Here's another discussion you might find helpful:
--- PMR Dosages and Managing Symptoms: https://connect.mayoclinic.org/discussion/pmr-dosages/

REPLY

As mentioned, headaches aren't unusual with PMR or Predisone. Are the headaches unusual?
Here is what to watch out for.
Mayo Clinic:
"The most common symptoms of giant cell arteritis are head pain and tenderness — often severe — that usually affects both temples. Head pain can progressively worsen, come and go, or subside temporarily.
Generally, signs and symptoms of giant cell arteritis include:
Persistent, severe head pain, usually in your temple area
Scalp tenderness
Jaw pain when you chew or open your mouth wide
Fever
Fatigue
Unintended weight loss
Vision loss or double vision, particularly in people who also have jaw pain
Sudden, permanent loss of vision in one eye.."
If you notice these symptoms, call your doctor again. I hope they mentioned what you're keeping an eye on. (no pun).
Further, the reason we take prednisone is to avoid getting GCA. As long as the inflammation is kept in check, you're fine. Make sure you take Tylenol as acetaminophen and other NSAIDs aren't good to take with steroids.

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