Worried about GCA

@michik, Sorry to hear you are also having GCA type symptoms with your PMR. I would contact my doctor's office or possibly a rheumatologist as soon as possible and make them aware of your symptoms. They can give you guidance on how much to up your prednisone dosage or possible alternative treatments. Teri @tsc has experience with GCA and may have some additional thoughts to share with you.

Can you call or connect electronically with your doctor tomorrow to report symptoms? I would not personally increase my prednisone without communication with a doctor. I have concerns about GCA as well. I have had a headache at my temple for the 3.5 years I have had PMR and my doctor is always concerned about it but no vision changes or elevated inflammation markers. Sometimes it gets worse, I have other head symptoms, and I wonder at what point would I go to the ER. Research showed 25% of people with PMR have subclinical (no symptoms) GCA. It does create worry when GCA has so many possible symptoms. I try to stay calm but pay attention.

I would say that if you're not having vision problems, you're probably ok staying on your current dose of prednisone until you consult with a doctor. I was diagnosed with GCA last June. I went to the emergency room for transient vision loss, and GCA was diagnosed and confirmed with a temporal artery biopsy. I had other symptoms for a few months leading up to the vision loss, including some of the ones you mention - night sweats, and pain in the cheekbones and above and behind my ears. I also had a lot of fatigue in the muscles used for chewing, occasional scalp tenderness, and a low grade fever for several months. I never had any headaches. I was hospitalized for 3 days to receive daily infusions of very high dose prednisone, and then I took 60 mg prednisone for 6 weeks. I've slowly tapered the prednisone since then.

Hi @michik, I never had night sweats or jaw pain, but I couldn't see out of my right eye three times and had shooting pains from my ear to nose, sometimes 25 in a day. Also, a dry cough at night, a scalp tender to the touch, a very itchy torso and loss of appetite.
I was initially given a lower dose of prednisone for PMR, but the rheumatologist my PCP referred me to increased it to 40 mg a day (I'm petite) and scheduled me for a biopsy of the temporal artery. It was positive.
A doctor friend told me to go to the ER immediately if I had any visual disturbance (This was after I was diagnosed).
I agree with @johnbishop. Try to get in touch with your doctor asap or do go to the ER, especially with visual disturbance.
I wish you the best!

Thank you all for your quick responses. It is really helpful and I so appreciate it. I have not been referred to a rheumatologist as yet. Where I live it takes a long time to get on the lists. At least my vision is no longer blurry since I have upped the dosage to 17 mg which is a relief. As soon as possible I'll connect with my GP. If anything worse develops I'll go to the ER. Thanks again very much.

In 2008 my mother had GCA at age 87. I took her to specialist after specialist and no one ever mentioned GCA. After a few months she woke up with blurry vision and at that point I took her to the hospital. Luckily for my mother she was attended to by an outstanding rheumatologist (NY metroplolitan area) who immediately reocognized her symptoms as GCA. She was started on 80mg prednisone, her symptoms immediately disappeared, and the next morning she had a little biopsy of her temple red blood cells which confirmed GCA. My mom did really well over a year's time until she was slowly weined off the prednisone. The GCA never came back. Her blood was checked every 3 months by the Rheumy for a few years after. Currently I have PMR and am doing very well with methylprednisolone. For me, that works much better than regular prednisone. My dose is 16mg/day. I take 4mg at 1am when I need to use the bathroom and then I eat a banana around 6am (next bathroom stop) and take the rest which is 12mg. My Reumy says it is better to take the meds in the AM since that is the normal time that your body makes cortisol. I feel myself. I just started 3 weeks ago 16mg (methylprednisolone is a bit stonger than regular pred so a lower dose is prescribed). I am round the clock with no symptoms. Just an FYI, Facebook also has a support group called "Living With PMR". People participate from other countries like Canada, UK and Australia. Those folks are given PREDNISOLONE, not PREDNISONE. Prednisone must first go to your liver to be converted to prednisolone. Prednisone is already what you need. Just an FYI.... my cat is on prednisolone, not prednisone. Cats cannot metabolize prednisone. There liver cannot do that. Wish you the best!

"People participate from other countries like Canada, UK and Australia. Those folks are given PREDNISOLONE, not PREDNISONE."

I don't really know why this is. It seems to make little difference about which one we take except prednisone is called a "pro-drug" because the liver converts it to the active form prednisolone. Prednisone might be slightly cheaper and was FDA approved earlier than prednisolone. Both medications are used in the same way and have the same side effects regardless of country.
https://www.drugs.com/medical-answers/difference-between-prednisone-prednisolone-3508888/
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Medical professionals in all countries seem to agree that there are serious consequences to the long term use of all man-made glucocorticoids. They replace the natural cortisol that is produced by the adrenal glands which is why a slow taper off Prednisone is needed after long term use.

Short term use of prednisone is relatively safe but "short term" is a few weeks compared to years of treatment for PMR.

I think the USA is embracing biologic treatment rather than long term treatment with Prednisone for the treatment of many autoimmune conditions. It seems that relapses or flares are more common when Prednisone is used which makes it nearly impossible to discontinue Prednisone. I'm on a biologic which seems to have far fewer serious side effects but I'm having difficulty stopping the biologic and it is very expensive. There isn't a single best solution to these problems.

The differences between methylprednisolone vcompared to prednisone are explained in the following link.
https://www.drugs.com/medical-answers/difference-between-methylprednisolone-prednisone-3509126/#:~:text=Both%20methylprednisolone%20and%20prednisone%20belong,severe%20and%20requires%20reducing%20quickly.

Correction in my comment. PREDNISOLONE is what you need. The prednisone is converted to prednisolone by the liver.

You made the best decision in the
situation we are in with diminished access to doctors in urgent situations. Our local ERs
have half day waits and are full of
respiratory illnesses.
Most urgent is to see an ophthalmologist for an exam.
When you get in contact with your PCP they could at least send you to the lab for inflammation test screen in the meantime. If the eye doctor can’t readily biopsy you an ultrasound can be helpful in diagnosis. Request a timely appointment with a rheumatologist as they have the most experience managing higher
doses needed if you have vasculitis.

Thank you for the info. All of this is really helpful. I am in BC, Canada.
I was prescribed Prednisone. I am grateful that it is a cheap medicine as I have to pay for it.