GCA (Giant Cell Arteritis) and PMR (polymyalgia rheumatica)

Thank you for your response. I have an upcoming appointment and will discuss tapering down. Good luck with your journey too.

yes, on my way down from 60mg last August ['22] and now on 6mg. My rheumatologist's aim is 5mg for Christmas. I have an appointment on 9th October. I am feeling much better with the lower dose. Much less fatigue and lumbar stenosis has gone. Mind you , Doctors deny that prednisone has anything to do with the back problem. The last 12 months have certainly been strange times for me.

I am just being tested for GCA!
Its quite upsetting as I was about to ho down to 4 mg of pred!
Began some pain in my head and now suddenly up to 60 for seven days and then biopsy !!!!
Any advice on this strange journey would be greatly ..appreciated.Scared patient!!!!!

Don't be scared because you are not alone in having this concern. GCA is scary but having read comments within the support group how people have done well overall with treatment is encouraging. I, myself, just had the biopsy done recently, and my results came back "least likely" to have GCA (only have an 8% chance of having it).

My journey began 3+ years ago, with very odd symptoms, such as sensitivity to salt. To wrap it up in a nutshell, 15 Specialists and 3 Hospital visits later, I finally found a Rheumatologists that made it her mission to find a diagnosis for me. The day I went into the office, I expected that they didn't find anything since I didn't hear from them sooner. Much to my surprise I was diagnosed with PMR. During my visit, the Rheumatologist asked if I was experiencing any other symptoms. I mentioned to her that I was having double vision for the past 1 to 1 1/2 weeks on an off. I was immediately put on Prednisone 60 mg for GCA. I stayed on that dose for 2 weeks until I received my biopsy results at my next Rheumatologist appointment. With my results being "least likely" my Rheumatologist immediately took me down from 60 mgs to 40 mgs during that visit. Then to 30 mgs the following week, and this Friday I will be going down to 20 mg. The following week I will be taken down to 10 mg. Then I have my Rheumatologist visit again. At that point, she said she would take me down by 2.5 per month, until I'm at 2.5 mgs as my base dose and then she may need to add another medication in to balance me off. Hopefully things will work out and this won't be another roller coaster ride. No matter what, I am grateful for the diagnosis, and optimistic I will get through this too! I am also a cancer survivor.

Any advice on diet whilst on 60 mgs of prednisone would be greatly appreciated
Thank you all

I’ve been having terrible cramps at night in my feet and calves. My fingers cramp mostly during the day. Talked to my PCP and rheumatologist about it and neither had any ideas or if they did they didn’t share them with me.

Hello, I too received no help from docs on the cramping.
I bought a magnesium cream and used it before bed. Figured it couldn’t hurt.
Btw, I’m now off prednisone. Just about 12 weeks I’d say.
I can’t say my troubl are over. It’s like whack a mole!
Now my lumbar pain/ stiffness had returned and no lateral carpal tunnel. Just had surgery on left hand. Got to the point where I could no longer feel my fingers and quite clumsy. I think the prednisone was masking my underlying issues.
I sometimes wonder if the PMR OR GCA will return but more and more just try to stay away from my worst fears that I can’t control.
I was on prednisone for 3 years… I wish all well as you travel this path.

Does the magnesium cream help? I’ve found that sleeping with socks on helps a lot. Sounds crazy I know but I don’t have any foot or calf cramps while I’m wearing socks. Hope your remission is permanent!

I also had finger cramps and in addition to arm spasms/cramps. Not sure how much water you drink, but I found after having a couple of glasses of water, my spasms would go away.

Eat clean. I grilled and baked most of my meats with seasoning only (spices offer a variety of flavors to the meat). No gravy, cream sauces, etc. Eat a lot of vegetables and some fruit. I also watched my carb intake. I drank water and added a grape flavoring liquid to it that had stevia, once in a while for a change of pace. Drink almond milk, a small Gatorade Zero for hydration, etc. and add ice to your drinks. Stay away from soda and sugary drinks and desserts. Most importantly watch your portions. Prednisone can also give you the munchies, so I would make popcorn (kernals - Orval Reddenbacher). In a pot with a lid, add 2 tablespoons of Canola oil on medium heat. Put 1 kernel in and wait for it to pop. When it pops, add 1/4 cup of popcorn kernels and shake the pot once in a while. This will make about a gallon bag of popcorn. Also had for snack fruit and mini pretzels unsalted. I tried to stay away from salt since it was one of my triggers that started a while ago and caused a lot of swelling throughout my body. I also would take Vitamin C 1000 mg, B12, Elderberry, etc. to help with inflammation in addition to my women's multi-vitamin. Also took D3, Calcium for Osteopenia since that is affected as well by the Prednisone. Hope this gives you a good start. It's easy, eat clean and watch your portions!