Adjusting to life with temporal arteritis

My doctor told me that if we did not take care of the PMR, it could lead to GCA. I don't think this happens every time, but rather I believe he was trying to emphasize the importance of taking the prednisone and getting rid of the PMR. I am so sorry you are having a second bout of PMR. Do you mind sharing how you knew you had PMR again? All my best wishes to you in licking it this time! @joybringer1

Ever since having PMR the first time I have thought it came back to visit me now and then. Typically it would be one wrist or the other. This time I could feel something in my hamstrings down the back of my legs for several weeks, they were stiff. But I didn't think PMR was coming back for sure then. Then my fingers started being stiff and weak. I think I had a wrist get really sore for a few days. This was all over several weeks. Nothing to get too excited about until it got into my shoulders and backside of my knees. I started taking Advil which worked getting rid of any symptoms. At first I would take two tablets every other day. Then I started needing Advil every day and I went to my GP and he got me reinstated with my rheumatologis. My GP was going to have me try 10 mg of prednisone but I said I would keep using Advil until I went to the rheumatologist. I had to wait a month to get reinstated with the rheumy. We went on vacation the end of July flying across country to see family. Yeah we were adventurous during the pandemic. I was completely mobile with the Advil but soon needed it twice a day and the pain in my shoulders and knees wouldn't go completely away. If I didn't use Advil I couldn't raise my hands over my head or put on a shirt by myself. Getting up out of a chair was difficult. My hands were also really weak. The backs of my knees would get stiff. Being on the Advil I couldn't really tell how bad off I was. I did stop it now and then to see if I still had symptoms. I had to stop it a few days before I went to the doctor so they could see how bad off I was. I have heard I am lucky that Advil works for me because it doesn't for most people. Prednisone worked immediately again. It lasted about 20 hours the first day I took it before the pain started coming back. Then day two it lasted about 22 hours and since then no pains. Sometimes now and then I think I might have a headache but it doesn't last and it's not that bad. I never usually have headaches though. I'm at 10 mg now and should be going down to 9 the end of next week. I started at 20 then 15 to 10.

I bought a book about giant cell written by an elderly man. Have any of you read it?

Just got my CT Scan results on stomach and thankful all clear. CT scan on lungs earlier was also clear. Doctor decreasing me from 12mg pred. to 10mg. He will keep decreasing 1mg a month after. Perhaps the unsightly neck humps will start decreasing and eventually disappear as doc has ruled the swelling is from the steroid and not due to swollen lymp nodes. Just want my body builder image to go away.

@delilah2020, That is really good news that your CT Scan results were all clear and that you are now able to start decreasing the prednisone dosage. Thanks for sharing the information.

@654321, Is this the book you read? Giant Cell Arteritis: One Man's Exciting Experience by Mason Clark - https://www.amazon.com/gp/product/B0111762UM/ref=dbs_a_def_rwt_bibl_vppi_i0

I have not read the book but reading the intro it seems to be a really good book written from a patient's perspective with a lot of information on both PMR and GCA.

I will send it to you a s you can read and send it to others who might want to read it.

Hi Delilah...thank you for your words of encouragement...The humps are sticking with me for a while I guess as I am still at 25mg of prednisone. When I attempt to lower the dosage under my doctor's guidance, symptoms come back and I have to go back up for an extra week....Tomorrow I will try 20 mg. and see how that goes. The rheumatologist called me on Friday and is going to try and fit me in this coming week. He cannot understand why he was not contacted sooner but I told him that my family doctor was making the decisions as to the course of action. Hopefully, he can give me some new insight on things. Do you also still have over whelming exhaustion? Whenever I do anything like a bit of baking, a quick trip to the store or even walking up & down a flight of stairs, I sweat to the point of my hair being wet. I think the is my most upsetting part of this disease...Hang in there and we will get thru this...

I do pretty good. I know if I overdue my overheating seems to happen and I'm then fatigue. Hate grocery shopping as I always feel by the time I get to register I just want to leave the groceries and go. Have the hair sweat really bad to the point of using kleenex to squeeze the dripping out. I always feel people at grocery are staring at my due to it and thinking SHE must have a fever. Have had the head overheating problem before diagnosted with PMT. It seems to happen when I overdue. I have COPD/ Asthma also diagnosed years ago. Also old case of Lymes found on testings in June 2020. Wish I had more than GP sometimes guiding me but he does seems to be helping and knows how to decrease prednison. He has checked thyroid for the overheating but a okay. I often wonder if to much medication causes the overheating? I also want to loose more weight and I think that is the biggest hurdle I could do to help myself even exercising small at first and working upward. Being more aware of bad carbs and sugar in foods also will help us. We will be winners.

Hello Delilah 2020,
Your hormone level might be off, and that causes the head sweats.
My cousins wife had the same problem, back in the 1950 and 1960s. Fay was very heavy about 300 plus pounds. She got a diet doctor, lost 125 pounds, most of her Rx was watched. What also helped was she got very short haircuts, and dressed lightly , even in winter.
It’s possible you are dressing too warm for your grocery shopping.
Have you thought of carrying a small bottle of water that you keep in the freezer?
And lastly, could it be anxiety, or stress?
Hope you get relief, but number one is to lose weight. As you know. Being overweight will cause many health problems.
Funcountess