Recently diagnosed, symptom question

I was concerned about possible weight gain when I started Prednisone, really don't like to eat first thing in the morning but wanted to take it right away without having an actual meal. Compromise was a few bites of bread and a cup of water or tea, doesn't take much.

michik,
Thank you for sharing your story. You sound like a wonderful person and patient as well.
I'm glad you're doing better. Your description of the conundrum that is PMR and trying to find one's way through the multiple mazes is spot on...for me anyway!
I wanted to ask you what you consider a level of pain you can live with or as you stated " least amount of discomfort."
I am not medicated and have never received a diagnosis of PMR though I did see a rheumatologist, had labs several times and an ultrasound. But I can tell you, I sure check all the boxes! But I am able to function, certainly not as I did pre-PMR (before Jan '24). I, too, was very active and physically fit...a way of life for me for decades. Now, I can walk briskly for 1/2 hour and do some strengthening, mainly lower body as arms are too sore.
At any rate, I wish you the very best and hope you're back to hiking, walking and a pain level that decreases from very light to non-existent. Sending you light but I have this feeling you are awash in it already.

Hello Glinda47,
Thank you for your kind words and I am so very sorry to hear you are dealing with pain that has altered your way of life. It is very discouraging when this starts to affect your daily activities but there is no diagnosis and you are still trying to sort out what is going on. That was certainly the case for me for many months. My neck, shoulders, lower back and pretty much from the top of the hips to mid thighs were all involved. Pre diagnosis it got to the point that the pain would wake me up when trying to shift position in bed. Mornings were especially bad. I forced myself to move because I found the more I did the less I would hurt throughout the day. Though certain activities would make it worse. I went to a chiropractor seeking relief and later a physiotherapist who tried a couple of sessions of IMS. The second time I went she said she believed I should see my family Dr as she felt this was possibly more of a rheumatoid issue. So I went, he listened, blood work was done and the PMR diagnosis came about. The prednisone by the 2nd day had taken 90 % of the pain away. I experienced some stiffness in my shoulder and hips but this was nothing compared to pre prednisone. It's mostly gone by 10 AM or so depending on the activities of the previous day. So to answer your question if I can continue to slowly decrease the dosage and maintain this low level of discomfort I'll be thrilled. I am still always very active. Walk a lot with my wonderful dog, about 5 to 7 KM a day, work on our property, gardening, housework etc.
"The side effects of prednisone are no fun, but it could be so much worse, so I feel lucky that compared to where I was last fall I'm doing so much better. I hope to get to the pool and the fitness center once they reopen and maybe back to taichi.
This is not an easy journey! There is so much you have to find out on your own, often when you feel overwhelmed by it all. I do hope you get answers with your situation and some relief soon.
Please don't hesitate to connect with me if I can support you in any way. This forum has so much information but it's not always easy to find what you need. I'm still at the bottom of the learning curve myself for sure...LOL...
Sending you all the warmest wishes and lots of that light you too are basking in.

I too mine like that divided the dose up. I have giant cell ..was diagnosed in July 2034 ..caused me to have an eye stroke ..I’m 61 Been on prednisone since July. Tapering down now .. the prednisone has been very hard on my. My nervousness system ..I have had stuttering problems now

Hi @sjf1024, Your symptoms are typical.

This from Goldman and Cecil Textbook of Medicine, Chapter on PMR and GCA:
"The musculoskeletal hallmark of PMR is proximal, severe and symmetrical morning and even day-long stiffness, soreness and pain in the shoulder, neck and pelvic girdles."

When I had PMR (before diagnosis), I felt like the Tin Man in the Wizard of Oz most of the day with pain and stiffness on a scale of 12 out of 10. It eased up a bit at night, which gave me hope for the next day, but the pains returned every morning. I did stretches in bed before waking up, but that didn't help.

I hope your treatment goes smoothly.

I always drink about 4oz of water (1/4 cup) before taking any med to "wet down" the esophagus, then take the med with about 6-8 oz of water. My family doctor over 50 years ago taught me to do it - it works so why change. Getting meds stuck the esophagus can me scary - it is avoidable.

@jabrown0407
Hi there!
It also helps to take prednisone with alkaline water, water that has been adjusted to +9.5 pH. You can get it where most bottled water is sold. Smart water makes one, and most markets have their own brand. It is also purified and filtered , with electrolytes added for a wonderful flavor. Taking a few sips before you take your pills is also a great suggestion!
Take care and be well!