newly diagnosed

Okay, the pain (that comes from the swelling/inflammation) is secondary. Personally, if my PMR hadn't hurt, I wouldn't have cared that much, at all. Though at some points, certain amounts of just plain stiffness can be debilitating in and of itself. True. I do know that the goal of taking the Prednisone is to then titrate it down. However, it can not always be controlled, as in my case. I never plateaued at much less than 20 mg. That turned out to be too high for me to live at long term. I gained 90 lbs during trying it. Both of my feet broke and since my center of balance changed so fast, I also fell more than once or twice. I was living in Alaska where everyone falls on the ice, at least once a year. Me, more often. In fact, I had 8 broken bones by the time I left Alaska, just to get my feet repaired (my ins. did not cover foot surgeries). Likewise, I wasn't predisposed to Glaucoma at all, yet, I got it in both eyes. And live with damage now to my left eye, even with 2 laser surgeries that have made it stop.

I am glad its working for you. I believe it usually does work for those with PMR. If not Prednisone, other drugs. I was not offered any alternative medicines, we didn't even have a Rheumatologist that I could get to. An NP handled it and I still believe she did the best she could. Though she could have discussed my weight gain with me, and a good many other side effects of Prednisone. People often assume the whole world (or all the USA even) have TV, cable, and/or Internet fast enough to watch videos/news. We didn't. Thank God, it works for you, and most with PMR. My point (and experience) is that Prednisone is not the one size fits all solution. I did, in fact, get remission from the PMR. Leaving the extreme cold, and spaced out small steroid injections to my spine problems, did it, along with minimal hydrocodone before and following foot surgeries.

Hello to my PMR support group!
This is going to be way off topic but I could not find another group to discuss my grief.
Recently I had a cousin who passed from stage 4 pancreatic cancer.
She was a beautiful person who had great faith in her religion (we are catholic) yet she could have a raunchy sense of humor with a potty mouth—one of the things I loved about her😂😂.
She was my late night texting pen pal! We both had insomnia and would text on our phones in hopes of tiring each other out! She was not just my first cousin, she was my best friend.
About 3 years ago she was diagnosed with diabetes. Her doctor put her on low dose metformin. She was overweight at the time so she went on a diabetic diet and started to lose weight. She was losing weight a little too fast, I thought, and was also experiencing stomach pains. Doctor told her it was from the medication and that it should go away.
I should tell you at this time that she had an older sister who passed away 17 years ago at the age of 58 from pancreatic cancer.
Now after a couple of years of excessive weight loss with stomach pain they finally order a cat scan on her and find stage 4 pancreatic cancer that has spread to her liver!
I’m angry —her doctors could of done that scan when she first had those symptoms and caught it at an earlier stage when she could of had a better chance of survival. She had a family history of this type of cancer !
I did some research and found that diabetes can be an early symptom of pancreatic cancer in some cases.
So my cousins brother is the survivor who has lost two sisters to pancreatic cancer! Now his doctor says they will do testing on him every year because of his family history…🥲
When I can’t sleep at night I think of my cousin and best friend who was so loved by her family, her children and grandchildren….I feel such intense sadness and disbelief that we will never see each other again. We were planning to get our family together for a restaurant lunch, but we waited too long—she started chemo and had such horrible side effects and of course she could not go out in public with her immune system so messed up. I could not see her after she got sick.
The lesson I learned was don’t keep putting things off and just do it!! I love and miss you so much, my dear, sweet cousin🥲🥲
Thanks for listening to my vent….

I never know what to say but I can read. You can vent as much as you wish.

@dadcue
Thanks, Dadcue. I’m sorry for posting this and hope I didn’t make anyone uncomfortable. I was feeling sad and weepy and thought if I wrote it all down it would help.
It did, in a way If they had started her treatment 3 years ago would she of had a better chance of survival? I would like to think so… they started her treatment so fast when they found it, it was like the doctor said”oh crap” and went full speed ahead to treat her!
I thank everyone for your thoughts and words of compassion…you are awesome! ❤️💕❤️

You have started on a lower dose than most of us. That might be because your Doctor is unsure about your diagnosis or your blood results indicate a lower level of inflammation. PMR can be difficult to diagnose because the symptoms are similar to other arthritis and rheumatoid conditions. In classic PMR cases, the patient is crippled with pain and stiffness due to extreme unrelenting inflammation and within a few days of taking 20mg Prednisone is completely pain free and functioning normally again (this is only temporary). This is a diagnostic sign that the patient has PMR and not some other condition.

Don't apologize. Most of the things I post make me teary-eyed. I think writing it down and posting it helps me too.

I have a hard time telling anyone verbally because then I get full of tears. I figure if I can write about it and not get teary-eyed I'm beginning to get over it.

I have talked to a therapist about the tears. She said it was medical PTSD. I think it happens to people when unfortunate medical things happen whether it happens to you or someone else.

Hi

Yes my markers for imflamation was not too high . I’m now down to 12.5mg and hopefully can taper down based on guidelines

The side affects of steroids are not good so want to ( hopefully) reduce quickly but will be dependent on the pain starting up

Does anyone know what timescales to use for each reduction and amounts . Advice seems to vary

@dadcue
That is really interesting about medical PTSD! My husband and I both get teary-eyed watching you tube videos and some movies, lol. We just thought it had something to do with aging! It makes sense, medical PTSD. Thanks 😊

I'm so sorry for your loss. Feel free to vent, that's what support groups are for.
The jewish expression at times of loss is "May her memory be a blessing" .
Maybe, eventually, in time you will be able to appreciate the good things as the pain of loss becomes less immediate. I know of people who changed their lives for the better, in the same way that you plan to, for the same reasons.

There are general recommendations and medical protocols for a Prednisone dose reduction schedule but if you read through some of the posts on this site on the topic of 'tapering' you will find that many of us have to work out for ourselves what we can tolerate. The simple general rule of thumb is no more than 1mg per month. How you do that is up to you. I tried several different reduction schedules and found that reducing by 0.25mg in weekly intervals was the least stressful on my body. Many people cope with a 1mg drop with only minimal adjustment aches and pains. However if you experience a significant ramping up of pain and stiffness, go back to your previous dose and stay on it for another few weeks before trying again. The goal is to achieve a slow steady reduction in dose, without flaring up the inflammation, allowing your adrenal gland to start producing its own cortisol again. It's a delicate balancing act which requires you to be tuned in to all the factors that could be influencing the inflammation response.