newly diagnosed

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….

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….

Hi thanks

I’m 67 and live in the uk . I’m used to getting up and going in the mornings, now bits at least 10 am before I can do anything

The steroids are spacing me out , my sleep patterns are all over the place and I’m gaining weight .

This is playing havoc with my moods

I have a doctors appointment today so will see what she says

Has anyone had any luck with changing thier diet to avoid carbs etc

The morning pain varies at best it’s a fluey like feeling and at worse it’s bad pain

Has anyone had their PMR treated successfully with no steroids ; no opiates; no biologicals but with Cannabinoids ONLY to remove pain and reduce swelling?

I was diagnosed with PMR April 2023. there is no rhyme or reason for why some people feel good some people don’t feel good everybody is so so so different even yourself you will notice how sometimes a certain dose works and then will resend it doesn’t work and then a higher dose lower dose it’s a very very confusing. if you feel the dose you’re taking is not working for you your best bet is to let your rheumatologist know. because many times the dose needs to be adjusted quite a number of times and even the medication you’re taking needs to be adjusted bottom line is PMR is no fun! I found I need a lot of patience for this PMR! I wish you the very very best!!! you definitely will feel better it’s just patience very important which I don’t have so much of!!!

I was diagnosed in March 2023, and was very successful with methylprednisolone. Within two days, I was able to walk without pain, but long run, the steroids damaged some tendons, caused swelling in my legs, disrupted my sleep and gave me heart palpitations! I tapered off within six months, but I was back down with terrible back problems. Im now back on prednisone, with the same side effects, but anything is better than suffering with that pain!