PMR Returns!

[AuthorJ]

An update on my story. in Oct 2024 I successfully got off prednisone after having PMR for more than 4 years. This past winter I was diagnosed with very early cancer and had hysterectomy. Sailed through it all. However with the stress of it all PMR is back. Now, I am in such pain again. Doc gave me a choice of having radiation or not as it was caught early. Thank God for option 2 as I cannot imagine going through 5-6 weeks of 5 days a week of radiation. I can barely get out of bed and need help getting dressed. Thank God for my family and friends

[SnazzyD]

Oh what a rotten turn of events. Glad you were caught early. Yes, radiotherapy can be very taxing; not exactly a few trips to go under a sun lamp! Is it an option further down the line?

Are you on Pred now?? I ask concernedly because you say you can hardly get out of bed.

[AuthorJ in reply to SnazzyD]

Will see oncologist again tomorrow. He said I have 3 options. Internal rad, external rad or do nothing as doc said she got it all. Cannot have pred and radiation. Cannot go 5 weeks as I am. Will go for #3 and get on pred asap

[PMRpro Ambassador in reply to AuthorJ]

Why can't you have pred and radiation?

[AuthorJ in reply to PMRpro]

My oncologist said today that I CAN do both radiation and prednisone!!!!YAY. Started flare protocol today!

[PMRpro Ambassador in reply to AuthorJ]

Sounds more like it. Some patients get it for the burning so I didn't really see why not.

All the best - maybe you will just sail through. I had a BC patient who was saying they didn't want the radiotherapy because the fatigue would stop them doing the voluntary driving they did for elderly patients. I didn't quite get the logic but talked her round, She measured how she was doing by the stairs from the radiotherapy suite in the bowels of the earth on Level 3 to my lab on Level 7! Never faltered once.

[AuthorJ in reply to PMRpro]

Thank you!!!

[SheffieldJane]

So sorry, stay strong, PMR loves stress. 💐

[AuthorJ in reply to SheffieldJane]

Thank you Jane!

[PMRpro Ambassador]

As SnazzyD says, what a rotten turn up - but there are positives in it being found early.

Actually, 5 months is a really common time for people to discover the PMR wasn't quite as burned out as they thought it was and while 1mg was plenty to keep it quiet - zero was a step too far. Then ass in all the stress and it really isn;t surprising.

However - using the flare protocol we suggest MIGHT be all you need: ask to try 5mg for a couple of weeks and drop back to 2mg and see if that holds it. You are due a bit of better luck.

[AuthorJ in reply to PMRpro]

Thank you PMR Pro. Going on pred. Skipping radiation, one of my 3 choices. This decision has wiped me out. But I have faith all will be well.

[AuthorJ in reply to PMRpro]

YES! I can do pred and radiation! Thank you. Have started flare as described above!

[Groggrim]

Hi, we haven't met before but I just wanted to offer my best wishes for your recovery and ongoing treatment. GG.

[AuthorJ in reply to Groggrim]

Thank you. I wish the same for you!

[Missus835]

Well that just sucks. At least it was caught early. I don't know what I would choose, but Pred sounds like my first choice. Ultimately, it's your choice. I doubt I could handle all the things that come along with PMR and radiation. The stress of the diagnosis would be enough to trigger the PMR. Hugs to you. 🌷🫂

[AuthorJ]

thank you Mississippi 835. I got this now since I can do both! Hugs back!