PMR Returns!: An update on my story. in Oct 2024 I... - PMRGCAuk

PMRGCAuk

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PMR Returns!

AuthorJ profile image
15 Replies

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

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AuthorJ
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15 Replies
SnazzyD profile image
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 profile image
AuthorJ in reply toSnazzyD

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 profile image
PMRproAmbassador in reply toAuthorJ

Why can't you have pred and radiation?

AuthorJ profile image
AuthorJ in reply toPMRpro

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

PMRpro profile image
PMRproAmbassador in reply toAuthorJ

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 profile image
AuthorJ in reply toPMRpro

Thank you!!!

SheffieldJane profile image
SheffieldJane

So sorry, stay strong, PMR loves stress. 💐

AuthorJ profile image
AuthorJ in reply toSheffieldJane

Thank you Jane!

PMRpro profile image
PMRproAmbassador

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 profile image
AuthorJ in reply toPMRpro

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 profile image
AuthorJ in reply toPMRpro

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

Groggrim profile image
Groggrim

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

AuthorJ profile image
AuthorJ in reply toGroggrim

Thank you. I wish the same for you!

Missus835 profile image
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 profile image
AuthorJ

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

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