5 Year Anniversary of PMR/pred

[PMRCanada]

Today marks 5 years since I was diagnosed and started pred. It was a game-changing day after 5.5 months of undiagnosed pain and stiffnesses that started in my knees and worked its way up to my neck/shoulders. It was a huge relief to know what was causing my symptoms, however I was SO fearful to start taking pred.

My journey to lower my dose and to adjust my lifestyle to life with a chronic illness has not been straight forward. However, along the way I’ve developed more patience and learned how to listen to my body and advocate for my health. I have come to accept my condition and continue to learn what I can control and what I can’t.

Through it all the kind, informative folks on this forum have been with me, by my side, helping with compassion and understanding. Thank you all!

[Hunter134]

This forum is the best.So many educated people.So happy you seem to be doing well finally.It can be a long journey for some of us.Iam still on 10 mg aft having a relapse in 2019.Stresses in life have slowed me down.I know I ll get there one day❤️

[PMRCanada in reply to Hunter134]

Yes I faced my share of stresses the last 6 months or so, grief/loss of my step dad and mom back to back. And a string of illness during that time as well. But I’m back on track now and hope to make it down to 5mg someday.

Hope you get to where you want to be as well.

[Hunter134 in reply to PMRCanada]

Thank you.I hope we get there one day.Sorry for your losses.It seems when it rains it pours.You seem like a strong lady!!??

[Alebeau]

We are in the same boat as it will soon be 5 years for me as well.

A very rough path as I constantly yoyo and I had a huge relapse recently so am now stuck at 14 mg which is like starting the 5 year clock over again.

Good luck to us 2 Canadian sufferers 🙂

[PMRCanada in reply to Alebeau]

Yes, I have been following your posts/journey. I feel for you during your struggles with Leuf. and side effects. So disheartening when we have to up our dose after trying to lower it so diligently….but we need what we need.

I do have some fear of stopping MTX because when I did for 3 weeks once, all the PMR pains re-emerged. At least I know that I can stop it if need be, unlike pred. I also take comfort in knowing I’ve been able to lower my MTX dose and still achieve the same results I did at higher doses of it (almost back down to 6.5mg pred).

[Wizards in reply to PMRCanada]

Hi Friend As you know my journey was just shy of 8 yrs. I never had any relaps but I did my journey slow with up to several months before reducing again.

This is a wonderful site for information, compassion that many of us need and only those who suffer can totally understand. For several of us we've even met new friends like you.

I look forward to meeting with you again when we're both healthy.