Finally remission, let's hope it stays this way!
Posted , 12 users are following.
After 3 years and 3 flare ups I took my last 2.5 mg Prednisone a couple of days ago. Every flare up forced me to start over at 60 mg Prednisone before the symptoms were under back control. After the last flare up in June '18 I started taking a weekly dose of 10 mg Methotrexate, which at least for me did miracles and allowed me to slowly get myself off the Prednisone. With the MTX smaller flare ups were easy to get back under control with only a couple of days of increased Prednisone. My PMR and GCA seems to be nicely in remission. I really hope that it stays in remission. My last dose of MTX was 6 weeks ago and right now I am taking no pills at all other than calcium and vit D! I learned a lot from this forum and am grateful for all who contributed by sharing advice and sometimes misery. Thank you all, but especially Eileen, who was always willing to provide advise and support!
My best wishes for you all!
0 likes, 14 replies
janet06653 koen1
Posted
wonderful! enjoy your good health!
Please let us know if you stay flair free at the 3 month and 6 month mark. It may help!
krillemy koen1
Posted
Congratulation! I just started pred. 3 months ago, and it gives hope to hear you post. Have you gone from 2,5 to 0 mg in one go? As I read it hear people are tapering with 0.5 and 1 mg at the time? This will be difficult here en Denmark as I can only get 5 mg tablets - Good luck 😃
koen1 krillemy
Posted
2.5 was the smallest dose. I think I have been in remission for a while. I took 1.25 mg steps per month from 10 to 5 mg to make sure my own adrenal glands would start producing the steroids again. When I was sure that it was the case I did one month 5 mg and one month 2.5 mg. At 5 mg I also tapered off the MTX. All since I started believing that in the end it was just getting off the Prednisone.
diana21296 koen1
Posted
WELL DONE and Good Luck for the future!
EileenH koen1
Posted
And best wishes to you too! Hope this stays the case though dropping from 2.5mg to zero seems a big drop to me! Wonder if it really was PMR?
Elijo EileenH
Posted
I had PMR for 2 1/2 yrs. I tapered VERY slowly toward the end going down 1/2 mg. every other week. I have not have any more signs of PMR . Myh last 1/2 mg. was over a year ago. I agree with your comment, Eileen
EileenH Elijo
Posted
Good you are doing so well - and drop in to see us now and again xxx
koen1 EileenH
Posted
Hi Eileen, I was diagnosed with PMR for the first 3 months only, but it took almost a year of gradually worse symptoms before that diagnosis. I got instant and unbelievable improvement within hours after my first dose of Prednisone, but then I got worse symptoms including headaches and two impacts on my right eye, one was complete darkening. This only responded when I went to 60 mg. The diagnosis changed to PMR/GCA. This was in September 2016.
Elijo EileenH
Posted
Thanks. I do drop in frequently and sometimes leave "words of wisdom"! I always like to read your comments!
EileenH koen1
Posted
Then you have been doubly lucky! There are people who think GCA is easier to get through than when PMR shows up on its own. All the best.
Anhaga koen1
Posted
Good news. Hope this continues. Unlike you, my intention is, when I get there (quite close now) to taper off a final .5 mg by using 0 as my "new dose" and taking three months to do it, just like my recent several tapers in .5 steps from 2.5.
koen1 Anhaga
Posted
Hi Anhaga, good to see that you are also close to being done with this. I don't know, but the 2.5mg seemed a small step to me. I have been able to handle all of my doses of Pred without side effects. Even at 60 mg I would sleep fine. I never gained any weight because of the Pred. So perhaps that is why purely for the weaning off of the Pred for me 2.5 mg has little impact.
Michdonn koen1
Posted
Good luck Koen1, hope you never HAVE to join us again. Keep Smiling 🙂
koen1
Posted
Update: 3 weeks after stopping with Prednisone slowly stiffness in shoulders/hips and pain in hands/wrists increased to an uncomfortable level. Also my body temperature in the morning rose from around 36.6C to around 37.2C. Misleading was that I suffered from an non symmetrical painful stiff neck, left side only. I went back to my rheumatologist, who originally suggested that these could be symptoms of Pred withdrawal. He also did blood tests. My CRP was 24 mg/L. Now I am back on 5mg Pred, hopefully it is enough to get things back under control. Bummer....