Connect
Predisone
I started having back pain and night sweats after 3 weeks of predisone, the pain migrated from lower spine to thoracic, cervical, scapular and sternum. Stayed on prednisone for 3 months, now on Mycophenolate. Those symptoms continue and also have abdominal, pelvic, thigh and knee swelling. I have not been given a reason for these symptoms after seeing numerous doctors. Anyone experience anything similar?
Like
Helpful
HugInterested in more discussions like this? Go to the Autoimmune Diseases Support Group.
Connect
Good morning!
I too am dealing with GCA/PMR since April. I’ve had Lupus, diabetes & Hashimotos for 30 years but this most recent diagnosis has been hard. I was lucky enough to get into Mayo for 2 weeks, albeit through the ER. I’m now recovering well but have to get off this prednisone. The side effects are not good. It was great at the beginning on 60 mg. Finally the inflammation was better so I felt good. My CRP was 266 in the hospital, sed rate 78. Now they are normal. I’m slowly tapering, down to 20 mg/day. Just waiting for my Actemra to be shipped to me so we can see if that will allow me to go under the 20mg prednisone without relapsing. In a little nervous about the taper; had a bad relapse in the hospital when they tried. I just dropped to the 20mg yesterday & already have headaches, more fatigue. I’m hoping that the Actemra works for me.
This autoimmune stuff is tricky. Not sure if these symptoms are the GCA or due to prednisone taper itself. I can’t believe I’m saying this but Lupus flares were easier! My Rheumatologist thinks I’m in remission from my Lupus. It has taken a back seat to the GCA.
Thanks for letting me share!
-
Like -
Helpful -
Hug
1 Reaction@momac59 so sorry you have been dealing with this for so long, I know it has to be a constant worry. I could not agree more that the prednisone adds a whole new dimension of worry. It’s a worry to be on it but also a worry to go off it! I tried to get into Mayo but no luck.
Best of luck to you on continuing your long journey!
Deb
-
Like -
Helpful -
Hug
2 ReactionsOrdered Nutranize online. 2 pills in am and 2 pills in pm. The pm dose also helps you sleep.
nutranize.com May be a little expensive but has worked very well for me.
megan@prednisonepharmacist.com She has website about Prednisone and chart to follow that helps when reducing prednisone if your doctor doesn't. (I've been on it for almost a year 🙁 but am weaning off)
-
Like -
Helpful -
Hug
1 Reaction@istraz34 The side effects of prednisone are real, and troubling, so we are always looking for ways to feel better. I am fortunate to be off steroids (for now) but they make a frequent appearance in my life, so I read this thread with great interest, right up to the point where I saw the price of Nutranize. Wow!
Web site sales of supplements are the MOST expensive way to buy, and the most profitable for the seller. Playing the skeptic here, I compared the label of Nutranize with three different name brand 50+ multivitamin formulations, and found that 90% of the ingredients were the same, and the dosages were very close. The multi-vitamins cost around $12 - 30 for a 3 month supply, Nutranize costs $105 for a one month supply.
BUT, you say, Nutranize adds Cassia bark, berberine and melatonin. Cassia Bark is another name for cinnamon, and available as a cheap supplement, or just sprinkle it on your food. Berberine, a supplement sometimes used to manage blood sugar, is available in a number of known brands for $20-30 for a 3 month supply. The final ingredient, melatonin, is available in a number of strengths, as tablets or gummies, for a few dollars per month.
That's it! Let's say you go with the highest priced options, multivitamin $10, cinnamon $1, berberine $10 and melatonin $4 - That's $25/month. You are paying an extra $80 a month, a big premium to get this prepackaged. And as far as I can find out, this formulation was never subjected to any independent testing to prove its effectiveness.
-
Like -
Helpful -
Hug
4 ReactionsUnderstood but I was not about to buy all those extra supplements. Also I think I got 10% off coupon but I don't remember how ( online of course)
Have used it for almost a month. It's been fine.
I suggested this brand because I can't find any other premixed combo and am too lazy to go and make my own mix.
Thanks for your input 🙂
-
Like -
Helpful -
Hug
1 Reaction@momac59 Yes, this “autoimmune stuff IS tricky.” Prednisone plays a very important role in your body. That’s why you are tapered off slowly. If you stop too quickly , your adrenal glands may not start producing the body’s own prednisone and the adrenal glands will fail leading to an adrenal crisis. I agree that being on prednisone can be a real pain but adrenal crisis would be MUCH worse. So, please be careful!
-
Like -
Helpful -
Hug
2 Reactions@becsbuddy I will, thanks got that information.
Deb
-
Like -
Helpful -
Hug
2 ReactionsGET OFF THE PREDISONE. I have been hospitalized. With 2 compression fractures L4 & L5 for two weeks then st home for months with homecare because i couldnt move. Then a year later L3 compression fracture. All because predisone weakoned my bones and the collapssed. I then had kyphoplasty on L3 which was fantastastic and has helped considerably.
-
Like -
Helpful -
Hug
1 Reaction@momac59
I'm sorry you're going through this. I'm doing a fast taper because of an SMM diagnosis subsequent to my PMR diagnosis, all this year. At every decrease I have a few days of moderate pain and additional fatigue before my body adjusts. I've gone from 25mg to 9mg since early May. Hang in there. I hope things get better soon!
-
Like -
Helpful -
Hug
2 Reactions@momac59
I have GCA and tapering the Prednisone after being on 40mg for 3 plus months. I am currently on 15 mg and with the help of Tyenne (insurance would not authorize Actemra). So far things are going well. No signs of relapse. Will be on 10 mg next week for 2 weeks and the TBD. My rheumatologist instructed me to take 60 mg of Prednisone at the first sign of symptoms signaling relapse. Wishing you well on your journey.
-
Like -
Helpful -
Hug
2 Reactions