Predisone

Posted by ebjj4health @ebjj4health, Jun 23 8:26am

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?

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Profile picture for jcl75 @jcl75

@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.

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@jcl75
Gotta love insurance! They have no idea what the patient goes through. Good luck, I hope you stay in remission.
🤗

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Profile picture for tova @tova

GET 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.

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@tova Thank you. Just watching out for those of you who don’t know the dangers of prednisone

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Profile picture for tova @tova

GET 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.

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Hello @tova,

I'd like to subtly remind of the Community Guidelines. In particular,

1. Share your story, not medical advice.
- Share your own experiences. But do not tell others what they should do.
- Experience does not replace professional medical advice. It does not replace a diagnosis. It does not replace treatment. See the full Disclaimer.
- Do not ignore professional medical advice. Do not delay seeking medical advice.

Stopping medications abruptly can have side effects that sometimes can be dangerous. It is always best to discuss with your providers if you are experiencing any side effects or if you'd like to seek an alternative treatment or stop a treatment so that a proper tapering can be safely decided on with your provider.

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Profile picture for jcl75 @jcl75

@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.

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@jcl75 Glad things are improving for you! I too have GCA/PMR and am taking vitamins to cover the damage Prednisone can do as it depletes many vitamins and may cause hair lose. I am trying Nutranize as this pharmacist has had complications and has made vitamins to combat it. She's a pharmacist. Look up Dr. Megan online- many videos. You can get a coupon or special deal on Amazon as these are expensive but worth it. Good luck !

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Profile picture for momac59 @momac59

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!

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@momac59 I've been receiving treatment for GCA and PMR for 2 years. I also started at 60 mg of prednisone per day, and I've been taking weekly Actemra injections for most of the 2 years. I finished prednisone 11 months ago, but I'm still taking the Actemra injections. I think my rheumatologist will switch me to every other week for the Actemra injections soon.

You should be aware that it can take up to 3 months for the Actemra to take full effect. Also, it doesn't work completely for everyone, but even if it doesn't work completely, it should allow you to use a lower dose of prednisone or another drug.

The Actemra has worked very well for me. I haven't had any symptoms or flares since I started treatment, and I was fortunate to only have minor issues tapering off of prednisone.

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Profile picture for tova @tova

@tova Thank you. Just watching out for those of you who don’t know the dangers of prednisone

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@tova Thank you, I wish I had known prior to treatment.

Deb

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Profile picture for ebjj4health @ebjj4health

@tova Thank you, I wish I had known prior to treatment.

Deb

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@ebjj4health Me too!!

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Profile picture for istraz34 @istraz34

@jcl75 Glad things are improving for you! I too have GCA/PMR and am taking vitamins to cover the damage Prednisone can do as it depletes many vitamins and may cause hair lose. I am trying Nutranize as this pharmacist has had complications and has made vitamins to combat it. She's a pharmacist. Look up Dr. Megan online- many videos. You can get a coupon or special deal on Amazon as these are expensive but worth it. Good luck !

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@istraz34
I tried to purchase Neutranize, but I couldn't purchase because seemingly it can't be shipped to NC. I. am waiting for a reply from the people at Neutranize.
Thank you for this information.

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Profile picture for jcl75 @jcl75

@istraz34
I tried to purchase Neutranize, but I couldn't purchase because seemingly it can't be shipped to NC. I. am waiting for a reply from the people at Neutranize.
Thank you for this information.

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@jcl75
Hi JC

The product is spelled NUTRANIZE , , maybe that is the problem, Don't know what the other is.

Dr. Megan's videos are very helpful as well.

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Profile picture for istraz34 @istraz34

@jcl75
Hi JC

The product is spelled NUTRANIZE , , maybe that is the problem, Don't know what the other is.

Dr. Megan's videos are very helpful as well.

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@istraz34
No, I got to the actual site. It seems when you select a state, all states are not included in the options. I could get it at Amazon though I can't be sure of it's authenticity.

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