I am starting high doses of Prednisone on Monday. Was just curious if anyone else has tried this treatment for their ataxia, and what results you got? My doctor also wanted to try IVIG, but I refused hoping that the steroid treatment would be the best to start with. Our next step IS IVIG if the steroids don't work. Has anyone had IVIG?
good morning my name is davis johnson i have fa i have done the prednisone it gave me lot of energy also stop my joints from aching it helps so try. the only down fall is u eat like a starved hostage lol i gained 13 pounds in two weeks but i loss it after i got use to it
HI, NOT ME. I WONDER PREDNISONE IS REALLY EFFECTIVE.
FOR WICH SYMPTHOMS IT IS PRESCRIBE?
DIZZINESS, NEUROPHATY ?
SORRY MY POOR ENGLISH
The steroid treatment isn't to help my symptoms, although I'm hoping that it does! It is to try to get the antibodies in my system to calm back down and stop attacking the vestibular areas in the brain. At this point they don't think it will make me feel any better, but just stop or slow down the progression.
I've had prednisone for skin problem - it cleared the skin problem and helped ataxia but.... doesnt last and they dont like to prescribe it for long.
Patsy
Muscle Nerve. 2011 Nov;44(5):839-41. doi: 10.1002/mus.22172.
NOT FOR ME,Prednisone can worsen ataxic neuropathy with anti-disialosyl IgM antibodies.
- PMID:
- 22006703
- [PubMed - indexed for MEDLINE]
That same thing was suggested to me but I choose to try things natually first because they told me I'd have to have 5 intervious treatments, 1 hour each and might gain 30-50 lbs doing it and their was no guarentee that it would stop the cerebellem from degenerating, so I saw it as a last resort. When I let go of flour, refined sugar, alcohol, preservitives, and foods that were premaid, my meds, naping daily, trying to listen to what my body needs on scheduals etc.. Somehow getting MRI's every 2 years showed it stopped degenerating. Now I still have symptoms of Ataxia though. I'm due and trying to schedual my MRI right now so I'll let ya know if it's still working for me. The last 2 MRI's didn't show degeneration.
It wasn't alway easy for me to follow this regiment but I had reason's that were reiterated every 2 years to motivate me.
DEAR JEANNIE
PLEASE KEEP ME UPDATE WITH EVERYTHING.
IS MRI A MAGNETIC RESONANCE? IF SO. MY LAST ONE WAS IN 2006...!!!
WITH MY MY EXTREME VERTIGO, DIZZINESS AND PERISPHERAL NEUROPHATY SURE MRI SHWS DEGENERATIOPON
IF NOT .....COOL...THERES A HOPE...
I WILL DO IT THIS YEAR....
CRISTIÁN UGARTE
I would recommend that all of us also join a site called Patients Like Me - www.patientslikeme.com . You can search for people actually using the medications suggested to you and get their feedback.
I see that a lot of psoriasis patients use prednisone if you're looking for feedback on it.
MissCake2,
I know we are all individuals and what one can handle for medications another may not be able to. I was having problems with a hard cough when my breathing became pretty scarey for me I was taken by ambulance to emerg. room. I had been given Prednisone two days before this due to the cough. At one time while in the hosp. I couldn't catch my breath. Gasping for air. Ended in the hospital for the week end with no explaination as to weather ity was caused from the prednisone. Before I went home they had taken me off the medication. It took me awhile to get felling myself after I got home.
This doesn't mean it will happen to you. It is just that it seems talking with people there are so many that have told me of reactions others had while taking this medication. It all depends on the person. Good Luck for you if it does work! If ou take that treatment please will you let me know the outcome?
Take Care Miss Cake 2 And remember to always love yourself
Not sure what it does so can;t comment but just take some vitamins.Nothing has been suggested by the specicialists
Marie
ps Don't want to take anything which may affect my mind. Good luck with the Predisone.What is it known as in the uk?
same Marie - it's brand name for a steroid tablet.
Patsy/CA/69/Ipswich, UK
cristian ugarte said:
My father had a mystery virus when he was 50 and that was treated with steroids.He went on to have Parkinsons so I am very nervous of drugs.Better the devil you know etc.Thanks for informing me.
Marie
yes magnesium is quite helpful for me but I do also take ant inflammatory and muscle relaxer [half a pill late evening] - that's baclofen. I take loads of vits and minerals too !!!!
Patsy
Thank you all for your opinions! It helps me to think about what I want to do... I also have started on vitamins. My neuro put me on B1 and B12 immediately as well as magnesium. I had already been on vitamin D because of CD, but I must say that the rest really made a difference in my symptoms! Lessened my headaches and tremors and twitches. I was very happy!
I'm also very scared to start the Pred tomorrow. I have had many bad reactions to different meds, and I am very sensitive. Hoping it goes okay, and I will let you know what happens after I start.
I will try to look at these other sites that you all have recommended. The other treatments like IVIG, my husband and I agree those are a very last resort.
Well good luck - I hope your experience with pred is as good as mine - I felt great :)
Patsy
Thank you, Patsy! So far so good. I was really surprised that it wasn't that bad, however, this is only my second day. I was able to sleep somewhat last night. I don't always sleep well so it wasn't any worse than normal. My biggest problem yesterday was being hungrier than usual and feeling a bit jittery. Hopefully that will lessen as I get used to it.
Patsy said:
Well good luck - I hope your experience with pred is as good as mine - I felt great :)
Patsy
hopefully, the jitters will settle down. Let us know how it helps. good luck