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Sjogrens Topics => Living With Sjogren's => Topic started by: Nomad on April 07, 2018, 04:47:43 PM

Title: Prednisone taper
Post by: Nomad on April 07, 2018, 04:47:43 PM
I have ITP(low platelets) Another AI illness.
My new doc did a relatively quick taper of pred
Because I was going on a new Med
Main question...has anyone did a kind of fast pred taper and what happened?
I had bad fatigue, pains in my legs and Hair shedding.
Fatigue and pains are better after months
Bad hair shedding stopped after about six days.
I?m using Nioxin
I?ve always had crazy thick hair. Apologies if this sound like bragging. The type people would stop and comment.
After the shedding period, it didn?t look as good but I got away with it because of the original thickness
BUT it just seems over time to be getting slightly more and more thin.
Usual stuff I?ve done in the past like vitamins isn?t working.
Now I do t know if it was the kind of quick pred taper or if it is the new Med messing with my hair. I?m stuck on one mg if orednisone.
Any experience with going off pred somewhat rapidly? Side effects!? Hair loss?!? My Lupus is in remission.
Thank you.
Title: Re: Prednisone taper
Post by: Carolina on April 08, 2018, 12:29:17 PM
Hi Nomad,

I don't know if my experience can help.

I've done the sort of prednisone taper (start high and decrease the dosage every day until the entire RX is done, usually 7-10 days).  I've had that for serious fire ant stings (about 150 spread over both feet) and to interrupt a flare.

In both cases the prednisone taper was immediately effective and problem free.

I've also taken methylprednisolone (a version of prednisone) for over 4 years.  I was taking 2 mg a day, and when I reduced the amount I had some withdrawal in the beginning.  Mostly sudden weakness, trembling and misery for about 15 minutes, just hitting out of the blue.

Now I'm down to 2 mg every other day.  I take this to be able to have my IVIG every four weeks without difficult side effects which occur 48 hours AFTER the IVIG. 

Since I am 76, I don't worry so much about long term effects of the methylprednisolone at this point.

I have thinning hair, but that is common at my age.  I also take a very large dose, daily, of gabapentin, which is known to cause hair loss.   I haven't read that prednisone causes hair loss, but it certainly has a long list of side effects.

Regards, Elaine
Title: Re: Prednisone taper
Post by: Kristina09 on April 08, 2018, 05:56:07 PM
Hi Nomad, I?ve done a combination of prednisone weans over the years, some slow some fast( because I had shingles) I don?t believe the prednisone made my hair fall out, in my experience I think it was just the autoimmune diseases themselves.  I have very curly  thick hair  and it was falling out it used to be long now it?s very short and it?s never been healthier despite I still take prednisone on and off. I don?t know if it helps you but I do wish you the best for you and your hair.