Prednisone Taper and Purpura?

[rebekah]

After being on 50 mg of Prednisone for 5 months, I finally started lowering it 2 weeks ago. Instead of dropping down to 40mg like my doctor said, I decided to lower it to 45mg for a week and just lowered it to 40mg on Tuesday. I plan to stay on 40mg for 2 weeks or so before lowering it again, because I don't want to taper too fast after being on such a high dose for so long. My doctor didn't give me a tapering schedule, so I'm just doing it on my own. I didn't notice any symptoms when I lowered pred the first time, but this morning I noticed that I have little red dots on my legs (purpura) and have been fatigued the past few days (though that just may be due to the lack of sleep catching up to me from my high HR or insomnia from pred). I had purpura when I flared earlier this year, but could this just be a side effect from tapering that I didn't experience last time? I'm hoping weg's isn't somehow active again this soon. I tried contacting my doctor today to see if it's related to pred but didn't get a call back...

I read through some posts on here, but if this is already mentioned somewhere sorry for making a new one.

[Savva]

I have red dots on my legs. I also had them when I was in a remission. They disappear randomly. I used to have a lot of them at the beginning, but today I got a few mostly on my back thighs.
btw my doctor always tells me how to taper pred. When I was on 50 mg I tapered down to 47.5 mg (not 45!). I'm now on 15 mg.

[pberggren1]

I still get acne on my face and back. Mostly on my back, but since I am off the pred now I barely have any.

[annekat]

Hmm, the red dots do sound like some Wegs activity perhaps from tapering pred. I get them on my forearms, only very rarely and they go away... can happen when tapering or just when I get overly stressed. Tapering from 50 to 45 and then to 40 does not seem like a big deal, but then you WERE on 50 for a very long time. Others will know more about this, I think.

[rebekah]

Thanks! I know fatigue can be from tapering pred, but I just found it weird that I only had purpura when it was active last time and it seemed to go away shortly after treatment and didn't show up again until now. But I'm glad to hear it can come and go and doesn't necessarily means weg's is active.

Thanks for the pred lowering tip, Savva. I'll keep that in mind next time I lower the dose. My doctor doesn't have much weg's experience since I am her only patient, but I am going to see a new doctor next week that for sure has experience so I'm sure she will have a better suggestion for lowering pred.

[Alysia]

Dear Rebekah,
I dont know much about skin involvement. (I also had acne while on high doses of pred). I don't know if red dots means purpura or can be other thing.
anyway, I think it is better to show it to your doc or even take a pic to show your new doc, so that if it will disapear, you can know what it was and what to do with it. I hope it will disapear soon and never return.

[rebekah]

Thanks, Alysia. Yeah, I have acne from pred, never had it until I started prednisone last year. This is on my thighs and my doctor said it was purpura last time... I have a picture on my phone and will be sure to show my new doc next week. Maybe I’ll contact her for the billionth time via email to see what she thinks since if it's gone when I see her I may forget to ask about it. I’m sure she’s super excited to have me as a new patient after I’ve spammed her email with so many questions lately... just glad I’m going to have a doctor with experience and knows how to get in touch with me when have questions.

[JeanMarie]

For me, purpura show up when I'm flaring but of course we're all different. I would definitely tell the doc.

[Barbara N]

I am in a flare now and it started with the purpura on the legs then it moved around my body, arms, stomach etc. I have been off meds for a few years ans I felt terrible having to go back on pred. I started again at 30 mgs and am now tapering of 5 mgs a week. I will raise it again if I start to show signs of purpura coming back. I hated the fact that I had to go back on pred because I was doing so well with just the pain killers. I was in complete remission for 3 years but it ended about a year ago and I have been active ever since. I don't really have a doctor, I am seeing a kidney speacialist on the 20thof this month, it will be the first time.

[annekat]

Alysia, I don't know either whether the red dots are just a lighter version of the purpura, or something else entirely. I do know that I have only had a few red dots and never anything that looked like the pics I have seen of purpura.

[rebekah]

Purpura is probably a sign weg's is active, but I'm not worrying too much yet. This doesn't look as bad as it did in March and certainly not as bad as some of the pictures online, but it's there. I'm getting blood work on Thursday and see the new doc Friday, so I guess I'll find out then... Barbara, I am so sorry to hear you're in a flare and had to go back on pred. Hopefully you can continue to lower it and be off it again soon. Glad to hear you're going to see a specialist soon; I hope he or she will be a lot of help and can get your health back on the right track so you can feel better and get back to riding your beautiful horse.

[rebekah]

I saw my new doctor yesterday, and she was absolutely wonderful! We spent about 45 minutes together discussing my medical history, lab work, and where to go from here. It is so refreshing to finally have a doctor that knows weg's and spends so much time with me. My sed rate and CRP came back in the higher end of normal, but since my lab work from my hospital stay the beginning of July wasn't faxed over yet (the last time my blood was drawn), and I didn't remember what my numbers were, we don't know if my numbers are increasing or not. Could be a sign of a flare (which she thinks would be the reason for the purpura), but it could also be nothing to worry about. She did say she didn't think purpura is associated with tapering pred though. I guess I'll find out Monday when she gets the medical records from the hospital and looks at those.

[Debbie C]

I get what I guess is purpura. But I will just get a couple spots on my arms or maybe on my leg once in awhile. But they seem to go away after a few days. I have some now actually and I had bloodwork done Fri. so I'll have to see if related to anything. I know I get stressed out alot with things going on at the home front so I was just thinking it was from stress ????:confused1:

[annekat]

Debra, I do think stress can do it, especially with those small red dots as opposed to full-blown purpura that I've seen pictures of. I think the dots indicate disease activity, but we already know we have Wegs, right? I think if they go away in a few days they aren't much to worry about as long as we are not having a resurgence of other symptoms. I get them, too, occasionally, not often. I did get them when I suspected I was flaring and ended up being right.

[rebekah]

I haven't had any other WG symptoms and the purpura is gone now... my most recent blood work showed my sed rate was 20, up from 14 when I was in the hospital last month, but weg's doesn't seem to be active. So great news. :thumbsup: (so happy I now know where these awesome smiley faces are now)