Flare on prednisone

[hollowoakfarm]

I have been on pred since mid-June for another issue, starting at 40 mg, and tapering off to 10 mg as of 10 days ago.  Although it hasn't helped the condition it was hoped it would, I have gotten benefits with the Sjs symptoms...joint pain reduced to basically nothing, saliva present and some ability to taste restored, (but not scent) and tear production.  When I started the taper, the psychotic aspects of the pred hit, and I also got put on 25 mg of zoloft until I can get off the pred.  The zoloft effectively countered the benefits the pred had given me as far as my eyes were concerned, and reduced the saliva production, but not to my standard cardboard mouth.  I'm at 10 mg...and the last couple days my eyes are seriously dry, like I'm going into a flare.  My question to you is: should a flare happen on 10 mg pf pred?  Or is this something else?

Despite the benefits of the pred for the Sjs, it's not worth the side-effects.  I will be coming off of it the rest of the way.  But I really don't want to come down into a full-blown flare.  It is so horribly difficult to work when I can barely see. 

Thanks for any insight you can offer.
Meg

[irish]

I take prednisone 10 mgm every other day for the past 6 years. Since August I was on 20 mgm every day for 2 weeks and then 15 every day for 2 weeks and noww 10 mgm daily til I can taper down again.

I have normally got some dryness in my eyes but I started Restasis very early with my dry eyes and they have been pretty well controlled with that. However, in the midst of being on all this prednisone (plus I take Zoloft every day for many years) I developed some eye dryness that was beginning to bug me.

It finally dawned on me that between the air conditioning and the high pollen count and mold my drye eyes were making themselves known. I pulled out the humidifier and things have been better. I also had to use more drops for a while. I like the Soothe that is out now as it stays with a little longer.

Since I am on Prednisone all my life now I would say that dry eyes can come and go as they want. I also think that this is true of the dry mouth. I take other meds besides Zoloft that make me dry and I sort of go up and down with the dryness. Sometimes I feel like I have been in the desert and my throat feels like it is cracked.

I have learned to sip water much of the day and drink a lot of other fluids besides. I also suck on sugar free drops of one kind or another a lot of the time and have for probably 30+ years. I lost all my teeth from the dryness in my mouth and I didn't realize just how bad it was.

There is a product called Biotene Gel that is in a tube and you can find it at Walgreens. However, it is spendy. I have seen it on line about 2$ cheaper. This stuff is thick and you just place some on your tongue and swollow it. It helps that dryness that is way down deep in your throat and it sure does help. Hope this answers a few of your questions. Irish

[Meld256]

Hi Meg,

Sounds like irish gave some good information.  I'm sorry I don't have experience with prednisone, but can relate to the serious eye dryness. 

May I ask if you are using anything specific for your eyes? That might be a silly question, but for some of us we need several things to help them. As irish said, the Biotene gel is really good for mouth dryness.
Take care,
Melinda

[hollowoakfarm]

Thanks for the comments.  I'm still not sure if a flare is possible/common on prednisone.  Does anyone have an answer to that?

I do not use anything other than drinking constantly for my mouth.  I do not make enough saliva when not on predisone to suck on candy...there's no saliva to melt it so I just have a sticky lump in my mouth until I spit it out.  The gel stuff makes me gag...it's like having slime put in your mouth.  Ugh.

I do have the water spray for my eyes.  I have not found any pure water drops, which would be easier.  All of the commercial drops have additives...saline or glycerin or what have you.... and if I use those, the water is instantly absorbed, leaving the additives to crystallize on my eyes.  Then they cut up the sclera, sending me back to the opthomologist.  One dose of Restasis caused a chemical burn that took a month to heal and almost cost me my eyes.

If I could stay on the pred for the benefit of my eyes I would, but the side affects are just too much to deal with.  I prefer the physical handicaps to the drug-induced mental/emotional ones and constant headache.

Meg

[irish]

I don't know if anyone will be able to really answer that question. It is sort of like which came first the chicken or the egg. If a person is on prednisone (like I am) and suddenly has more symptoms that require an increase in prednisone---is that a flare. Who knows!!!

THe truth is that the word flare is used to basically describe that we are having an increase in symptoms. I got so bad one time I could hardly walk with pain in my joints and weakness. I asked my neuro for a script for a wheeled walked with a seat as I was really at the end of my rope when it came to shopping.

Welllll, I had a physical with my GP and he did my routine blood work and checked my 6 mos TSH and it was 14.8. I had my thyroid med increased and in 2-3 weeks I was back to what is pretty much baseline normal these past few years. Was this a flare? I have Hashimotos and other autoimmune diseases. To be honest with you I don't use the word flare all that much because with sjogrens and all the other autoimmune diseases the symptoms go up and down and can just last a few days or weeks, etc.

To my way of thinking a flare would be to go from one stage to another stage that pretty well knocks a person off their feet as far as walking, pain is increased, may have increased gut and lung symptoms, etc.

I guess I am the wrong person to ask this question and hope that someone else will show up to help you out. Irish

[Shade]

Hi Meg,

Can't answer your question about a flare; however, I just came off my first round of prednisone.  From
the very first day I didn't take the Pred. my eyes felt really dry.  I'm been off the Pred. for 3 days and my eyes still feel very dry.

I don't know if they were this dry before starting on the prednisone or if it just seems like they're drier now.

Hope you are feeling better soon,

Shade