Have many of you had to take steroids for your SJS?? I am in one heck of a flare and afraid I might have to ask for some to get me out of this. I am so tired I can barely make it to work and I have a desk job.
I've taken prednisone before for flares when they thought I had seronegative RA. It worked so well but the last time I took it, it caused my blood sugar to go up to 275. I swore I'd never take it again but now, I dunno...... Maybe when this UTI clears up. I am on a 2nd round of antibiotics b/c the UTI didn't go away......
Yes, I'm on a corticosteroid, but it is to prevent the flares from my IVIG treatments.
I take D-Mannose regularly to prevent UTIs and it works a charm.
Hugs, Elaine
I use prednisone in a very specific way that my rheumy and I worked out. You should check with your doctor on what's best for you.
If I'm in a flare, I take a low dow of prednisone for 3 days, and then taper it for two more. I tend to react strongly to predisone, so it can help. I also tend to get infections easily while on immunosuppressants, so there's an attempt to take the smallest amount possible.
I know others follow different dosing and patterns, so it "just depends". But prednisone may help get the inflammation under control.
Thanks, I am definitely going to get some d-mannose. Thanks for the responses. I took a pain pill last night to help me sleep and I actually feel better today. The weather is also clearing and that helps a lot.
My system cannot handle prednisone side effects and I never could see past the side effects long enough to see if it was any improvement. I get like incredible hulk aggression. AND I PROMISE YOU no one wants THAT. LOL Especially not me. Normally, I'm not exactly a ray of sunshine and happiness but I'm not prone to attacking anyone verbally or physically. It completely alters my personality into that of a very frightening individual with almost no remorse either. At least not until it has completely left my system. I actually threw objects at the slightest irritation and let's face it... we have plenty of irritating things going on daily just with the SJS symptoms alone.
Ironically, someone asked about turning red... can't remember who or when but recently. I turn bright red with flares. I always thought this was because I'm already so pale that the internal heat is just more visible on my skin. However, I definitely do not have Lupus. They keep checking but I don't seem to have to worry about that.
You must have been reading my mind...I was wondering if anyone else was on prednisone and whether or not it is tolerated well. I had a flare and was given prednisone (15 mg) for 10 days. I'm on the second RX now, am tapering, and having problems with palpitations. My flare, believe it or not, was from D-Mannose. My uro-gynecologist recommended it to prevent chronic UTI's after being on antibiotics for 3 months. Don't know why, but the D-mannose triggered widespread muscle and joint pain. I know many people on this forum swear by it as does my sister but my body does not tolerate it...hope you have better luck.
Oh wow, d-mannose caused a flare with you? I'm scared b/c I just ordered some b/c my UTI's have come back. I've had what I feel sure is a neuropathy reaction from the levaquin. I only have 2 pills left and will have to discontinue it and hope that *** neuropathy goes away. I pray that it does. I don't need neuropathy on top of all this!!! And, now there is one more antibiotic that I can't take. I am already allergic to sulfa. They didn't have a lot of choices with this infection either. Grrrr.....
Honestly, it sure seems like we are also sensitive to medications causing flares and problems b/c of our funky immune systems.
Prednisone could cause me to have meltdowns, insomnia, high blood sugars and big appetite too. Lower doses weren't too bad. But, like you said Ashewoman, we don't need a lot to irritate us, SJS is irritating enough!
Boy, this has been a tough few weeks!!!!!!!!!!! I just want the flare to end.
I was on 10 mg of predisone and then tapered down every month to 1 mg- tapering was so hard- I liked the suggestion of using only a 7 day prescription- that sounds like the best of both worlds to me. There was a member that posted about that idea. Perfect if you ask me.
My daughter has been on prednisone for a flare that came on after the birth of her first child last December.
She had always resisted taking pred, worried about the side effects, particularly weight gain. This is the first time she has really noticed a significant improvement in her symptoms.
It's tough enough being a new mum, with the lack of sleep etc without the added fatigue of SJS.
I am really glad the immunologist prescribed a tapering dose of prednisone for a couple of months and very grateful that she's feeling better.
Prednisone works for me. I hate taking it but it really calms my flares. Other than that I end up in the hospital with thousands of dollars worth of test. My primary doctor keeps my prescriptions going so I don't have to pay the extra money to continually go back to my Rheumy or Neurologist.
Peace and blessings,
Angeldancer
I get depo-medrol shot from my primary care dr. This is what has worked best for my flares over the years. I seem to experience more symptoms with the oral tapers. I also take half a low dose xanex or valium if I experience insomnia and/or hmm how shall I say this, grouchiness as side effects.
Missed this whole thread...been out of pocket a while...so replying to Aidee really:
OH MY GOODNESS>....since I stopped having sinus infections, I had forgotten about depo Medrol injections. How could heroin or cocaine make one feel any better or longer? Never understand hard drug users!!
----and then back to original query: Deb, I have recently been placed on 5mg prednisone @ once daily. (new rheumatologist). Though I was happy...except for her preface: "at your age"..ha, ha...I did remind her one hip was full blown, osteoporosis...she justified her decision as she wanted me off Celebrex which I have taken for over a decade...with a history of an NSAID ulcer 15 years ago. So? stomach or hip? She chose to save the stomach! I had 5mg prednisone in my emergency med supply for costochondritis. I had been warned to take it sparingly and only when attacks were really bad. In about a five month period I'd taken it twice and had taken it @ 2.5mg. Back to the current go round: Again I started at 2.5mg daily. That lasted about a week...then I upped it to full 5mg. Have taken it for less than a month and have appt next week to discuss new meds (she had also started me on hydroxychloroquine-plaquenil). I am fearful she will tell me how she wants me to taper after X amount of months, weeks, or (dread) DAYS! We'll see. I will let you know.
Bottom line...after the second week on full 5mg. I was adjusted...and though my knees were the last joints to receive "message" from the prednisone they are back to Celebrex feel. Yea. Strange thing is I have an old chronic ache in my right shoulder which I have not felt in years. (after I had cervical laminectomy many years ago) Lo and behold...the Celebrex must have kept that discomfort at bay as it is aggravating me now. I have just traveled for about 10 days...and possible I could have pulled something with bags. Who knows? I'll see. As to fatigue...I agree you must be in a flare. I never had the prednisone mid-flare so can't advise. Also..with your immediate concern (UTI) good to consult urologist too.
Good luck ...and hope this is being posted SO late you are resolved by now. Wouldn't that be great!??
ccc