I haven't seen my rheumatologist in almost year because he is so booked and my appointment is on Monday..i have had constant flaring for the past year where I will have just a few days between them. it seems to be connected to prednisone steroid packs, every time I get off of them I flare again!!! im just wondering does anyone else have this problem?? would it be hard on your body to be constantly taking steroids?? should I bring this up to my doctor?
Many of us are on continuous steroids to prevent the flares The steroid dose packs are a temporary fix and don't address the underlying illness
I’ve only been diagnosed since June of this year. I was originally put on steroids for my kidneys I was on a decreasing dose for a month and then I was put back on 20mg. They are now trying to get me off of it as my body is negatively re-acting to the steroids. I’m now at 10mg and I now no longer have “good” days. I’m pretty much in a constant flare. And my kidney doc still want me off. He didn’t get it when I told him I was feeling worse with the decrease… he has it in his mind that something else has to be causing my issues. Even though every other doc has diagnosed me with lupus. SIGH! See my new rheumy. Dec 23rd. Anxious to see what she does.
I’m on 80mg im steroids twice a day. The side effects are the worst. But the alternative (possible death) is much worse. Follow up with your doctor. Sometimes lowering the steroid dose can be more painful than the disease itself.
Every time I get weaned off of prednisone I end up having a really bad flare and being put back on a higher dose. I’m currently attempting to wean off of it again; I’m at 30mg. It’s the lowest dose I’ve been able to get to without a major flare. As bad as the side effects may be, sometimes it’s the best alternative we have. I hope you get things figured out. Best of luck.
I am also in the process of weaning off prednisone. I am down to 7.5!!! I do have some pericarditis again, but it is minimal up against what it has been. My rheumey had put me on plaquenil to off-set the loss of prdenisone, but I had to stop taking the plaquenil. I have a pre-existing issue with my eyes, so no plaquenil. I hope I do not have to increase the prednisone again now. I just stopped the plaquenil on Wednesday. To answer your original question Kourtney, no, I don't think itever ends. We just have to work through it. You are not alone! We have all beenwhere you are or we will be where you are some day. I hope your rheumey is a good one who listens! {{{gentle hugs}}} to you.
I am also weaning off prednisone, I am at 8 mg from 24 mgs in August. I have good days and not so good as far as energy, my muscle and joint pain is gone. I just had an MRI of my brain, a tilt table test for blood pressure which are fine, I think we all do what we can, I have been feeling much better now that the weather is cooler. I have learned to rest when my body tells me to. I believe this is a one day at a time illness.
I do hope you get some answers from your appointment.
Steroids should not be taken for long periods of time. Side effects from long term steroid use are horrible. There are steroid sparing drugs that can help you wean off of steroids. Ask your Rheumatologist what he/she thinks of starting you on one. Good Luck to you
I have only been on steroids once and I'll never do it again. I would definitely bring it up to your doctor because it seems like the steroid packs aren't all that beneficial to you if you're flaring so much. Hope you get some answers at your appointment.
thanks everybody! I thought it was bad for you to be on them..But I guess you can never win its a catch 22!
I personally do not think the risks of having my kidney's fail or many other very serious side effects are worth long term use of steroids. Yes, i have used them when nothing else would work
i do not know when doctors started using steroids on long term but personally i think it is very irresponsible of them.
they stay in your body after just a 5 day dose for over 6 months!! if you have kidney problems it is playing with your life. My brother was on dialysis and personally i do not want to resort to it.
i ask for other things ...or work out what is causing the flares. I just thought that was part of having lupus..learning to deal with flares and what causes them.
here is link that advises how to use them wisely.
http://www.mayoclinic.com/health/steroids/HQ01431
Hi!, I also take prednisone now for 3years , Feb2011. I have not had that reaction at all . My rash comes when am really busy and lack of rest , serious conversations(stress), which I try my best to avoid ! Also when I touch things n then touch my face -the rash has a mind of it own, smile. Am using cortizone 10-at 1% (Walmart is were I buy it), and pure Vaseline mixed with it, it helps . I wash my face with that my presciped for me , now for also 3years. Well hope the doctor help you take care of this…Beverly L.
Hi
Write a list and tell your dr eveything you are experiencing even if you think its not relavent. Fatigue is my biggest issue. I'm lucky.
Hope you get all your questions answered.
Cindy
Yes writing down what happens is a good way to help the doctor to know what is going on with you. I keep tablets with the daily reports of everything . Also the foods that I eat, he always tell me what you have become a doctor for yourself? No! Just want to keep my own reports and let you know hey am not crazy , is always my response back to him , then we both laugh and talk about what I wrote. Sometimes he has a look on his face like really! Wow! Then of course he ask the crazy question , Are you in any pain right now? But the pain is never the way it happens when I see him. Lupus is a mystery problem! And I wish that it would just totally go away!! Smile. But that is not going to happen, so I just deal with what I can and pray that someday soon there will be a cure, and we all can live a normal Life again…Beverly L.
freightliner said:
Hi
Write a list and tell your dr eveything you are experiencing even if you think its not relavent. Fatigue is my biggest issue. I’m lucky.
Hope you get all your questions answered.
Cindy
Lupus is an autoimmune problem which causes your body to attack its own tissues As such steroids are used to prevent the attending inflammation which in many people results in organ damage. For many of us steroids is what keeps us alive I'm not sure why one would think it causes kidney damage since it is used in lupus kidney disease to prevent or minimize damage. Steroids has a lot of side effects but for many it is the lesser of 2 evils.
80 MG. IS ALOT OF STERIODS. AND BELIEVE WHEN I TELL YOU ABOUT YOUR TEETH. GET SOME ORAL MIST TO KEEP YOUR MOUTH MOIST THAT HELPS WHEN YOU TAKE THE STERIODS OR ANY MED FOR THAT REASON. DRY MOUTH CAUSES DENTAL PROBLEMS, LACK OF CALICUM AND MORE.
JUST TAKE CARE AND PRAY FOR IT TO STOP AND GET INTO A REMISSION!! TAKE NAPS AND EAT ALOT OF FRUIT. THAT WILL TAKE THE CRAVINGS AWAY. ALSO DRINK PLENTY OF WATER.
TAKE CARE MY PRAYERS ARE WITH YOU.
LOVE MICKEY AND RUSH