Hi Everyone,
I have not posted for a while. I felt good for a few months and it was nice to forget about being sick for a little while. However it looks like the remission is over. My doctor said that my plaquenil is not enough and i have to take prednisone to get things under control. I have read so many bad things about the side effects I don't know what to do.
Do most of you take steroids? Have you experienced bad side effects?
Thanks for your input on this,
Meg
Hello Meg,
Sorry to hear your out of remission.
I was on plaquenil which i thought stopped working so i was moved onto Dapsone which affected my body and was pulled off it quickly, so i'm taking plaquenil again till i see a new rheumo...as my body needs a combination it will except because at the moment it's rejecting the meds but both the plaquenil and Dapsone was'nt steriods.
You do get bad affects from steriods but everyone gets them at different degree's...i was offered prednisone in the day unit and i totally refused...i was put on different steriods years back for other issues and never again and i've always sworn i'd never have another steriod put into me.
What ever you decision i wish you the best of luck.
Love Terri xxx
Im not gonna lie steriods SUCK, but there are only 4 sideeffects that drove me nuts, thats weight gain, axiety, mood swings, and upset stomache. But steriods are about the only thing that makes me feel better, you just have to wiegh out the pros and cons. hope i helped a little.
Hi Christie,
I did laugh at your reply mate "Im not gonna lie steriods SUCK" and they do mate and i always think honesty is the best policy with anything in life.
Good one mate. xxx
Christie said:
Im not gonna lie steriods SUCK, but there are only 4 sideeffects that drove me nuts, thats weight gain, axiety, mood swings, and upset stomache. But steriods are about the only thing that makes me feel better, you just have to wiegh out the pros and cons. hope i helped a little.
I hate steroids but wouldn't hesitate to take them if recommended by my physician Although the side effects can be dreadful the ravages of uncontrolled lupus are worse
I've been on prednisone for over 3 years now. For some reason I haven't had the weight gain but I do have anxiety, insomnia and mood swings. My doctor told me that steroids burn out your body faster and cause osteoporosis. I haven't had a bone density test in 5 years so I don't know if I now have osteoporosis. Plus, I have to take an anti-depressant and a sleeping pill to deal with the mood and insomnia problems.
That said, it's the only drug that can really beat down the inflammation. I agree with poobie - the ravages of uncontrolled lupus are worse.
Erica,
It's funny you saying how they've not affected your weight..years back when i took them they blowed me from 71/2st to 18st in 3yrs and there was other's around me on the same steriod and some had added weight like myself and other's like yourself..never affected their body.
It's all down to everyones metabolism rate in their bodies.
Hi Ann,
Thank you for the information! When I first moved to Seattle my doctor insisted on testing my Vit. D level and it was very low. Since then I've been taking Vit. D supplements. I should probably have my levels checked again (along with a bone density test).
Again, thanks for the good information!
Erica
Ann A. said:
PNWThe bone loss only occurs because the steroids interfere with vitamin D metabolism and its ability to regulate PTH and therefore blood calcium levels. The result is that all the calcium needed by the bones does not get to them or stay in them. This side effect can be avoided with adequate calcium intake and supplementation with vitamin D and its co-factors. Bone loss is not an inevitable consequence of steroids. It can be avoided with appropriate nutritional supplementation. You can have your prednisone and your bones.
PNW said:I've been on prednisone for over 3 years now. For some reason I haven't had the weight gain but I do have anxiety, insomnia and mood swings. My doctor told me that steroids burn out your body faster and cause osteoporosis. I haven't had a bone density test in 5 years so I don't know if I now have osteoporosis. Plus, I have to take an anti-depressant and a sleeping pill to deal with the mood and insomnia problems.
That said, it's the only drug that can really beat down the inflammation. I agree with poobie - the ravages of uncontrolled lupus are worse.
For me I have had to decide that my body cannot handle the steroids. Years ago I had a yearly shot to deal with terrible corn allergies and it was OK. As Ann mentioned, I came home, cut the lawn, cleaned all my closets, reorganized my pantry, plus many other things within a 24 hour period.
Then last year I was given prednisone and on the fourth day my eyes were still wide awake - no sleep. My pharmacist told me to stop immediately. I thought I was losing my mind.
Then there were the series of knee injections to avoid surgery...resulted in terrible headaches and unable to sleep.
Then the many back injections to relieve pain in the leg and lower back...
The straw that broke the camel back was the upper injection to relieve my neck and head issues. The next day I was listless and it continued for a week. I finally called my gen doctor because the pain med doctor had gone on vacation the day he injected me.
My doctor did a EKG and it was abnormal and she sent me to the emergency room immediately.
I did go through many tests though not conclusive what was wrong. The cardiologist said the injection may have been too close to my heart and messed up the electrical part.
Really I didn't mean to bore you with all the details, but I know my body better than anyone else, and for me I cannot take anymore steroids.
I take the minimal meds since I've not had good results with introducing them into my body.
I've noted some on here seem to do fine, but for me it is a decision to put them aside if possible.
Hello Faye,
You have'nt bored nobody...you've given your own opinion on steriods and i'm with you concerning them also.
To me persoanlly they may relieve suffers but at the same time they're also a lethal drug in their own rights...wheather it be for Lupus or any other illness.
Like yourself i'd never have them put into me again and that's for sure and we all know our own bodies and what we can cope with.
Love Terri xxx
I agree you are not boring anyone. I am glad to hear everyone's experiences with the drug- both good and bad. I think I am going to wait a couple of weeks. I have to get my bloodwork every 2 weeks now so if things are worse in 2 weeks I will try take the steroids. I wish that I could know how long this flare will last. The last one lasted 5-6 months, I hope that it will pass in weeks not months this time!!
Hello Meg,
Nice to hear from you...meg my experiences came from another two steriods for a totally different thing which really mesed me upand i just said never again over the years.
Well at least your giving it another 2 wks to see how things go with your blood, meg that's once thing we never know exactley how long they last but to last 5-6mths they're classed as chronic flares just over 6wks or more and you should get help when they last that long...so you must have been going through hell mate for such long time.
I wish you all the very best and please keep we updated on your progree.
((Love and hugs)) Terri xxx