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View Full Version : How long were you on prednisone?



tasha
03-12-2009, 04:48 PM
I was just diagnosed with lupus a few months ago but I've been on prednisone since November during the diagnostic stages. I HATE this drug!!! It keeps me up at night, my cheeks are extremely puffy, and my muscles are weak.

My Rheumatologist told me I can start waining off the prednisone once the plaquenil and cellcept begin to take effect, but that I'll probably be on at least a small dosage of prednisone for a long time.

How long did others of you have to stay on it? Months? Years? Is there any end in sight even?

I am very ANTI-steroidal!

Angel Oliver
03-12-2009, 05:02 PM
I am on a similiar drug but not sure if it's the same as yours so i wont comment. Alls i can say is....hang in there. Someone will post here soon and tell you.I suppose its different with everyone.But dont loose hope. I know how frustrating it must be, wanting to feel at least just a little benefit from a drug you are taking....it will work soon im sure. Hopefully someone will be here soon.

Sending you gentle hugs.

love
Angel.xxx

KATROACH1972
03-12-2009, 05:09 PM
I have been on it 2yrs straight! Hate it I have gained 35 or more pounds! I was taken off Plaquenil because I got macular degeneration in 2 months! Which was very rare. I was taking methetextrate for 6 months with Prednisone, but got bad stomach flu and stopped that med too. As far as me I will be on Prednisone rest of my life. Sorry you're having rough time with it.

tasha
03-12-2009, 05:14 PM
I have been on it 2yrs straight! Hate it I have gained 35 or more pounds! I was taken off Plaquenil because I got macular degeneration in 2 months! Which was very rare. I was taking methetextrate for 6 months with Prednisone, but got bad stomach flu and stopped that med too. As far as me I will be on Prednisone rest of my life. Sorry you're having rough time with it.

oh no! i'm so sorry :( how bad was the macular degeneration? that is very rare!

how many mg of prednisone do you have to be on for the rest of your life? i hope it doesn't cause you too many horrible side effects :(

ashleybaby715
03-13-2009, 05:05 AM
i've been on prednisone since December 31st, 2008....
sooo a few months...

they started me off at 40 mg. now they've lowered me down to 30mg for about a week and a half now.

i had a small relaps... but my rheumy said that was normal, as long as the symptoms didnt last more then a few days. i was really sore and just like, fatigued. and i missed a day of school because of it.

i know how you feel about these puffy cheeks!! cuz it happened to me too. its soo random because im so skinny yet i have a fat face lol.
but everybody says its cute. like chipmunk cheeks. it gets annoying though with everyone pinching them!

before i started taking the prednisone, i was 90 pounds. but now im like 107. soo i've gained but it was for the best, because i lost that weight.

tiggerlishus - Heidi
03-13-2009, 07:18 AM
onyl just started them nearly 3 weeks find out monday what happensd next!! so will keep you informed!! i to have had side effets it seem to work for 2 hours but like from 7 in moring and by ten exhausted again i been gettin puffy cheekys and quite flushed alot too but if it helps thats all that matter i supose!!

KATROACH1972
03-13-2009, 09:49 AM
I have the macular degeneration in both eyes. I am currently taken 7mg, but I go up to 60 if I need it.

kducks
03-13-2009, 10:58 AM
At first my doctor didn't want to put me on prednisone because of my age (17) when I first got sick, but it was the only drug that could really help me at the time. It took years to get me completely off of it with the help of plaquneil and methotrexate. I was on it for about 7 years in all.

tasha
03-13-2009, 11:50 AM
Wow, thanks for all the replies! I'm so sorry some of you had to be on it for so long... 7 years kducks?? I really hope I don't have to be on it for that long.

I was on 40mg for awhile but just a couple days ago my rheumy said I could decrease it to 30mg since we were increasing my cellcept to 2,000mg. There still hasn't been any change in my lab results though. I'm guessing the cellcept and plaquenil just haven't kicked in yet. I really really hope I start improving soon so I can get off that damn prednisone :(

sick n tired
03-13-2009, 11:41 PM
hey Tasha,

I have only been on it for a few years...

Kathy...Macular degeneration? Did the plaquenil cause it? I am so sorry to hear that...I hope the doc has it under control for you...

kducks
03-16-2009, 03:09 PM
Wow, thanks for all the replies! I'm so sorry some of you had to be on it for so long... 7 years kducks?? I really hope I don't have to be on it for that long.

I was on 40mg for awhile but just a couple days ago my rheumy said I could decrease it to 30mg since we were increasing my cellcept to 2,000mg. There still hasn't been any change in my lab results though. I'm guessing the cellcept and plaquenil just haven't kicked in yet. I really really hope I start improving soon so I can get off that damn prednisone :(

It really isn't as bad as it sounds with being on it 7 years. I mean, prednisone is not a fun drug to be on, but I honestly would not be here right now without it. It took me years to wean down and get off it completely without throwing my system into a flare again. My doctor did it slowly and in stages to make sure once I came off of it, I wouldn't have to ever go on it again. It's worked so far (knocks on wood) so I think he did it the right way.

tasha
03-16-2009, 10:36 PM
It really isn't as bad as it sounds with being on it 7 years. I mean, prednisone is not a fun drug to be on, but I honestly would not be here right now without it. It took me years to wean down and get off it completely without throwing my system into a flare again. My doctor did it slowly and in stages to make sure once I came off of it, I wouldn't have to ever go on it again. It's worked so far (knocks on wood) so I think he did it the right way.

I know what you mean... sometimes these drugs, even though they aren't fun, are all we have and we're grateful that they exist and can keep us alive. I'm glad you were able to wain off it the proper way. Just going down from 40mg to 30mg threw my body for a spin and I think that's what made me so sick for the past week. I'm not sure how my rheumy plans to wain me off even more, but I think she's definitely waiting until my lab results improve before doing so. I'm keeping my fingers crossed.

cptnblah
03-25-2009, 03:06 PM
I think that jumping from 40 to 30 is too big a jump especially if you have been at 40 for a while. I had problems when I drop 1mg every two weeks. I would have to realize that it would be hell for about 4 or 5 days going to work and would just come home eat and then sleep just to get up the next day to do it all over again. Your rheumy should try to drop in smaller increments. Have you talked to him/her? Mine has me keep in close contact. I see her once a month when things go bad.

Good Luck!

mnjodette
03-25-2009, 06:05 PM
Tasha, I'm sorry you've been 'blessed' with prednisone as a companion for a while. I've been on it (with the exception of a month or so) about 3 years. I started out at 40 mg, too. If you're not on a higher dose like that too long, then they can taper you down pretty rapidly. It's long-term maintenance use that's tricky to reduce. Your own system stops manufacturing what your body needs, and it has to have time to 'wake up' when you've been on steroids a long time. Not to mention the chance of a flare! I blew up like a balloon, so I feel for you - it's not fun. And the insomnia was terrible. But, prednisone is sometimes all we have between us and some pretty scary symptoms. I'm on plaquenil and cellcept, too. I'm now tapering down prednisone - I'm at just 3mg now - and hope to be off in 3 months (1 mg a month.) I do hurt more now than I did before, but my rheumatologist is OK with giving it another try. I've developed osteopenia, so I need to get off it before my bones turn to dust! By the way, I've read that a lot of doctors are now doing 'bursts' of steroids and quick tapers rather than long term high doses. I hope the other meds are able to do what's needed so you can be off steroids, Tasha.

ssingh
03-26-2009, 09:57 AM
I am on 7.5mg for 10 years now still on it..

NoodleMom
03-27-2009, 06:17 AM
I was taking steroids for about 7months. The first three months it was on 3 weeks off one and off and on and then solid for four months.

It took a lot of my pain away but left me with awful stomach pain, loss of appetite, severe weight loss, extreme IBS symptoms, weakness and no energy or stamina. Ironically I did not get the puffy cheeks or voracious appetite.
I have been off them since the middle to end of of January. The stomach pain has decreased, I still have no appetite but am able to eat, still losing weight tho, IBS stuff still severe. While I am still weak I am getting stronger bit by bit and my energy and stamina is improving.

K

tasha
04-01-2009, 03:13 PM
I was on 40mg for about 3 months when my rheumatologist had me decrease down to 30mg... which i've been on for about a month now. i'm going back to see her tomorrow and i'm going to request another decrease. actually not request, but demand. i've decided i'm done with prednisone. it makes me miserable and depressed just about all day everyday.

mountaindreamer
04-01-2009, 07:38 PM
hi tasha,

i don't blame you about the prednisone...that med is no fun. hope your dr. will work with you on alternatives. i am now on methotrexate in an effort to keep me off prednisone. you might want to ask your dr. about that.

just wante to tell you how sorry i am about your depression, hope it gets under control very soon.....all of this just weighs us down.

adl011
04-01-2009, 08:06 PM
I have to disagree with some of you guys. I've always enjoyed being on prednisone. My GP, who treated me until last monday, did NOT like to give steroids tho. He would only give me a 10 day program of them no more than once every three months. I would take 30 mg and then decrease by 5 mg every day. It was the only time I had ANY energy. My new Rheum also likes steroid treatment for lupus. He has me on 15mg for a month, and then re-evaluation to see if it needs to be increased or decreased then. I hope he will let me stay on them long enough to finish school. It's the only thing that helps me get through the days. They won't let me have pain medicine thou until we see if the new fibro treatments will work.

I'm so sorry to hear that the prednisone is so difficult for you, but what you have to realize is that no matter what the doctor says, it's your decision how your treatment goes, so if you don't wanna take it, make it very clear. I hope this helps! I also hope your rheum helps you get off it soon so you can feel better, and that your body doesn't need it to stay out of flares. Good luck and good health!
~Amanda

mountaindreamer
04-01-2009, 09:09 PM
thanks amanda,

your post further validates that lupus and treatments affect different people differently....some meds work great, and we celebrate when someone gets relief from a treatment plan.

how long have you been on prednisone....

ewillies
04-01-2009, 11:54 PM
My wife has been on for 16 years. She is doing fine but exercises a lot.

adl011
04-02-2009, 12:03 AM
thanks amanda,

your post further validates that lupus and treatments affect different people differently....some meds work great, and we celebrate when someone gets relief from a treatment plan.

how long have you been on prednisone....

I haven't been on it long this go 'round, but i've been on it off and on for 5 years now. Since my old dr didn't like it, he kept only giving me small doses, but the new dr is giving me a good amount for a while, so i'm very hopeful:cute: I have been taking it for a week now on the higher dosage, and i'm already starting to feel better. I can't even put into words how nice it is to be able to wake up with a little more energy (granted, it's still not what i had before i got sick, but every little bit of energy is a God-send). The hope I'm getting from the new drug treatments is helping my confidence and helping me to remember that there is light at the end of the tunnel, at least for a little while. It also makes me think that maybe I can actually get this disease in remission. 1st time in 5 years if it does. That's an amazing feeling.

Sorry to ramble...i do that a lot.

~Amanda

Rastagirl
04-02-2009, 01:00 AM
I've been on Prednisone and its various forms for 27 years now. I know I've already shared my story on several other threads...so I won't give all the details again. In my case, I had to start it at age 18 because I had a very serious, life threatening case of Lupus. Prednisone, combined with Imuran (immunosuppressant), were the only things that worked for me to avoid multiple organ involvement.

Unfortunately, Prednisone has been a necessary evil for me....it has kept me alive through the worst of the Lupus, and given me a quality of life I am certain I wouldn't have had all these years without it. Have I paid the price in side effects? ...for sure. But, I am having a happy, fulfilling life with a fantastic husband and a beautiful son and daughter. And I am not just surviving, I am thriving. (There was a time in my medical records, the term 'failure to thrive' was used by several doctors. I had given up hope.)

I've been in remission now for about 15 years, praise God! ...With the last 5 years being the healthiest I've ever been.

Over the past few years, I have been on the slowest taper of the Century off of the Prednisone. My doctor is very careful, and I am thankful for his expertise. Now, I am poised, right there, ready to get off of it, at only one tiny milligram a day. It seems kinda unreal that I could 'not' take Prednisone. I've been taking it every day for 27 years. And there's a part of me that doesn't want to get my hopes up...and think that it'll actually work. That's normal for me, cuz I've had my hopes dashed time and time again. But I hope and pray that my Lupus will stay quiet and let me have this one chance to take a tiny bit of control back in my life.

I see my Immunologist in June...depending on how my labwork comes out and, of course, me remaining symptom free, I may just get off of the Prednisone and have a damn good reason to celebrate big time. And you might just hear that party all the way to your corner of the world! Cuz it's gonna be loud and there will be rock n roll there....oh, and Rastagirl will be dancin'. :)

My Suggestion: Find a treatment that works for you, find a good doctor that works for you, take good care of yourself, avoid stress at all costs, protect yourself from the sun, have a strong, fighting spirit, and NEVER, NEVER GIVE UP HOPE FOR YOUR LASTING REMISSION AND WELLNESS.

I am praying for it, for ALL of you.....

Fondly,

Lori :heart:

tasha
04-02-2009, 10:58 AM
amanda-

i think your doctor is wise to take the prednisone slowly and to give your body breaks with it because otherwise you could become very dependent on it. at first i loved prednisone too because it completely got rid of my pain. but being on a high dose for more than a months time has really taken its toll... and i'm hoping that once i taper off prednisone that the plaquenil and cellcept will continue to work their magic so that i won't need prednisone to be pain-free.

lori-

it is so wonderful to hear that you're doing so well these days! and i hope you can get off the prednisone completely after 27 years, wow! it is also good to hear that someone who was so young when they first came down with lupus was able to have children successfully and end up living a thriving life... because these are things that get me down all the time. i'm only 23 and have my whole life ahead of me, and i want to have children, but i've heard that there is doubt with lupus. if only the lupus could have waited until i was about 10-20 years older so that i could get married and have children first that would've been nice =( but it's nice to hear that someone was able to do all that with this disease... gives me some hope.

unfortunately it's nearly impossible for me to avoid stress in my life, being a grad student and all. but i'm taking steps to minimize it, like taking vacations and getting massages regularly. i actually recently signed up for a membership at massage envy... so i can get regular massages at a reasonable rate!

:)

ssingh
04-02-2009, 11:05 AM
how do u determine that u cut down more on prednisone dose:
1. When Your blood tests look great.
2. You feel great.
my problem is when ever I go below 7.5 I start to feel Fatigue, joint pain and tenderness, vasculitus in the feet toes and fingers. Even my blood test looks great.?

tasha
04-02-2009, 11:18 AM
how do u determine that u cut down more on prednisone dose:
1. When Your blood tests look great.
2. You feel great.
my problem is when ever I go below 7.5 I start to feel Fatigue, joint pain and tenderness, vasculitus in the feet toes and fingers. Even my blood test looks great.?

i think sometimes the initial shock on your system of cutting down the prednisone could make you feel crummy for awhile... but is it possible that you might just need to let your body get used to it? the first week after a taper could be a bit painful i'm sure... but after that maybe your body will adjust. and taking the taper slow helps too. maybe just going from 7.5 to 7 for a few weeks... and then just 1mg less after that for awhile...

Rastagirl
04-02-2009, 11:34 AM
Singh...

My doctor waited until I was in a lasting remission, which for me was about a full year of excellent lab tests and no symptoms from active Lupus, before he even tried to begin a taper down from 12 mg.

I was at 12 mg. through both of my pregnancies and then through both of my hip replacement surgeries and then we waited for me to fully recover from the operations and begin to feel healthy and strong, before my doctor would even consider starting a taper. I also had to be in a strong, lasting remission. The reason being...every single time we had tried to taper before that, I would just go straight back to flare mode.

When your doctor has you taper from 7.5 mg, does he or she take it 1/2 mg. to 1 mg. at a time and do it slowly over a few months? Once you drop below 6 or 7 mg. a day, your own adrenal glands might be 'asleep' from being on the Prednisone for 10 years, and they probably need some time to start making their own cortisol. If they aren't producing any, then when you try to go below that 7.5 mg., your body thinks it's not getting enough and you'll start having the symptoms of a flare.

You might ask your doctor if you could try to take it super slow, so your body can adjust slowly. You might have a better chance at a successful taper off. It was maddeningly slow for me, but that's what it took for me to get anywhere.

Good luck....sending positive thoughts your way.

Fondly,

Lori :cool2: