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View Full Version : I loved Prednisone



camillelj
02-21-2009, 11:02 AM
I was put on prednisone for my pleurisy. I was on it for a month and in that month I felt so good, it was like a wonder drug. I had energy again I was able to excersise My joints didn't hurt and My chest and back pain went away for the pleurisy.

Now I am off and other then the pleurisy my symptoms have returned. Did anyone else love being on prednisone.

Does anyone who takes it feel better even if your not sick?

What was a bad experience anyone had??

Thanks

Camille

iseedeadmonkeys
02-21-2009, 12:07 PM
I had to double take when i read this thread lol....

I cant stand being on pred i hate it more so than my methotrexate because...........

it doesnt give me any releif i still dont belive im on a high enough dose of it, but week 2 and im being tapered, im glad you enjoyed your time you spent with it :)

plus i put on weight which usually doesnt bother me but im eating things i wouldnt normally eat lol

peace
x

mountaindreamer
02-21-2009, 12:37 PM
prednisone makes me feel weird. I have tooooo much energy, and can't settle down. However, it does releive the pain.

the problem with prednisone (i believe) is after long-time use. It destroys your bones, jaws, teeth, etc. Glad you enjoy it and that it gives you relief, but please be careful.

WantItGone
02-21-2009, 05:06 PM
I hate that I read that you loved prednisone because I think about it daily! Lol! I've heard so many horror stories and have been advised by many on here to not take it. But, I've also heard that it stops the pain. That's all any of us wants, right? I feel great right now. I'm just always waiting for the ball to drop and the pain to start. So far, Neurontin, Flexeril, and Plaquenil don't seem to be fully taking care of my aches. I'm happy you enjoyed it and it helped with the pain. Why did you stop taking it?

sick n tired
02-21-2009, 05:13 PM
Hey Camillej,

When I was put on prednisone the first few times it was only in the 7 day packs. I felt so much better and had so much energy that I actually loved it. I had read horror stories about it and couldn't understand.
Now I am in a big, bad, flare and it envolves my heart...so I have been put on a very high dose. I do NOT feel energy and I hate how it is making me feel. I don't feel good like all the last times...sigh...oh well, it is keeping me alive I guess at this time.

Danica01
02-21-2009, 06:49 PM
I have to admit that I love being on it too!!!! Every time my doc puts me on it I light up and we laugh because we know for a short period of time I will feel GREAT!!!!!! I hate that it is so bad for us and that doctors look away from it a lot......it sure does help!!!!!!

Rastagirl
02-21-2009, 06:58 PM
This is the way I understand it....

The feeling good part of Prednisone is because it is man-made Adrenaline. It's what your Adrenal Glands normally produce natuarally...which for healthy people is about 6 or 7 mg. each morning, right as you wake up. That's the amount the healthy body requires to get through the stresses of the day. Throughout your day, if you are faced with a need for a burst of cortisone, like during extremely stressful situations, i.e. fight or flight, your adrenal glands pump out extra. With Lupus, sometimes your adrenals can't produce enough extra cortisone to help with the inflammation throughout your body caused by the Lupus. It just can't keep up with it. Therefore, some doctors prescribe it to control the inflammation and disease activity going on in your body.

So essentially, what you are getting is pure adrenaline and there are times when that adrenaline can actually make you feel 'great'. When it starts to work, you can feel lots of extra energy, and feel like everything's okay. But what cortisone does is while it is working on your inflammation, it actually can cover up the underlying symptoms. They are still there, but being covered up. So I feel the need to warn others that, yes, the cortisone makes you feel like your better, but sometimes you feel so good that you can seriously overdo it. For example, when the high doses of Prednisone would make me feel great, I would go out and do some repetitive activity without feeling any pain. Then in the next day or two, I'd discover I'd damaged a joint, or broke a bone in my foot and didn't feel it.

I share this because I don't want others to overdo it and injure themselves because the cortisone is making them feel great. Even if you're feeling a whole lot better, you still need to take it easy and go easy on your joints, bones, muscles, etc. You can strain, break or damage important parts in your eagerness to do the things you used to do before. I did several times. Just remember to take it easy on your body no matter what dose you're at. And sometimes when you do get back down to the low doses, your body is just not making enough cortisone on its own and your Lupus flares up again or you start feeling terrible.

Throughout my 27 years on Prednisone, I have become quite familiar with all of it's different effects. I've heard several people on this forum share some of the effects they have noticed, but for those that are taking Prednisone and new to its effects, I thought I'd mention a few here, so you'll recognize them if you experience any. Besides the extra energy, you may have a feeling like you're 'on top of the world', you may have severe mood swings, insomnia, restlessness, aggression, strange dreams, restless leg syndrome, and very easy bruising, to name a few.

I hear plenty of people who say "I'm avoiding take Prednisone at all costs...It has those terrible long-term side effects". And, yes, you're right, it does. But in some cases, for some people, when all other medications have failed to help and your Lupus is out of control and causing damage, you are faced with a choice. And sometimes you may have to choose this evil in order to stay alive and have some quality of life that's worth living. For me, Prednisone, combined with Imuran, was the ONLY thing that ever worked. It is what kept me alive in the first 5 years after diagnosis, and in the long run, has given me a quality of life I know I would not have had without it. Yes, unfortunately, I am paying the price now with the long-term side effects. But, I have been in remission for 12 years and counting, I have a happy life with a loving, supportive husband, and I am blessed to be Mom to my son and daughter. I will live with the side effects. So much good has come out of my life in spite of my diagnosis, and when I look back I wouldn't change a thing when it comes to my medication decisions. I am blessed to be alive.

Fondly,

Lori :)

sick n tired
02-21-2009, 10:39 PM
Hey Lori,

I learned something I never knew..I never realized it was like pure adrenaline...I am not sure what has happened to my ability to feel the energy and uplifting qualities...I just know I need it for now.

iseedeadmonkeys
02-22-2009, 07:44 AM
Nope i never knew that bit of useful info either..............would explain why i feel like going raving just after taking it!!

Still dont like it, i wonder if the pannick attacks come from taking it, cause i only really get them after redbull!!??

peace
xx

BonusMom
02-22-2009, 09:31 AM
Thanks for the informative post, Lori.

I am not taking Prednisone and just started Plaquenil. Suddenly I am having bouts of insomnia.

Prior to my recent diagnosis, I was dx'ed with RLS and hypersomnia ie I could sleep anywhere at any time-driving, at work, during sex (no reflection on Superman). Adderall has been effective, until recently.

I am very curious about Prednisone. Is it a med that is usually taken only when in a flare? I've read accounts of people tapering and then you (Lori) stated that you've taken it many years to stave off a flare?

Sorry if I'm not being clear, but my thoughts are foggy due to lack of sleep and I'm hoping a soak in the Jacuzzi will relax me enough to sleep while DH and children are out for a bit.

sick n tired
02-22-2009, 01:57 PM
One of the other symptoms I noticed with Prednisolone this time is emotional...I mean I can start crying at the drop of the hat..

Bonus mom...I have not responded to plaquenil quite that way. Initially I had stomach upsets and diaharria...I know it is an anti milarial and I read recently what it does is fool the immune system into thinking we have malaria so it has something else to combat instead of our organs...so we may start out with feeling sort of like the flu until we get used to it. Perhaps for you, though, the plaquenil is working to keep you from having the hypersomnia so well it is going to other direction...maybe the doc will put you on a lower dose or something. That is my non medical minded thinking anyway. :-)

camillelj
02-23-2009, 04:12 PM
It wasn't that I was over energized, I just felt normal again. I miss feeling normal and I didn't realize how bad I really did feel until I got on this.

Ok I agree that long term prednisone isn't something you want to be on but I am unfamilar with what my other options are.

I am currently on Plaqunil and Naproxen although it has helped my symptoms a lot I just want more.

I am diagnosed with SLE and Fibromyalgia. Any guidance would be appreciated

mountaindreamer
02-23-2009, 06:51 PM
very nicely put Lori. You demonstrated how important it is that we each make educated decisions about ouf medical care, and that we accept responsibility for those decision. I am so glad you are in remission, and I am equally sorry that you deal the the long-term effects,,,,,but thank goodness you are alive.

phyllis

AyahsClan
02-23-2009, 07:37 PM
I'm real stubborn about taking drugs, my docs are used to it and work with me. I don't like taking prednisone either, it makes me hungry all the time but it works for acute flares. We combine prednisone, (small dose graduated up to max dosage then back down), with neurontin and whatever else the flare is causing like antibiotics for bad infections or anti fungal drugs, etc. I do like Azmacort which is a steroid inhaler when my lungs get bad.

I used to take norco, a barbituate pain reliever but it just makes me sicker in the long run so I do take naproxin but it doesn't do much for the pain. It helps with inflammation and takes the edge off. Now I work on relaxing muscles with yoga because I found that lupus/fibro pain causes my muscles to tense up, the tension causes more pain which causes more tension, it is a vicious cycle.

mountaindreamer
02-23-2009, 08:21 PM
ayahsclan,

hi, just wanted to reply to your post by saying it sounds like you have done a great job of finding a way to manage your symptoms as best as possible. good luck and congrat.

phyllis

Rastagirl
02-23-2009, 11:43 PM
Thanks for the informative post, Lori.

I am not taking Prednisone and just started Plaquenil. Suddenly I am having bouts of insomnia.

Prior to my recent diagnosis, I was dx'ed with RLS and hypersomnia ie I could sleep anywhere at any time-driving, at work, during sex (no reflection on Superman). Adderall has been effective, until recently.

I am very curious about Prednisone. Is it a med that is usually taken only when in a flare? I've read accounts of people tapering and then you (Lori) stated that you've taken it many years to stave off a flare?

Sorry if I'm not being clear, but my thoughts are foggy due to lack of sleep and I'm hoping a soak in the Jacuzzi will relax me enough to sleep while DH and children are out for a bit.

Hi Bonusmom...

Sorry I didn't keep up with this thread...been a little busy.

The way it worked for me was I was so sick and in continuous flare mode pretty much all the time in my first 5 years or so after diagnosis. My family doc referred me to an Immunologist in my area that had been having some success with Lupus patients by combining Prednisone with Imuran. So he started me on Imuran and initially he had to use high doses of Prednisone to get things in control or get on top of the flares. Then when things would quiet or calm down with my Lupus, he would slowly start to reduce the Prednisone. He was very slow and methodical about it. It used to drive me crazy when I first started seeing him because I just wanted off of the stuff. But over time, I came to appreciate how careful he was with adjusting my dose. So he would slowly lower me on the Pred. and then along would come another attack somewhere in my body, so we'd have to go back up on the Prednisone dose. This went on for about 5 years while I was flaring all the time. After that period of time, I started having fewer flares and attacks on my organs so gradually I inched down a few milligrams at a time. I think I ended up at 15 mg. for probably 3 or 4 years and just sort of stayed in a holding pattern. If I ever tried to go lower than that dose, I'd always have more symptoms. Since my health was doing pretty good then, I stayed at that dose.

I managed to go back to work for awhile and get pregnant with my first child. I took Prednisone during the pregnancy but the Imuran was stopped. Post pregnancy, I went back on the Imuran and was at 12 mg. of Prednisone. Four years later, I got pregnant again so went off the Imuran again. This pregnancy caused me a lot more problems, not with my Lupus, but because I needed my hips replaced and had been putting it off, living in a lot of pain. So my problems were related to my pain management for the hips. I had a continuous epidural implanted and carried around a pack on my shoulder that sent Morphine straight to my spine and hips, so my baby would not be born with withdrawals.

After that pregnancy, my doc decided to try things without the Imuran and I've been fortunate to remain off of it. So for the last 13 years, I have been inching down on the Prednisone very slowly. About 1 mg. every 6 months. I am delighted to say that I am now only taking 1 mg. and if things continue to go well, I will be off of it this June. :)

So it wasn't that I was taking it to stave off a flare, when I finally did stop having so many flares, my body had become dependent on it....my adrenal glands were not producing it anymore. So I had to keep taking it artificially. The reason my Lupus doc is taking me down soooo slowly is because we are trying to get my adrenals to start producing again. For some people, that never happens. In my case, since I have made it down lower than 5 or 6 mg., if looks as if my adrenals are waking up. If they weren't, I would be having symptoms of adrenal insufficiency. So, at this point, we are hopeful that I can get off of it completely. I am praying for this earnestly...

I apologize that this post is so long...it's not easy to explain the process I went through. I hope this answers your question and helps you understand the use of Prednisone in my particular case. I think a lot of doctors today are trying to use it minimally, so it is more common for people to be on it short term just for an ongoing flare.

Please feel free to ask questions if I didn't answer your question effectively. I'll try to answer you sooner this time.

Fondly,

Lori :)

iseedeadmonkeys
02-24-2009, 03:39 AM
Yeah im very emotional today, been crying all morning, cant get certain things out of my head, i kno im not due on like, i just think it could be coz of the pred, im down to 7.5mg this week, cant wait til week 5 when it stops!! :(

tiggerlishus - Heidi
02-25-2009, 08:40 AM
thanks for all the advice i only started taking it yesterday soo not feeling many effects yet be good or bad but hoping in few days it starts to take effect in a good way :)
the interesting fact lori stated makes lots of sense and i think i'll be making a diary of the 3 weeks i am deffiantly having them before they are reassessed!!

so watch this space!!! :p

AyahsClan
02-25-2009, 09:53 AM
Thank you. I don't feel managed lol.. I've been lucky. My kidneys have never been seriously effected, just my liver and lungs. The good thing about livers is they can really make a come back and heal, kidneys not so much.



ayahsclan,

hi, just wanted to reply to your post by saying it sounds like you have done a great job of finding a way to manage your symptoms as best as possible. good luck and congrat.

phyllis

AyahsClan
02-25-2009, 10:03 AM
My heart is sending you a hug and a very pretty hanky with little roses.

Hope you feel lots better after you finish the pred.


Yeah im very emotional today, been crying all morning, cant get certain things out of my head, i kno im not due on like, i just think it could be coz of the pred, im down to 7.5mg this week, cant wait til week 5 when it stops!! :(

iseedeadmonkeys
03-10-2009, 03:55 PM
May i also add, that 2 weeks ago i came off my period, now im back on again!!

this has never happened to me before, dont think il be going on them again when they ask, its soooo annoying that it makes you so irregular cause some of the pluses are really great!

ISDM
xxx

Saysusie
03-12-2009, 12:08 PM
It happens to many of us quite often. Our doses are low when are symptoms are manageable. However, when we are in a flare-up or new symptoms appear, we have to increase our Prednisone (or take it again after being weened off) until things get under control again. Unfortunately, this see-saw is quite common. :skeptical:
Peace and Blessings
Namaste
Saysusie

iseedeadmonkeys
03-12-2009, 06:12 PM
Well im taking myself off it, then restarting the low dose next week, this aint right, i no my body and i no its not sposed to be doing this too me, i think the drs are wrong lol, ive never bled this much before :( anyway i dont think being on the warfarin helps matters much either lol

Happy Days
ISDM
xxx

ashleybaby715
03-13-2009, 06:42 PM
hi!
honestly, i hate prednisone.
i mean, its great because it got rid of all my joint swelling/pain and made me feel like how i alway felt prior to me being diagnosed with lupus.
but in the long run ,its not good to be on it. i eat EVERYTHING insight! thank god i have a fast matabolism, or else i would be huge!! i only weigh 107 lbs. haha ,but i did gain weight because lupus made me lose weight and i dropped to like 90 pounds which was scary [but i've always been small anyways...]] soo i gained a good 17 pounds since being on prednisone [[i started taking it at 40 mg since dec 31st, now im at 30 mg]]

anyway... i love how it makes me feel, but i dont want to be on it!
hopefully, the methotrexate can wein [[spelling?]] me away !

Saysusie
03-14-2009, 09:13 AM
ISDM
Please DO NOT take yourself off of the Prednisone WITHOUT being monitored by your doctor. You could cause you body to go into a kind of shock (withdrawal) because your body cannot suddenly start making cortisol. This could cause an adrenenal crisis which can be life threatening! Prednisone MUST be tapered and the tapering has to occur slowly and under the direction of a doctor.
The only time that it is safe to abruptly stop Prednisone is when you were given only a small amount for a very short period of time. Otherwise, it is very dangerous to stop taking the drug abruptly. Please consult your doctor before you do this!

Peace and Blessings
Namaste
Saysusie

iseedeadmonkeys
03-17-2009, 07:55 AM
Hmm i dint see that post til now!
I stopped over the w/e and restarted yesterday, would explain why i was so ill over the w/e sorry saysusie i feel kinda stupid now!!

ISDM
xxx