Evil Prednisone!

Forgive me, I'm just going to rant.

I'm 5'2" 122 lbs, and 8 days into 60mg pred a day. Seeing the doc today and this HAS to change. I can't sleep, even with clonopin, I have tremors and shakes and feel like I'm hooked up to a battery but am SO exhausted, achy and my TMJ, which was moderate to begin with, has gotten a ton worse. The heart-thumping is disconcerting.

My husband was at this same dose for transverse myelitis a year ago, but he weighs over 50 lbs more than I do, and has since required a core decompression of his hip due to avascular nescrosis... in an attempt to avoid a hip replacement. The surgery wasn't successful and he walks with a limp and is in pain most of the time now... at all of 41 years old.

I can't find a tantrum smiley. :ohmy:

Beware of long term use of steroids....my husband at time took 200 milligrams a day. The prolong use of steroids ruined his hip which required a hip replacement.......they help one thing but ruin another.....

Well, today I was at 320k, so dropping pred from 60mg to 40mg. Phew! That will be a relief. I hope my numbers stay up; he wanted me back on Friday for another check (IVIG will be wearing off soon) but it'll be Monday due to the holiday.

Yeah, 60 mg's isn't fun. Been there. Things might get worse for a while with the taper, just be prepared. Going down isn't fun, but it is a step in the right direction.

ahh subject name after my own heart!
I am at 100mg a day! initially 200 mg, and have all the negative side effects; moon face, insomnia, acne, and HUNGRY! but my count did go from 2,000 to 120,000.
I also just felt the need to rant. I hope you taper and come off the evil prednisone quickly!

Man do I know where you are coming from. I've done the prednisone dance so many times. Prednisone, IVIG, then decrease pred, counts dip, try rituxan but still on pred, no response, stay on pred, cbc and counts are ok but do IVIG, taper off pred and try Danazol, little change from pred for counts but worse side effects than pred, off Danazol and back on pred and more IVIG. Oh and I forgot to mention that they took my spleen when I was 25 weeks pregnant! So finally after failing EVERYTHING, they signed me up in the N-Plate Nexus. Now I am doing a whole new dance with that. Sigh… It seems to never work perfect, but a little bit better.

4 days on 20 mg and yeah... side effects are NOT getting better yet (possibly worse, mood-wise, but then again I just found out my husband has relapsed into drug addiction so maybe my anger is not the prednisone..)

day before yesterday I did some yoga and then moved the wrong way, pulled a pec muscle an an arm muscle and thought I was having a heart attack!

Dotty:

I did not find that the side effects got better until I was off of the drug completely for a few weeks. Some of the side effects subside (insomnia, shaking, etc) to be replaced by others (depression, weakness, aches). Tapering too fast can also make things worse, but you get it over with faster. Don't expect too much - you'll get there.

Hi I took prednisone for 9 months during my pregnancy bet 40mg/day to 10mg/day and only after 3 months of taking the medication I started having pain in my hip but dr did not associate the pain with a side effect of the medication so I continued taking it, after 9 months the pain just increased so after an MRI I found out I had avascular necrosis in my hip I was only 24 years old, now I am 25 just had my surgery but the recovery is not so easy, escpecially when you have a baby to take care of, not to mention that I will have to replace the artificial joint again in 15-20 years this is major surgery and to do something like this at such a young age. Just hate the fact that the hematologist was so negligent. And remember medicaitions are DRUGS they may help in one way but destroy in another.

The title says it all well, prednisone is evil. I am finally off it and am so happy to be off it, been off it since early Feb and it feels really good to be off it.

WOW! I am 33 weeks pregnant and my hemotologist is really pushing for me to start taking prednisone. I've done some reading on it... the general side effects etc. but it's all so scary to me.

Diabetes runs in my family and I am over weight so I am really concerned with the possiblity of increasing my blood sugars with the medication. I already have problems sleeping and have to chase after my 11 month old every day so really can't deal with any more insomnia.

I do need to do something... not really while I am pregnant but when I am not pregnant I can't sustain a level. With this pregnancy I sit around 28 but when I am not pregnant they just continually drop. I let them get as low as 10 before getting an infusion of IVIG. The IVIG takes so long to be infused and I have terrbile headaches for approx. 3 days following infusion. Then within 2 weeks i'm lucky is my levels are above 30!

There's not that many treatment options for this and the one's that they do have suck... DON'T KNOW WHAT TO DO! :pinch:

Crystal - you may not have that many side effects from two weeks of Prednisone. The really bad side effects occur after weeks and weeks of it. I've known plenty of people on a short course who didn't get any of the side effects I did when I was on it for months. They thought I was nuts and making it up.

Crystal361 wrote: Diabetes runs in my family

I can relate my own experience, or really that of my father who was on pred 60-80 mg several different times. The first time that he was given the pred, he also received a glucometer plus syringes and insulin - and a visit from a home nurse to show how to inject.

I threw myself into researching the Glycemic Index. Doctors scoffed. But when he ate the way I was telling him to, he never had to use insulin. Not once. However, when he went into the hospital and ate the meals ordered by the dietitian there, he had insulin every single time.

Anybody can do the same. You just look up GI values on the web. E.g., raisins are high but prunes are low. Whole wheat bread is not very different than white bread - but stone ground bread is actually lower. Spaghetti is fairly low, as is anything made with durum semolina wheat.

Avoid faulty advice from popular writers like Gary Taubes.

Along the same lines, if you avoid sodium then you won't need diuretcs much - certainly not daily.

Good luck.

Yes, definitely EVIL.

I have only been on "pulse" weekly treatments (70mg day 1, 60mg day 2, etc) but many times over the past 10 years, and sometimes several sessions close together. For me, it was awful. I would get extremely irritable, ravenous and wired to the point I couldn't sleep even if I took them in the morning. Prednisone almost seemed to have a psychosomatic affect of me - I felt slightly altered. One time, I had 3 pulse treatments over the course of a couple months. At the end, I got a raging case of shingles. I don't know for sure, but suspect my weakened immune system (by prednisone) was a direct cause.

Fortunately, I found a much more relaxed hemo who doesn't agree with using prednisone at my recent counts (30-70K) unless I have other symptoms.

I sincerely commiserate with those who have to endure prednisone long term.

"Slightly altered" is a good description. I felt like a shell of myself, very disconnected emotionally.

Shingles is pretty common when someone is on Prednisone, it happened to my Mom and several people here.

I FINALLY got to taper down to 20 mg! I hate that I am the one having to ask the dr to do the tapers...it seems like the dr should be doing this every few weeks or have some sort of schedule as to when I should be doing the tapers. I am COVERED in acne on my chest and my back and they are the kind that hurt! I also have quite a bit on my face, neck, and arms so it is driving me nuts when I have more acne then the kids in my middle school and high school do!

My newest side effect that is not fun though is thrush. (Got this before the taper.) I have a very swollen tongue and white patches in the back of my tongue and all the way down my throat. (At least it feels that way!) It hurts to eat much so I am eating alot of soft foods and drinking tons of liquids. I hope this goes away soon. I am ready to get off Prednisone altogether! Joint pain seems to be my excuse for not exercising lately too..shame on me!

Pauline - you need to treat thrush, I don't think it will just go away. I have thrush pretty much all the time from continual Prednisone use, but I do use meds to keep it under control.

It's very hard to exercise on Prednisone!

Sandi...what do you take for thrush? I was told by a co-worker to take something called acidophilus since that helps with yeast infections. I am not sensitive to meds so this is a first for me. (Never had a yeast infection before and I was told this is the same as a yeast infection, but inside the mouth.)

I have to go pick up a prescription later tonight so I'm planning to look for whatever I can to help with the symptoms since I can't even bend my tongue without it hurting pretty bad. I'm chaperoning an overnight field trip for a high school this weekend so I need to feel a little better than I do now.

Acidophilis can help prevent thrush, but if you've got it that bad, it won't cure it. I try to eat a lot of yogurt but I'm not sure how much good it does.

I take Mycelex Trouche for thrush (you dissolve it on your tongue). I also have a swish and swallow called Nystatin. I haven't found anything OTC that does the trick. Call your doctor, lady!

Called my dr and she made me come in...was lucky to be in and out during my lunch break! Trying sooo hard not to take off work for any drs appointments right now. I was upset that they were making me come in, but they said it was viral and it needed to be treated. (Is that true...thrush is really viral...so meaning, it's contagious???) After the dr looked in my mouth, she didn't think it was thrush so she did a strep test and I tested positive! So weird because I normally can't even swallow when I have strep throat. So now I am on antibiotics and since I had already bought the acidophilus, she told me to go ahead and take this to prevent thrush since I'm still on Prednisone. The back of my tongue and my throat is covered with white patches/blisters so hopefully the antibiotics does the trick so I don't constantly feel like I have food particles stuck at the back of my mouth! (Yuck...my stomach hasn't felt so great lately either!)

See? Good thing you went! 20 lashes with a wet noodle for letting that go.....

I was hospitalized for 4 days in early February with a platelet count of 3k. I was receiving 80 mg of Prednisone each day in the hospital and went down to 40 the day I was released and for one week,then 30, 20 10 and 5 each for a week. My platelets dropped to 90K so my doctor increased my dosage to the following each for one week: 60, 40, 30, 25, 20, 15 and 10. My platelets are ok now (275) and now I am on a 10mg every other day. The problem is that I seem to be in a constant state of tapering. Suggestions or comments are very welcome.

arianne it was my experience with prednisone that this can happen, it took me 10 months to finally get off prednisone. Every time the ammount was decreased, platlets did the same decreased.

I started on 75 and only decreased by 10 a fortnight for the first 6 months or so and then once I got to 10 a day decrease was only by 1mg per fnight, but all through this time it was up and down so I did take a long time to get off them. ( I have seen some on these boards that have been on pred for years)
Even on 50mg of prednisone the highest count I had was 130 so I am pretty impressed by your 275. Seems as though your just about at the end of the taper, so hopefully it will be over soon.
I did learn to argue a bit with my doctor though and if counts dropped and he wanted to increase the dose I would tell him maybe we could just give it a bit more time and have cbc a bit more often, sometimes counts would increase without increasing the dose.
Good luck.

Milly,
Thank you. It does seem that everyone is different. I am curious if anyone went to 10mg every OTHER day rather than, say, 7.5 per day or even 5.0 per day. I know that the lower dosage is the signal to the pituitary to start producing its own so I wonder what message the body is receiving by a 10mg every OTHER day. Is this common? It does produce a taper effect every day which is brutal. Comments are sincerely appreciated.

I'm doing 5 mg every other day. I have a good response to prednisone and can get away with these minimal doses. I'd like to get off of it, but every time I try, my counts fall to below 10, so I wind up going up again.

Taking prednisone every other day is a common strategy. It's even used at higher doses. It's supposed to have a couple of benefits. Firstly, it's supposed to be easier on the adrenal glands. When you've been on prednisone for any time longer than a few weeks, your adrenal glands shut down and you have to taper off the prednisone to give them a chance to start back up. Taking the prednisone every other day is supposed to make this easier. Secondly, some people say that the side effects are less if you take it every second day, but that's not been my experience. I can really feel it on the off days.

Lily

Arianne:

Some people do well with an alternate day dose and some do not. I know I could not have handled that because I did have withdrawal side effects if I didn't take it every day. Not worth it to me!

I've found the key with prednisone is to not let it control you. I hate the way it makes me feel, the anger, the feeling of being out of sorts with my emotions.. it makes me feel like I am having a constant out of body experience. I've been on tapering doses from 200mg in the past and it really isn't until I am down to 5-10mg that I start to feel human again.

The hunger is pretty bad but I find that is the one thing I could control, I would be starving but I would just say no to the food. I'm already a big guy at 6'1" 225lbs and can not afford to put on more weight.

Question??
Does the moonface ever go away..........I feel like a chipmunk with a jaw full of nuts!!!

Hang in there meme it will go away. How much do you take ?

I have been on prednisone continually at under 5 mgs... but right now I am in a flare so they have raised me to 10mgs... I usually respond pretty well to prednisone, regarding my platletes... but we will see tomorrow as I have to go for blood work again because they have dropped again. Good luck to you sweetie... I hate the dreaded prednisone!!!!