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View Full Version : Yet another Prednisone question!



malin
04-26-2010, 06:21 AM
I used to be on Prednisone when I was first sick but have been off of it for about 2-3 years now until recently.
I am having a flare and my doctors put me back on Prednisone and now I'm finding a lot of my old side effects are coming back but also possible new ones.

So my question is this, can Prednisone give you hot flushes? One minute I can be perfectly fine and the next I'm sweating really badly, even though I am not necessarily that warm. I just get really "clammy" and sticky/sweaty. Could this be down to the Prednisione?

Luce
04-26-2010, 06:36 AM
Almost definitely Malin, I still suffer this side effect even though I'm only on 7.5mg of pred although much less often than when I was on higher doses.
I would find myself suddenly soaked along my back, under my arms and face and hands would be slippery with cold sweat. Sometimes my face will flush but not always.
I can't really recommend much except a good antiperspirant!

Lightwarrior
04-26-2010, 06:58 AM
Oh yes, I can go from normal to my hair being soaked and sweat dripping into my eyes and off my ears (I know, weird huh?). It feels like an internal oven starting up, but my temperature will be normal. I don't remember them being this bad when I went through menopause, but it is the same sensation.

Brooke
04-26-2010, 08:24 AM
I also get very sweaty, gag. It is usally if I am doing something though, not just sitting. Doesn't take much though, I could go clean a bathroom for example and I would be sweating from that. It is very annoying.

Barbara1966
04-26-2010, 09:39 AM
I stop taking prednisone last week and still sweating excessively doing absolutely nothing.

Brooke
04-26-2010, 11:10 AM
Hi Barbara, hopefully that will stop after the pred wears off.

elephant
04-26-2010, 11:12 AM
Prednisone makes me sweat now. Just sitting here I can start to sweat. It was worse when I was on 60 mg, I had to shower three times a day. The laundry was unbelievable! It is much better now. I still get night sweats, but less.

Sangye
04-26-2010, 11:41 AM
Yup, it's the pred! I started on 1,000 mg IV solumedrol for 3 days ("pulse steroids") and went to 60mg from there. When I went home, I had to get up at least 6 times a night to change my pajama t-shirt because it was wringing wet. I had t-shirts hanging all over my bathroom drying out.

I was on ctx and went through chemo-induced menopause at the same time and couldn't take any herbs to help with it because I was on coumadin. I also had to wear full-length latex support hose (tons of blood clots) for several months while this was going on. I had no A/C and we were having a record heat-wave. I can barely think back on those days-- it was a living hell.

Even a stinking 3 mg pred makes me sweat, though nothing like the big doses. If I overexert, I break out in sweats for hours after.

I have found that taking a diuretic while on pred really helps with the sweating. I take 20 mg Lasix (furosemide). It depletes potassium, so if you take it make sure your doc tells you what to do.

jola57
04-26-2010, 04:31 PM
I have been having hot flashes since taking cyclo and pred, and although they are a bit better, I still sweat and feel hot at least 3 to 4 times a day. Well the upside is I don't feel cold anymore LOL

Brooke
04-26-2010, 11:54 PM
Sangye - Does the diuretic help with puffiness?

Sangye
04-27-2010, 12:15 AM
The diuretic helps with fluid retention, but will not greatly reduce the puffiness from pred. There's no getting around that while on pred. I get a lot of fluid retention in my hands and fingers and it helps a lot. When I was doing the rtx infusions and had 100mg IV solumedrol each time, the lasix helped cut down the sweating and fluid retention tremendously. I didn't know it during my first round last October and suffered with severe sweats and swelling for days after each one. In March, I was already taking 20mg lasix daily, so on infusion days I took it after I got home. I hardly had any sweating or swelling and could sleep well.

With lasix the potassium loss issue is a BIG deal. On top of that, pred already causes potassium loss due to all the sweating. Please make sure your doc really educates you about this aspect if you wind up taking lasix. Potassium excess or deficiency can be deadly.

My original doc put me on lasix when I was on high-dose pred to help me with fluid retention. I was so against drugs in those days I wouldn't take it! Dr Seo has told me he doesn't hesitate to write scrips for lasix at lower doses.

onatreetop
04-27-2010, 09:32 PM
I am the sweating queen!!! I drink more than a gallon of water a day now. The water pill helped me a lot. But still sweat just thinking about sweating. I have people come up to me and ask if I am okay everyday!!! I look like I just got out of the shower when I start working. Good thing I am cleaning houses. I have to clean up after myself and trail. Thepuffy face is worse the high my dose goes. i also found that if I dont sweat everyday that the fluid rention becomes painful even in my face. So......... I sweat and sweat. I have learned to carry an extra set of clothes in the car so I can put something dry on if I need to run errands or see people after work.

Nancy C
04-27-2010, 10:32 PM
Hello All..

I am finally off the steroids as of last week and am taking 20 mg of lasix 2x/day amongst other things including Immuran. My Dr never even mentioned potassium when prescribing it. I will be sure to ask them but what are the dangers? I did sweat when I was on high doses of pred but only at night and really not all that bad like some of you dedscribe here. I am doing pretty good although my joints are starting to ache a bit..I am going to the kitchen to get a banana now :)

Sangye
04-27-2010, 11:45 PM
Nancy-- we should have a "You're Off Pred" party for you!! Congratulations! Here's (http://en.wikipedia.org/wiki/Hypokalemia) some info on low potassium. Many people can tolerate 20mg per day of lasix without a problem, but I can't. And 40 mg/ day means you're losing significant potassium. Your lab levels may be "in range" but you might be low-normal and feel lousier than you should.

Onatreetop-- a gallon of water a day is WAY too much water. You are probably increasing your fluid retention and sweating with all that water. (It has to come out somehow) 2 to 2.5 liters is plenty of water for someone who is exerting like you are. With too much water, you're washing your meds out of you before they can work. You're losing all your water-soluble vitamins, too. B vitamins help with fluid retention and they'd get washed right out of you. Too much water dilutes the stomach acid and digestive enzymes and makes it impossible to absorb nutrients properly. Have I convinced you? :D

Nancy C
04-27-2010, 11:55 PM
Thank you Sangye! I agree 4O mg/day seems like alot. I will discuss with my Dr. Have a great day!

Col 23
04-29-2010, 03:56 AM
Glad things are looking good for you Nancy C. One day at a time..
Col 23

onatreetop
05-01-2010, 11:11 AM
Okay. okay. I got it. i am sweating like a sprinkler, With the increase in humidity and temp. I really am sweating more. Guess Ishould start drinking more wine?? Just kidding. I figured i should be trying to replace what is coming out? And I am really thursty.
Here another pred question for long timers.............how long did you take the pred before the side effects kicked in???

elephant
05-01-2010, 12:47 PM
As soon as I took the first dose of 60 mg of prednisone, I could not sleep, I wanted to eat and eat and eat and eat and eat and eat.....then about a month the moon face came.

Sangye
05-01-2010, 01:00 PM
I started on pulse steroids (1,000 mg solumedrol IV) so the effects began within a couple hours.

DEE
05-01-2010, 05:21 PM
i only have to look a an extra pred tab and i swell more my wg consult knows how much i hate them !! i once had a break of them ! and had just about got to normal weight when things to a turn for the worse and up went preds the moon face came back but not as quick as the hump on neck does and when i raise them to a much higher dose i get the shakes for a few weeks !! an't life on preds great DEEx

onatreetop
05-03-2010, 12:32 AM
Yeap the moon face,the wanting to eat, lets not forget the mood slings and sweating. i was wondering about eye sight changes? Muscles being effected? I already learned about the ligament stretching at about 6 monthes. Skin changes took about 3 monthes for me. The brusing was only a month or 2 into it. What else? Trying to remember.

Luce
05-03-2010, 06:18 AM
Dee I have the neck hump too, although it has gone down a little bit - it's actually quite uncomfortable at times when lying in certain positions. It's also got a lovely coat of downy white fur - how very attractive!

Downy hair on my lovely moon face too, and I still overeat despite only being on 7.5mg of pred. When I was first admitted to hospital I'd gone completely off my food and had only been eating porridge for 2 weeks beforehand, chucking my sandwiches at work and skipping dinner. I also had IV pred and within a week in hospital my husband was smuggling in share bags of Doritos and sausage sandwiches! However I wasn't getting fed much hospital food as there was an awful lot of fish on offer which I just cannot stand.

The other side effect I notice the most is leg cramps, usually in bed in the middle of the night which disrupts my sleep and my husband's when I start wriggling around and yelping in pain.

elephant
05-03-2010, 10:44 AM
Luce keep an eye on those leg cramps.....they could be caused by low potassium or calcium or magnesium. Another cause that we been talking about is blood clots. I did have some cramping in my calves when I was on high doses, and I did sweat alot. I think it could be due to having low potassium, so I ate a orange and banana a day.
I developed a hump in my back and other places.

DuaneHart
05-03-2010, 11:36 AM
I sweat so much on the pred that I have to carry around a washcloth at work just to wipe my face. I am not exagerating--the sweat RUNS out of me. It's diagusting!

Sangye
05-03-2010, 01:26 PM
How are you doing Duane? Nice to see your smiling face. :)

jola57
05-03-2010, 03:14 PM
Hey Duane, know the feeling. there is nothing as lovely as speaking to a client and first feeling the lip dew form, then the sides of the nose go moist and finally the rivulets of sweat pouring off the temples. Then trying to invisibally dry off the sweat. I just keep going as if nothing happened.

DuaneHart
05-03-2010, 10:20 PM
I'm doing alright. I did spend a week in the hospital over Easter though. I had been tapering off the pred from the original 50mg a year ago and was down to 10 mg pred and 15 mg mtx when I started getting sick. The good news is that the wegs IS in remission. All my bloodwork and markers came back excellent and had none of the wegs symptoms. It was my Ulcerative Colitis/Crohns Disease that came OUT of remission after 13 years. So now they have increased the pred up tp 60 mg and the mtx to 25 mg. Now also having problems with my knee (ligament problems from the pred) so am having an MRI done today to see how much damage is done with that. I feel like a snowball that is just getting bigger and bigger (actually 65 lbs bigger than a year ago!) and rolling out of control. But, I trust my team of docs here at Mayo and know that things will get better. I have also purchased TWO of the "Body by Prednisone" shirts that Doug had come up with on Zazzle.com and have had sooo many comments when I got to my appointments. THe doctors, nurses, other patients all think it is one of the best shirts they have seen! You have to try to keep a positive attitude about things though it is difficult at times. I hope everyone else in this wonderful group is doing good. I haven't been on in a while so I've been out of touch. Talk soon.

Sangye
05-03-2010, 11:57 PM
I forgot you have UC to deal with too. I sure hope they get it under control quickly. Have you ever sought holistic help for it? There's a lot they can do that won't interfere with Wegs treatment and might keep you lower on the dreaded pred. A naturopathic physician (ND) would be the best.

onatreetop
05-04-2010, 10:41 AM
The sweat rag is like taking the keys out the door. hand in hand. I worked one firemens breakfast to help the boyscouts and everyone was very concerned about me. My prim doc was there and didnt say anything but " it is a workout ? isn't it?" My reply was anything seems to make me sweat so......... The hump is no fun and the white fuze I use the clippers on now. It grows more than my 14 year olds fuzz stash.
I am glad that everyone is getting a bit better than the winter. It did seem rough for everyone.

Doug
05-05-2010, 11:24 PM
Hey, Duane! Thanks for your contribution to Vasculitis Foundation! I happen to be sitting in my "Body By Prednisone" t-shirt at this very moment. I wondered who bought those t's. Zazzle has a strange way of handling purchases. They let you know of individual purchases by e-mail, but the exact amount of the "profit" (in this case, the contribution to VF) isn't known until you reach a certain dollar amount. I've decided the easiest way to handle it is just send a check to VF, hoping I didn't short them. Another thing, Zazzle lumps all profit/contribution funds into one lump, so that makes it difficult to keep things separate.

Oh yes, sweat! I'm not on Prednisone any longer (last time I was was April 2005), but I still have the sweat issue. Perhaps it is a result of damage done to the vascular system (or brain!?) by all of the high fevers up till diagnosis (roughly 10 months from onset to diagnosis, a period during which I frequently woke up in clothes and bedding so wet I had to change out both to get back to sleep. Even now, little exertion results in big sweat. It bothers me alot, and has affected my willingness to do things in public if there is some likelihood I'll be drenched in sweat for the greater part of the time I'm in public.

Cindy M
05-06-2010, 02:37 PM
I haven't been to the dentis since November of 08 when I started getting sick. In October of 08 I had some dental surgery done on both sides of the upper teeth. I have bridges on both sides and went to a periodontist and had some posts implanted on both sides to better hold the bridges. Within a month or so I started getting alot of sinus and teeth pain. At the time they weren't sure if I was dealing with an absessed tooth or an infection from the surgery. It turned out after 2 months of pain and antibiotics it was WG. I have often wondered if this surgery set off the WG or not.

I am now dealing with more teeth pain (my teeth have never been very strong, spent many hours in the dental chair) and I am now going to go back to the dentist. The dentist I was originally going to has since retired so I have made an appointment with a new dentist (this does not thrill me, I have quite the fear of dentist). I am a little worried because of the amount of meds I am on. Does the freezing work the same when you are on preds and cyclophosamide. Because of my sinus involvement I always have teeth pain. Also, when all of this started with WG I never did go back to finish off having the bridges properly completed so both of them are temporarily glued in place. Man, what a mess!!!!!

elephant
05-06-2010, 07:54 PM
I had many visits to the dentist and had a tooth abscess 5 years ago. My teeth hurt when my sinuses act up or infected. It is annoying! This disease is a pain!

Sangye
05-06-2010, 09:45 PM
Cindy, there is evidence that certain dental work like root canals can set off autoimmune diseases, so maybe it did trigger the Wegs.

elephant
05-07-2010, 12:09 AM
I had a root canal in 2005, it took forever to heal. Two months on antibiotics.

Doug
05-07-2010, 02:32 AM
Cindy, there is evidence that certain dental work like root canals can set off autoimmune diseases, so maybe it did trigger the Wegs.

I'm not so sure a root canal I had in early October 2007 didn't lead to the herpes zoster mess I have endured since late October 2007! It certainly struck a body predisposed to infection and other mischief, and has been a much worse component of my overall health than WG, if you can imagine such a statement.

jola57
05-10-2010, 02:47 PM
A friend of ours, an internist, did some studies years ago and he is convinced that wegs is a result of an undiagnosed and untreated infection. Since it was in Poland not much notice was taken of the study and it was never followed up.

elephant
05-10-2010, 08:44 PM
Jolanta, I would partially agree to that, I think we ( us with Wegeners disease) were born with a defected immune system and then we get a untreated infection to trigger Wegeners. Another theory!

Nancy C
05-10-2010, 09:57 PM
Everything I have read says that Wegs is not genetic/hereditary. My mother died of lupus. I find it hard to believe that it a coincidence that we both had/have an autoimmune disease!

A couple weeks ago I wrote that I was off the prednisone..that was a good day! Well I am back on them after only about 3 weeks as I had joint pain and the bottom of my feet were hurting which was one of my first symptons before I was diagnosed. I knew my Doctors were bringing me down to fast and I expressed my concern to all of them. They kept concurring as I went from 10 to 2.5 mg in about 6 weeks. Once at 2.5mg I was only on that for a week and they told me I could stop. Now they are all agreeing that I was probably right. I know I know I know I need to find a Wegs specialist. I promise I am going to make an effort to do that this week. Other than the joint pain I feel really good so I am not complaining.

To all the Mothers out there..I hope you had a wonderful Mothers Day!

Sangye
05-10-2010, 11:42 PM
I still vote for the toxins origin. Toxins dysregulate the immune system. That allows for infections to take hold. In my case, there's no way it was caused by an infection because we were massively boosting my immune system and it only made me sicker. The type of treatments I was doing would easily wipe out Lyme, numerous parasites, viruses, fungi, bacteria, etc..... I was, however, exposed to huge amounts of toxins--particularly when I first got symptoms. The only proven causes of Wegs are solvents and silica exposure, though they acknowledge those aren't the cause for all cases.

Nancy, we all learn things the hard way with Wegs. Don't be hard on yourself. Now your docs know to listen to you and YOU know to listen to you! That can happen even with a Wegs specialist. Last year I knew I was flaring. My original symptoms were reappearing and/or worsening. My Wegs doc attributed it to other things and it didn't become apparent for several months. By then I was in pretty bad shapen with hemorrhaging lungs. Now he listens differently to me, realizing I truly know how Wegs affects my body.

Dropping your pred that fast was inexcusable though. Any rheumy should know better. Fast drops can trigger many autoimmune diseases to flare. What dose are you on now?

Nancy C
05-10-2010, 11:54 PM
Thank you Sangye. I have been following your story through many of the threads and you have really been through the ringer. I am so sorry.

I am currently on 2.5 mg I do not think it is enough as I am still sore after a week. I am going to call my rhuematologist today. Feels like I am going backwards..ugh

Sangye
05-11-2010, 12:02 AM
Oh, I sure know how that feels. Don't lose hope! Sometimes with Wegs you have to take a couple steps backwards to really move forward. I've seen that happen with a lot of Weggies. As frustrating as it is, it's better to get control of the Wegs sooner rather than drag it on, like has happened with me. Channel your frustration into determination this week as you search for a Wegs doc.

elephant
05-11-2010, 12:25 AM
Nancy, I had to adjust my prednisone three times, three times forward, three times backward and hopefully this time forward.

DEE
05-11-2010, 01:39 AM
just popped into school office where i work at lunchtime they were all huddled up against the radiators cold here today ! was having one of our pred moments plus they just taken me of HRT moment all at the same time.
i also had my coat open they was instantly worrried i get cold and did i want a lift home and when i got to the dripping off hair stage i think they were ready to call an ambulance :)
when i said i was feeling bettter than i was they looked as me as though to say I dont think so....
the one thing we did agree on is that i have had my fair share of probs tis year so am hoping for better news from wg consult on thurs #
you never knoe i might be able to start tappering down preds one day cant get below 25mg without our friend showing up in onr form or another
one day!!!!!!!!!! DEEx

Col 23
05-11-2010, 10:54 PM
Interesting about the dentisit. I went a couple of months ago and the needles didnt numb my mouth. I had 5 and still no numbing. I am going under GA to have my teeth done. New appointment next week. Has anyone else been affected by this. I thought we talked about this before and Sangye had this problem.

My thoughts only on what causes WGs - are prolonged stress which can affect the adrenal glands and that in turn can affect the immune system.

Thinking of you all
Col 23

Sangye
05-11-2010, 11:06 PM
Yup, I had this problem but it began about 20 yrs before I got Wegs. But then right before dx a new dentist was able to get me numb quite easily. I think it's independent of Wegs. I've heard of it happening in non-Weggies-- one day without warning the drugs just don't work.

I agree with your theory about chronic stress being a cause, Col. Adrenals are a big factor in immunity. I was under a huge amount of stress for a couple years pre-dx.

pberggren1
05-12-2010, 06:02 AM
I was under alot of stress too just before dx, maybe for about 4 moths or so.