Oral Prednisone Side Effects

Are you on once a day or once a week pulse? Once a week pulse has fewer short term side effects than once a day dosing, but over long term it is suppose to have the same problems. I was on pulse for 4 months and did not gain weight, did not raise BP, no facial swelling, no anger issues, etc. I did notice that by the end of 4 months I needed 3 naps a day, got very nervous, got sore muscles, skin got very dry and a few other things. This group of symptoms also correlated to the drop of one of my thyroid levels and once i quit the Pred, those symptoms either went totally away or are just about gone (only been off of pred 1 month).

I am in the process of gettn weaned off the predizone..I did experience the weight gain, round face. I dont know what else I did exerience, I am gettn my 2nd emg test tomorrow to see if there is anymore blockage of my nerves cause i have been experience new tingling sensations. Sorry if I am not a big help

Tim, I have CIDP and have been taking Pred since last march, first at 40 mg/day. About two months ago I started tapering off and am now down to 30 mg every other day. – hope to be done early in the new year. When I started, I could not walk without aid and was getting worse by the day. soon after starting pred, I started reqaining strentgh, slowly. I am far from “normal” but lots better than last winter. I don’t know how much can be attributed to the pred. or just the progress of the illness.

I can’t help you with long term effects of Prednisone, because I don’t know yet. As far as short term effects: I did go through a grouchy spell in the first month or two. Some insist it never passed. I think it did, that’s my story and I’m sticking with it. Other effects have included thinning of skin, mostly on arms and hands that results in easy repeated bruising and scratching, swollen face, and adema,body, legs and ankles. The latter has really only became significant in the last 2-3 months and in fairness is probably also related to kidney issues. Also had a fair amount of neuropathy and muscle cramping. I’m also diabetic, so I don’t know how much of these things can be attribted to the pred, but I have notced a return of some hand and arm sensations since tapering off.

I am hopeful that most of the effects will dissipate after I completely get off the prednisone, but I can’t deny that the overall help it has given me, despite the side-effects, has been worth it.

hi tim 😉

so yeah, i was diagnosed in dec 07 with cidp. got lucky and have one of the best neurologists in the field (dr. jonathan katz).

unfortunately, we waited a bit too long to begin any kind of treatment, hence i progressed to my worst point this past summer where i had difficulty even lifting myself from the couch and making my way to the bathroom. i was very sick and weak.

a loading dose of ivig not only did not work for me, it actually made me worse. against my initial wishes, my neurologist and i agreed to go on prednisone. the thinking he expressed was to relieve the disease enough to get me stronger and more able to try another course of treatment that takes longer to affect you than prednisone. so i started at 60 mg / day, sometime around june and we have been gradually trying to reduce the dose to see at what point i would potentially relapse – the obvious goal being to be on as little as necessary for efficacy. I HAVE HAD NO REAL SIDE EFFECTS DECREASING MY DOSE AS I DID IT BY 5 OR 10 MG PER WEEK. i am now at 25 mg.

i did and do however have plenty of side effects from the prednisone itself. positives first : i immediately felt relief, literally the morning after my first dose of prednisone; i was stronger and had more energy and significantly less pain – to give you a specific example, after 24 hours on prednisone, i was able to hoist myself off a couch without assistance. subsequently, pred felt like a huge relief for me, as those 3 positives ensued.

now for the negatives, the side effects : in the beginning, mostly unnoticed, the feeling of being bloated and stomach upset as it’s hard on the lining of your stomach and gi track. to compensate, and with my doctor’s permission, i took an acid reducer.
taking an acid reducer is a life-saver for your stomach on pred, and definitely take it with food to help in this regard.
as an aside, pred has a nasty taste and the pills are porous so whatever you’re washing it down with have it ready to go.

i quickly began gaining weight, despite eating consciously, and of course the weight that you gain on pred is strangely distributed. you may have heard of cushing’s syndrome – the weight gain is primarily in your face, belly, and upper back (it’s a good look !!)

i’ve been reassured by my neuro that once you stop pred you just return to your normal shape and size, and many people i have spoken with have attested to just that

as my neurologist reminds me, stick with it for now, it’s temporary

my blood pressure runs and ran a little high on it, but nothing the doctors were particularly concerned about, as long as it doesn’t spike it’s considered par for the course while being on steroids. having said that, there are some whose blood pressure will be too high and who simply cannot remain on it.

the other concern is blood sugar, and mine is higher than normal, but not of clinical concern.

having said that, some people become diabetic and i know at least one who remains diabetic even after not using pred anymore (but i don’t think that’s the norm). my understanding from my neurologist is that high blood pressure and/or high blood sugar ceases to be a problem when prednisone is stopped

another side effect is tremors and shaking. my hands shake such that i wondered if i had parkinson’s disease. also when i am standing, let’s say bracing myself against a wall or holding a table, my legs will sometime shake – so you can live with the shakes, but they are sometimes annoying and embarrassing in public.

another side effect : charlie horses. so i assume you know what that is : your muscles start cramping up and spasming – i get them in my abdomen, front and backs of my thighs, and the inner part of my forearms. the charlie horse problem only developped about 3 weeks ago as a side effect, even on the reduced dose, so it would seem that some of the side effects of pred are cumulative – in fact, i am quite certain they are, which leads to the next side effect :

the “roid rage” issue – in my case, for the first 3 months i had no emotional mood swings of any kind, but about a month and a half ago, that seemed to shift a little : i felt tense and on edge and to again concretize it my quickness to anger became apparent when i drove, but in other ways too, being short with my partner or crabby with my housemate (but i never kicked a dog 😉
so to compensate i pay close attention to my feelings and the fact that they have the potential to be erratic and attempt to behave appropriately.

you may break out with some acne – i have a prescription topical antibiotic lotion that i use after i wash my face and although my skin changed a little bit i have been able to keep that aspect under control

on a positive note, if you have lost your sexual ability, it gave me mine back – that was pretty cool because it had been gone for several months

another VERY annoying side effect : sweating – i can’t express stronger how incredibly hot and sweaty you can feel on pred, and i live in san francisco where the temperatures run low — i would have to shower and change clothes regularly as they would be drenched at times.

in general i felt speedy sometimes but i would do it all again. i had no strength left, i could barely feel anything from my butt to my feet, and my hands were completely numb. the pain i was living in was significant and i was really in need of some relief – that’s the key with prednisone : it’s designed to give some relief and to quote my neurologist to “pull you up … so that we may use a safer drug to treat the condition.” and nothing works like prednisone to do just that.

currently, the goal with me is to eventually wean completely off pred and let the cyclosporine continue to work, and by the way i’m happy to say that it’s been working very well such that i don’t even feel the decrease of prednisone so i’m feeling positive right now.

i’m really sorry you’re dealing with this condition Tim, i tried to be as specific as possible to answer your side effect concern with pred, and i completely welcome you to stay in touch with me, ask me any question you may have, or to just chat about the illness. feel free to call or write if you want to follow up and talk about any of this.

warmly,
alice

Tim,
We have no experience with pred. but I do remember reading it can cause leg weakness in some, asside from all of the other side affects you already know about. BTW has anyone ever told you you look like Dr. Drew from celebrity rehab? You could be his twin!! Anyway, it does sound like the pred has been positive for you thus far.

DAwn

Hi, Tim.

I’ve tried oral preds twice and both times had such bad gastrointestinal problems I had to quit (constant nausea, severe acid reflux — I’m one of the few people to lose weight on steroids :p ).

I’m now on monthly high dose IV steroids and aside from the three days of withdrawal every month am not having any side effects.

Keep fighting,

Deb
London

Tim-A friend told me today to change my water to Fugi water, as it is alkaline based and helps the stomach acidity. Going to check it out, but I thought I would pass it on.

Alice covered the goods and the bads of prednisone beautifully, Can’t think of anything else to add, but one thing-it did get me walking independently and doing lots more toe ups from a walker and no toe ups.

Good luck Tim.

Hi Tim! I have been on Prednisone a very very long time and seen probably the most damage from the drug. But I have been long term prednisone Meaning every single day since 1993 but did wean off and was free 4 years. So we are looking at 12 years of prednisone and it’s been an average of at least 10mgs a day on up to 60 mgs and also the pulse steriods too that were very high doses. With what you are taking and the little time taken, you most likely won’t have any damage from it in the future.
Me! I do have Osteosporsis which was most likely prednisone induced. The B-12 problem most likely was also caused by it. Long term you have a chance of getting infections much easier than the average person, weight gain. So far these are the only problems I have had. After taking it so long my body has adapted to it. Meaning I don’t eat like a pig like I did when I first started on it! So I am more careful with my foods I eat.
Over all I have been fairly lucky as far as having bad bad side effects. Just Osteosporsis, Infections I get easy so I am careful about that too! B-12 and Vitamin D problems. But other than that, I have been fortunate. Considering how long I have been on it!
For me! I am grateful that they have Prednisone for without it I would have already been dead. Prednisone has given me 16 years of life that I would not have seen otherwise. I would have died at an early age and not seen my children grow up or my grandchildren.
So that drug has given me extra time that I would not have seen years ago if it didn’t exist. It does have it’s risk factors but so do many other drugs around. Some of the newer drugs they have I have had more problems with and had reactions too. And yet Prednisone seems to be the one drug that has helped me more than any of the other drugs I have taken.
The only problems with any medications is when you take one, for some reason others seem to follow.
Here is what I have to take every day!

Prednisone 10mgs. But right now that has increased to 30mgs.
Ibuprophen 800mgs 3 x day
Plaquinel 400mgs a day
Gabapentin 300mgs 5 times a day
Clonazepam 1mg at bedtime
Zanax .25 3 x day
Ambien 10mgs at bedtime
Singular 10mgs at bedtime
Albuterol 0.83 Nebulizer Treatments 1 Vial 4 times a day
Maxair AutoHaler 2 Puffs 3 times a day
Fosamax
All 11 of these drugs were started on me 16 years ago because of Central Nervous Systemic Lupus. Also have Lupus lung disease. Fosamax was added later on.
Now I have to take
Synthroid
Lovastatin
Vitamin D 50000 IU
B-12 Injections
Nexuim
Reglan
and IVIG Rituximab which I don’t like taking. Gives me the runs! LOL!
18 different drugs and the list keeps growing. Lets just say the older we get we will most likely see things happen to our health that will increase medication usage. I had to start out early because of having Lupus. But without those drugs above I would have never seen a longer life and those drugs have given me 16 extra years and maybe possibly more.
I think you are going to be fine taking that prednisone. Now if you have to take it like I have had, then there would be some concerns to worry about. But I think you will be okay! The amount of time he has you taking it, is really short term and should not cause any problems. It’s the long term treatment that can cause concern. You’re going to do great! Hugs!
Linda H

Tim,

I also participated in the Oral Prednisone therapy. I took 60 mg daily for some time. I did suffer from some side effects and I did learn some tricks. I am off of it now and recovered from the experience. It is a functional therapy in my humble opinion. At least it was for me.

I started at 60 mg and took that amount for three or four months. Then I began to ratchet down. 60 one day and then 0 the next, a coup0le of weks later ir was 40 one day and 0 the next. Then 30 and 0, then 20 and 0. When I went lower than 20 and 0 I suffered a bit. I stayed there for some time (months). I had an upcoming family reunion and went to 40 and 0 for a month, it helped me through the tough times. Finally I got down to 10 and 0 for a month or so and then went 10 and 0 and 0. then 10 every four days, then stopped. I was on Pred for probably a year and a half.

In that time, I had improved strength and stamina. I suppose it helped the CIDP itself, my neuro said so anyway.

Side effects. Emotional upheaval every time I changed dosages. I mean serious upheaval. I am still married. I took the med in the mornings. that way I still slept at night. I gained 50 pounds. I have since lost 40 of them. Oh, the cravings to eat !!! Physically I suffered little, partly because I was not on the drug too long.

I think it is an appropriate treatment, just not long term. Be careful because there are a ton of side effects, which I am sure others have expounded.

Good luck

Not sure if tis pertains to you, but some types of CIDP are made worse by steroids.

Hi Tim,

I understand where you are coming from.. I’m not sure what is causing your weakness issues.. I know from my experience, I have up and down times, with strength, fatigue, numbness, inflammation.. I think a lot has to do with my being on a pulse prednisilone prescription “”(500 mg/wk)… I’m wondering if the weakness you are feeling at times, is because of a lag of a prednisone rush, and your body compensating? Kristen, I think, may have a possible explanation as well as others.. Just a thought.. dean
Also, I wonder if any time we introduce quanities of foreign stuff into ourselves, our bodies spend energy (fuel/muscle), counteracting this, therefore you feel weak??…. Einstein was right…… ????

Tim,

sorry to hear things arent getting better yet. I really hope things start to turn around soon.

I find it strange that yet another one of us that has had these epidurals in our backs ends up with CIDP. I’m not saying I think that’s the cause, but, isnt it strange ? I had two epidurals into my spine for a disc issue. It worked wonderfully and took away my pain. Within a few mos, I was back to the dr b/c I couldnt feel my toes. Here I am, two years and two mos later.

I ran into a stepstool last night and really knocked my shin hard. It immediately swelled and bruised. I dont know how to feel tho…it didnt hurt.
I guess that could be a good thing…but I dont really like the idea of not being able to feel something like that !

Let us know what your dr says.

Stacey

LOL! It’s not funny Stacy but this reminds me of my never can feel feet and I don’t know how many times I have stumped my toes on furniture because my balance is all messed up! I have had more broken toes than I can count. But the strange thing is I feel instant pain at first and then the pain goes away. I droped a large wooden chest on my foot back in February and my foot puffed up something aweful. Andy talked me to go to the ER because he knew my foot was broken. Got there and they did the Xray and placed me in a jelly boot. It was broken. Next day I was walking around on it. Linda the Toe Stumper is a pro at running into things and for some reason it’s the toes that catch h…!
Hey Tim! I did not know you too had the Epidural. I too had them and right after that my nerves went crazy. So now I know of five in here that had the epidurals and after that ended up getting CIDP!
Kind of makes me wonder about them. Possibly being a danger to those that have autoimmune disorders. Maybe possibly we had something in our genes and when messing with the spine it causes severe problems later on. Still a theory but just too weird that many of us have had them and later get problems.
I have learned one lesson from my CIDP and attacks on my nervous system. Never again will I have any surgeries that involves nerves. Spine surgery, epidural injections, nerve biopsies. Seems like each time I did, I landed with a massive attack on my nervous system. Now that I know how I do, I’m going to be extremely careful!

Have read your notes several times but this is the first time to post one. We are just wanting to compare notes and see if there is help. Will try to be brief. My husband, John, diagnosed with CIDP 4 years ago, had IVIG for 2 years. New doctor stopped them, prescribed Cell Cept. We were told these would just slow down progress of the symptoms so it is hard to tell if they helped. He continues to get worse and has never had any remission or improvement. The neurologists here have said they don’t have any other treatment to suggest. Mayo Clinic has a waiting list a year plus.

We knew Prednisone was out there but not recommended. I really appreciate the posts concerning the usage of it. The one from Alice was especially informative. At the rate he is going, John will be paralized in legs and arms in two years. So you see our urgency.

We moved from where the diagnosing doctor was to near Wichita, KS and have not found a doctor who seems experienced with CIDP.

Any response from you readers would be appreciated.

Hi, Tim;

I’ve been on pred continually since 1995. I got up to 60 when I have a flare up (and I also get PE and IVIG), and then down to 10 every other day when I’m good. At 5 every other day I get symptoms again.

minor bad things:
I’m 20 lbs overweight. It’s not the worst thing in the world.
I have slight osteoporosis, which is kind of annoying for a 40-something
I have the “moon face,” but that also means I look 10 years younger 🙂

one big bad thing:
I ended up getting osteonecrosis of the jaw from an interaction of pred w/ fosamax (an osteoporosis drug). Had to get gum surgery. Obviously, I’m off the fosamax now!

on the up side, I get sick MUCH LESS than I used to!

Take care. I hope you start to improve soon.

-Marie

Hi Tim,
Kevin’s freaked out day is Halloween, this was the third year in a row things were funky. At least this year he was able to walk!!! hope you get things ironed out. Personally, I think there is a connection between fall/winter weather and relapses. So many people seem to get sick and relapse at this time. We have just been through a confusing time with Kevin as well, I wanted extra ivig and doc felt it was just because of a cold which heightened symptoms. He was right, stregnth was good, but tired and sometimes weak. He seems fine now, but still watching, this crud is so…. confusing.
DAwn Kevies mom

I don’t need a holiday or steroids to “grab” a few pounds, they just magnetize to me all on their own! It is called a seafood diet, see food and eat it.
DAwn

Hello Tim,

Frustratingly for many, one of the side effects of prednisone is muscle weakness. It usually does not manifest itself as quickly as you are experiencing, so the weakness may not be of the same type. In my use of prednisone, I have occasionally felt weak, but it was more a feeling of weakness than actual weakness. There is a cycle of effects, which depends on the dosing and timing. This link [URL][FONT=TimesNewRomanPSMT]http://noairtogo.tripod.com/prednisone.htm[URL] has lots of useful information. I have generally take prednisone either as an every-other-day dose or as a weekly pulse. If the amounts are not too large, I would consider one or the other.[/FONT]
[FONT=TimesNewRomanPSMT][/FONT]
[FONT=TimesNewRomanPSMT]MarkEns
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Tim,

I replied to you before reading this. Glad you are getting into the neuro on Monday. I’d bet he wants to see you to see if you are in a flare up or what is going on. When I did the roids, I didnt have anything get worse with the CIDP….it was all the emotional aspect of it that I just couldnt handle it.

Whine all you need…b/c when it’s my turn…I’ll be sure to do so as well. 😮
Besides, you arent whining…you are just worried and wondering.

take care my friend,

Stacey

Hey Tim! So sorry to hear that the Prednisone is not working for you. Dr. Brown will most likely start another treatment plan. I was really hoping the Prednisone would help but if it’s not working then they might have to start something else. Wishing you good luck today and hope all goes well!
Happy Thanksgiving!
Linda H