Steroid side effects

Good article:

www.hss.edu/conditions_steroid-side-effects-how-to-reduce-corticosteroid-side-effects.asp

Nice.. I'd add that tapering slowly will not necessarily stop any joint pains; in my experience they will occur however slow the taper.

I'd also add that dehydration caused by the higher blood sugar is common, causing muscle cramps and for those susceptible migraines, either ocular or full-blown.

Also not mentioned is blurred vision. Whether that's caused by water retention, dehydration or neither I don't know but I always found that my distance vision was worse.

Good article and agree with Ann. I felt as if I had flu the whole time I was tapering

Oh it doesn't come close to covering everything! I thought it was a start. I realized that we need more information about steroids so I plan to add articles to this as I find them. If any of you find one, feel free to post it.

Sandi,

Thanks for the article, I am very interested in steroids and the side effects.

My experience documented in the past, was not good and I am in a way more concerned about the effects of them, than the ITP.

Mood swings, reactions to take an example, I was on high dose last year and tapered, counts then all ok. I read that the side effects cease once you stop taking them, and I agree appetite went normal, acne cleared, came off my all night high and was able to sleep without sleeping tablets. It's interesting that the article talks of coping with physical stress could be impacted for a year after withdrawal. I am interested in mood / agitated mood, I considered myself laid back prior to this. On steroids I scared myself how I reacted to things, now I am off them, I sometimes have flashes of terrible over reactions to things that wouldn't normally bother me, like when I was on steroids. I thought that would stop but question is that still as a result of these drugs. Or is simply the stress of reconciling a chronic illness effecting me in this way?
I fell I am obsessing again but I have erupted in bruises again and I am going to the hospital again tomorrow. Or maybe ITP low counts effects moods, I am no teenager so where's it all come from? ITP? Effects of Steroids? Or just inability to cope with having this in the first place, is it wearing me down?

John:

It could be a combination of things. Most of us, prior to ITP, were able to deal with the stresses of life fairly well. Of course we complained, but we had things under control. When ITP hits, it causes a spiral because this is bigger than we are. It becomes a full time job to manage the symptoms and side effects. When you add that to the other stresses in life, it can become too much to handle. People don't understand how important health is until you have to struggle with it.

Sometimes the key to living with ITP is to know that you can handle whatever happens. If steroids are your only treatment, the fear of having to go back on them can be overwhelming. The fear of side effects taking over your life can be massive. There is also the fear of low counts. You can come to terms with all of it and that takes time.

I shouldn't speak for you, but this was how I felt the first year. I got a handle on it when I realized that I CAN do this. It's not the end of the world and it will only affect me as much as I let it. Not that you can control the side effects, but you can control how you handle them.

I don't know if steroids can actually change your reactions to stress after being off of them for a long time, I'd guess that depends on the person and the length of time you were on them. But I do know that having the disorder can change you for a while and yes, it can wear you down.

The article talks about "low" dose and "high" dose.
How many milligrams fits those definitions?

I've been taking between 5 and 20 mgs of prednisone for 2 years straight. (Ann once told me she didn't consider that "low".)
I'm worried that my adrenals are toast after that long a time. If I ever get off this stuff, will they recover?

Janet:

I don't know the answer to that question. I've been on 5 mg to 20 mg's for the past ten years straight. At this point, I know I'll never get off of them. I take 15 mg's of Medrol at this point. I guess it would make a bit of sense to think that anything below 7.5 mg's wouldn't be a high dose since that's the amount that the body produces anyway.

The only way to know is to try to taper. A few years ago, I tried to taper by 1 mg every six weeks. I got to 3 mg and had to go back up to 5. I tried a few times and couldn't do it. Two of my doctors really wanted me to get off of it. Part of my problem was having Lupus; Prednisone was the only thing that literally kept me from feeling like the Tin Man. But when I got to 3 mg., I felt like my body was going to shut down. I sat staring and it took everything I had to function. I think that was definitely my adrenals. I was working at the time and had to function. No choice. The bad part is that you can't have your adrenals tested while you're on the drug, so you have no idea how well the adrenals are doing.

I agree! It can be very hard to get off of pred! Been off and on prednisone since 2009, mostly on. I started at 80mg and tapered down to 20mg. Then tried Rituxin which worked enough for me to taper down to 2.5mg- that took 6mos until Rituxin became ineffective.

At that time I had to bump the dose back up but decided I would never take over 10mg of pred again no matter what my counts were. Even 10mg became too high for me so I held the dose at 7.5 or lower for the next 5 years (in between taking Promacta then Nplate).

I now know that 7.5 will still do damage- bone loss, high blood pressure, moon face, weight gain, hair loss, anxiety. For me the side effects even at a low dose got worse and worse the longer I was on the drug. So I guess my answer is that 10- 20mg is okay if you're only on it a couple months. If you are on it a year 10mg is high, under 5mg is low.

I know the fluish feeling of adrenal insufficiency-ugh. I'd say if anyone feels like that they are tapering too fast. I tapered 2.5mg down to zero in over 3mos- that is slow! But I felt so bad I couldn't taper any faster. And like Ann said, even after I was off of it I still had joint pain and fatigue.

For the first week of no pred I was very fatigued and sleepy, it was hard to make it through the day. I was sleeping like 10 hrs, and slept most of the weekend. Then after a while I was able to get through a day. Still now 3mos later I have fatigue, joint pain, inflammation- but better each month.

Janet- I was also very worried my adrenals would not come back. My doctor was confident that they would come back- that helped. But he also said if they don't I could take a small dose of prednisone for LIFE! arggh that was motivating! haha So I pushed to get off of that drug. An endocrinologist told me that the only thing that will heal the adrenals is sleep.

I have also been concerned about permanent bone loss- I went from normal density to osteopenia. My hemo says there could be a rebound effect causing the bones to rebuild once I quit the prednisone- hope so. My hair has become much thicker and I have lost 20 of the 30 lbs that I gained- yah! (The weight didn't just fall off. I quit eating sugar which deserves lots of credit) good luck and good health!

Oh yeah, long term side effects are still possible on the lower doses if you take it long enough. I have been having stress fractures in my feet, three of them now, so I know it's affecting me. Moon face, yeah, I forget what I really look like. I also have very thin skin. My arms are always marked up just from doing my daily things. I'm actually surprised that I don't have more problems though. In addition to the last 10 years, I'd been on and off of it since 1998. Love-hate relationship.

That fluish Prednisone withdrawal thing is what having Lupus feels like. ALL the time. I can get rid of it if I take really high doses, but then I get the nasty side effects. I've also been doing Solumedrol IV's and that is making me puff up. Don't like that much!

Hi!
My question is about a new experience since medication, acute anxiety!
I am on 40mg Pred taper paused for a week until tomorrow when I see my consultant.
My counts fell rapidly during the taper so the aim is to stabilise and then reduce again.
The thing is I am having extended times (hours not minutes) of anxiety-like feelings that are getting worse during this week, despite no reduction in Pred. It feels as if everything is in tremor and I can see my hands shaking.
I am able to watch this going on and have strategies to keep grounded e.g. breathing through& knowing it is the meds one way or the other.
My question is...
is this from the withdrawal...overall reduction from 65mg, or is this a side effect from taking Pred?
Thanks for your help,
Ferv

It sounds like a side effect from the drug. It will diminish as you taper although I had the tremor for months after I was off it. Not all the time, just sometimes. It went eventually.

The longer you are on Prednisone, the worse the side effects can get. Shaking and anxiety could be both the result of high doses or the taper. Higher doses can make your heart race and blood sugar can go up which can cause it. Tapering can also cause it since your body is expecting a drug that it's not getting. I noticed that I would start to feel that way everyday when it was time for my dose. Doesn't really matter; it's caused by Prednisone either way. I had the same problem and did what you did...breathe and tell myself it's just the drug. Distractions can also work sometimes. Watch a movie, take a walk, listen to calming music, take a bath.

Ann & Sandi,

Thank you for your responses and the tips too.
I suppose so, either way I've got to try to reduce...and in the end I suppose it doesn't matter what causes it!

Ferv

Still tapering...down to 20mg, count 98 this week.
Day 5 of latest reduction:
Side effects have changed...anxiety much less, but worse insomnia and that brain mush feeling is back. Under par but manageable if I'm not doing too much. 'Flu without the fever is close to it.
So I'm taking it easy and hope it will pass. If it does I'll reduce another 2.5mg which will probably be on day 10 of the current reduction... all being well.
I've read about alternating. so that would be 20 mg -15mg -20 mg etc for the next block reduction instead of 2.5mg less (17.5mg) every day.

What do you think? Has anyone tried this?

I was initially put on alternating dose but it made it worse so went onto the 2.5mg reduction instead. it was a smoother ride that way.

Mrs B

Thank you, that's helpful

Fervenz,
I am not a doctor so don't take anything I say as a recommendation, it is just my experience. I did 20mg for a week, 15mg for a week, 10mg for a week, 7.5 for a week, 5 for a week and then alternating 2.5 and 5mg and then nothing. I started Prednisone at 60mg on February 24 and finished my taper on June 18. For me, it seemed to go just fine with that plan. Platelets of course went from 88,000 on 20mg of Prednisone down to 24,000 by the time I got to 10mg of Prednisone. I figured if they needed the Pred, they were going to drop no matter my taper and I wanted to get off that Prednisone in the worst way.
Emily

Emily

Thanks for sharing your experience. I am about where you were on 20 mg and it seems the count will fall away, as it does with almost everyone, once Pred leaves the scene. I'm on no other medication at the moment and promacta is not readily available to all here in the UK...so next steps are a worry.
I've followed your recent posts and am so glad things are levelling for you, quite a journey!

It's been a while since I wrote because I've been riding the pred taper... At last I'm down to 2.5mg (from 65) and still have counts over 100 (1 weeks ago). The side effects feel awful now or maybe I really am losing my mind!

I feel as if I'm in free fall and nothing is stable in time and space. I'm in a sort of inner chaos e.g. I missed my hospital appointment not forgetting, more drifting through this fog, coping (not) moment to moment with daily life. Also I have begun experiencing depressive episodes when I feel a sense of futility. I sit through it all and wait for it to pass maybe 30 mins maybe more...but I feel i'm lifting out of it less and less and am tearful.

I don't have physical symptoms apart from hair loss and a few aches and pains, also insomnia.

Because of the missed appt, I don't have this week's count since dropping by 2.5mg during the last week...my haematologist is anxious to get me off Pred and says the count isn't linked to steroids any more, so I can withdraw fast. I don't have ITP symptoms.

Has anyone else experienced this during the final stages of withdrawal or am I losing it?

Ferv:

You're not losing it. The end of the taper is usually the worst part. Brain fog and depression can be part of it. It can take a few weeks or months after stopping the drug to feel normal again. I know it can seem scary, but try to stay calm with the realization that it is the drug.

Thank you Sandi, and for the warning that it can take a while to lift. It has been a rough ride but I'm nearly there. These psychological and emotional side effects have been the hardest for me.
I felt so low and it was such a relief to see your response, not just the content of your reply. Thank you for being there!

Ferv
The steroids completely mes with your mind. Even when people told me I was not being rational, I was sure I was and that life totally did stink and they just did not understand. I was lucky, though. Once off prednisone I had sensitive teeth, but no other real side effects. Turned back to "me" pretty fast.

Ferv..coming off prednisolone is as bad as being on high doses.

Every time I have dropped my dose since going below 15mg/day I feel absolutely terrible for about the next 10 days. Mind fog, emotional, exhausted and ache from head to foot like having flu. Saw GP at 12.5mg/day as felt so ill.

Now dropping down at by 1mg/day every 4 weeks as per NICE guidelines . It takes about 10 days each time to get over the drop. Down to 3mg/day since Monday and feel absolutely lousy again. If reduction goes to plan last tablet will be January 17th.

Roll on February when I will hopefully feel normal again. xx

Hi Emily...so there is hope on the horizon! Thank you

Thanks Mrs B

I hope we both can celebrate being free of this vile drug very soon (Feb latest!). At least symptoms seem to lift once Pred is out of the system, from what the others say.

Feels like an eternity right now though
xx

PS Sandi!

Happy Halloween

Love the photo

XXX

Happy Halloween! I'm a witch....show my true colors at Halloween!

Good morning, I just joined this group. I had a spleenectomy in 1990 after my second incident with ITP and had no problem until January of this year. I have been on various doses of prednisone from 80mg to 5mg ever since. I am currently on 20 mg. daily. I also have gone through the Retuxin infusions about two months ago.

My side effects with the prednisone are jittery sensation in nervous system( (I often have a very hard time writing). Cramping in my legs and hands, hot flashes (my wife tells me I know what menopause feels like), upset stomach after taking the meds and a wooziness in my head. I also have had a very hard time not gaining weight.

These are not addressed in the article but thought some of you may have experienced some of these too.

Yes Daashbach, the list of steroid side effects is long and weird! I also have had hot flashes and sweating- just break out in a full-body sweat. I am currently on a low 5mg dose at present and am noticing that my posture is slouchy like my muscles are weak? Also moon face, distended abdomen, hair like straw- not a pretty sight! Gained 6 lbs in 2 weeks.

Also I feel revved up like I'm going 60mph, not sleeping but 6hrs- its exhausting. I'm intolerant, impatient and with any added stress I feel anxiety and stomach acid. PLUS I think I have developed an ulcer- taking Pepcid. Got an H pylori breath test, will get results soon.

I did a pred taper earlier this year. It took a long time but so worth it- great to be off and have my adrenals back! During the 6mos I was off of pred, I had joint pain mostly in my feet, sometimes other joints. The fatigue got better as time went on.