Prednisone

[Whitespot]

I was wondering what side effects from prednisone people have gotten? I have absolutely no energy, I thought it would give me more energy.

[tgk62]

I've only been on it, on and off, since June. Low doses compared to others...40mg. But I get leg cramps at night, even though I make sure to eat bananas. Swelling, crabbiness, impatient especially while driving now! It took a a month or more to feel any energy to do something close to normal...still get tired, but not so much as without it. BUT I want OFF this stuff. HTH

[Lin6 in reply to tgk62]

I'm pleased iv read this tonight as iv been in huge amount of pain with cramps in both my legs and toes. Iv been on prednisone 80mgs since July, my platelets have gone up from 7 to 141, (which I'm so so happy) tho was warned there's a 50/50 chance they will drop again. Doctors has started to decrease them on 60 at mo Monday go to 40mgs for 3 wks then another blood test, im so tired and have a constant dizzy head. Do you get that too??

[Whitespot in reply to Lin6]

I get leg cramps but I have for awhile so I don't think from prednisone. I am tired and my head is fuzzy not really dizzy. Only been on them for few days so that may change.

[tgk62 in reply to Whitespot]

Oh, & as someone else already mentioned, difficulty sleeping or staying asleep.

[tgk62 in reply to Lin6]

Yes I did, but I also was diagnosed with crazy high blood pressure at the same time, & I was never sure if it was from the meds for that or ITP. Put me in the hospital for 5 days, worried I'd have spontaneous bleeding with a platelet count of 8.

I also have the cramps in my toes & sides of my calves (which makes it impossible to try to stretch out). I hope your weaning is slow & goes well. My hema said she thought she was weaning me too fast, & my counts dropped again. So she is going to do it more gradually this time if my counts go back up.

[lc12345]

All sorts - round moon face, difficulty sleeping, stomach burn, weight gain, irritability, mood changes, weakness in muscles, sweat. It's a horrible thing!

[Lizard610]

I've been on them since June (70mg), the side effects took some time to kick in one by one. After about two weeks I started to not sleep as well at night, got a lot of energy, appetite grew to where I would eat A LOT, and crankiness, and unfortunately my face got puffy (most people say it's not weight gained, just what it normally does to people, but goes away when you're off them.)

[LynnCox]

I'm currently on my second round of steroid treatment (week 5) and had more energy at the start of this round than I had last time. It's tapered off a bit now but the insomnia has kicked in so I suspect one could be cancelling out the other.

I'm suffering about 17 of the 77 side effects listed on the NHS website but they vary in severity and differ every day. I've even had side effects I didn't get last time - eg acne.

[Lin6]

Yeah I'm struggling with a few of them at mo. The Worst one is the fuzzy/dizzy feeling, I'm trying a gluten/dairy free diet as read a leaky gut can be a cause ITP. I found out In may I have a Hiatus Hernia so Only trying this to see if it will help my platelets so come 7th sep for my next blood test, praying my doctor want need me to take prednisone any more.

Good luck to all

[swheels]

Hi, on high doses they vary in intensity but I had, knee cramps, lack of sleep, put on loads of weight mostly fluid, my facial,back and arm hair got thicker. My skin went tough and leathery on my arms. I also had times where after eating I would vomit, this would ease as the dosage got reduced. Hope this helps you out

Sheila

[Whitespot]

Thanks for the responses. What a horrible drug. I'm on a 19 day stretch so far only tiredness, bit of a fuzzy head and some chest pains.

[SoporRose]

Whitespot,

Your experience is, unfortunately, common. Even the folks at my haematologist's say Prednisone is a terrible drug. I was on it (90 mg) three or four years ago, and it makes miserable and crazy. For weeks I didn't talk to anyone but my immediate family because I couldn't control what came out of my mouth. Fortunately, I don't remember most of it, but the motto at the doctors' office is "We're never putting Ruth on Prednisone again." I still don't have the same memory function, and have a difficult time retrieving words (not a good state for an editor).

I also had my skin thicken (I remember it felt like porpoise skin) and my hair thin. I know I felt irritable; I think I came off as far worse than that to other. My blood sugar went up to 600-something; I was put on Metformin and had to eat a diabetic diet. I was dizzy and unstable, unable to think clearly, isolated and lonely (people kept saying they'd understand, but I didn't want anyone thinking of me as the harridan I gather I was). Insomnia, moodiness, horrible night sweats (the laundry!), terrible despair … and too many of these symptoms have lingered to some degree.

The next time my platelets dropped, I have Rituxan/Rituximab infusions. They left me exhausted and I know have ME/CFS, but my counts are holding steady in the safe zone so far (over two years). Though I go in for a count on Tuesday, so perhaps I'll be proven wrong.

I wish you a complete recovery from the Prednisone and stable counts. If you ever need treatment again, I hope your doctor finds a more suitable medication. Please keep us updated.

[Lin6 in reply to SoporRose]

Hi was wondering how your appt went, fingers crossed you got good news.

I've just been given a month on the sick as my dizzy head still no better and by 5pm I'm shattered.

Lin

[Whitespot in reply to Lin6]

Last friday they were up to 180. Tomorrow I go for another ultrasound and will get another bloodtest friday. Still have 9 mire days of prednisone but am weening down.

Judt hope they stay up after im done.

[scaryteacher]

I was like a bunny on speed the first time I had them to force my platelets up for an operation. It was like being 18 again, but coming off them was like being on the very top of a rollercoaster and coming down. I could feel the energy drain away. I was on them for 3 weeks that time.

The next couple of times, there was no discernable effect when I took them, and my platelets didn't bounce by much.

[Lin6 in reply to scaryteacher]

Do you get any nose Bleeds?

I had 4 yesterday and felt very grumpy and tired, had all the family for my grandsons 2nd birthday. Guess it was just too much!!

Fingers crossed for good news

Lin

[Whitespot in reply to Lin6]

Hey

No I have not had any bleeding at all, just the bruising.

How long have you had ITP, are you taking any meds right now? Do you know what your count is now.

Where are you from Lin?

[Lin6 in reply to Whitespot]

I live near Newcastle, had a blood text on my return from French holiday 29th June, it was all diagnosed within the wk!!!! I had 2 nose bleeds in June 1 in July but seem to be having more this month? I had loads of bruises to start with but pleased to say none now tho have you been left with the marks of them? I have been left with the outline of most of them?

My count was 7 went up to 141 been on dexamethasone, but took bad with it so changed to prednisone 80mg daily, passed 2wks 60mg then Monday started 3wks 40mgs. next appt 7th sep. so hope count has stayed up cause meds making me feel so dizzy, tired, bloated and grumpy.

Sorry not feeling so good at mo. Where are you from.

Lin

[annie908]

I have lost 30 lbs on the prednisone. Only because my agitation is so high I jump on the treadmill and run until I cant feel my legs anymore. I havent had any unusual bruising I take a prenatal vitamin everyday I think that helps balance out my body. The only negative side effect is my anger I get so angry so quick.