Prednisone shakes

[kimosabi1961]

Been on a Predisone recycle for possible rejection, and I have terrible shaking in my hands and all over. Anyone else have this?

[OperationKidney]

Yes, its a common side effect on higher doses of prednisone. Hopefully it'll be lowered soon for ya so you won't have to deal with it because it is quite the annoyance.

[littlelinda50]

I have the shakes too. I am only on 5mg of Prednisone. I have to stay on it for life. Do you get to get off of it eventually?

[kimosabi1961 in reply to littlelinda50]

No i'm on it for life

[Hidden in reply to littlelinda50]

Same here, 5mg. Sometimes it happens at work and is really awkward. My handwriting changes everyday. I don't think anything will help it. Once prednisone starts to damage the body, it is to late. We just have to deal with it. Just curious and not trying to pry, but how were you planning your death? Were you just going to wait it out?

[littlelinda50 in reply to Hidden]

I was getting things all set up so my kids would keep all my assessets and know how to pay all the bills. Teach them how to live without me since I was their only family. At that time I had 2 kids in their early twenties and 2 in their late teens. I just wanted them to be prepared for when I passed.

[Hidden in reply to littlelinda50]

I am glad you received a kidney and are still with us. At least your kids know how to run a household now. I am sorry about your situation. You just have to keep it together, do your own research and speak to your Nephrologist about what you wrote here.

[Hidden]

Yes. However, I am not sure mine is from prednisone. At 30 + years out and on a 5mg prednisone everyday, I don't think prednisone is the reason, unless it is accumulative. I would like to know more about tremors and the causes.

[littlelinda50 in reply to Hidden]

Do you have a lot of side effects from being on the Prednisone? I have more things wrong since they put me on Prednisone than I had before it is so frustrating for me.

[Hidden in reply to littlelinda50]

Yes. What are some of the problems you are having? Maybe I can help.

[littlelinda50 in reply to Hidden]

Besides the shakes. I have water weight gain so now I have to take a water pill. I have gained so much weight and can't loose it. It makes me irritated. My sugar goes low and high all the time and I never had issues before. My blood pressure bottoms out a lot and I have to take a pill for that. I also have hypothyroidism from the Prednisone. I had/have Addison's disease before Prednisone but sometimes Prednisone is not enough but being on the other steroids for it is to much for me so I just suffer. What side effects do you have?

[littlelinda50 in reply to littlelinda50]

I forgot I also have high triglycerides because of the hypothyroidism which was caused from the Prednisone.

[Hidden in reply to littlelinda50]

I am sorry. It can be really frustrating. I don't remember when you had your transplant, but the weight gain is familiar. I was on a lot of prednisone at first and gained quite a bit of weight. I always have to be careful with food and salt/sugar. As time goes on the bloating gets better. Don't beat yourself up about it because everyone reacts differently to prednisone. I have several skin issues like growths that have not been diagnosed despite going to several doctors. Mostly, on my legs and arms. I have a lot of osteoarthritis from the prednisone and it can be painful. I take a small dose of Tramadol to take the edge off the pain. I initially had severe acne, but visited a dermatologist and was put on minocycline, retin-a and sent to a tanning salon for a month. I continued the antibiotics and topical meds for a long time. The tremors started about 20 years ago and can be very frustrating. My penmanship changes daily. I haven't found a solution to it. With Addisions and hypothyroidism you have a double hit. Hopefully, you are on thyroid meds. It can be difficult to adjust this kind of med, so stick with it. I started taking a diuretic years ago and in place of blood pressure meds, because they caused swelling and more issues. Just realize your value as a person has nothing to do with your weight. It is always something, but better then being on dialysis. Hang in there. Everyone is different when it comes to this type of thing.

[littlelinda50 in reply to Hidden]

I had my tx May 16, 2019. I was not on dialysis actually was planning my death when I met a guy who offered me his kidney and he was a perfect match. I just wish that the surgeon who put me on Prednisone would of talk to the whole transplant team before he put it on me. The surgeon is on my transplant team that did my transplant but he didn't talk to the doctor's at the transplant center which is all at the same hospital. If he would of they would have told him no on Prednisone. I am on thyroid meds, a special diuretic bc I am allergic to sulfa and sulfa is in all but 1 diuretic. The Prednisone is supposed to help my Addison's but sometime it don't and I can't handle being on hydrocortisone and fludicortsone along with Prednisone to keep my Addison in check. I don't add any salt to my food or eat salty foods have not since my early teens. I don't eat a lot of sugar either. My blood pressure and blood sugar keeps being out of wack. I just wish they would come up with a better drug than Prednisone bc it's so poisonous in my opinion. My handwriting changes too! I also learning to do blood draws and shots for school. I can keep my hands from shaking for that which is weird.

[nosillap]

I was told my shaking was from the Prograf. I also take 5mg of prednisone

[Eyak1971 in reply to nosillap]

That's what I thought also but it's helpful to know it could also be other medication. I was not great at penmanship but now it just looks like a squiggly line unless I go very very slow and really concentrate. But as said by others you have to take the bad with the good.

[Bax509]

Yes. But also Prograf or Tacrolimus can cause tremors. My pred was reduced to 5 mg (which will be my lifetime dose) and I still have some shakes so it's either the small dose of pred or the prograf which may or may not be tapered...

[JackN]

I'm finding it interesting that so many folks are on long-term prednisone as an anti-rejection medicine. I thought its use for this purpose had been deprecated years ago. Is there a specific reason folks are still on prednisone as opposed to something developed more recently? FWIW I take prograf and cellcept.

[littlelinda50 in reply to JackN]

I had a doctor screw up and put me on Prednisone when he should of talked to the whole team before he did it. He told me it was only 3 months which is the only reason I agreed. Turns out I can't get off of it or I will have a rejection according to my doctor at the transplant center. So stuck on it for life.

[JackN in reply to littlelinda50]

I'm so sorry to hear. I would get a second opinion about needing to stay on prednisone though.

I think I was just on it for one day while I was still in the hospital.

[littlelinda50 in reply to JackN]

No one else will right now because of me only being 2 years post op.

[Dkctk]

Yes. I am on 5mg of prednisone and have terrible shakes. I was also told it was the tacrolimus. It is so annoying to try and write. I feel like sometimes it is worse than others.

[LavenderRabbit]

I was on prednisone for several years before my surgery. I got used to it. One of my side effects is shaking at 3:00 in the afternoon. Used to be every day, now just some days, and some days the shaking is very slight. But I always know when is 3:00. After surgery I now take prograf. I have seen no difference in my shaking. So I believe I don’t shake because of the prograf.

[Gardner-NY]

My spouse who had the transplant Nov 18 had his first rejection of his kidney late Feb 2019 and after 5 days in the hospital taking high doses of steroids by IV and then left hospital for home with higher doses of prednisone, the shaking of his entire body worsened 24X7, even when he slept. Now the prednisone is down to 5mg dose but the tacrolimus is the primary culprit for the shaking/tremors 24/7 still. His doctors told him a few days after the transplant that this drug alone can cause tremors in some people. My spouse prior to transplant let his doctors know he also has hereditary tremors from his mom, so the tremors for him worsened being on the antirejection meds. I notice them worsening by the afternoon. I wish I had an answer for you.

[josie120]

I felt "electrified" and shaky from head to toe in the first few weeks after my transplant. This got downgraded to just shaky hands until my 6 mo biopsy showed evidence of rejection. I had to start a 100mg prednisone taper; I was so jumpy and alert (in between episodes of tearfulness) that I found myself marching 2-3 miles at 10pm just to be able to be able to get 3 hours of sleep. I'm back down to 5 mg and back to my baseline hand shakiness and have been sleeping better.

Last time I was on prednisone I learned the hard way about salt sensitivity and weight gain side effects ( I looked like "late Elvis") . This time I had lots of fresh veggies for snacks and kept out of the kitchen as much as possible. I made myself answer the question: am I hungry or is this prednisone side effect before I put anything in my mouth; that helped keep the weight gain and puffiness to a minimum.

I keep hearing from posts that things will get better, at 7mo post transplant I'm starting to fell than this is the case for me though it has still taken more time, energy , support and effort to get through the post transplant period than I expected/was led to believe.

Hang in there!

[littlelinda50 in reply to josie120]

I had more energy and did more before the transplant than after and I post tx 2 years (May 16,2019)

[gardengirl97301]

I have hand tremors too, but thought it was the tacralimus. That little prednisone pill can sure cause problems. My shakes get better as the day goes on. Real fun if your trying to put together something requiring lots of screwdriver work!