Transplant Meds Side Effects?

[rookiegirl]

It's been almost 9mos. since my transplant.  Please don't get me wrong, I'm thankful for my gift of life.
I'm trying to cope and understand some of the changes in my life.  I think a lot has to do with all my medications (Prograf, Myfortic, Batrium, Valcyte, Prednisone, etc.) But it also could be "mind over matter".  I just don't know and hope someone here can give me some insight.

Since my transplant, I've gained almost 35 lbs or 15.876 kilos.  Just when I thought I can finally wear my old clothes, I'm back to wearing my big girl clothes.  The weight doesn't bother me too much it's more of a concern.  I'm working on the weight thing after the Holidays of course.
The biggest concern I have is my ATTITUDE! Most people know me as the sweet, patient, caring, loving, wouldn't hurt a fly kinda girl.  Well...not anymore; especially at work.  My coworkers sees a huge change in my attitude.  Some says, I came back to work with vengeance.  I find myself short with people, unable to tolerate ignorance and just easily irritated with people.  I speak my mind more often than usual when sometimes I should just SHUT UP!  People at work are starting to avoid me because I'm just not pleasant to be around.  I go home after work and kick myself for being so mean at people.  I do the same thing at home but not as bad since my husband knows me too well and tries to avoid anything that would irritate me.

Is this normal? Is it all in my mind and can I choose not to be mean or such a B!$@H?  Can the meds be doing all this? Everyday I get in my car and say a prayer to be nice to others.  I feel like I'm going to blow up one day and get fired.

[girliekick]

thinking of u hope u get some answers

[Chris]

rookiegirl, it has been known that meds can do this. I forgot where I posted it, but it had a list of possible common side effects. It will get better. They are lowering your prednisone little by little right?
Here is the article/list of side effects again.

[jbeany]

Yup, it's probably the prednisone.  You aren't the only one on here who has noted mood swings and uncontrolled anger.  I haven't seen much of that myself, but I know I was getting a few side effects when I started crying at some mushy tv commercial.  I'm down to the lowest dose now - 10 mg, and that has stopped, thankfully.  If you are at 9 months out, you should be down there already.  Talk to the docs - see if they can change anything in your meds, or add some form of anti-depressant to level you back out.

[okarol]

 
Those are common side effects of prednisone. I hope they are also checking your blood sugar, because that can be a problem too. Sorry you're having a tough time - maybe this will help:
How To Prevent Prednisone Side Effects
By Staff Writer

Prednisone is one of the more popular drugs now used to treat conditions such as ulcerative colitis and Crohn’s disease. The drug is administered either through the oral route or via intramuscular injections by some doctors. Prednisone is used to treat conditions such as extremely severe asthma, rheumatoid arthritis, some kidney diseases and severe poison ivy inflammation. Prednisone is a corticosteroid drug that is also well known for the side effects that it induces in patients. As the drug is designed to specifically affect the body’s entire immune system, some researchers are looking at this as one of the reasons as to why it induces so many side effects in patients.

Common side effects that arise from the use of prednisone include severe nervousness and restlessness, difficulty in digestion and a much larger appetite. Prednisone is also know to cause a number of less-common side effects, such as feeling the sensation of spinning, akin to vertigo, dizziness or lightheadedness, changes in the skin such as a sudden darkening or lightening of skin tone and color, immediate flushing of the cheek and face areas, and hiccups. Side effects that have been reported to arise on certain rare occasions include increased thirst, increased urination, and difficulty in focusing one’s vision. Prednisone also induces the following side effects in a small percentage of patients. These symptoms, while extremely rare, should not be overlooked because they are related to the patient’s mood – the patient may feel highly excitable, may hallucinate or act confused about certain information that he should already know, suffer depression, sudden mood swings, and the feeling that one is being mistreated by others, or have a false sense of security.

Prolonged use of prednisone can have long term, debilitating side effects on a patient. Continued prednisone use can result in constant abdominal or back pain, black stool, muscle weakness, cramps, nausea, eye pain and acne. Other side effects include the appearance of reddish-purple lines on the trunk and arms areas, as well as the groin and legs. A number of vision problems may occur, including eye redness, heightened eye sensitivity, and sudden changes in vision.

Preventing these side effects involves changing a few things.

    * In your regular diet, ensure that you have more than enough calcium in your body. The presence of high levels of calcium in your body will help it resist the side effects during the course of your prednisone treatment.
    * Cut down on salt in your diet, as too much salt has a direct effect on how often and how much you urinate.
    * There are also certain times of the day when your body is more resistant to the side effects that arise from using the drug. You should consult your doctor on what the best possible times to take the prednisone dosage are as well.
    * Finally, in order to deal with the mood swings associated with prednisone, you will need the support of your immediate family. Help them understand that there are a number of changes that you will have to go through while you are under treatment.

http://www.howtodothings.com/health-fitness/prevent-prednisone-side-effects

[chris73]

Yes rookiegirl you are not alone about mood swings and being hateful..I too have been labeled an a-hole since transplant and i used to be laid back and rarely get angry a people...people just seem to overlook me at work --and cry at drop of a hat......i Will take the trade off anyway than being on dialysis....tx center wants me to take anti depressants,told them no i take enough pills.hope things get better for you...God Bless!!!   Chris

[kellyt]

My doctor went so far as to thoroughly warn my husband about the mood change on Prednisone.  He was prepaid, sort of.  I, however, wasn't.  It has gotten so much better now that I'm on a lower dose (4 mg), but I still find myself blowing up at really strange things.  Very intolerant.  Mostly with my husband, my dogs and the weather.

[Chris]

My doctor went so far as to thoroughly warn my husband about the mood change on Prednisone.  He was prepaid, sort of.  I, however, wasn't.  It has gotten so much better now that I'm on a lower dose (4 mg), but I still find myself blowing up at really strange things.  Very intolerant.  Mostly with my husband, my dogs and the weather.

So how is that different from normal? 

Yes to easy of a joke and will get payback in chat I'm sure 

[kellyt]

My doctor went so far as to thoroughly warn my husband about the mood change on Prednisone.  He was prepaid, sort of.  I, however, wasn't.  It has gotten so much better now that I'm on a lower dose (4 mg), but I still find myself blowing up at really strange things.  Very intolerant.  Mostly with my husband, my dogs and the weather.

So how is that different from normal? 

Yes to easy of a joke and will get payback in chat I'm sure 

Grrrrr!

[Romona]

You are not alone. It does get so much better with time. Someone told me the first year would be so rough and it is. Hang in there. You'll feel yourself again someday. 

[rookiegirl]

What about memory lost?  Could that be a side effect too?  I seem to be more forgetful than usual.  The other morning while getting ready for work.  I was rubbing lotion on one leg and turned around to get more lotion and I couldn't remember which leg I already rubbed.  So, I did both just in case.

The other time, I put a box of cereal in the fridge and don't remember when or why?

[Chris]

I have memory problems to rookiegirl, forgot which med makes it more susceptable without looking at the list I posted earlier.

[cariad]

Hi rookiegirl,

The only drug I know a lot about is prednisone, and that can cause memory problems. Prednisone is synthetic cortisol - commonly known as "the stress hormone". This is the hormone that people release under any stressful circumstances. Think about how people react under stress - they often can't remember details, or they remember events improperly. Some even remember things that did not happen. I often feel pretty scattered when stressed. You may not feel it, but your body is, chemically speaking, in a state of constant stress.

I do think, though, that what you are describing sounds more like the everyday 'brain slips' that we all experience. (In undergrad, my psych professor was obsessed with these - they can all be divided into types, but I cannot remember any of them. She had an entire class write down every brain slip they experienced, demanding something like 10 a week, and even on prednisone I had to make most of mine up because they were not that frequent.) Memory also declines with age.

I know it's annoying. I hope it improves for you. Good luck.

[rookiegirl]

Hi rookiegirl,

The only drug I know a lot about is prednisone, and that can cause memory problems. Prednisone is synthetic cortisol - commonly known as "the stress hormone". This is the hormone that people release under any stressful circumstances. Think about how people react under stress - they often can't remember details, or they remember events improperly. Some even remember things that did not happen. I often feel pretty scattered when stressed. You may not feel it, but your body is, chemically speaking, in a state of constant stress.

I do think, though, that what you are describing sounds more like the everyday 'brain slips' that we all experience. (In undergrad, my psych professor was obsessed with these - they can all be divided into types, but I cannot remember any of them. She had an entire class write down every brain slip they experienced, demanding something like 10 a week, and even on prednisone I had to make most of mine up because they were not that frequent.) Memory also declines with age.

I know it's annoying. I hope it improves for you. Good luck.

Caried - thanks for the information.  I can't wait to see my Dr. in March so I can ask if there is other alternative than Prednisone.  I know I have to be on it for life because of my high PRA.

[Wenchie58]

Memory loss on predisone?  hmmm I hadn't heard of that, but thats what's wonderful about this site...the things you learn....

errrr....now what were we talking about?

[Joe Paul]

My drugs give me nausea, but I had a 6 of  6 antigen match, so I was fortunate enough to go home on no steroids. I would say it is the steroids, I noticed a change in myself when I took them for pre surgery on my PD cath. Many people call steroid side effects the moon face pill, weight gain that cant be controlled. Hopefully and soon, they will wean you off the drug, maybe you can ask if this is possible sooner then later. Joe

[kellyt]

Unfortunately, we need to take the Prednisone for as long as they say take it.  I'm "hoping" to ge off of it 100%, but if he says I gotta stay on forever, then I guess I gotta stay on forever.   Sucks, I know...    Consider yourself lucky, JP.   I'm so happy for you!   

[fluffy]

i had the memory loss for the first month or so after my transplant, but its gotten a bit better

[chris73]

Still on prednisone regimen I too have memory loss..Its so frustrating when you cant remember things that you should know with out thinking about.Will ask tx clinic is there anything to improve this! I have learned to accept this...it still better than dialysis!!Hope things get better for you..God Bless!!  Chris

[fluffy]

i started out on 15 mg of prednisone i think, and i couldnt remember things that ppl told me an hour before. its since been cut down to 5. how much are you on?

[rookiegirl]

I'm down to 5mg now.  But still.  I'm only 39 yrs younger.

[tawniepixie]

OO I remember when I first got my transplant I was very moody, and emotional... snapping at people, crying all the time when I wasn't even sad or upset. I definitely think it was the high dose of prednisone that did it. Don't like prednisone. Now I'm on a 2.5mg dose, and I don't notice any side effects from it anymore thank goodness. Good luck with your transplant!   

[Zog]

When my wife was on prednisone, we went out to get dessert at a bakery.  A truck cut us off on the interstate and my wife was so irritated at the truck and my driving that we never made it into the bakery.  She just sat in the car while I begged her to move on and get out of the car.

We laugh about it now, but it wasn't fun back then.  Some Europeans go completely off prednisone with their transplants and just stick with Prograft, etc.  I don't recommend doing that, but high prednisone dosages are cover your ass medicine for some people.

[kellyt]

My doctor plans on taking me off 100% and I couldn't be happier.  Now, if during this process my labs show bad changes, then obviously I'll stay on whatever dose he recommends.  Some people are off 100% and doing fine and some were never on Prednisone and doing fine.

[jbeany]

I didn't get snappy, just weepy.  I guess I've been lucky not to have too many bad side effects - easier to say now that I'm now longer conspicuously bald on the back of my head!

Got milk?  High calcium sure helps with the prednisone side effects.