Side effects

[hyperlite]

I keep hearing people say that they don't want to get a transplant. Some have had one before, others haven't. But their reason is because of the drugs. So my question is, just what is so bad about these drugs, and how is it worse than dialysis? To the people who have had a transplant, what were the side effects that you experienced?

[Bajanne]

Someone, please answer quickly!  That is something that really concerns me.  In fact, it is the reason I have not begun to even think about a transplant.

[livecam]

From a transplant patient...don't worry about side effects.  There is a night and day difference in quality of life between dialysis and transplant.  Hint...transplant is better. Get yourself on that list ASAP, no matter what you'll be waiting maybe for a long time even after you do.  You'll have a couple of years to think about it and should you decide the answer is no you can always say no thanks when they call with the kidney.  Someone else will be glad to take it.

[Epoman]

From a transplant patient...don't worry about side effects.  There is a night and day difference in quality of life between dialysis and transplant.  Hint...transplant is better. Get yourself on that list ASAP, no matter what you'll be waiting maybe for a long time even after you do.  You'll have a couple of years to think about it and should you decide the answer is no you can always say no thanks when they call with the kidney.  Someone else will be glad to take it.

Good advice.

[Rerun]

Side-Effects include Prednisone hunger.  I was hungry a lot because I couldn't get down past 10mg.  I'm still having a hard time getting off Prednisone and I had my transplanted kidney removed in March.  Cateracts, hair growth, decrease in bone mass, thin skin, bruising, and weight gain.  But, it was worth it. 

I admit, I'm glad to be thin again.  With no energy, there is a lot less to pack around.

If they could just find a better medication than Prednisone life on a transplant would be good.

[livecam]

Hey Rerun lots of transplants are done without Prednisone these days.  Also some patients who are initially on Prednisone have the option to wean off it.  I'm followed regularly by Kaiser and once a year by UCLA.  My Kaiser neph was against weaning because he felt it was a sure path to rejection.  I was persistant with him so he finally said that if UCLA would ok it then it would be alright with him.  After UCLA said yes I weaned from 5 mg. daily to zero in increments of 1 mg. down (can't remember for how long each).  Anyway I got to zero almost 2 years ago and so far all is well. Some patents are now on only 1 immunosupressant and a select few take none at all.  Ask your docs if they can come up with a plan for weaning you.

[Rerun]

With the next transplant, I'll look into it.  I'm back up to 4mg of prednisone and doing better.  I just get achy and my joints hurt when I get down to 2mg and sicker than a dog on zero.

[angieskidney]

OKay I am going to put the medications I was on and their side effects because when I had my transplant I felt there was no enough talk about the side effects and I was devistated at the age of 16 gaining 32 lbs in one month (I was very underweight before the transplant and the doc even accused me of being annorexic!!!) and with how the Prednisone made my depression worse and I had no one to talk to at that time!

Side Effects of Cyclosporine:

• Fine hair growth on the upper body
• Slight gum enlargement
• Mind tremors (really noticable with higher dosage at first)
• High blood pressure
• Toxic effects to the kidney and liver in hogh doses
• Rare occurrences of certain types of cancer (lymphoma) not made worse by family history

Side effects of Imuran:

• Suppresses production of white blood cells (you may get sick easier from colds or get chicken pox a 2nd time around)
• May cause some hair loss (temporary)

Common side effects of Prednisone:

• Weight gain, especially on the face and neck
• Increased facial hair
• Mood swings (tell your dr. if you are depressed)

Possible LONG TERM side effects of Prednisone:

• Cataracts
• Weak leg muscles
• Join problems
• Diabetes

Side effects of ALG (Anti-Lymphocyte Globulin):

• General unwell feeling
• Fever
• Join discomfort

[Epoman]

OKay I am going to put the medications I was on and their side effects because when I had my transplant I felt there was no enough talk about the side effects and I was devistated at the age of 16 gaining 32 lbs in one month (I was very underweight before the transplant and the doc even accused me of being annorexic!!!) and with how the Prednisone made my depression worse and I had no one to talk to at that time!

Side Effects of Cyclosporine:

• Fine hair growth on the upper body
• Slight gum enlargement
• Mind tremors (really noticable with higher dosage at first)
• High blood pressure
• Toxic effects to the kidney and liver in hogh doses
• Rare occurrences of certain types of cancer (lymphoma) not made worse by family history

Side effects of Imuran:

• Suppresses production of white blood cells (you may get sick easier from colds or get chicken pox a 2nd time around)
• May cause some hair loss (temporary)

Common side effects of Prednisone:

• Weight gain, especially on the face and neck
• Increased facial hair
• Mood swings (tell your dr. if you are depressed)

Possible LONG TERM side effects of Prednisone:

• Cataracts
• Weak leg muscles
• Join problems
• Diabetes

Side effects of ALG (Anti-Lymphocyte Globulin):

• General unwell feeling
• Fever
• Join discomfort

Very nice post! Awesome!  Thank you very much, this is a great post that will inform people of the risks and know what "could" happen.

- Epoman

[angieskidney]

Thank you I typed it all out while looking at the kidney book my dialysis nurse gave me

[coravh]

There are many potential side effects of the transplant drugs, but if you look into it closely, you find that the odds of getting the more serious side effects are quite small.

With immunosuppression, there is a risk of cancer. Skin cancer is most often seen. I have a family  history of skin cancer so I had a higher risk anyway. Since the transplant I wear either a number 45 or a number 60 sunscreen. I have had my graft for over 3 years and have had no skin problems.

The bulk of the other side effects can be a pain, but most of them can be dealt with. I won't talk too much about prednisone because I'm not on it. I can tell you that the rapamune I am on can cause anemia, and it has. I am still on aranesp and periodically (twice since I've had the transplant in '02) I have required an iron infusion.

Some of the other side effects are depression and insomnia. I have these two, but on the other hand, I had them on dialysis also. I just didn't bother to get help until after the transplant. So, I'm on a total of 2 pills for that, and now I'm fit as a fiddle.

I can still remember how scary the side effects of meds sounded, but now that I am here, I can tell you that it's not a big deal. Most things are manageable.

[angieskidney]

I can tell you that the rapamune I am on can cause anemia, and it has. I am still on aranesp and periodically (twice since I've had the transplant in '02) I have required an iron infusion.

In my Province the IV Iron is no longer covered and disability does not pay for it. I was supposed to get it but I now can't. I was told that they could get it covered (lots of paper work) but it never was because simply ... I guess it took too much work so they only just gave me more Epo. Took a lot longer for my hemoglobin to come up (about 6 months) but at least it is finally up now. They used to cover the Iron as I used to have to get the IV Iron and sometimes a blood transfusion at least once a year. But now they just keep raising the amount of Eprex (Epo) they give me.

[jdat]

That list of side effects for prednisone is way too short!

Anyone really interested should read:
Coping With Prednisone and Other Cortisone-Related Medicines : It May Work Miracles, but How Do You Handle the Side Effects?

The must have book on the subject.

When I was first put on the evil prednisone my doctor insisted I come in for an appointment to discuss the side effects. Well I got them all and then some. 

[angieskidney]

That list of side effects for prednisone is way too short!

Anyone really interested should read:
Coping With Prednisone and Other Cortisone-Related Medicines : It May Work Miracles, but How Do You Handle the Side Effects?

That is 7 side effects of Prednisone. I didn't know there were anymore. That is all that I was told

[jdat]

That list of side effects for prednisone is way too short!

Anyone really interested should read:
Coping With Prednisone and Other Cortisone-Related Medicines : It May Work Miracles, but How Do You Handle the Side Effects?

That is 7 side effects of Prednisone. I didn't know there were anymore. That is all that I was told

I have kind of forgotten a lot of them but you can add acne, insomnia, water retention and constant hunger ( linked to the weight gain ).

[angieskidney]

That list of side effects for prednisone is way too short!

Anyone really interested should read:
Coping With Prednisone and Other Cortisone-Related Medicines : It May Work Miracles, but How Do You Handle the Side Effects?

That is 7 side effects of Prednisone. I didn't know there were anymore. That is all that I was told

I have kind of forgotten a lot of them but you can add acne, insomnia, water retention and constant hunger ( linked to the weight gain ).

oh ya who can forget the hunger pains and the acne I was soooo bad! Wanna see a pic?

Here is me after my transplant! My face was completely covered in acne Seemed uncontrollable!!

[hemohortensia]

Well, I got chronic pancreatitis which remains 13 years after the kidney didn't. I spent about 3 months in hospital including the ICU
and the kidney only lasted 8 months. My eyesight changed hourly. I caught an alphabet of viral and bacterial infections. While my
neuropathy disappeared, it was replaced by myopathy (muscle weakness). I kept falling because I was dizzy. I had to watch infomercials
because my thinking was so skewed, they were the only shows I was able to follow. I didn't keep a log since my vision changed every
few hours. My face blew up so much that my best friend since 1965 walked right by me and didn't recognise me. I looked in the mirror
and didn't recognise me. (An eerie feeling that has to be experienced to be believed.) Friends actually discussed my tapering the meds
to make the kidney fail.

 I never realised how nice it is not to have to get up and pee in the middle of the night.
 
 

[angieskidney]

My face blew up so much that my best friend since 1965 walked right by me and didn't recognise me. I looked in the mirror
and didn't recognise me. (An eerie feeling that has to be experienced to be believed.)

I know how that is from Prednisone. Why don't you introduce yourself in the Intro thread so we know more about you and can all welcome you

[BigSky]

In my Province the IV Iron is no longer covered and disability does not pay for it. I was supposed to get it but I now can't. I was told that they could get it covered (lots of paper work) but it never was because simply ... I guess it took too much work so they only just gave me more Epo. Took a lot longer for my hemoglobin to come up (about 6 months) but at least it is finally up now. They used to cover the Iron as I used to have to get the IV Iron and sometimes a blood transfusion at least once a year. But now they just keep raising the amount of Eprex (Epo) they give me.

As with anything consult your dr. first.

You really need iron to make the epo work to its potential.  I would consider getting some iron tablets.  They are poorly absorbed this way but taking 2-3 a day spaced out will help improve your iron. When they do blood work to see what your iron level is you can adjust intake as needed.   My IV iron is covered but it still bugs me it costs someone so much.  So I take iron tablets to help keep my doses of IV iron low.

[angieskidney]

In my Province the IV Iron is no longer covered and disability does not pay for it. I was supposed to get it but I now can't. I was told that they could get it covered (lots of paper work) but it never was because simply ... I guess it took too much work so they only just gave me more Epo. Took a lot longer for my hemoglobin to come up (about 6 months) but at least it is finally up now. They used to cover the Iron as I used to have to get the IV Iron and sometimes a blood transfusion at least once a year. But now they just keep raising the amount of Eprex (Epo) they give me.

As with anything consult your dr. first.

You really need iron to make the epo work to its potential.  I would consider getting some iron tablets.  They are poorly absorbed this way but taking 2-3 a day spaced out will help improve your iron. When they do blood work to see what your iron level is you can adjust intake as needed.   My IV iron is covered but it still bugs me it costs someone so much.  So I take iron tablets to help keep my doses of IV iron low.

Oh I already take 3 iron tabs every single day.

IV Iron used to be covered until the government changes it's mind. Now we have to pay $75 CDN a pop at 3 time in 2 weeks time. We need 3 times .. that is the dosage but can't be given all at once.

[BigSky]

Personally side effects are little to worry about.  I mean you pick your poisen.  That of transplant drugs or that of dialysis drugs.

[MelissaJean]

I would definitely agree BigSky, the most common side effects (from my lung transplant) I had was puffy face, anxiety/Post Traumatic Stress Disorder, hair growth, hypertenion, and now kidney failure.  Though over time the docs minimize the medicine, and as your body adjusts to the drugs some of the  side effects aren't so bad.

[Zach]

Personally side effects are little to worry about.  I mean you pick your poisen.  That of transplant drugs or that of dialysis drugs.

The devil you know from the devil you don't know.     

As new and better anti-rejection drugs become available, just understand their limits and side effects.

[John S.]

As far as I am concerned (and this is just me) I would NEVER NEVER NEVER NEVER NEVER NEVER even contemplated a transplant in a million years if just one person would have mentioned to me that there was even 1 millionth percent chance that I would have had to have BOTH of my hips replaced because of the steroids used for anti-rejection.

I am extremely bitter about this. Before the transplant, I was a pretty damn good soccer player and ran about 8-10 miles a day.

Not one damn person mentioned the possibility of this happening. Sucks!!

john

[Black]

As far as I am concerned (and this is just me) I would NEVER NEVER NEVER NEVER NEVER NEVER even contemplated a transplant in a million years if just one person would have mentioned to me that there was even 1 millionth percent chance that I would have had to have BOTH of my hips replaced because of the steroids used for anti-rejection.

I am extremely bitter about this. Before the transplant, I was a pretty damn good soccer player and ran about 8-10 miles a day.

Not one damn person mentioned the possibility of this happening. Sucks!!

john

Do other health problems/diseases have this high level of non-compliance with the "informed consent" requirements? Or are kidney disease patients specially singled out for the "mushroom treatment"*?

*keep them in the dark and feed them sh*t