It guess it is all in my head. Renvela issues

[*kana*]

About 2 years ago I started complaining about feeling a bit ill in the morning but I just accepted it as part of renal failure.  The last 6 months it has gotten so bad(worse then food poisoning and pg morning sickness) that I couldnt get out of bed until 1-2pm and would roll around in my bed in tears.  About 2 mths ago I started violently vomiting for about 30mins.  I got to the point that after almost 4 years of D I wanted to just stop and die because this wasnt living.    I gradually stopped taking certain vitamins to see what it was that was upsetting my stomach and it is Renvela!!!  I was only eating a tiny bit and taking only 2-3 Renvela a day vs 6-8 and I felt sooo much better and stopped vomiting.   So I present that idea to my Neph and dietician and they haven't ever heard of that happening and it was all in my head.....WTF!!!  They did agree to put me on something else but I am ticked that they told me it was all in my head.   

I think this post is a little bit of a vent and a little bit of a request for support for those that have had issues with Renvela. 

[noahvale]

*

[jbeany]

Hmmm....if it's all in your head, at least you have something in it.  Their heads appear to be completely empty!  It's a very common experience for drugs to stop working or cause side effects when you've been on them a while.  Just because they, personally, haven't had a patient have this problem before with Renvela doesn't mean it's not happening to you.

I haven't taken Renvela, but I had similar issues with Procrit.  The response I got was, "No one else gets sick from."  So what!?  I am!   

[MommyChick]

Hi Kana!

I found this very interesting, I too take Renvela. I have been taking this for several years. never had stomach issues till after my pregnancy. I don't know if it is the Renvela, but your symptoms sound close to mine.
My symptoms started once I started back up on certain meds. after my pregnancy & with my pregnancy Renvela was one of them that they held till my son was born.

Now my symptoms are only in the morning. I take 800mg morning & supper. Some mornings are better then others. When it really hits though I have to just lay there, my stomach is in that much pain I want to cry! I don't know what to do & I get very sick to my stomach. I start sweating & either feel like I will pass out or throw up. Its pretty bad!! The longest it has lasted is about 30 min. When I tell doctors about it I think they think I'm crazy because they look at me & say nothing seems to be wrong. I know something isn't right though, its been going on almost 2 years of this! It only happens in the morning though.

I've tried eating with meds, not eating with meds, only taking certain pills, I'm just so confused by it all, I swear though it has to do with my meds..  I am positive of that because I'm fine till I take my pills in the morning then about 10-20 min later I'm sick. I know all our meds. have side effects but I just figured it was me because no one else at dialysis has complained about that.

[Kong]

I got pretty ill on Renvela too. I also got very bad constipation. My phosphorus levels were still high while I was on it and I got switched to Fosrenol. It is so much better and did a great job lowering my phos. levels.

[kitkatz]

I get itchy from IV Vitamin D: Zemplar and Calcijex.  They tell me I am crazy, but it happens.

[balapandian]

kana,

I'm sorry to hear your problems with Renvela.  I take sevelemar carbonate 800mg thrice a day and I have no issues.

From your profile it seems you have undergone kidney removal surgery and doing PD at present.


does this kidney removal surgery affects the peritonial cavity or future PD catheter placement?
does kidney transplant surgery affects PD?

I heard that any abdominal surgery is likely to affect CAPD as it involves opening the stomach linings to get to the kidneys.

Please share your experiences.

thanks
Bala

[jeannea]

My doctors always told me that I couldn't have prednisone side effects at the dose I was on. Doctors can be idiots. If you feel it then it's true. Maybe you can try a different binder.

[Leanne]

I don't think it is in your head.  That stuff makes me sick to my stomach too.  Doctors really should ask us what are the side affects of these meds.  After all we are the experts on this, not some book somewhere.  We are the ones taking them so on this we could teach the doctors.  I hate when they tell us how we should be feeling instead of asking us how we do feel.  I am thankful that I have a doctor that asks me things and then listens to what I have to say.  They gave me some kind of liquid to try but it was worse than the renvella so I justtry to tolerate it.  I sometimes think they dont realize that we have issues with nausea alot just from the toxins.  And I dont think food hardly ever tastes like it should either.  Makes me not want to eat.

[cassandra]

What are the possible side effects of sevelamer (Renagel, Renvela)?
 
"Get emergency medical help if you have any of these signs of an allergic reaction: hives; difficulty breathing; swelling of your face, lips, tongue, or throat.
 
This is what it says on the 'Drug-Index' site:

Call your doctor at once if you have a serious side effect such as:
 severe stomach pain or constipation; or
fever, chills, body aches, flu symptoms.
 
Less serious side effects may include:
 upset stomach;
stomach pain, gas;
nausea, vomiting;
diarrhea; or
etc."

In my Patient leaflet with the meds it says the same. It doesn't advice overpaid Doctors to seek immediate advice when they can't read that, but I would advice that.

And Kana you asked:

"does this kidney removal surgery affects the peritoneal cavity or future PD catheter placement?
does kidney transplant surgery affects PD?

I heard that any abdominal surgery is likely to affect CAPD as it involves opening the stomach linings to get to the kidneys."

It can do, but depends on if you develop hernia's or not. I had both kidneys removed through my belly, but did not develop hernia's, and happily did pd for 5 yrs.

good luck all, Cas