Livalo Side Effects And Kidneys
UpdatedMy spouse was prescribed Livalo to lower cholesterol. The cholesterol response was positive. The Total Cholesterol went from an average of 238 to an average of 160. Mission accomplished but .......
My spouse spent the worst 6 months of her life enduring a baffling array of maladies. The various side-effects progressed with time and did not seem to have a relationship with the drug. Kinda' a "creeping blunder" type of response.
The first indications of "change" in her quality of life were:
-Insomnia
-Fatigue
-Loss of Zest
-Aching
Then some new conditions appeared:
-Dry, Itching Skin
-Dry, Crusty Eyes
-Darkening Urine
At the fifth month:
-Burping
-Gas
-Pronounced Pain Under Rib Cage on right Side
-Reflux type symptoms
One Day:
-Pain in Stomach Below Rib Cage that was a 10 on a scale of 10
-Pain would start after evening meal and last all night.
Many visits to GP who prescribed Nexium and wanted to also prescribe anti-depressants because my spouse was "stressed." Trips back to GP who referred to a gastroenterologist. An Upper GI and an Endoscopy including the implantation of the Bravo Chip. Esophagus was fine; Bravo showed no acid reflux. But chip implantation was extremely painful and now we had pain 24/7 and the device would not slough off and was in the system for at least 10 days.
Ended up in the ER with unbearable pain. Specialist ordered diagnostics to be sure that esophagus wall had not been damaged by Bravo Chip. ER folks would not accept the specialist "orders" unless he came to the hospital. So the on-duty doctor started down the road of heart attack treatment and we had to fight for some sanity. No heart attack or heart symptoms after 8 hours of monitoring and blood work and no punctures or problems with Bravo Chip except it was still there. Left ER with a bag of pain killers.
We made a desperate call to specialist who was at a conference. This led to a trip back to the woman's hospital for a gall bladder diagnosis. Gallbladder was in perfect condition.
No follow up from GP or specialist and my spouse was suffering and her spirit was ebbing away. Well, specialist did phone in and suggest anti-depressants.
Now, along this path, we kept asking the question, "Could Livalo have anything to do with these symptoms?" The answer was "No" and one patted my spouse on the head and offered some sleep drugs and, oh yes, was she ready for the anti-depressants.
So, of course, we are on the net trying to make sense out of all the forums and wannabe RX sites - most loaded with disinformation. I had all her blood work for 10 years and made a simple line plot of the results. It was very clear on the graph when the Livalo began to have the desired effect on cholesterol. But what was also clear was that there was also a negative response on the kidney function numbers like BUN, Creatine and GFR. I'm familiar with the effect regular statins have on the liver but an effect on the kidneys was new to us. Turns out that Livalo does not work like "normal" statins and that kidney changes should be monitored.
Once we were on the trail of kidneys, this led to a list of symptoms just like my spouses for kidney type effects on the body. Still no word from doctors except that we had a appointment for a week away. OK, here is the bottom line:
We made the decision to just stop taking all medications on Monday morning. She stopped the Livalo,the Nexium, and the Pepsid. The results were positive and almost immediate starting 24 hours later. By the 72nd hour (three days):
-Stomach pain was COMPLETELY gone
-Urine color returned to normal
-Appetite returned
-No itching
-No dry, crusty eyes.
-My spouses zest for life returned.
It was like waking from a horrible, horrible dream and feeling so good that the nightmare was over. No need for pain meds, etc. etc. etc.
Let me repeat, "It was like waking from a horrible,horrible dream and feeling so good that the nightmare was over."
I understand that correlation is not causation but the response was just too clean and too dramatic to be another random event that was responsible for the turn-a-round. My spouse was sick and getting sicker due to this medication and I believe because of the direct effect of the drug on the functioning of the kidneys. We hope that she does not have kidney damage. We will be looking at the next blood numbers very closely.
Our other take-a-ways are:
You better have an advocate and partner and wing-man covering your interaction with doctors and hospitals.
You better be INFORMED and do your homework and not rely on the "experts" to take care of you.
We will never understand why we had to go through this ordeal. If we could diagnose and solve the problem, why couldn't the doctors? Why did we go thru invasive procedures and layers on top of layers of drugs trying to fix the effects of other drugs. Why was our input ignored?
I could go off on the impact of big- medicine and economic pressures. But something in the medical world is the root cause for how medicine is being delivered to patients. Six minute time limits for office calls do not set up a condition that the GP can do any diagnostics - they just barely have time to grab up a dart (any old dart) and throw it at the problem and go thru a long trial and error process to try and find a cure. The GP's make referrals but have no time to interact and look at the data and start the analysis process. Most doctors and specialist are gobbled up by big medicine and since they no longer own their own businesses anymore and are just employees who are disfranchised. Staff is outsourced and again there is no bonding and identification with the patient. Its all about throughput and lowering cost. The emphasis is on procedures and meds and the specialists to deliver them. What we need are diagnosticians - its very hard to provide a solution if you do not know what the problem is. And that learning tree should take into account what is KNOWN and not what is found out using the “Drunkards Walk” technique for problem solving.
Well, I could go on and on and on. I will stop and see if any dialog is created by my remarks. We are blessed that my spouse is no longer in pain and is alive in body and spirit. Be very cautious with medications in general. Be informed and assertive. Be very cautious if Livalo is suggested to you as an alternative cholesterol lowering medication.
3 Replies
Hi mac,
I just finished reading over your story about Livalo and am terribly sorry to hear about all the loop holes you and your spouse had to go through for what would otherwise have been a simple diagnosis if medical professionals would just spend more than a few minutes of their "invaluable time" diagnosing the condition. Without doing so, can they really even be called "professionals" taking such an approach?
You are absolutely right though that we as an individual have to be our own best advocates when it comes to researching and understanding our bodies, since nobody else lives a moment in our shoes. Diagnosing an issue that has been ongoing cannot be properly addressed in a rushed mindset, let alone within a 6 minute dialogue.
As to lowering cholesterol, my understanding is that this is largely attributed to one's diet. And I don't know if your spouse made any kind of substantial changes to her diet in that regard, but perhaps that would make for a better first line of treatment in my opinion.
I hope this helps and thank you again for taking the time to share your experience in the matter!
I am on trial 1 mg dose of Livalo. I have tried 3 other statin drugs prescribed by my Internal Medicine physician. Before prescribed ones I did trial of Red Yeast Rice on advice of my cardiologist. I got severe cramping (Charlie horse) in my toes and hands. Right upper quadrant pain similar to Gallbladder attack after a brief time on all of the meds. I do know, as a health care professional now retired, that pills seem to be the answer to all ills today. The cholesterol levels increase naturally as we age. Our brain needs cholesterol to function properly! Statin drugs have been shown to be connected to dementia. Diet is possible to help but we cannot get rid of our genes unfortunately!
I appreciate seeing the interaction on this website. I will continue my Livalo until such time as any symptoms of side effects increase. Insurance payments have much to say in choices of medicines today. Cheapest are always first line of treatment.
As to renal problems with Livalo, they can happen. I have read the listed complications/ side effects listed. I also have been diagnosed with moderate renal insufficiency. I will be approaching taking Livalo cautiously. Drug companies are many times in denial of complications related to medications! We must be proactive approaching our body and diligent as to changes after beginning medications. Stopping a medics and finding you feel better means that drug wasn't working well for you. Apology for flight of ideas. Wanted to share and hope to see more postings here. Mac3 glad your dose is recovering. Thanks for sharing your experience!
I have a family history of high cholesterol and as I am getting older my numbers and LDL have gone up. I take no other drugs yet have tried Lipitor and Crestor years ago and have had problems like like cramps and most recently terrible leg twitching at night and it stopped when I stop the Crestor. Now most recently I was put on will follow 1 mg every other night and it seems to me that morning after I take it I am very exhausted. Last Saturday I couldn't get out of bed and there was no other reason. This past week I've had a cold and was starting to feel better and should've been better today yet last Night I took the pill and once again this morning I am weak my legs are almost rubbery and I spent the day in bed. My normal day is very active and busy from 8 to 11 at night. So I started looking online and wondering if the Lovalo could be at fault. Possibly it's the remnants of the cold that I had but I will not take it for this next week and watch and see if I get back to normal. In reading the side effects extreme exhaustion and muscle aches is certainly one of them and my eyes have been reddish and dry also. I will wait and see what I learned from this next week or two.
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