Phen Fen Usage?

[Gramma Jean]

Hi All;

I'm new to the forum and have been lurking, reading your posts.

I am one of the millions that took the diet drug Phen Fen. I took it for about 15 months before it was taken off the market. I also developed moderate/severe mitral regurgitation with mild aortic regurgitation. I also developed secondary pulmonary hypertention due to the drug.

Future is unknown about whether I will need valve replacement in the future.

Just wondering if anyone else on this forum took the infamous diet drugs and how they are doing.

 

[bvdr]

Welcome to our forum.

I know of at least one other and she may see your post and respond.

Regardless of how the valve damage occurred, there is a lot of common ground among us valve patients.

If you are comfortable sharing, I would be interested in reading some of your history and knowing how you are doing presently. Were you aware of potential problems before you had symptoms or how did you find out about the valve problems before symptoms arrived?

 

[Gramma Jean]

Phen Fen

Phen Fen

Betty;

Thank you for responding to my question.

I did not know anything about the problems with Phen Fen prior to taking the drugs. I had thyroid cancer in 1989 and had a total thyroidectomy with radiation treatments to kill any thyroid that may have remained. I gained a huge amount of weight while trying to get the cancer under control. By not having a thyroid, I went from a size 8 and 115 pounds to being a size 24 and 240 pounds. All the diets and "life changes" I have made have not made much difference in my weight. I have managed to loose some weight and currently I'm in a size 18 and 210 pounds. Every day has been a struggle to get just one pound off!!

When I heard about the diet pills I thought it might help someone like me. (Believe me, it didn't!!) In the 15 months of taking the pills I lost only 15 pounds (one per month). Others were losing 50, 75, 100+ pounds. I took the pills until they were taken off the market. A few weeks before they were withdrawn from purchase, the doctor I was seeing said, "There might be a problem with these pills, but we don't know what the effect is yet. Until we know for sure, and I'm sure there's nothing to it, let's keep you on them."

Well, since 1997 I have had 5 echo's. Each one is worse than the last one. My most recent echo was May 24, 2004. It states the mitral valve has thickened leaflets with mild chordal calcification. Moderate mitral regurgitation with an RJA/LAA of 41%.

The aortic valve has sclerotic trileaflets with trace aortic insufficiency. The right atrium is moderately enlarged. Tricuspid vales are morphologically normal with moderate regurgitation. Pulmonary artery pressure is 30 mmHG.

Conclusion:
1. Moderate mitral insufficiency, greater than prio echo of 8/7/2003; increased RJA/LAA from prior study.
2. Left atrial enlargement, increased from prior study.
3. Mildly sclerotic aortic valve and mitral vale leaflets.
4. Ejection fraction of 50-60%.
5. Secondary Pulmonary Hypertension.

After getting the latest results today, I spoke with my attorney. He said it looks as if I will eventually need valve surgery. (He is comparing my results with those of his other clients that have taken Phen Fen.)

So..........that's my story and I must say it's not as bad as the small children I have read about. My prayers go to their families!!!!!!! Good bless them and watch over them.

 

[joy]

Hello, and welcome to our forum! I know that there are a few people who have taken phen fen and had heart problems with the drug. I think you have a couple of valid lawsuits... first of all..med mal, since the doctor didn't do his research and kept you on the drug after he thought that something was wrong with it, and second, I am not sure if the class action suit is over with phen fen, but you should check it out. I am 26, and while I never took phen fen, I had rheumatic fever when I was around 6 years old, but never knew quite why I felt like crap until I was pregnant with my second child. I was always tired, and it started when i was about 6 or 7. That was the rheumatic fever, and then when I had my first child, I developed sydenham's chorea, and had an ASO drawn, but it came up negative. Anyways, they told me it would go away on it's own, which it did. I guess the point to my post is to say, we are all a family, and to welcome you to our family. We range from 21-????? old. Anyways, Welcome!

 

[Johnny Stephens]

Redux for me

Redux for me

I took Redux for a month before giving up on it; I only lost a few pounds and it made me feel like a zombie. About a month after that, they were taken off the market. When my valve problems surfaced in 2001/2002, that was my first thought - the Redux had caused it.

My docs have all agreed that I wasn't exposed to it long enough, that it was my radiation treatments that had blasted my valves into premature old age.

 

[catwoman]

Gramma Jean:

One of my colleagues has MVP, as do several others in her family. One of her brothers, a lawyer, had MV repair about 2 years ago. She once told me that he has handled suits for Phen Fen users, but gave no more details.

 

[maxximom]

Hi There
Yup! I am one of those "lucky" people who took Phen Phen
I took it for 18 months. I had lost about 30 pounds on it. I took Redux as well..but stopped it after a few months, since I didn't see any major weight loss. I too have struggled with my weight for many years. I had been on Optifast for about 9 months and lost 80 pounds. I had gradually started gaining it back, when I started on the Phen Phen. I went to the Doctor who wrote the book on it..so I felt safe.After 2 weeks on the phen Phen.. I developed a terrible cough.. The doctor insisted it wasn't the Phen Phen..so I continued it. I changed to another doctor at the time and he too said the cough wasn't due to the Phen Phen and sent me to a Pulmonologist. All tests were negative. I finally stopped the Phen Phen..the cough went away after a few weeks..all and all I coughed (untill I retched..day and night) for about 3 months. I started back on the Phen Phen (stupid me) after about a month of beig off of it. The cough came back again..but not as bad and only lasted about 2 weeks..I continued with the Phen Phen for another year..until I started reading about the negative studies. I then went off of it.I had been seeing a Cardiologist during this time for PVC's and PAC's and he found a "Trivial" Aortic Stenosis. I moved to North Carolina and the Trivial Stenosis..went on to become "moderate" and then "Severe" in about 2 years time. I had a AVR and triple bypass done in Sept, 2001 at Duke. I have seen a Attorney and I am part of the 'Class Action" for Phen Phen. I probably will never collect anything, since there are so many people involved.in trying to collect.
Sorry this is so long.I will be very happy to give you any more infomation if you want. Email me privately if you wish
Joan
AVR and Triple by pass Duke Hosp. Dr. Donald Glower Sept 23. 2001
St Judes Toronto Stentless Porcine Valve

 

[Nancy]

Just had a few minutes and had to respond.

My husband has had three valve surgeries and 2 lung surgeries and he also has pulmonary hypertension which at the time of diagnosis was severe. His is primary, though. He never took diet drugs. But he did have rheumatic fever as a teen. He is on Tracleer for his PH and it has helped a lot.

You probably already know about the Pulmonary Hypertension Assoc. and their website. But thought I would give you the link, in case you didn't know about it. There are many people there who had taken Phen-Fen and some of them had taken it for a very short time. Several are pursuing lawsuits.

http://www.phassociation.org/Message_Boards/main.asp?board=1

best wishes.

 

[alicia]

I took Redux for only 2 months and ended up several years later developing severe mitral valve leakage and eventualy had MV repair which only held up for 6 months and then I was back in the hospital with severe lekage again and developed cardiomyopathy and a host of other heart problems. I ended up opting out of the class action suit at the request of my attorney and they settled very quickly with me after my MV repair. I thought I had got a very good settlement and then as I said I got gravely ill and almost died from all the heart problems. After 4 surgeries, I have NOW lost all the weight I wanted to when starting Redux. I will NEVER take another diet drug again. I had to change my eating habits and lifestyle. Take care and I wish you the best of luck.

Alicia

 

[SHerrin Hutt]

Hi Welcome
I think my valve problem was due to a diet pill I took about 28 yrs. don't remember the name but didn't start having problem till 1992. I hope you have better luck than I have had.

 

[momshoaf]

phen-fen and valve damage

phen-fen and valve damage

Hi I took phen-fen in 96-97 for a total of 10 mos. It worked wonderfully but had to stop when I became pregnant with my 5th baby at age 36. It was while working out at my healthclub(as I had done regularly all my adult life). when I began having severe symptoms when I began the weightlifting portion of my routine(not during the warmup aeorbics on the treadmill). They were severe and overwhelming. It felt like an elephant was on my chest, my legs and arms became very weak and kinda nauseous feeling. I found it impossible to recover and remained very fatigued into the next day After this happened several times I told my Dr. At first my gyn. felt it was my thyroid because it was a bit high and during my 3rd preg I had had similar symptoms and after several tests (which included an echo that showed normal valves) it was discovered I had hypothyroidism. Anyway I had to stop working out completely and soon just standing in front of the sink to brush my teeth brought on severe symptoms. When I laid down I had to lay on my side with my arm over my head to help me breath. After 6 months of this, I was finally sent to a cardiologist and had an echo which revealed two leaky valves, mitral and aortic. This was Oct 97 just when phen-fen was pulled but the cardiologist did not feel the studies proved the connection. He also could not tell me how my valves began leaking since the 1992 echo showed normal valves. He also could not understand the severity of my symptoms either in comparison to the damage. To the present, I am just short of being an invalid. I have 6 children who only knows mommy as someone who is always tired and sacked out on the sofa. They do not know the driven achieving striving person I truly was for the first 36 years of existance. The daily frustration of looking around at what needs to be done and any efforts to tackle the task leave me quickly fatigued and disheartened. I have yet to have any (male) doctor to take me seriously, they just shrug their shoulders and send me home.
What happens is that they put me on the tread mill and try to increase the speed without increasing resistance. I try to explain that "aerobic" activity alone does not bring on the symptoms but rather "anerobic" exerusion, even mild wipes me out. I just believe that if they looked at and listened to my heart WHILE I was experiencing symptoms they might see more regurg., than when there are no symptoms, while at rest or just doing aerobics. No one has said for sure that my regurgatation would not increase significantly when these specific stresses are applied. My body just feels like it doesn't have any oxygen supply to the muscles (sorta like when weightlifting and you have maxed out the burn phase and get that weak sickly feeling before your strength gives out when your body can no longer get enough oxygen to the muscles to keep going) I do have an attorney and should get a settlement but I fear that someday I will need some serious surgery and will not have the funds nor the ability to get insurance coverage due to preexisting condition. I am presently on medi-cal which I am greatful for but is very limited to access to a variety of specialists. Does anyone who reads this know if my regurg. could be greater under the stresses that I have described above and if so, where I could get any literature or the name of a cardiologist who can verify this. I want to be able to bring any of this knowledge to my next echo which I am presently trying to get scheduled. Chances are I will have to go to the guy I have gone to the past couple of times who does not see enough "damage" to warrant any help. I need to get this resolved before my settlement is finalized as level of severity of actual regurg is the main factor and my diabilitying symptoms are so out of sinc with what shows up on an echo. This family of 8 needs help and relief from what the damage to my once very healthy heart has robbed us of. thanks so much for any input and may God richly bless you as He has us in spite of this sruggle

 

[Karlynn]

Momshoaf, Welcome!!!!! You came to the right place for support and encouragement.

I can relate to your story so very much and it just makes my heart ache. I wasn't ever a Phen Fen user, but I began having severe arrhythmia problems do to my mitral valve while I was pregnant with my second child. After the baby was born, I didn't improve, like they thought I would. I felt horrible. I went through many doctors trying to find one who would listen to me and take me seriously. They just assumed a 27 year old woman shouldn't be having problems. One doctor tried to put me on valium because he thought it was all in my head. Finally I found a doctor that believed me. He tried many medication routes to correct my arrhythmia, but none ever worked well. 5 years after my second child's birth I had valve replacement surgery. My valve was almost gone and I should have had the surgery about 2 years before. My doctor, who I loved, was just so cautious because I was young.

I'm almost 13 years post-op now and I still feel badly about "gipping" my yound children of an active mother. I was a couch potato. But the surgery gave me a new life.

So keep advocating for yourself. Keep looking for a doctor who listens and believes.

Have you had a 24 hour Holter monitor done? Going to a doctor's office is like taking a car in to a mechanic. It never has problems when it's up on the rack. That was one of my problems. I never had the bad arrhythmia while in the doctor's office.

There is no medication that will fix your valves. It sounds like you are heading for a surgery. But believe me when I tell you that's a good thing. My surgery completely changed my life.

If you tell us where you live, we may be able to direct you to a doctor or facility that one of us has faith in.

 

[SHerrin Hutt]

Welcome, I too! Had a hard time getting anyone to listen to me. I had several echo's but they had to do a TEE. This is where they run a scope down your throat to look at the whole heart. It showed everything far worse than the echo. I even had a husband that did my heart cath and his wife did my echo and a third Dr. from their group did the TEE. Husband & wife disagree on everything but the Dr. that did tthee TEE called the first surgery off. He said it wouldn't improve my quailty of life that is why I had to go to the Cleveland CLinic. I whish you luck in getting help! His is a great group of people they will support you in every way.

 

[Nancy]

Just wondered if anyone has checked out your pulmonary artery pressures. My husband has pulmonary hypertension. He was not a Phen-fen user. His became severe. He had many of the symptoms you are describing. Many people who have taken Phen-fen develop pulmonary hypertension and some also heart valve problems.

Pulmonary hypertension is a disease that is rare. Most doctors have never had a patient with it and don't investigate the possibility very much. But high pressure will show up in an echo. However an echo is not the test that determines the pulmonary hypertension, it can only estimate and not very well, a right heart cath is the test for PH.

If at any time you see or hear mention of pulmonary hypertension as part of your condition, then it is time to seek out a specialist in that disease.

PH now has several good medications which can help a great deal and which can prolong life. My husband is on Tracleer.

He also has to stay on a very, very low sodium diet to keep his fluid build-up at bay.

Here is a link to the PHA website.

http://www.phassociation.org/Message_Boards/main.asp?board=1

 

[Andrea]

Phen Fen

Phen Fen

Welcome to the forum

I was a phen fen user and have had one surgery and going back for a second in about a week or less. I have been involved with the lawsuit for almost 5 years now. I'm not sure that they are still taking ppl into the lawsuit but look into it to be sure. They have a matrix of severity levels set up for the lawsuit 1-5 5 being death. I am a level 4.

I have been through all of the tests, procedures and of course the mytral valve replacement surgery so if you have any questions for a phen fen user I will be glad to answer.

I have a long and complete 'story' of sorts about my symptoms and what led me to where I am now. Its at http://www.andicat.com/heart.html but I must warn you that its very long and not edited. I thing I banged it out on the keyboard one night before my first surgery so its hard to read.

Everyone who took phen fen was entitled to at least a free echo to see if problems existed. I dont know if this offer is still valid but please follow up with your atty.

 

[McCln]

I just have to say something. I don't trust any diet pills or quick weight loss centers. It just messes up the body and the mind on quick weight loss. They conveince you that you can lose upteen pounds a week without hurting you mind or body. Well, we all know that all of it is a pack of lies to make a quick buck on depressed or desperate people. I was born with a defective heart, no diets pills in my life. But I do feel for those who do listen to quick weight loss schemes. I hope you get with your lawyer and get a suit going. you deserve to get compensated for being misled for a scheme to make money of your need to lose weight. I will pray for you and hope you will find better, heathier ways to lose the weight and have good treatment for your heart problems. Take care and keep coming in here. We have information galore for everyone.

Caroline
09-13-01
Aortic valve

 

[momshoaf]

Thanks for all your input

Thanks for all your input

This is momshoaf, thank you every one for your responses. To Kaylynn, isn't it the age old cliche of how Dr's so often do not listen to women's complaints. I just know something is wrong even though nothing overly serious has shown up on any of the many tests done. For example, a few weeks back I took my 2 youngest to McDonalds, I get out of my seat in my hitop van and go behind my seat to unbuckle my then 9 month old and pick her up, I then go to my 6 yr old and unbuckle her, I open the door, step down and we walk across the parking lot, open the door and get in line. It was then, when we stopped tha the symptoms overtake me, this particular time, they were so bad that I was breaking out in a sweat trying to keep my composure and not pass out as I so felt like I was going to do. I was so terrified because of my children being with me, I was determined to hang on. But this has been the state of my life having episodes like this every single day over and over for the past 7 years now. These symptoms wipe me out with unbelievable fatigue even though I sleep well (considering having an nursing infant) and take naps alot.
I live in South Orange County, CA. As I said before I am on medi-cal and there is a severe limit of choices of DR's, especially a specialist. To Karlynn, tommorrow I have a list of requests for my Dr., one is to see if a holter monitor could be of some value as my symptoms occur during the course of going through with life. To SHerrin Hutt, I also plan on investigating the benifits of having a TEE done but I freak to think of something going down my throat. I gag brushing my teeth! I'd make a great bulimic. I dry heave when the dentist has to put one of those goop filled molds in my mouth to make an impression, shoot, I gag when they put those xray cards in my mouth! To Nancy, I did check out on the PPH(primary pulmunary hypertension) caused by phen-fen and did have a rt heart catheter. I showed normal pressures but I was disappointed that they did not allow me to work up to the point of having symptoms. THey had me hold one liter IV's in each hand and lift them up like as in weight lifting. Please, I was a young strong healthy person before this heart damage, it does take effort to bring the symptoms. That is the point I keep trying to make to the DR's, what is the point of only testing me at rest when I have no symptoms, My life requires me to do more than lay around doing nothing, I need to be able to move around, bend down pick things up push things around wrestle with my kids,scrub the counter, rack the yard. All these exertions are too much for me to do. If any of you know of anyone here in So. Calf, maybe I could call them and plead my case, maybe they can arrange to take my medi-cal or something. I just know that I need to find out for sure what may be going on before my settlement comes through. I need to be compensated for what I will need to deal with later on.
Andrea, I read your story, how terrible a thing to have to go through. The thought of me ever having a mechanical valve put in me is a scary thought but the trade off of having my life back helps push that fear away. By the way, you mentioned that you gained alot of weight after surgery, what caused this? Do you have to take those anti-rejection drugs, are they the cause? This is a huge concern for me, I just can't gain any weight, I am not really heavy but have had to live with the fact that I will never be a size 5, I can live as a size 8 but no more!!! I am too short.
Any more of you out there that want to share your stories and findings with me will be greatly appreciated. Has anyone out there experienced what I have, namely, have pretty bad symptoms but the echos and other tests have not shown damage enough to justify the level of symptoms and did you ever find out and find a fix for your distress? I refuse to believe that my body is not warning me something is seriously wrong, I have always been so sensitive to any changes in my body which upon investigating find the source, as opposed to being "all in my head" I am not the sycosematic(spelling?) type. Gotta go, thanks again, no time to proof sorry for any errors.

 

[Andrea]

Well I think I gained since surgery last year because I have never felt totally recovered and have avoided exertion as I once slipped into atrial fib and they had a hard time getting me back to a sinus rythym. My case was unusual. My valve has been leaking from the stitching which is odd. Now I plan on getting it fixed (probably this week) with another open heart and I'm looking forward to it. So that should at least show you it cant be that bad because I've been through it once already and I'm fine with doing it again

Besides since the discovery of what happened to my heart after phen fen, I have decided there are much more important things in life than what size clothes you wear.

 

[Mary]

Momshoaf,
Have you had your iron level checked lately? I would recommend this as an
additional test when you are trying to determine why you are symptomatic and it's not completely attributed to your heart.

I had very low numbers this spring. I'm a chronic border-line anemic. I have a very difficult time taking supplements so I tend to stay low. Anemia can cause severe shortness of breath, lightheadness, and fatigue beyond belief even with restorative sleep.

I've worked out aerobically for 20 years and did some weight training until I was told not to by the cardiologist (no weights). I have a good feel for what you're experiencing; I have 5 children and well remember how active a young mother must be.

Anyway, anemia is an easy thing to check on as a first step. Let us know what's going on.
Mary

 

[joy]

Momshoaf, is it possible to maybe go to a different state to get a second opinion? I know a lot of people do that. I have tricare(military health insurance) so I understand the feeling of being stuck going where they are contracted through. Fortunately, I am able to go to a choice hospital. A lot of doctors don't want to deal with the paper work, and the insurance pays what they feel is fair, and I know a lot of doctors don't like that idea either. I know once, I had a $54,000 hospital bill, and they only got $14,000 of it. Have you thought about social security disability insurance? Just a couple of questions.