Medication trigger illness?

[mammaberger]

HI to everyone, I am new here. I have had muscle twitching, wasting what my doctor thinks is some kind of mnd and am awaiting emg studies. Sometimes I feel my illness was brought on by a medication I was taking as I was perfectly healthy but had a reaction to medication and my health has been down hill since then. I noticed on one site it says mnd can be caused by toxic drugs. Just curious to know if anyone else was taking medication before they got sick that they feel may have triggered there illness?

[Beebe]

Hi, Just wondered what drugs you were taking?? Maybe someone will be able to answer you better. Welcome. My Best to you, Beebe

[Al]

Cholesterol lowering meds are being investigated for MND and ALS progression.
AL.

[Icanmanz]

mamma, do you remember what kind of medication you were taking? I just can't believe the great number of people with MND. Three years ago or less, I had not even heard of MND!!!! Jeeeez, it seems to be getting worse every day. It is getting to the point to where MND is as common as a cold! We need a cure asap!!!

Irma

[mammaberger]

I was taking effexor but I had some swelling and my doctor gave me a diuretic and I had a bad reaction to it and then I got sick. Maybe just coincedence but I was always so healthy. Do you mean you hear about mnd lots because of being on here or do you know people with it. It makes you wonder all of the triggers and what they are environmental, what we ingest, the food we eat with all of the sprays and toxins. What causes it, I guess this is the million dollar question. But out of curiosity where others of family members on meds when they develpoed there illness. What scares me is drug companies do not do long term studies on a lot of drugs and can only guess what the long term effects would be. A lot of drugs they don't even know how they effect the body they just know they work, It scares me a lot!

[Icanmanz]

Exactly, momma! It should scare us a lot. You see, I am from the old school generation...........I was born, and raised out in the country as a youngster. I moved to the city in my 20's. As I was growing up, I do not remember seeing so many different types of illnesses. Take for instance, this MND, I first learned of it when my son came up with it. Of course I was shocked. I knew of Lou Gherig, but I never took the time to sit down, and research his illness, until it hit home. What a way to find out about this great man's disease that claimed his life.

I have a long time old school friend that we used to hang out with back in my hey days when my boys were toddlers. We visited each other a lot, and played cards till dawn on a regular basis. We had our 2 boys, and they had their one, so they were buddies. We cut down on the visits, I should say all of 100% when the boys became pre-teens, because we got busy with them becoming teen agers. Okay the years went by, and our boys became men, but sorta lost contact, but we still called, and emailed each other, not too regular though. I did not let them know of my Rudy's illness until later. I just could not talk about it during the early stages of als, because I started bawling right away. I just wanted to talk to family only. So when my son's health started declining, and I was sort of accepting his fate, I decided to call my friends, and give them the bad news, but before I started telling her about my son, you would not believe what she told me. She told me that she was in bad health, and docs were suspecting MND, probable ALS. I almost had a heart attack. Well, you can just imagine the rest. What a coincidence! She has not being dxed yet, but she is going to the same docs my son was seeing. She looks bad though. Of course she is in denial, but I don't like to tal to her about it. I just call and check on her. My friend, I hope she gets good news! God bless you all!

Irma

[nspoc]

Hi All -

Just thought I would throw my 2 cents in. ALS has been known and described since early 1870's - long before most of our medications. But it WAS in the industrial era, thus many environmental toxins.

Given the high incidence of Gulf War vets with ALS, I am leaning toward genetic predisposition brought on by toxins.

My Pals mixed toxic chemotherapy for decades without any protection - but not every chemo nurse gets ALS. She also took Statins.

It is probably prudent to take a closer look at statins, but outside of that, I think we will find one of the causes in our environment, rather than in specific medications. Example -AL was on statins, but he also ran into a soup of toxic chemicals while fighting fires.

I emphasize one of the causes, because ALS looks incredibly multi-factorial.

I think all of us in the ALS world look to what we were exposed to in the early stages of our ALS journey - I think it is natural.

I, for one, think the answer is so elusive because the VAST majority of people exposed to the supposed causative agents never develop ALS. Even if you were exposed to a toxin how could we know YOU (or ME) specifically would get this disease.

I guess don't expend too much energy on the medication concern because it all boils down to risk/benefit - you probably needed the meds you took. In the case of statins: dozens of millions of people take them annually - but rarely does a statin user get ALS. Yet many ALS patients get the disease who have never taken a Statin.

In my ALS journey I have wondered about these things, but I think the answer will emerge in genetic research - a gene or genes that can be altered so the person no longer remains susceptible to the effects of the toxin.

Just my little take on it - but it keeps me from focusing on what I cannot change.

Take care all - Beth

[mammaberger]

Yes I agree many things can trigger. I think we just have to remember many drugs (pharmaceuticals) are chemicals, our bodies are not meant to ingest them. I also used to take wellbutrin and when you read about them they are so full of chemicals and so many people react terribly. On this site I looked at with FDA reports three people were diagnosed with nervous system disorders and many people with autoimmune disorders after ingesting this drug. I think generally in our lives we are exposed to more toxins. I just find myself wondering if I could have done something to avoid this. I'm sure I'm just going through a natural process coming to terms with being ill. Does anyone know if als cases are on the rise?

[MtPockets]

I had started a thread about the possible effects of Neurontin causing a MND. If you like do a search above for neurontin, and you will see what the drug company themselves said about thsi one drug. A copy of one of my posts is below.

God Bless
Capt AL

Does anyone know of anyone studying this drug Neurontin as related to causing MND ALS? Here are a few quotes I have found:

It is given commonly for nerve injury to reduce the pain and the company that makes it states that it does not know how it works. But somehow it stops the nerves from relaying the pain to the brain. The reason I am concerned I was on this drug at 2500mg per day for over 10 years due to a spinal injury from a plane accident 18 years ago. If this drug contributed to my ALS in any way it needs to be pulled off the market before others get the same disease.

Here is a partial list of the side effects from the Neurontin website:

"Nervous System:

Frequent: vertigo, hyperkinesia, paresthesia, decreased or absent reflexes, increased reflexes, anxiety, hostility; Infrequent: CNS tumors, syncope, dreaming abnormal, aphasia, hypesthesia, intracranial hemorrhage, hypotonia, dysesthesia, paresis, ystonia,hemiplegia, facial paralysis, stupor, cerebellar dysfunction, positive Babinski sign, decreased position sense, subdural hematoma, apathy, hallucination, decrease or loss of libido, agitation, paranoia, depersonalization, euphoria, feeling high, doped-up sensation, suicide attempt, psychosis; Rare:oreoathetosis, orofacial dyskinesia, encephalopathy, nerve palsy, personality disorder, increased libido, subdued temperament, apraxia, fine motor control disorder, meningismus, local myoclonus, hyperesthesia, hypokinesia, mania, neurosis, hysteria, antisocial reaction, suicide."
I just finished filling out a report to the FDA about how the neurontin had affected me. I doubt that it will do any good, but if anyone else out there is taking it, I would reconsider. It's too late for me but maybe someone else might not have to go through this ALS. That is why I was wondering if any scientist or group is studying this drug.
An interesting thing I found out while filling out the form for the FDA is the company that makes the drug, neurontin, is Pfizer and they do not know or have any idea how the drug works?????? They said that from their own website. You got to be kidding me.
God Bless,
Big AL:cry:

[mammaberger]

So scarey same as wellbutrin, Glaxo Smith says they do not know exactly how it effects the brain. Wellbutrin gave me muscle pain in my hands and knees the doctor I was seeing said that would not be from Wellbutirn and I stayed on it for two years. After I looked it up and muscle pain is a sign of an allergic reaction and you are supposed to get off of it asap if you have this. I stayed on it for two years only because it worked for the depression I was having. I also have memory/cognitive problems, I just can't help but think, what if I did not take this. I am twenty nine so young, I had so much more to do, we all do. I sure don't trust these drugs and drug companies, they fund there own studies. Have you heard of others that blame there illness or think it may have come from neurontin. I knew a girl who was on it it was making her legs weak. She is ok now though. How long were you on neurontin before you started with symptoms? People may think I sound paranoid but damn it something triggers these illnesses and we are just taught to trust in the medical field, trust that the drugs they give us are safe. We have to remember they are chemicals, our body is not meant for them. I realize there is need for them and I realize there was illness before these drugs came along but why is m.s on the rise, cancer? I'm not sure in mnd is. I really believe it is environmental toxins. As you can tell I have a mistrust in the pharmaceutical industry. This ritalek, it may really help people I don't know but it seems ridiculous to say it will add two months to your life, but will not slow the muscle wasting. If you ask me it sounds like b.s., correct me if I'm wrong and this is a wonder drug, but really how much money is being made of of this. Have you found others that attribute mnd to neurontin. I realize that we may have gotten ill anyways but damn it, it's our lives, our children need us, our husbands and wives need us.

[mammaberger]

Mt pockets I was looking into what you said about neurontin, since i am sick I have too much time on my hands but I found a site where they have fda reports on all sorts of drugs. Neurontin is a bad one they have it as one on the top drugs to watch for as there were over eight hundred reports and many deaths related to this drug. What I did notice is there were two reports of als after taking neurontrin reported, reports of demylination, a few reports of muscle atrophy, many of weakness and muscle twitching(these cases said weakness and twitching resolved after dicontinuing the drug). God only knows but it does make you go hhhmmmmm.

[MtPockets]

If we really knew what went on behind the closed doors of some of the prescription drug companies we would probably stop taking any drug. I was told they weight the risks of how much a drug will make in profits against the payout of possible lawsuits due to deaths. If the profits are greater they put the drug on the market and let the chips fall where they may.

I was in a pain clinic about 16 years ago for chronic low back pain and they started me on Wellbutrin. I immediately begin to have heart palpitations. After a couple of weeks my heart finally went into fibrillation. If you read the side effects guess what?
From their own http://www.gsk.com/ website:

CLINICAL PHARMACOLOGY of WELLBUTRIN XL "Pharmacodynamics: Bupropion (Wellbutrin) is a relatively weak inhibitor of the neuronal uptake of norepinephrine and dopamine, and does not inhibit monoamine oxidase or the re-uptake of serotonin. While the mechanism of action of bupropion, as with other antidepressants, is unknown, " You have got to be kidding right?

Again another drug that they have no idea how it works??? Yet they are quick to sale it and make loads of money.

Below is a partial list of the side effects. There are too many to list here. To see for your self go to: http://us.gsk.com/products/assets/us_wellbutrinXL.pdf and look on page 20. As usual buried in the back are the most important things you need to know.
(I have tried 4 times to get this chart to come out right. If it does not come out right this time go to the site and see for yourself.)
Body System/Adverse Event
WELLBUTRIN SR 300 mg/day`WELLBUTRIN SR 400 mg/day Placebo
Cardiovascular
Palpitation 2% 6% 2%
Flushing 1% 4% —
Migraine 1% 4% 1%
Hot flashes 1% 3% 1%

Well it's good to know only 6% (6 out of 100 people) get palpitations of the heart. I noticed they did not say how many died from the heart going into fibrillation. Also my dosage was 2500 mg per day, not the 400 mg quoted in the study. I wonder what the test results would say at that level of dosage?

I guess the cost/ risk benefit was worth it for them to almost kill me. After all how could my family prove that any particular drug led to my death?

After I had left there I requested a copy of my medical records. Funny how there was no record of them ever having given me any Wellbutrin. But, I still had the prescription bottles to prove that they did give it to me. CYA

SO WHAT DO YOU DO?
As soon as I get any new medicine I go to the Internet and look up the side effects and the other medications that are not suppose to be used along with it. The Doctors are too busy sometimes to do this, and it might just save your life. A good site I use is http://www.drugs.com/ I also use http://www.webmd.com/

As for your question about the Neurontin. I was on it for about 10 years at 2500 mg per day and my symptoms started while on the drug around the last year.

I hope my ranting doesn't scare everyone away from taking your needed medicines. I just get so upset thinking that I may have gotten this ALS from some drug I was prescribed and NO ONE would ever admit that, and to top if off they have no idea how it works????? AMAZING!

God Bless
Capt AL

[pmbenb83]

Hi all,
My husband, Eric, was having some of his symptoms before taking Lipitor, but after a month on the medication in the Summer of 2006, his cramping was so bad all over his body, he took himself off the medication. After that summer, his symptoms progressed pretty quickly. We will never know if this started his downward spiral or not. In the spring of 2007, he also had a Tegretol reaction after being on the medication for a month, which landed him in the hospital. They quickly tried to say it was a tick bite, but could never come up with a blood test to back it up. I just think that they didn't want to say their original diagnosis of Tegretol, because they would have to report it and if too many reactions are reported it will come off the market. After not being able to confirm a tick bite, the infectious disease doctor called me one evening and asked if anyone had mentioned ALS to us.

Our neighbor took Lipitor the same year and had renal failure and now has to keep a close watch of his BUN and creatinine.

My father took Lipitor for many years and 2 years ago had renal failure. His cardiologist put him back on Lipitor a few months ago, but I don't think the neprhologist knows yet.

It is nice to have modern medicine to keep us alive longer than the olden days, but it is very scary too!

Good luck with all of our meds!
Pam B in Va

[mammaberger]

Yes it's scarey. I was reading how the drug companies, the fda, they work together, the fda is not the big watch dog they are supposed to be. I was reading in a New York times report that the drug companies even fund 60 percent of medical trials and that now even the medical journals that are written for doctors to learn from are tainted because these doctor's are funded by the drug companies. I think Michael Moore should do a documentary on Drug companies. I came across a report from the fda that is just recent and they are warning about a drug that is used to treat Anemia brought about from cancer treatment (chemotherapy) that they have found that cancer patients taking this drug have a higher death rate and increase in tumour growth than the patients with cancer not taking this drug. So this drug that people are given they are now saying are better off without and it actually caused death and tumour growth somehow made it through the fda and into the mouths of cancer patients is just crazy. The drug companies covered up the fact that ssri antidepressants were known to cause suicidal thoughts in youth, they hid this fact, they silenced the researcher who wanted to report this side effect. The drug companies are allowed to throw the results of there studies and no one does anything. If a drug trial is 12 months long and the last six months there are unfavorable results, they will make it a six month study and disregard the last six months of the study. There are so many dishonest tactics that are used in these drug trials and frankly it is just scarey. I realize there is a need for many medications, many do help and are life savers. Last night I was reading these reports on the drug companies from reputable resources, globe and mail, new york times etc. My opinion is that I can no longer trust in these pharmaceuticals and trust they are safe. It may not have caused any one of our illnesses but this system that introduces and tests our drugs is dishonest and corrupt. The government really needs to take measures to ensure that the medications we are taking are safe. There is my two bits. Oh and Mt pockets, you must be one tough cookie, you survived a plane crash? Now there is another issue, trauma to the body that may cause these illnesses. Who knows, if we knew the answer maybe we would all be better and we could all get together on a beach in mexico and celebrate while drinking some stiff drinks with nice little umbrellas!!!!But for now we'll just take it one day at a time and be thankful for today!!!!!

[mammaberger]

Oh yes Mt Pockets about the Wellbutrin, it says 6 percent get heart palipitaions but who knows if that's a correct number. It says that 1 in ten thousand people have rectal complaints but my husband took it for quiting smoking (zyban) which is the same product only marketed under a different name for smoking cessation. We both had the same issue, I won't get into details with the bum department. So I guess we were 2 in twenty thousand people that this happens to. The scariest thing with my husband was that he has never sleep walked before but on this drug he woke up two times in the middle of the night and drove to work not even aware it was dark out, not noticing the time in the house or the car, snapping out of it when he drove all of the way to work and the doors were locked besause it was 2 or three in the morning. It just scares me that a lot of illnesses are said to stem from evironmental toxins, but what about the toxins we ingest into our own bodies. My sister has psoriasis and her doctor wanted to put her on a drug I can't remember the name of it, you see commercials on t.v. for it and on the commercial it even says may cause nervous system diorders. When my sister researched more into it on the internet she found that the reports said that people who were taking this drug were developing m.s. at higher numbers than the regular population. She decided she'd rather live with the psoriasis then take a chance developing m.s. because of a drug. My point of view is if by the own drug companies admission this drug causes m.s. to develope in people taking it how do they know other drugs could not do the same when they don't really know how they work in the body. My sister ended up going to a naturopath ( I realize lots are quacks and out for your money) but this guy did blood work pin pointed her food allergies and within a month her psoriasis that had been so terrible her whole life was gone. The company for the drug for psoriasis claimes that it is an auto immune disorder but my sister's was a food allergy. I just wish these companies would put there billions of dollars into cures insteadof coming up with bandaid drugs to treat the symptoms and not the root cause, cures are not profitable enough i guess.

[Shatzie]

I do not have a diagnosis for my bulbar symptoms yet, but my neurologist believes I have a neuromuscular disease. Five years ago I was on Neuronitin and Wellbutrin at the same time for depression after I had a severe reaction to a bowel drug (Librax) I was on. I had heard about the possibility of a statin link, but this is the first time I realized that there might be an antidepressant link with neurological problems. I ended up taking seven different antidepressants before givng up on them going off the meds four years ago and treating the depression with exercise and supplements.

[mammaberger]

Who knows if antidepressants could be a link, it's just a theory. I just read some fda reports that people developed nervous system disorders after taking wellbutrin and neurontin, they may have developed these illnesses anyways. Like mt pockets said it's scarey to know that they don't even know how these drugs effect the brain. The nervous system is so delicate and fragile and it's scarey to think of a drug (who knows what chemicals in the brain are effected) could be messing around with the brains chemicals. Neuro toxins are thought to be a cause in mnd and I know the one metabolite in Wellbutrin is considered a neuro toxin. But then the next person can take drugs and never develope any illness so it's got to be your chemical make-up in relation to things that could trigger it. This is just one of my theories as I struggle to find a reason why? How long were you on meds. Were you on statins as well? Maybe this als registry will shed more light on common factors between people who develope this diseases. I think we have to look at toxin in the environment, toxins we ingest in our foods through pesticides, and toxins we ingest in the form of meds. Don't get me wrong meds are life savers and needed in many cases, I just think personally we need to research side effects ourselves before saying yes to medications. Dr's deal with so many medications they can't possibly know all the side effects, at least with the internet now we have access to these types of information. I am sorry to hear of you having a possible mnd I see you have children, I have one young son and it's such a helpless feeling to be in the throws of this and know you have children that depend on you.

[Shatzie]

In late 2000 I developed chronic pelvic pain. Although I felt it was gynecolgical in origin, the doctors I went to thought I had IBS and prescribed Librax. Even though I found out several years later that I did have severe endometriosis, it relieved much of my discomfort, so at the time, I thought they were right. I now know that Librax is two drugs, one of which is Librium, a sedative or depressant. Neither my GI doc or my GP who refilled my prescriptions warned me that Librium builds up in your liver. You are supposed to have blood tests every few months to make sure this isn't happening. So the short story is that I was on this drug 3x a day for six months and all of a sudden developed severe, suicidal depression. Thankfully a psychiatrist took one look at my chart and said, "I know what caused this." I ended up being on anti-depressants, including Wellbutrin and Neurontin at the same time, for over a year. At the time they were life-saving and I'm very sure I would not be here if it were not for anti-depressants, but would not be suprised it they or the Librax have something to do with my present bulbar symptoms. I know that the Librax definitely "messed me up" chemically, I have had to live with some level of depression daily since then. But thankfully I was able to get off the psych meds and feel better today than I did on them.

[mammaberger]

Yes well I think that it why the statins are being investigated because they are so hard on the liver. There are some reports that say als may have to do with liver and drugs that impede liver function may be responsible, but who the heck really knows.

[patricia1]

There is a new study with Lipitor They are thinking it may help inflamation in ALS .So:???: go figure

[mammaberger]

Now is this study funded by the makers of lipitor? Is it there respone to the fact it may be implicated in the developement with als. It's like with anything, one day they say coffee is bad for you the next time it's good for you. I wish we could have more trust in our medical system.

[MtPockets]

Well here is something else to cheer you up about medicines.
When my wife was in college and taking a class in prescriptions drugs, the first day the instructor told the class, "All of you need to understand that all prescription drugs are a type of poison. They are made to kill something, such as germs. If taken beyond the recommended dosage they will kill you."

The instructor went on to explain that any foreign substance entering the body that is not "Natural" to the body will have some kind of harmful side effects. The amount and type vary depending on the strength of the medicine and the chemical balance of your own system.

Just like everyone's DNA is different, each of our bodies chemical balance is totally different. What hurts me may not hurt you. This is one of the reasons they have drug trials to see how a varied sampling of the public will react to a specific drug.

Then you add to the mix by taking several different drugs at a time and each of them may have a different reaction based on the combination of those drugs inside your body.

I am really concerned about this because I have found out the hard way that I am allergic to many drugs, especially pain medicines. Just a short list of the ones I have had reactions to are: morphine, deladid, stadol, duragesic, oxycontin, and codine. I also am allergic to some generic drugs, but not the name brands? Go figure?

The first time I found out I was allergic to anything I was in the hospital and had just come out of surgery and they had given me some morphine. I began to feel weird, dizzy, and my heart felt like it was going to jump out of my chest. Then my heart just stopped. They called a code on me and started CPR. After being jump started a few times and them giving me some medicine to counter act the morphine, my heart started back again.

During the time my heart was not beating, I felt absolutely no pain, no fear, time seemed to stand still. It seemed to last 30 minutes, but later I was told it was only a few minutes. There was a PEACE and an indescribable LOVE, like I have never known could possibly exist that was all over me.

I could see my wife and all the doctors working on me, but I felt none of it. My wife was at the head of the bed laying her hand on my head and crying out in prayer. She was saying AL you can not leave me alone to raise 4 children. When this happened our children were still small. She began to quote scripture, cry, and command me to come back to her. I remember her saying over and over, "Don't you leave me AL Marble, I can not raise these children by myself."

THEN I HEARD THE VOICE. DO YOU WANT TO STAY OR GO HOME? WHAT? I HAD A CHOICE?

I listened to my wife's prayers and saw her tears and my heart was torn between the peace and love I felt at that moment and the future needs of my family without me. To me it was an easy choice. I said I wanted to go back. I knew that one day at a later time I would make this journey again, but for now my family needed me.

Immediately after saying I want to go back, I felt the sting of the shocks and the pain, pounding on my chest, I heard all the noise and confusion of everyone talking at one time. I was back in my body.

I heard the heart monitor beeping my heart rhythm. I felt pain everywhere it seemed. I was having seizers for a time and finally settled down. I was moved to intensive care for a few days.

Now maybe you can better understand why I have a peace about dying and the whole process. I've already had sort of a dress rehearsal I guess you could say.

I pray that somehow my experience can help build up your faith and bring you a measure of comfort for what lies ahead for us all. Also, I cannot stress enough the possible seriousness of a drug allergic reaction.

Have a great weekend.

God Bless
Capt AL
http://i160.photobucket.com/albums/t172/ShakeyMarble/Animations/crossheart.gif

[mammaberger]

Wow AL what a story, youre poor wife must have been terrified. It sounds as if you may have nine lives!!!! You survived a plane crash, the reaction to medication, I wish I could say now let's hope you survive this damn disease!!!!

[Steve100]

There was a PEACE and an indescribable LOVE, like I have never known could possibly exist that was all over me.

I love reading about this sort of stuff, its exactly what I need to hear, so thanks for sharing, Capt Al.

[tyyosh]

About statin drugs:

I had some morning stiffness of fingers and calves only - wasn't sure what it was then. Took statins for 5 weeks, then suddenly the tightness went over the entire body including entire face, then severe GERD hit, completely disabling me and throwing me into a spiral of terrible sleep and rapid weakness progression over the entire body. It's been only 7 weeks since the tightness and already there is now dysphagia, weaker breathing, sleep problems, and severe weakness. Every day something else changes. Is this the world record for progression? One neuro said it can't be a MND, they don't go that fast.

[MtPockets]

Your most welcome. I wish more of us had these type experiences to share. Perhaps it would help bring peace to what all of us will one day have to face.

I can't speak for anyone but myself, But I know, that I know what is waiting for me on the other side. Peace and LOVE beyond anything we can ever imagine.

1 Corinthians 2:9 (javascript:showBibleRef('1 Corinthians+2','KJV'))"But as it is written, Eye hath not seen, nor ear heard, neither have entered into the heart of man, the things which God hath prepared for them that love him."