GBS or CIDP from Statins?
AnonymousMay 30, 2010 at 8:07 pm
But IF you read carefully the ‘full prescribing information’? The drug co makes it very hard to determine neuropathic side effects.
Remember, that few people know HOW to report such side effects to the FDA. Actually it’s easy and painless? But it is time-consuming-in that it takes about 45 minutes of answering phone questions so all their forms can be filled in[I call it thorough?]. I’ve had to report serious side effects on occasion and have always found the FDA to be helpful and informative to my questions at the end and my concerns. Most folks are intimidated to report s/e’s and most docs simply won’t/don’t take the time! Sad state of affairs in my humble opinion.
I suspect that should you web up ‘Statins+Neuropathy’ You’ll find lots of studies on the subject, posts at various sites and lots of ‘our pill will cure you’ sites as well. Skip the last ones, please!
I think the key aspect is IF you developed PN pain while on the statins or long after you’d stopped? I’d taken one, but it simply didn’t work-but that was years before my PN/CIDP developed. I don’t think they have a long term effect on our systems? But I’m not gonna swear tho that! Good luck!
AnonymousJune 10, 2010 at 1:43 am
I have been 6 months now and just today was given a final CIDP from a top dog, I already know but you have to let them put there stamp.
Anyhow as far as reporting to FDA a person just needs to call the Manufacture and report, easy, quick and they have to and are requires to turn over to FDA.
Never have to fill out a form. More people need to know this.
AnonymousJuly 6, 2010 at 6:56 pm
They simply collect and ‘pool’ the info from those who call in and connect it to the medication… No names are EVER involved, nor should/could they be unless it’s thru a severe hospital reaction. THEN the hospital SHOULD have done the reporting, but you never know.. I’ve learned that they don’t always to avoid possible litigation.
A good site to see is at the FDA
and the base site is:
Take a look at the FDA and do a search of ‘statins’ in their info base.
I am glad you reported things. It IS painless, isn’t it?
Ironically, some docs DO report and are active about it, others simply do not… for whatever reasons. The whole thing one doc told me is for them, easy. I guess that’s what they’ve got all that staff for? I dunno.
Of course? IT simply doesn’t change things in YOUR case. Litigation IS expensive and unlikely to be resolved in your lifetime…[what our drug costs pay for I guess, in part] But on at least two medications I’ve been on? They were later ‘black-boxed’ -meaning there are warnings attached to some who can and do get reactions such as yours or mine. The more who constructively complain? The better the whole ‘system’ can work! And it CAN!
PS I guess I should congratulate you on a cidp diagnosis? I do and I don’t, as I really wouldn’t wish this on my worst enemies, if I have any….. [OK maybe a week’s worth….] Now you have a NAME, and a choice of ways to go…limited for now, but do look up Alice’s posts on Stem Cell implatation…. Under the CIDP forum. Bless you and never lose faith in what your body is telling you! It can and does save your life. Hope and good things soon!
AnonymousNovember 7, 2010 at 10:54 pm
[QUOTE=Surfrider]Has anybody had a reaction from a statin? I can’t be the only one. The FDA reports 76 complaints just from ZOCOR like I took. If you are out there let it be known.
Polymyalgia rheumatica[/COLOR][/COLOR][/COLOR] is the condition most commonly a result of the statins. It may seem similar in a way to GBS…but it is it’s own identified condition and a result from statins. My step dad got it really bad. Took 2 years to recover and still isn’t 100%.
AnonymousJanuary 6, 2011 at 10:13 am
I’m a MALE – 55 YO – Cholesterol was 214 and in May 2005 I had a heart attack. A neurosurgeon I know who exercises had a heart attack with 140 cholesterol ! The cardiologist put me on statins. Shortly thereafter I complained of leg cramps (Charley Horses) so severe I thought my leg bone may break. I fell to the floor at times doubled up screaming in pain. I told my cardiologist and PCP about this and they developed that deer in the head-light look. I’m not a doctor and I really thought it may be a potassium deficiency caused by statins. Blood test showed my potassium levels were in the normal range. I asked my PCP to write a script for “STRONG” (20 MEQ’s) potassium chloride tabs anyway. Shortly after taking the potassium my leg pain subsided dramatically, my hunch appeared to be correct or at least it helped relieve the pain and the deer in the head-light, the doctors looked normal again. I changed PCP’s and told the new PCP my story. He suggested I dose with 250 mg’s of magnesium twice a day to help my body absorb more potassium. I started doing this and the pain subsided even more. I still have mild leg cramps brought on by body position.
My new PCP switched me from Lisinopril to Diovan (BP drugs) to reduce my ace cough, it worked great. However, Diovan has a strong warning NOT to take potassium when using the drug because you can lower your BP to dangerous levels and increase your potassium to dangerous levels. I have ignored this warning for over a year because pain is a great motivator. 2 weeks ago my blood test indicated my potassium levels at 4.0 which is on the low side of the ideal range NOT HIGH – the ideal range is 3.5 to 5.5. My potassium level is .5 away from being low in spite of the Diovan warning. Also my blood pressure runs high at about 160/95 in spite of all the drugs I’m taking to lower it. I started taking another BP drug which is working until my body starts to ignore it and my BP creeps up as it has with all the other BP drugs. In my opinion the knowledge base and research done by the drug companies appears to be lacking.
The final zinger is… after a couple of years of taking statins I have developed Chronic Inflammatory Demyelinating Polyneuropathy or CIDP. My body’s autoimmune system has broken down and my body is destroying the fatty myelin sheath with covers my nerves, much like stripping a wire of its insulation. This in turn causes my muscles to do what they want (shake and quiver) or the nerve and electrical pulse from my brain short circuits and causes me severe pain. The icing on the cake is I have 7 medicated stents implanted in my heart arteries. My neurologist wants me to start IVIG treatments. A second opinion neurologist, a druggist and others told me, “be careful, the IVIG will increase the blood volume and you could have a heart attack or stroke from IVIG”. Translated, IVIG will make my blood thick, I take Plavix to make it thin, heart & CAD patients do better with thin blood. I see my cardiologist the end of this month for his opinion. If anyone knows anything about stents and IVIG PLEASE tell me, my life may be at stake and you may help save it ! I’m not being melodramatic… I’m scared as heck and don’t know what to do ! Please ask your IVIG infusers if they have any IVIG patients who have medicated stents – THANKS IN ADVANCE.
Research in Europe (Denmark) and internet chatter is getting louder. I believe the drug companies may not know all the adverse side effects of drugs such as the statins and ace inhibitors they are marketing and selling (or maybe they do ?). Cardiologists say the benefits of taking statins is worth the risk. I wonder if they would continue that line of reasoning if they were lying on the floor screaming in agony from the pain and the poor quality of life that statins may be responsible for. Because of this, in my opinion and my experience – STATINS DO INDUCE CIDP AND GBS. Now there is chatter about cholesterol levels not causing heart attacks…
I believe this will be proven in the near future. AGAIN – This is only my opinion and my disclaimer for the drug maker’s lawyers:rolleyes: .
I have filed formal reports (on-line and easy) with the FDA and the MHRA. The MHRA is the European equivalent to the USA’s FDA. The MHRA shares their data publicly. This data, the Denmark study and numerous informal reports by statin users helped convince me of the correlation of statin induced CIDP/GBS contraction. I encourage anyone with similar experiences to report their experience to both agencies. Without your input and FDA action, many more people could be afflicted with these horrible diseases without knowing why and how they contracted them. These future patients would be making better informed decisions in whether or not they want to use statins. This disease (CIDP) is the direct cause of me being put out on permanent disability after being employed in R&D for 22+ years, some of that time was spent in drug manufacturing R&D. Now I stay home, eating chocolate bon bons, trying to ignore the pain, fatigue and way too many other symptoms all the while attempting to keep a sense of humor and face yet another speed bump of life.
March 4, 2012 at 3:25 am
GBS and related acquired peripheral neuropathies have been around a lot longer than statin drugs. Guillain, Barré and Strohl described GBS in 1916. Statins were developed in the 1970s.
Many people take statins. Some of those people are susceptible to GBS or CIDP and may develop the disorder. It is not helpful, in my opinion, to be looking for scapegoats. The way to recovery is through treatment, not blame, and that is where my attention is directed.
AnonymousJune 29, 2012 at 6:23 pm
Wow, GB. I came across your post, months after the fact, and I want to say that you sound a bit harsh. No one is looking to blame a scapegoat. Rather, we share information in order to make informed decisions about treatments. My GBS was ten years ago. I am very careful about what medications or injections I take. Yes, we move forward and aim for health. Knowledge is power, and I thank those who share their experiences so that I may learn from them.
June 30, 2012 at 6:57 pm
It’s GH, not GB. Call it “harsh” if you like, but On reviewing it, it seems like pretty mild commentary to me, and I stand by it.
The fact is that there were quite a few people here awhile back who were looking for scapegoats, and who were promoting not knowledge, but superstition — some of it harmful. There is less of this in recent months, which is a good thing.
Anecdotes can be interesting, but usually they contribute nothing to the understanding and treatment of diseases such as GBS and CIDP. Only science-based medical research can do that. But if you like anecdotes, here’s mine:
I started taking statins ca. 1990 for high cholesterol, and took them continuously, as prescribed. In 2010 I acquired CIDP. After a brief suspension of statins while I was hospitalized, I am now back on daily statins for cholesterol, as well as drugs for high blood pressure which I also had been taking for years before CIDP. There is no evidence to suggest that statins contributed in any way to my having acquired CIDP. There is evidence that they have controlled my cholesterol to safe levels, and there is plenty of scientific evidence documenting the risks associated with high cholesterol. Today, I am continuing to recover from a very severe case of CIDP, and my blood is normal, thanks to drugs I take for high cholesteral and blood pressure, along with eating a healthier diet.
I am not aware of any medical research study supporting a link between statins and either GBS or CIDP. If anyone knows of one, it would be helpful to post a link.
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