Statins On Your List Of Medicines You Are Allergic To

[lars999]

Hello All!!

For some time now I have been putting statins on list of medications I am allergic to. That always gets a response -- clearly, there are lots of nurses and check in personal that are surprised that someone can be allergic to statins. Recently I had two rather different responses.

In one case, the attending nurse in an Emergency Room refused to list that I was allergic to statins. A few days later I called back and insisted that statins be added -- after all, medical personal should accurately informed. The person I called to request this correction to my medical record was audibly shook up by my request and justification.

In second case, I got first really professional response yet. Nurse asked for explanation and actually seemed to not be surprised by short version of my experience. She appeared to enter elements of my experience into my medical record.

I strongly urge that each of you add statin drugs to your list of medications you are allergic too. This is a simple way for each of us to counter the pervasive BS about how wonderful and harmless statins are.

Thanks,
Lars

[bradford]

Excellent advice! You don't need to explain your allergic symptons to your doctor or nurse.

[lars999]

Bradford,

While it is not really necessary to explain allergic symptoms to nurses, I do frequently get questions about symptoms. Gives me chance to provide a bit of information opposing typical "Raa Raa Statins Are Wonderful!!" attitude. Its effect has been especially dramatic when I explain/describe my statin adverse symptoms when Herr Doctor is present with his current underlings -- bet some of those younger generations go Google "statin side effects".

Gives me a bit of payback satisfaction each time.
Niklas

[SandyW]

I'm an RN and it really is necessary to record the symptoms of the reaction to a medicine. A patient reported an allergy to an antibiotic and when questioned reported it caused constipation. Needless to say if needed they could have taken the drug with attention to maintaining regularity.

Drugs are in families of like drugs and if you had a mild reaction to one they may try another in that group or if severe they will avoid all in that family. I am allergic to Levoquin but can take Cipro.

It really is important information to provide safe care!

Sandy

[lars999]

Thanks Sandy!

Over the many decades I have been visiting doctors, it is only rather recently that I recall nurses asking about my allergic symptoms. The list seemed the only thing of concern. My recent two instances, noted above, stood out clearly in their deviations from my experiences in past decade or so.

Fortunately, prior to Lipitor, I only had one drug on my allergy list, penicillin and all I knew about symptoms was what I remembered from what folks long since dead told me --- I was 6 at time of allergic response, during a bout with near double pneumonia. All I remember is that it seemed like I had been in bed "all my life", although I was "only" sick for about a year.

I will admit that after my Lipitor experience, on top of much worse medical experiences of some close friends, some no longer alive because of once highly touted medical treatments, I have become VERY wary and critical of most anything nurses and doctors say, especially if they want me to swallow something or to inject something into me. My response sometimes is pretty close to "NO!-- now, what was that again?"

Thanks again for pointing out the utility of allergic symptoms.
Niklas

[pops]

When I first got hit with statin myopathy, I called my doctor and spoke with a nurse. I told her that about 40% of the people I know who have taken statins had severe muscle pain as a side effect.

The nurse said that's the same rate she's seen.

Yet doctors still claim side effects on statins are rare. I wonder why there's such a discrepancy.

By the way, my friend who had a heart attack and was put on statins again - even though they'd caused pain in the past - finally, after three months on statins this time - developed muscle pain. He's now trying another statin. I have a feeling he'll have pain on that one too.

Maybe someday the drug companies will find something that works that doesn't destroy muscles. I hope so. Statins are poison for some people. I know they were for me.

[Grateful]

Just wanted to mention that when I discussed the reaction I had to statins and the on-going aftermath, my new doctor actually listed statins as an allergy to ensure that no doctor ever prescribe them to me again.

I did not request it, it is just what she thought best.

[lars999]

Grateful,

I is nice to hear that some medical personal are now believing us when we tell them about our nasty experiences with statins!! I am awaiting the day I find a doctor that knows how bad statins drugs are for a large fraction of users.

Niklas

[Grateful]

[quote="lars999"]Grateful,

I is nice to hear that some medical personal are now believing us when we tell them about our nasty experiences with statins!! I am awaiting the day I find a doctor that knows how bad statins drugs are for a large fraction of users.

Niklas[/quote]

I actually had two experiences like that through this nightmare.

As many have, I had been to several specialists along the way but my Neurologist's actual diagnosis was in fact, statin myopathy.

In spite of several doctors doubting and actually sending me back 6 months later, he maintained the diagnosis, educated me on it etc.

I told him of the gobs of Coq10 I was taking at the time, and he asked where I found out about that and said ... keep doing it.

He took a MRI to stave off the doctor sending me there to confirm MS.

I must admit I even thought I would find that there were bad results on the scan ... but he said my brain did not show any sign of MS etc.

There would be even one more visit to him after that, a year later at the urging of yet another doctor. Blood tests ran etc. and he sat me down and went through the list of muscle/nerve related disorders, explained why it was Statin related myopathy (even that long after).

I had heard he was very good in the field before going from people outside of that facility and was glad to have seen him.

He had a weird memory also ... everything I had said in each meeting I had with him, he recanted almost verbatim in his voice recorder in a very fast pace, his thoughts and responses to it included.

I knew exactly what he charted, in effect, before I left. It was just his standard approach to a visit.

I have come a very long way since then (almost three years later) and can now do many things I could not before. I am still improving to this day.

My recovery has been like a stock chart though, with an upward trend...Not s strait line upward but rather up and down with an overall upward direction.

At the peaks I can now walk a couple of miles and in the lows can still do more than I used to.

I think in some way this issue will have left its mark on me in some way, for life (I am 47 now) but I still hope the recovery continues.

[lars999]

WOW Grateful!

You found a really good doctor!! NO doctor I have ever visited matched, or, I suspect, could have matched, the performance you report. I have had the joy of working with such person several times, but never with a medical doctor.

My recover too has been up and down. I too am way more capable physically and mentally on my bad days than in the months before unilaterally quitting Lipitor. My best days still leave me wanting to do more, however, I am in early 70s. Now and then I hear comments from much younger persons, such as "Did you see that old man back there? What is he doing here?", usually high up in mountains somewhere, on foot or on skis. I do have to pace myself much more than before Lipitor, be sure to take CoQ10 (as Ubiquinol), vitamins C, B, D3, Acetyl-L-Carnnitine, Fish Oil, and often ibuprofin. I no longer push myself unless there is good reason -- meaning that I got myself into more than I suspected/intended.

Again, CONGRATS on finding a really good doctor!
Niklas

[catspjs]

[b]I was told by my doctor to list statins when asked if I had any allergies so I am grateful to her for her insight. I had a heart specialist/cholesteral so called specialist call me a liar right to my face when I told him I got perferal neurapathy from statins. (never went back to him, nor would I recommend him to anyone)..Its time everyone spoke up about any thing they find "wrong" in the medical field..the day we take doctors words as gospel are over...thank god![/b]

[lars999]

Hellooo!

Been absent for some years, really enjoying being off Lipitor. Over past decade plus there have been some bothersom decreases in my ability to crosscountry ski at altitudes of 9.000 to11.000 feet. Each decrease took me down another serious step, bringing me down to 1,5 hours per day in December 2015 -- BUMMER when it used to be 4+ hours. Then a few weeks ago I had a heartattack start. Fortunately, it was very obvious to me what was happening, so, immediate 911 call, EMTs stabilized my heart attack, trip to emergency room and on to Catheration Ops where 4 stents were placed in one heart artery. 10 years or so seems to be a common time frame for such plaque boils/lumps to develop to point of causing heart attacks by extensive, perhaps total blockage of cornary arteries.

Following day an ultrasound movie was made of my heart, with result that ejection fraction of left ventricle was found to be 65%, where 70% is considered a high value. Even better news was that only a few % of heart muscle was damaged -- THANKS!! to speedy EMTs!!!

At 1st immediately post operation meeting with resident cardiologist he asserted that "HE would not be prescribing any statins because I had listed ALL STATINS on my list of medicins I am allergic to. YEA!!

Prior to inplacment of stents, I had heard a "round" of shouts in operation room "NO STATIN!!" because I was allergic to ALL STATINS. It seemed like there were multiple echos, so many voices were repeating that!!! I almost laughed!! I would presume a big dose of statins is SOP -- bummer!!

Reviewing with resident cardiologist my history of step-wise decreases of my aerobic capabilities, based on years of cross country skiing at mountain alltidudes, he attributed at least the recent two decreases to be result of growing plaque boil/lump. The 1st step decrease was after 2-3 years on Lipitor. Second decrease was what terminated my attempts to recover in gym my lost aerobic capabilities. Third decrease was sometime in early 2015. These step-wise decreases were most certainly continuous over time and only appear stepwise because 1 & 3rd were measured during ski season and 2nd happened over about 1 month.

For my own use, and perhaps relevant to others here, are the bothersom observations of health changes preceeding my aborted heart attack.
1) Low energy, really easy to become fatigued during many months.
2) In week or so prior to heart attack I gained at least 8 lbs with no apparent reason. In first 2 weeks after aborted hearth attack I have lost those lbs, without any attempt to do so.

Immediate improvements post HA have been:
1) I stay warmer. Need one less layer of warm clothes inside home at 60-65F, ditto for bedclothes.
2) Distinctly improved balance while walking up or down stairs -- no more need to have 1 or 2 hands on railings.
3) Much decreased blood presssure: 100-115 over 68-75 at rest at home. After brisk 30 min walks, reading of around 100/68 are pretty common. These were my standard reading for decades before Lipitor.
4) No more getting really tired easily.

Beaware of doctors telling you --"Your are getting old, nothing more." These things happened to me between ages of 60 and 75. Doubt I am back to being 60 again, but I sure am not the "wimpy old geezer I was two weeks ago.

Regards,
Niklas