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Old 01-17-2014, 05:25 AM #11
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I think it is worth your asking your doctor for another family of
blood pressure control...

Lisinopril is unique in the ACE inhibitor family

1) it is not metabolized and is excreted as such in the urine.
For people with HAE...(angioedema) this can inflame the bladder

2) If you have lowered C-1 inhibitor levels, you can have serious side effects from this drug. Swelling of any body part, burning symptoms, dry cough, bladder irritation, shortness of breath, redness in the skin in various areas. (redness is less common than the other symptoms)

Of those symptoms only the cough or breathing issues, are typically understood by doctors. My doctor realized my problem because she had a CME (continuing education) lecture on this 2 yrs ago. But if doctors don't choose that topic when they do their CME for relicensure, they really don't know about HAE. Most of the research on it has been done in Europe and in the last 10 yrs.

A very young or newly licensed doctor may have had HAE in school or not depending on how up to date the curriculum is there.

Here is the first thread I made about my struggle with lisinopril:
http://neurotalk.psychcentral.com/sh...ght=lisinopril
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Last edited by mrsD; 01-17-2014 at 07:49 AM.
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ger715 (01-17-2014)

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Old 01-17-2014, 12:52 PM #12
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Mrs. D.,

When you say another family; not sure what would be a good replacement for Lisinopril.

Even with the Lisinopril, my blood pressure was still on the high side until I started taking the Spironlactone daily for the swelling in legs and feet. Wonder if there could be a connection? The Edema started about 5 yrs. ago shortly after having Cystecele surgery.

Am I correct in assuming I should reconsider continuing with the Simvastatin?

Thanks again,

Gerry
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Old 01-17-2014, 01:20 PM #13
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Lisinopril is an ACE inhibitor....all of them increase bradykinin in the body, and if you have impaired ability to metabolize this away, then all of them will cause problems for you.

The others in the family are metabolized by the liver...and excreted metabolized. Lisinopril is not, and leaves whole in the urine. Active then to increase bradykinin in the bladder.

Bradykinin is a biogenic amine, and causes vasodilation in tissues everywhere. In my case it is mostly my GI tract that reacted to this, but also my face, hands, feet, and tongue...sometimes my throat closed down, but not completely...so I made strange noises in my larynx. (a hoarse squealing sound--mostly at night).

Normal people have adequate enzyme C-1 inhibitor to remove bradykinin, but people with a genetic error cannot so it builds up and in some cases (20-30%) can kill you eventually. Most doctors will take you off ACE drugs if you get the cough. I didn't have the cough much, but I sure did get a devastating reaction finally which I wouldn't wish on anyone! It can sneak up on you, or happen early in therapy. It can happen anytime in fact.

I would try and see if the spironolactone is enough for now.
There is very little evidence that statins do anything positive for women.
Here is the link on those stats:
http://neurotalk.psychcentral.com/post1002533-6.html
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Old 01-20-2014, 11:04 AM #14
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Default statins

I can't take them, husband does, the doc put him on Provastin 80 mg, it stopped the leg cramps the Liptor caused. Then he stuck him on Whelcol 6 horse pills a day. His Tris are down, but not from the med, he lays off SWEETS and CARBS 2 weeks before his next doc visit, so it fools the test. Whelcol is one of those I can't take, gout symptoms on 1 pill a day, at the end of 5 days could barely walk from the hip and toe pain. Can I suggest a type 2 Diabetic diet, It has lowered my Tris in half from 300 to 130 no pills I have to take. Just watch high sugar fruits and carbs. Just don't over do the proteins, as they can cause muscle issues. I have FMS so I have to watch all meds and the amount of protein I consume.

I freeze the fish oil caps, and it lessons the nasty burps, etc. Instead of buying the more expensive Krill oil for my husband. It is not one of those things I can take, allergic to sea food.

Quote:
Originally Posted by Balanchine View Post
But rather than start yet another thread I figured I'd throw this query in since it's about statins.

Finally convinced my doc to let me try life off Lipitor to see if my PN would improve as a result. I've been on the stuff fairly continuously for more than 15 years and have had PN symptoms for maybe 2.

My question: if I'm going to notice any improvement, what do folks think is a reasonable ballpark for when I might expect to see it?

My thanks to all.
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Old 03-12-2014, 06:50 PM #15
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balanchine, I too took lipitor for over 10 years and have had SFN that started a little over 2 years ago. I stopped the statin last july with no relief of symptoms. i was on crestor the last year before stopping. Have you had any relief of symptoms? I was just newly diagnosed with SFN. the 1st 1 1/2 I had mild bilateral heel pain that Increased last july to burning pain in the ball of my foot. So frustrating! Any info you have would be helpful. thanks
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Old 03-25-2014, 11:03 AM #16
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Quote:
Originally Posted by debra lynn View Post
balanchine, I too took lipitor for over 10 years and have had SFN that started a little over 2 years ago. I stopped the statin last july with no relief of symptoms. i was on crestor the last year before stopping. Have you had any relief of symptoms? I was just newly diagnosed with SFN. the 1st 1 1/2 I had mild bilateral heel pain that Increased last july to burning pain in the ball of my foot. So frustrating! Any info you have would be helpful. thanks
Debra, so sorry to hear about your distress. I wish I had something constructive to tell you. I've been off Lipitor now for 2 months and feel no different. Mrs. D. mentioned that after the long period of medication it would take awhile for things to change so we'll just have to see. I hope you get some relief!
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