Advice needed about statins

[Hugatree737]

Hello again and thanks so much for the info and support. Had a PCP visit today and she wants to put me on something for high cholesterol. It runs in my family. I eat almost all no cholesterol foods but it continues to rise. Last Oct cbc showed cholesterol at 228, LDL 14O, HDL 71. My GFR is 50. Serum Creatinine 1.2 I don't know what to do. I read that statins are bad for CKD. Any help would be greatly appreciated!

[Hidden]

Under the correct circumstances, a few statins are viable. I was once on simvastatin, changed physicians, and the new doctor replaced the Simvastatin with Atorvastatin and cut the dosage in half. That was 2 years ago and both my LDL and HDL are within the normal range and my 2-year average of GFR is 48. But, that's me. If you have faith in your PCP and nephrologist and they are willing to work with you then they can watch your labs as they try to match the correct medication at the best dosage. Best of luck.

[Hugatree737 in reply to Hidden]

Thank-you do much for actual names of meds and your success. This takes away a lot of fear I'm having about yet another med I'll have to take.

[LorrieC in reply to Hugatree737]

I take atorvastatin as well. I was taking only 5 mg. and my numbers were great, but my internist insisted I take 20 mg. I compromised and I am taking 10 mg.

[LorrieC in reply to Hidden]

Mr. Kidney, do you mind me asking how many mg. of atorvastatin you are taking?

[Hidden in reply to LorrieC]

I take 40mg at bedtime. I was told if I wanted to take it earlier in the day the doctor would cut the dosage. I kept the 40 mg and have had no issues with it.

[LorrieC in reply to Hidden]

My husband also takes 40 mg. at bedtime, but he doesn't have ckd. As far as we know, for all his labs say over 60, but they don't give a number. Thanks.

[Hidden in reply to LorrieC]

with a GFR of over 60 that is still in the early stages of CKD. You can find out more about the stages of CKD by checking out the attachment I've included.

davita.com/education/kidney...

[LorrieC in reply to Hidden]

Thanks for the link. I'm sure my husband is at Stage 2 at 74 years old. I wish Cleveland Clinic would provide the exact number, but the don't. Most probably so patients don't worry. No one even told me I had ckd until I saw it listed on My Chart.

[Hidden in reply to LorrieC]

Just so you know you have the right to a hard copy of your test/diagnostic results. They cannot hold them from you. Go to the medical records office and ask for a hard copy of each test for the past year.

[Bet117 NKF Ambassador]

Hugatree,

I would speak openly and candidly with both your nephrologist and PCP as to what the best options are for you based on your overall health and present medications.

Drugs.com and a possible conversation with your pharmacist may also be helpful.

Diet is a critical consideration as well see what other tweaks you can make to help.

What may be best for one patient, may not work as well for another.

Despite being an MN patient, whose symptoms are protein spilling, I was put a low dose of Crestor to eliminate slightly elevated cholesterol by my then, endocrinologist in 2017.

I credit my pharmacist for pointing out to me that although this is the newest and most powerful drug, it does promote protein spilling.

I was then changed to a low dose of Atorvastatin, which is widely prescribed after my biopsy in April of the same year.

It initiated violent back pains and gastro distress which went on for 8 months until this physician allowed me to come off the drug.

All of my symptoms were clearly listed on Drugs.com which my endocrinologist dismissed as "rubbish". My then nephrologist was in favor of monitoring but did not care about that area.

A month later, my PCP, who is amazing, discovered muscular swelling and after reading Drugs.com and her research deemed me allergic.

She has had me on 2,000mg of plant sterols and 2,400mg of Lecithin in addition to cooking with more garlic for a number of months now. My new nephrologist was on board with giving this a try.

My LDL went from 131 to 125 in 3 months. 125 is mid normal with 100 as low end.

If we get into a fix, Zetia or a Cholesterol Binder has been discussed between her, my nephrologist and myself.

So I can't stress enough to speak to your team and explore a plan.

Please let us know what is decided and how you are doing. I certainly know the frustration and my cholesterol wasn't awful.

It will all work out; I promise!

Keep the faith!

B..

[Hugatree737 in reply to Bet117]

Wow. So much helpful information. Thank-you! What is protein spilling? You seem to have a wonderful team. I hope my pcp and nephrologist will be willing to work together. Drugs.com helps me a lot, but sometimes my docs are resistant when I bring up anything contrary to what they prescribe. It's all so much work and constant vigilance!!

[Bet117 NKF Ambassador in reply to Hugatree737]

I am so glad that my words could be of some support and help.

Ah, where to begin. Protein spilling is also known as proteinuria, meaning that protein is excreted into the urine rather then kept in the body. Some diabetics and CKD patients do spill protein, but in my case it is due to my Membraneous Nephropathy, which is an autoimmune kidney disorder.

My thoughts are that when you see both physicians ask that any any labs drawn by either are faxed to the other if both doctors are not in the same network and have access to the results on line. Also that they consult with each other.

Have a telephone number, fax or email, if there is one, available when you attend the appointments.

My nephrologist and PCP are in two different hospitals/ networks but are agreeable to consult with each other regarding my case if need be.

As far as doctors being resistant to discussion and annoyed when you question their decision; not uncommon among certain personalities.

I always check to see if even an anti-biotic conflicts with any of my medications before taking them, this even includes the time of day that you take them.

Bear in mind that you are paying your doctors for a service and therefore have the right to an explanation, discussion, negotiation and refusal of any medication.

Unfortunately, it has come to the point that informed patients are best and must advocate for yourself.

I always print out a copy of my labs prior to an appointment and check off areas that I have questions about to save time.

I also bring a notebook and j jot down my vitals as well as what we discussed during that appointment incase I would like to refer back and prior to my next appointment.

I hope that this was also helpful to you.

You are on the right track..hang in there!

Please let me know your outcome!

B.

[Hidden in reply to Hugatree737]

Always remember that everyone of us is different and medications affect each of us in different ways. You can bring up a medication to your physician(s) and try them but make sure you follow the directions carefully. I had a trial dosage of Lisinopril back in 2015 and it shot my blood pressure so high that I had to go to the ER and spend 7 hours of my life that I can't get back. Off with the Lisinpril and on to Amlodipine and now, three and a half years later I'm doing better.

Others here will tell you different stories with either success or failures. It doesn't mean the medication is right or wrong for everyone. That person had either a good, or a bad response. Listen to your doctors and get their input but always, you have the final say. Remember that you have a Care Team and you should use them. If my cardiologist recommends one medication, I always run it past my PCP and nephrologist before I fill it. I've had one of the three disagree with the suggestion and I go back to the prescribing physician and usually they'll change the dose or lower the length of time to stay on the med and then it's okay. If they still disagree, then I decide and go from there. You can't do that if you aren't proactive and always doing your research.

[treesarecoo]

Hi there, It always drives me crazy when doctors immediately prescribe something just because a number is a little off without looking at what those drugs can actually do to you. For example, some arthritis drugs can cause lymphoma. You're basically exchanging one disease for another. Total cholesterol is meaningless. I did a youtube video about this if you're interested. What's important is the ratio between all the numbers. I don't know your triglycerides, so I can't give you the ratio between your triglycerides and HDL (which really shows your risk for heart disease), but I can give you the total cholesterol and HDL ratio which is 3.2. Ideally this number should be below 5, so you're good there. Your numbers look very similar to mine and I refuse to take a statin. I'm certainly not telling you what to do, but there are dozens of studies proving total cholesterol is meaningless. You NEED to know all your numbers and the ratios between them. Your HDL is awesome. You should get your CRP tested too, as this shows if there's inflammation in your body. I am determined to not take any medication unless I'm on death's door. Drugs may help one symptom, but you're sure to just get another along with a few others. That's not worth it in my opinion. Just eat as much produce as you can and stay away from heated polyunsaturated oils. I tried to put a link in here for my video, but it didn't work, so here's my website: nicolesnaturals.blog/

You can just scroll down and click on the youtube icon and look for my video entitled "Know Your Numbers: Is Total Cholesterol Meaningless?"

[Hugatree737 in reply to treesarecoo]

Thank-you so much. What is CRP?

[Hidden in reply to Hugatree737]

C-Reactive Protein. It's made in the liver. To help you better understand the lab terms go to this website for help in understanding lab tests/results. labtestsonline.org

[WYOAnne NKF Ambassador]

I am 19+ years post transplant. I have been taking Atorvastatin 20 mg tab both before my transplant and since. I too have high cholesterol and it runs in my family also. For me this med has done the trick and my cholesterol is normal. Please know that this is me. Everyone is unique and what works for me might not be what you should be taking . You should also be checking with your nephrologist. I don't take anything without first checking with my nephrologist, even if prescribed my PCP.