statins: Is anyone on watch and wait and on... - CLL Support

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statins

robertsw profile image
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Is anyone on watch and wait and on statins? My cholesterol is high so I’ve been offered to go on Atrovastatin. I just would like to know if anyone else is on a statin.

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robertsw profile image
robertsw
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33 Replies
RobertCLL profile image
RobertCLL

I am on Atrovastatin and also Ibrutinib. So far its work with no issues.

Skyshark profile image
Skyshark

I'm in remission after V+O and started Atrovastatin about 5 weeks ago.

At January appointment, my haematologist suggested I start Statins, "can't start early enough". After an initial discussion with my GP that wasn't very enthusiastic, "you can if you want, come in anytime and ask", I played around with my "qrisk" numbers (Hazard 1.3) but couldn't find anything that rewound the clock or took away the former smoker.

qrisk.org/

nice.org.uk/guidance/ng238/...

There is a titration period while Cholesterol and Liver Function Tests are carried out to gauge effectiveness of dose and safety for liver. Mine are being done at same time as quarterly CLL blood tests, doctor just ticked 2 more boxes on the path bag.

england.nhs.uk/aac/wp-conte...

Commonly used drugs for CLL treatment are metabolised by CYP3A. Statins are also metabolised by CYP3A. Because of this they both have the same list of proscribed foods.

drugs.com/interactions-chec...

But when I look closer at this the Statins allow 1.2L of grapefruit juice (drugs.com says 1 US quart which is slightly less than a Litre) of grapefruit juice, even though the drug level in the blood can increase tenfold compared to the 2-3 times of cBTKi.

cks.nice.org.uk/topics/hype...

(The NICE.org.uk and NHS.UK links may not work outside the UK)

GMa27 profile image
GMa27

I have been on .5 mg of simvastain for 20+ years. No issues. Have had CLL 19 years- 12 of those were on W&W.

julius_the_cat profile image
julius_the_cat

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cajunjeff profile image
cajunjeff

I have been on rosuvastatin for about 6 yrs now. I have no side effects from it of which I am aware. My cholesterol numbers have been very good since starting a statin. My good cholesterol is high, my bad is low, and my total cholesterol is 148, which is good for me.

Edalv profile image
Edalv

Hello, I am still in W&W. I was diagnosed with CLL about 20 years ago. I started a low dosage of pravastatin about 15 months ago. My total cholesterol went from 185 to 142 and my LDL from 112 to 73. And the triglycerides from 113 to 86. I was surprised that such a small dose of pravastatin could have such a big impact.

Rando21 profile image
Rando21

Think there’s plenty of replies on this one. I was concerned but after research decided they were very safe and may actually help with other cancer risks. Also, try searching for other posts on Health Unlocked.

Link:

healthunlocked.com/cllsuppo...

robertsw profile image
robertsw

Thank you everyone, I’ll start them on Monday and hopefully all will be good.

ncosto profile image
ncosto

Robertsw - I've been on atorvastatin for about 20 years which has been controlling my cholesterol. I started BTKi treatment 6 months ago and with a long history of cardiac disease the oncologic-cardiologist has added ezetimibe to my daily drug protocol. No interactions with any of them.

RZ8983DV profile image
RZ8983DV

I was on statins about 10 years before being diagnosed with CLL. A few years ago my GP took me off statins I. Have been on W and W since diagnosis in 2008

Edalv profile image
Edalv in reply toRZ8983DV

Any reason why your GP took off statins…?

RZ8983DV profile image
RZ8983DV in reply toEdalv

It happened gradually and my cholesterol was no longer high. Last year a GP blood test showed high triglycerides I offered to go back n statin. It was the blood test after switching from lipitor to simvastatin in 2008 where the high WBC and lymphocytes which led to to the CLL diagnosis first appeared

Wimco profile image
Wimco

Yes. I on WW for 5 years and on statins

pompeym profile image
pompeym

After a heart issue while doing strenuous exercise in 2017 I had a stent fitted & was put on Atorvastatin - after a year it started to cause issues so was changed to Rosuvastatin. After a similar time frame that also started to cause similar issues so was changed to Pravastatin which I have been on ever since.

21Bedlam21 profile image
21Bedlam21

I’m on watch and wait and also on statins. No problems with them.

Elliot43 profile image
Elliot43

yes have been on Atorvastatin 40mgs a couple of years now

I’m on Zanubrutinib just over a year now. No probelms at all

RosettaClapp profile image
RosettaClapp

I've been on Atorvastatin for 35 years now.. No side effects and hopefully no strike to come.. My cholesterol isn't high but there's a very strong risk of hereditary brain bleeds in my family

AVGH profile image
AVGH

I have been on Atorvastatin for 10 years. Apart from being barred from eating grapefruit, I really haven't been affected. I have been on Acalabrutinib for CLL for 5 years or more, and there seems to be no interaction with this palliative treatment which nukes your immune system (I am led to believe).

Maybe I am just lucky (usually am) but I tolerate the Statin without any noticeable effect. My chloresterol levels are now fine.

God bless, and good health

Vince

AndyT profile image
AndyT

I’ve been on statins for over 20 years, since I was diagnosed with another form of blood cancer. I remain on them now that I’m on watch & wait for CLL too - currently 30mg Pravastatin per day.

I’ve never had any side effects that I can definitely attribute to statins.

Insanity4578 profile image
Insanity4578

I have been on statins for about 1.5 years. My Hemoglobin A1C (reflects blood glucose over time) did go up. We added metformin. Now my ALT (one of the liver enzymes) is up. Of course we don’t know for sure what is causing liver enzyme elevation since I have taken a litany of supplements. In addition, I have struggled with muscle pain and weakness that I am convinced is from my statin and seems dose related. I am not sure if a have a message here…just own slightly messy experience.

Unglorious profile image
Unglorious in reply toInsanity4578

I am not on statins now, and I hope I don't have to go back on them because when I was, I too experienced in my case, horrible muscle aches. I am on Acalabrutinib.

Barney2866 profile image
Barney2866

Been on watch and wait for 6 years and taken Atorvastatin for 5 years with no problems at all.

ErieSailor profile image
ErieSailor

I d been on 20 mg of Atorvastatin for probably 12 years. No problems that I know of. My total cholesterol has been under 200 for years now. I’m W&W for 3 years.

loveRicky profile image
loveRicky

I too am on Atorvastatin Calcium 20 mg. I have NOT had any issues while taking it.

ChristyAnne_UK profile image
ChristyAnne_UK

Yes. Been on W&W for 11 years. Been on Atorvastatin for years, too. Seems to be working. No side effects.

pete-paz profile image
pete-paz

i was diagnosed W&W about year and half ago but have had on and off struggles with cholesterol for years but i know the problem is my diet (ice cream is my best/worst friend) my GP has tried to get me on statins for years but i can control things by adjusting my diet. don't get me wrong take what ever medication you need to but some things can be controlled with lifestyle adjustments, specifically exercise and diet.

srdh50 profile image
srdh50

I started on Atorvostatin while on W&W two years ago. No issues. Started on Calquence about a year later. CLL numbers all good now.

Suzi_ profile image
Suzi_

my heart doctor suggested i go on statins, since my cholesterol is a little high. I refused to go in Statins. I am trying to correct my cholesterol levels naturally, i am trying to eat oat cereals, drink oat milk. Cinnamon also helps. U may want to explore some natural options. The choice is yours. All meds/ statins have side effects!

I hope this helps!

Good luck!

Edalv profile image
Edalv in reply toSuzi_

I also thought I could control my cholesterol with lifestyle changes. Then about 18 months ago my GP checked my Apo-B… my total cholesterol was in the 180’s range, but the Apo-B was very high. After educating myself about the LDL particle size and the effect issues it can cause, I decided I needed to start taking statins. In 18 months after I started taking a statin, my Apo-B is now in the normal range and so is my LDL. In conclusion, I currently take a very low dosage of pravastatin 10mg once a day, and hopefully prevented a potential heart problem…

Donnamccll profile image
Donnamccll

Been on w&w for 8+ years. I take the same stating with no issues. Some physicians have told me that statins provide anti-inflammatory benefits.

SurviveOr profile image
SurviveOr

W&W since 2011. Atorvastatin - 80MG/day - since Oct., 2018.

No probs ... so far ...

Insanity4578 profile image
Insanity4578

I commented earlier that I was on atorvastatin but had problems with muscle pain and weakness. I should add that I am a runner so that could have something to do with it. In addition, I recently added CoQ10 to my supplement list, which seemed to help.

Susanbarratt profile image
Susanbarratt

My husband had been on WW for nearly six years and on statins for most of that time. He has had no problems whatsoever. Three weeks had his cholesterol blood test and thankfully all is well.

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