The Myeloma Beacon

Independent, up-to-date news and information for the multiple myeloma community.
Home page Deutsche Artikel Artículos Españoles

Forums

Discussion about multiple myeloma treatments, stem cell transplants, clinical trials, alternative medicines, supplements, and their benefits and side effects.

CoQ10 - opinions & experiences

by JimsKayak on Sat Feb 14, 2015 12:30 pm

Has anyone tried CoQ10 (coenzyme Q10) as a supplement?

After my 7 cycles of Revlimid, Velcade, and dex (RVD), I am coming to believe that my circulatory system has been damaged. I have had a cardiac stent implanted, been prescribed Plavix (clopidogrel) and Lipitor (atorvastatin), and now have consistently high blood pressure - usually 140-150 / 85-90.

I also have muscle wasting / weakness, which my oncologist says is from the Decadron (dexamethasone), but I also wonder if the Lipitor is contributing to the problem.

JimsKayak

Re: CoQ10 - opinions & experiences

by kdgreen on Sat Feb 14, 2015 10:06 pm

Jimskayak: Will you have a stem cell transplant? And what medication are you taking to lower your blood pressure?

I also had the RVD treatment before my SCT in 2013. (Everything went well and I'm in remission). Despite getting the Velcade injections in my abdomen, I developed neuropathy in my legs. My doctor told me it would eventually go away, but I started coenzyme Q10, plus alpha lipoic acid, supplements, along with gabapentin. The neuropathy really did subside. I'm still taking this regimen.

If you start the coenzyme Q10, pay attention to your body, and certainly let your cardiologist know. I've read of incidences of palpitations with coQ10, but many more positive outcomes – heart strengthening, I guess.

I'm also frustrated with the crazy muscle weakness. I've even exercised at my health club. I guess I have to be more patient, but my knees are so weak.

If your problem is the Lipitor, your large leg muscles would be affected, and your physician could look at your lab work. Maybe the dose could be reduced after a while, or you could try an alternate statin.

I hope you've added oat bran or flaxseed to your diet, to increase your fiber, and lower your cholesterol a little.

I wish you all the best.

kdgreen

Re: CoQ10 - opinions & experiences

by gskipper45 on Sun Feb 15, 2015 2:12 am

I took CoQ10 all during my treatment: before, during and after my two stem cell transplants, which were six months apart. My wife had done research and found mention of studies with CoQ10 and multiple myeloma. I went through it all with no infections and was only out of work a short time. We both take it now for our hearts.

By the way, statins take the enzyme out of our muscles, which causes the leg pains and cramping. I feel cardiologists are neglectful when they don't tell patients this. My wife's cardiologist told her to take it when he prescribed her statin drug.

Don't take just any CoQ10. Quinol is considered the gold standard. If you are near a Costco, they carry that brand.

gskipper45
Name: Gary Skipper
Who do you know with myeloma?: Self
When were you/they diagnosed?: 2005
Age at diagnosis: 60

Re: CoQ10 - opinions & experiences

by Eric Hofacket on Sun Feb 15, 2015 2:59 pm

My blood pressure has dropped since my myeloma treatment. My last reading was 98/54. I have no idea why this is or if is related to the treatments I received. Anybody else have any changes higher or lower?

Eric Hofacket
Name: Eric H
When were you/they diagnosed?: 01 April 2011
Age at diagnosis: 44

Re: CoQ10 - opinions & experiences

by Terrij on Sun Feb 15, 2015 4:08 pm

My daughter's blood pressure has also dropped since diagnosis. Sometimes they worry it's to low, but it doesn't seem to affect her.

Terrij

Re: CoQ10 - opinions & experiences

by JimsKayak on Tue Feb 17, 2015 7:58 am

I do regularly consume flaxseed meal, watermelon, red grapes, tomatoes, and olive oil. Before my stent procedure, and after 6 rounds of RVD, my cholesterol was 190. I had started 6 months earlier, with 260, and brought it down by changing my diet, and quitting smoking. My HDL was also high. Years ago, before there was Lipitor, any cardiologist would have been thrilled with my results, and told me to keep up the good work. Now, they keep going lower with what they want the cholesterol to be, as if to justify the prescription of Lipitor. It seemed like an "automatic" to prescribe it to anyone who has has a cardiovascular issue.

After the first 6 rounds of RVD, it seemed that the LCP numbers had reached a "plateau" stage - my oncologist had predicted an 80-90% response, and we are awaiting the results of the biopsy to confirm. I will see the oncologist at Yale, who would be doing the SCT, Monday.

In August 2014, I was hospitalized with a creatinine level of 3.5, received IV steroids for six days, and had a biopsy that confirmed 90% plasma cells, was diagnosed with myeloma, and commenced rounds of RVD, My BP in the hospital was sky-high, 200/100. Now I fear that I'm relapsing, only one month after stopping RVD. I don't know if that's likely, possible, or typical. I'm more concerned with WHY my BP is climbing than I am with making the number go down. I have a feeling that, if I go the the cardiologist, they will simply hand me a scrip for BP meds.

JimsKayak


Return to Treatments & Side Effects