As promised, here are more ways to help minimize side effects of peripheral neuropathy (PN).
I ended yesterday’s post this way: “Alpha lipoic acid and gabapentin often don’t help because they are woefully under dosed.” While its true that some patients won’t benefit from one or both, more often than not, improper dosing is to blame.
Let’s examine gabapentin (Neurontin) first. Primarily an anti-epileptic drug, gabapentin is also used to treat nerve pain. That’s us! While there can be some crazy side effects, when compared to most of the drugs we take, gabapentin is relatively innocuous.
Doctors usually start patients out on low doses. Gab doesn’t make me sleepy, but it can. Other side effects tend to show up early, too. According to Drugs.com, the list reads like one of the TV drug commercials that leaves one wondering, “Why would anyone take that?” Check it out:
Get emergency medical help if you have any of these signs of an allergic reaction to gabapentin: hives; fever; swollen glands; painful sores in or around your eyes or mouth; difficulty breathing; swelling of your face, lips, tongue, or throat. Report any new or worsening symptoms to your doctor, such as: mood or behavior changes, anxiety, depression, or if you feel agitated, hostile, restless, hyperactive (mentally or physically), or have thoughts about suicide or hurting yourself.
Call your doctor at once if you have:
• increased seizures;
• fever, swollen glands, body aches, flu symptoms;
• skin rash, easy bruising or bleeding, severe tingling, numbness, pain, muscle weakness;
• upper stomach pain, loss of appetite, dark urine, jaundice (yellowing of the skin or eyes);
• chest pain, irregular heart rhythm, feeling short of breath;
• confusion, nausea and vomiting, swelling, rapid weight gain, urinating less than usual or not at all;
• new or worsening cough, fever, trouble breathing;
• rapid back and forth movement of your eyes; or
• severe skin reaction — fever, sore throat, swelling in your face or tongue, burning in your eyes, skin pain, followed by a red or purple skin rash that spreads (especially in the face or upper body) and causes blistering and peeling.
Holy crap! Gab doesn’t seem so innocuous now. It’s always agreed with me, so I’ve been fine. And it works; I’d say using it correctly reduces my PN symptoms as much as 50%.
So what is “correctly?” I have always taken the drug in 300 mg capsules. As I started to say, doctors start at low doses; maybe 600 mg a day. Then, if the side effects are minimal, he or she may increase the dose. Trouble is, most patients become inpatient. It can take weeks for gab to start helping. And 600 mg a day probably won’t do it.
Gabapentin doesn’t stay in your bloodstream very long. So while taking enough is important so is when you take it. Gab should be taken at the very least twice a day. I take 600 mg in the morning, again at lunch and then in the evening. Many patients take more. Now that my PN is getting worse, I’ll suggest to one or more of my doctors that I try more, too.
What about alpha lipoic acid? Good friend, nurse Beth Faiman, led a study of alpha lipoic acid (ALA) in some of her myeloma patients. An expert in the field, Beth shared how successful early results were. Unfortunately, the study had to be discontinued because of inconsistencies in the way ALA was administered.
Still, Beth shared how some patients PN symptoms nearly faded away; most all had a significant reduction. The key: patients were taking super large doses. If memory serves me correctly, the dose was as high as 8 gm a day. Not milligrams, grams, administered in powder form.
That’s a lot of ALA! While I’m not suggesting any of you go out and start downing ALA supplements like candy, it does make my point: most patients don’t take enough ALA to really make a difference.
This can all be complicated by the fact that some researchers feel ALA–or any amino acid supplement–should be avoided by myeloma patients. Apparently myeloma cells gobble up ALA powder in the lab like candy. And that’s the analogy; some feel sugar feeds cancer. The same can be said of amino acids.
The problem with both of these theories is what happens in the lab doesn’t always translate to how sugar, or ALA, is converted and used by our bodies. Beth addressed this directly, telling me that myeloma docs at Cleveland Clinic have never seen a negative correlation between patients that took ALA and those that didn’t.
Here is Cleveland Clinic’s positive evaluation of ALA from their website:
- Pain, numbness, pins-and-needles sensations, and burning associated with diabetic peripheral neuropathy can all improve with alpha-lipoic acid.
- Blood sugars and insulin sensitivity have also been shown to improve with alpha-lipoic acid therapy.
- Compared to current medical therapies that have a significant incidence of side effects, alpha-lipoic acid has few side effects and is generally very well tolerated.
- Alpha-lipoic acid may have other important benefits. Combined with acetyl L-carnitine, it has been shown to help memory retention in animals, but large scale human studies have not been conducted.
- Alpha-lipoic acid has an excellent safety profile and experts generally believe it is safe for use at recommended doses for up to 2 years.
- It can take up to 3-5 weeks to experience the benefits of this therapy.
- Although oral preparations have also been shown to be effective, the alpha-lipoic acid preparations used in the clinical trials we studied were delivered primarily by intravenous route. This is not practical for widespread use.
- Side effects, while rare, consist of gastrointestinal upset, dizziness and rashes.
- There aren’t a lot of cons to using this product.
* *ADVISORY* *
If you take diabetes medication, alpha-lipoic acid can lower your sugar levels too rapidly. Because of this, you will need to check with your doctor. He or she may want to decrease the doses of some or all of your diabetes medicines before you begin taking this supplement.
DOSAGE: The dosage range is between 600 and 1200 mg per day. Our suggestion is to begin taking alpha lipoic acid at 300 mg three times a day, and to work with your doctor on dose adjustment.
Like gabapentin, doctors there must feel it’s important to keep ALA in your bloodstream throughout the day. Again, note most patients don’t take 300 mg of ALA three times a day. They may take 600 mg in the morning and stop there. And I would think it would take at least 600 mg, three times a day to do much good. And why not more? Unlike gab, unless you develop diarrhea, there should be little concern about over dosing.
Again, please check with your doctor about this. Most won’t know much about it. But they can quickly check it out on their smartphone. My guess is most will give you the green light to try it, then escalate the dose.
This is one of the downsides with getting your doctors approval for using supplements like these. If they’re unsure about it, the tendency will be to keep the dosing low or to tell you “no.” I hate that. Doctors shouldn’t say no just because they’re unsure about interactions with our chemotherapy. I’ll let my readers decide whether to “go rogue” or not and pile on the ALA.
Dr. Berenson in SoCal is a big ALA proponent. Here’s what he had to say in an interview I did with him back in 2013:
Toward the end of the broadcast, one of the callers asked about ways to help minimize the effects of chemotherapy induced peripheral neuropathy (PN).
Dr. Berenson didn’t hesitate to suggest the caller use alpha lipoic acid (ALA). He felt ALA was the most effective supplement available for PN.
I used to take ALA. But I reluctantly stopped after our lifestyle columnist, Danny Parker, told me about a study where ALA had been found to promote the growth of myeloma cells in laboratory tests. I blogged about it last August. Over 1800 people have read it since:
However, based on Dr. Berenson’s strong recommendation, I’m reconsidering. After all, what happens in a test tube doesn’t always translate to our bodies. I’m starting to believe that taking ALA is the lesser of two evils.
Looking back it did seem to help. Better to incorporate ALA as a part of my daily routine than to stop taking Velcade while its still working, right? Dr. Berenson thinks so!
One more thing. There has been at least one study showing ALA can interfere with Velcade. So maybe to be safe, discontinue using it the day before–and one or two days after–getting your Velcade sub-q injection.
Moving on, here are several more suggestions I’ve gotten from patients over the years that might help:
Neuragen – The patient who wrote me about this gets it at Walgreen’s. The cost is around $30.00, but several magazines (AARP, Smithsonian, etc.) have $5.00 coupons. You can use it as often as four times a day, but this patient, named Bonnie, usually used it in the morning.
Medrol (methylprednisolone) – Medrol is a synthetic (man-made) corticosteroid that may help reduce inflammation of the nerve linings. Come to think about it, I have less PN symptoms on dex days.
Magnesium – Magnesium can be taken orally or rubbed on the skin of affected areas. Several brands of magnesium oil are available for topical use. A half dozen patients I know rave about magnesium oil. They massage the oil on their legs when they get up in the morning and before bed. I take a lot of magnesium; as much as 500 mg in the am and again at night. It has the added benefit of helping keep me regular, despite taking low doses of oxycodone daily. You’ll know if you’re taking too much; the diarrhea will stop as soon as you reduce the dose.
Heat Shock 90 Inhibitors – Dr. Ken Anderson, a well known multiple myeloma expert from Boston, suggests that if you add a heat shock 90 inhibitor (HSP90) you can decrease neuropathy and enhance the efficacy of Velcade. I don’t know much about this. Check with your myeloma specialist about it.
Lidoderm Patches – As anyone with peripheral neuropathy will tell you, PN gets worse at night. My new friend from Iowa, Deborah Haas, swears by using Lidoderm patches on the bottoms of her feet at bedtime. She says it really helps.
Stem cell transplants can also make things worse. I’ll address that–and expand this list of helpful suggestions–when I wrap things up in the next day or two.
Feel good and keep smiling! Pat