Living with Myeloma

Neuropathy Sucks

My neuropathy sucks today. Feet all tingly.

neuropathy feet

That is all.

Well Not Really

I’ll write later, but the wife has some honey-dos for this find Sunday, and the summer is ending faster than I’d like, so I ain’t even putting up a fight.

Multiple Myeloma Insurance

GoodRx Works – A Review

GoodRx works to get a cheaper price on prescriptions.

OK, look. I’m a skeptic. I write a personal finance blog about financial independence, and one of the key things I do is analyze the fine print to find the gotchas.

Things are almost never what they seem, and there is always a catch somewhere. As they say, “If you can’t spot the fish at the table, it’s you.”

To avoid being the fish, let’s take a look at how GoodRx works.

How Does GoodRx Work?

GoodRx works by offering you a cheaper price for some medications via a GoodRx coupon, or other price. To use GoodRx, just give the pharmacist the numbers on your GoodRx coupon.

goodrx works for cheaper prices review
I blocked out the numbers just in case they are specific to me or private or something.

How To Use GoodRx Step by Step

Like almost everything these days, there is a GoodRx App.

The GoodRx app is the best way to use GoodRx, but you can also use the GoodRx website and print out a code, or email yourself the numbers, or whatever.

You need a prescription from a doctor to get medication with GoodRx. It doesn’t help with that step.

Check out my Wealthfront app review.

Once you have a prescription go to a pharmacy. Check the GoodRx price before you have your doctor send in the prescription. Have them send it to where you get the cheapest price. Or, if your doctor still has the ability, get a paper prescription, then you can figure out which pharmacy to use later.

For my purposes, I need pregabalin, or Lyrica. It turns out that it is restricted somehow, so I have to get an electronic, direct-to-the-pharmacy prescription, so I had to choose my GoodRx pharmacy first.

It’s cheapest at Costco, but Costco isn’t as easy to get to for me, plus you have to deal with Costco. So, for my purposes the nearby King Soopers is the way to go. I had my doc’s office send a prescription over there. I specifically asked them NOT to include my insurance information.

GoodRx and King Soopers

GoodRx mentions that some pharmacies may not work with GoodRx, or that some won’t realize that they have to work with GoodRx. There is a phone number that you can call when that happens.

At King Soopers (it’s the Kroger grocery store in Colorado), they not only accept GoodRx, but it is up on some of their own signage. When I went to the pharmacist to get my prescription, she set it down on the counter and said, “You don’t want to pay that.”

I said, “I have this GoodRx thing.”

She replied, “I was hoping you would say that.”

So, however GoodRx works, King Soopers is fine with it. The difference for me was $477 with no insurance coverage to $17.26.

To get that price, she had me read off the Member ID, Group Number, BIN number, and PCN number. She punched them into the computer and my new cheaper GoodRx price came up. She also said that now it would be in the computer and they would use GoodRx automatically for my next refill.

(Here is a curious note that I don’t have time to look into. According to the GoodRx app, it will give you a price of $15.97 at Costco. The interesting part is that is from the regular price of just $60. Everyone says Costco is the cheapest way to get prescriptions. I see more and more evidence that, that is true. If you don’t have insurance, check out Costco pharmacy prescriptions.)

GoodRx With Insurance

Let’s start at the beginning. I have cancer. I take tons of medications. For all of my medications, except pregabalin, I pay $0. That’s right, nothing. Every once and a while a pharmacy tech will comment, “Your prescriptions is free. You must have good insurance.”

The full pharmacists never say this. They have a better understanding of how health insurance works for prescriptions. They probably have an inkling that my medications are “free” because I’ve already paid out a lot, which is true. I hit my out of pocket maximum within a few days of the new insurance year.

I happened to be in the hospital this year, but it wouldn’t take long anyway. A single dose of most chemo medications costs thousands of dollars.

The only prescription I have a problem with so far is pregabalin, or Lyrica. It is not that my insurance does not cover pregabalin, it does. However, it only covers a certain amount, which is lower than what I need to maximize my pain relief. So, I need a way to pay for the rest of the pregabalin I need.

At my usual pharmacy, the extra, uncovered pregabalin would cost $117. That’s not terrible, but, I’m not looking to add another $1,400 per year to my medical expenses.

You can’t use GoodRx and insurance at the same time. Using GoodRx prescriptions is like paying cash. That means that the amount you pay for GoodRx medications will not count toward your deductible, or annual out of pocket maximum.

GoodRx works to get you a lower price without your insurance, so it may be worth pay a little more if that helps you hit your insurance company deductible, or other benefits.

Keep saving and investing with Acorns.

Does GoodRx Really Work?

Like so many Americans with high medical costs, I’m always on the look out for an alternative. I’ve seen plenty of GoodRx commercials and advertisements, so I thought I would look into how GoodRx works and if it would help me.

Is GoodRx a Scam?

My biggest concern was for a GoodRx scam. There are two ways to know something is not a scam. First, they didn’t ask me for any payment information.

There is a GoodRx upgrade called GoodRx Gold. It appears to be a subscription program that offers you cheaper GoodRx prices than the regular users get. People who need more prescriptions might find GoodRx Gold worth it, but for me just getting this one medication, GoodRx Gold is not worth it to me. I did not use it so I can’t do a GoodRx Gold review.

The second way to know something is not a scam is to figure out how it makes its money. That’s harder than it sounds. It isn’t obvious how GoodRx makes money.

I did a lot of research about GoodRx prices and how GoodRx makes money. First GoodRx offers insurance network or pharmacy benefit manager (PBM) prices to customers. In exchange, GoodRx owes the PBM a fee for using the network.

But, when you use GoodRx the pharmacy pays GoodRx a fee based on being part of the PBM.

GoodRx refunds part of that fee to the customer create an even cheaper price. This is kind of how Rakuten works to pay cash back. GoodRx works by passing on the part of the fee paid by the pharmacy to the PBM, and keeps whatever is left over.

It doesn’t sound like much, but like with a lot of things, if you turn a few bucks per customer into lots of customers, you make lots of money. That is why GoodRx is free and spends a ton of money on advertising.

According to GoodRx investor relations, GoodRx made over $100 per quarter with this business model, so I guess is no need for GoodRx scamming me 🙂

Where GoodRx Does Not Work

Nothing is perfect. I found good prices for GoodRx Adderall coupon, and also my previous neuropathy drug. The GoodRx gabapentin coupon price is also a discount if your insurance doesn’t/won’t cover it.

On the other hand the GoodRx Vyvanse coupon price is still in the $400 range in my area. I guess they don’t offer as much of a discount via the PBMs GoodRx works with.

GoodRx Review

I have only tried GoodRx with one drug, and only at one pharmacy, but so far, I am thrilled with how well GoodRx works. I would recommend GoodRx to anyone looking for a way to get cheaper prescriptions.

Neuropathy Review

You can also try alpha-lipoic acid for neuropathy. It is over the counter treatment for neuropathy that lots of folks swear by. So far, I don’t think it really seems to be helping me.

You can also try CBD. If you live in a state with medical marijuana, studies show that using a 200:1 or 100:1 type of CBD:THC product provides the best relief. You may need a medical marijuana card or equivalent in your state.

About the Author

Brian Nelson is an expert via first-hand knowledge, but is not a doctor. Brian was diagnosed with multiple myeloma in 2019. He has been living with it ever since. All information is form informational purposes only, and is not medical advice. Check with you own doctor about your specific situation for medical advice.

Living with Myeloma

Pregabalin for Neuropathy

When I got blasted with melphalan last year as part of my autologous stem cell transplant (SCT), it chewed up the nerves in my feet leaving me with some pretty substantial neuropathy.

What Is Neuropathy?

You can find the official medical definition of peripheral neuropathy here. For, those of us with multiple myeloma, neuropathy is a pain and numbness, usually in the fingers and feet. It is caused by the chemotherapy drugs.

Velcade side-effects caused neuropathy in my fingers until my hands hurt so bad I told them to take me off it, and figure something else out. (This is why I switched doctors. You shouldn’t have to beg for your own quality of life.) It left me my feet mostly alone.

My fingers are largely better now. There is no pain, but there is a numbness or missing nerve sensation that makes things like separating two book pages, or counting out cards, or money difficult. I have to really focus, and rely on my sight as well.

pregabalin neuropathy pain

Neuropathy in Feet with Myeloma

These days, nearly a year after my SCT, my real difficulty is the neuropathy in my feet. I started, like so many patients with gabapentin. It seemed to work for a while, but the dose went up and up, until it wasn’t really working.

My current doc considers quality of life actually suggested medical marijuana and/or CBD. I need to look into that. In the meantime, I wanted the ease of a prescription.

He set me up with pregabalin. I haven’t had any pregabalin side-effects, which is very nice.

Pregabalin for Neuropathy Pain

Here we go with the sucky US healthcare system again. It’s a shame that Republicans can’t fight over how to make healthcare better, instead of just tearing down anything Democrats made. You don’t like Obamacare? Fine. Make something else, but quit pretending the nonsensical system we have in place doesn’t need any fixing.

You see pregabalin costs a lot of money of money because there is no generic version yet. It is sold under the brand name of Lyrica.

Fortunately, for me, I have pretty great insurance. It will cover Lyrica with some sort of deductible, and some sort of co-pay. As a cancer patient, those numbers are meaningless to me. I blew past my out-of-pocket-maximum in just days. All that matters to me are coverage limits.

In this case, my insurance will only cover 300 mg per day. I really need 400 mg per day to make my feet manageable. (Don’t get me wrong. This doesn’t bring my feet anywhere near to normal, but I can ignore the nerve issues… unless I step on something.)

Doctor versus Insurance Company

One of the reasons you want to have a good doctor who really considers patient care the most important thing they do, is because in situations like this, the only hope I have is for my doctor to do some sort of battle of words with my insurance company to get them to cover the 400 mg.

If he loses, I’ll make do with 300 mg and maybe see if I can get a double prescription for nortriptyline, which I have a prescription for, but it’s for bedtime. Supposedly, a side-effect of nortriptyline is that it makes people very drowsy. It doesn’t necessarily have that effect on me, so rolling out of bed with that, and then, doing the 300 mg pregabalin might just do.

That, plus always wearing shoes…

Living with Myeloma

Alpha-Lipoic Acid and Neuropathy

Alpha-lipoic acid helps with neuropathy according to studies.

Chemotherapy-induced peripheral neuropathy (CIPN) is a frequent side effect in cancer patients. For multiple myeloma, Velcade is a primary cause of neuropathy for patients receiving the traditional triplet cocktail of Revlimid, Velcade, and dexamethasone. Neuropathy from stem cell transplants is also common in multiple myeloma patients. In this case, stemming from the powerful dose of melphalan, or other chemo used to kill off the immune system as part of ASCT.

Peripheral neuropathy manifests in many different ways. For me, the Velcade caused increasing pain in my fingertips, and then hands, before I basically insisted they stop giving it to me. The melphalan, on the other hand, has given me neuropathic pain in my feet since my transplant.

You may wish to talk with your doctor. There are prescriptions for neuropathy that are available from your oncologist.

Alpha-lipoic acid and neuropathy

A 1999 study suggested that alpha lipoic acid (ALA), which is a natural antioxidant, helped patients with diabetic neuropathy.

Diabetic neuropathy is different in some ways that CIPN. But, a different 1998 study suggested that did work for CIPN that was not from patients treated with Taxane. (Melphalan is not Taxane)

On the other hand, this 2020 study review says that there isn’t a lot of evidence for ALA being effective for CIPN. What it does say is that glutamine and omega-3 fatty acids were potentially effective treatments.

So, why am I trying ALA anyway?

Check out my SoFi review.

A lot of people in the multiple myeloma community swear by it, and not all CIPN is equal. Studies show that the neurotoxicity caused by oxaliplatin and cisplatin are not responsive to ALA. But, I never used any of those. Those are both for treating non-myeloma cancers.

Ideally, I would like to see more recent studies with more positive results, but they just aren’t out there. Fortunately, ALA is easy to find and not expensive. If it doesn’t work for me. I will just stop taking it. But, if it does, then maybe I won’t have to try so hard to get the right dose of pregabalin for myself.

I’ll keep you posted.

Living with Myeloma

Neuropathy Treatments for Myeloma

Multiple Myeloma Neuropathy Treatments

A lot of multiple myeloma patients will experience neuropathy. Peripheral neuropathy (peripheral just means at the extremities like your hands and feet) is caused by chemotherapy for myeloma patients.

Velcade is one of the main neuropathy culprits for myeloma patients. Another is the melphalan used for stem cell transplants in treading multiple myeloma.

If you are in pain, or the numbness has gotten out of hand, do not stay silent. There are neuropathy prescriptions your doctor can give you.

The catch is that not everyone has the same neuropathy, and not everyone responds the same to each medicine. That means that you might have to try a few different neuropathy medicines and doses before you find the right combination for you.

neuropathy prescriptions

Unfortunately, there is no cure for neuropathy, and the treatments can be iffy. That doesn’t mean that there is nothing that can be done.


Originally, I was prescribed Gabapentin. Keep your doctor up to date on how you are feeling. As it turns out, you can go up to pretty high doses of gabapentin, so long as your body will tolerate it. So, if you are still in pain, tell your doctor. If they don’t offer, specifically ask about increasing your dosage.

Your oncologist’s job is to keep you alive. You are responsible for the quality of that life.

Over time, I seem to have gotten all of the relief I could from gabapentin. It felt like the gabapentin stopped working for me, although I’m sure the reality is that I would have been much worse off without any. Either way, I wanted to get more improvement.

Pregabalin (Lyrica)

Pregabalin is the generic name for Lyrica. Unfortunately, Lyrica is still under patent. That means it is expensive. For this reason, your doctor will likely look to this as a treatment last, even though it may work better for many myeloma patients.

Your oncologist will have you step up your dosage over time for two reasons. One, is to ensure that you tolerate the medication. You don’t want pills making you worse. Myeloma already gives you plenty to worry about.

The second reason is to get an idea of what the minimum dose is that works for you. For me, the best dosage seems to be 400 mg per day.

Neuropathy Medication Costs

Gabapentin is generic, so your insurance should cover it. If not, it shouldn’t be too crazy.

Pregabalin is another story. Lyrica is still under patent. That means it is pricey. I have pretty good insurance and most of my medications are actually free because I hit my annual out-of-pocket-maximum already. That does not mean I get to go around the insurance policy limits though.

My insurance plan only covers 300 mg per day of pregabalin. My doc tried to get them to allow me to have 400 mg per day because that is what works form. This is successful more often than you might think, but in this case, apparently that is not what is says on the medication’s “label” and it also is not in some book, or prescribing manual, so they will only pay for 300 mg per day.

Unfortunately, that leaves me short 30, 100mg pills per month. At my usual CVS pharmacy that costs an extra $111. I’m not looking to get into another $1200 per year of medical expenses.

I have a plan to try and get around it. We’ll have to see how it works out.

GoodRx Myeloma and Cancer

I have seen ads for GoodRx and my research makes it seem as though GoodRx is legit. According to the website, I could get the extra pregabalin I need at another pharmacy with a GoodRx coupon for a very reasonable cost. So, theoretically, all I need a prescription with no insurance information and the GoodRx app coupon, and I could get it for like $20.

I am having my doc’s office crank out the extra prescription and I will keep you posted about how it works out.