[blueblood]

Neuropathy progression, Revlimid, and gabapentin

by blueblood on Mon Oct 26, 2015 10:39 am

Hello,

This is my first post in the Forum. I obtained severe neuropathy during the course of my multiple myeloma treatment. I don't think I could have hoped for a better treatment outcome myeloma-wise. I did 2 MVDT-PACE inductions, melphalan tandem autologous stem cell transplant (ASCTs) and a VDT-PACE consolidation. Throughout my treatments, I was con­tinuously being treated with antibiotics for an unknown infection(s). I did have unexplainable rashes (were the rashes the result of my nerve cells dying? I was tested for everything).

I finally was hospitalized for 5 weeks after the kidneys shut down and was given the top shelf antibiotics. In the hospital my neuropathy got severe. If I cut my mashed potatoes with a fork, it felt like I was holding a steak knife backwards. Putting on and off the compression socks was painful. Opening a Gatorade bottle impossible, it felt like I was gripping a cheese grater. That was almost a year ago.

My neuropathy is much better today on 2 doses of 300 mg gabapentin. I have numbness from the shoulders down in various degrees. I only have occasional shooting pain in the feet (12 times per day) or if I step on things barefooted. I can't afford for my neuropathy to get worse.

I've recently started on Revlimid maintenance after almost a year break and have several questions.

1. What are signs are there that your neuropathy is getting permanently worse? (My hands might be tingling slightly more on Revlimid. Months ago I used to get the zingzings. I don't get the zingzings anymore. Zingzings are when several different parts of my arms and legs would buzz, one right after the other, as in a symphony. I don't know if the zingzings are gone because the nerve cells recovered - or went ahead and died. It seemed like the common link between all the body parts was my brain).
    
2. Are there studies on long-term gabapentin use? I would imagine neuropathy would get worse with time. However, I wonder if I might build up a tolerance to gabapentin and start experiencing worse neuropathy pain. Otherwise, why not take high doses of gabapentin? What could it hurt?
    
3. How does my body control body temperature if I can't feel skin temperature? Last winter was a bear. I was much more fragile and battling MRSA, but I was always freezing. I'm afraid this winter I won't be able to control core temperature properly. Today I am either comfortable (almost always) or miserable. I did get cold camping, and got hot eating in a restaurant. I bought a IR temperature gun so I can get a quantitative skin temperature.
    
4. Is there a correlation between neuropathy and chemo-brain? Nerve damage is nerve damage.
    
5. Has anybody had neuropathy problems from Revlimid? I take Revlimid 21/7, acyclorvir daily, vitamins, Ambien and oxycodone as needed (not often).

Thanks everybody. I'm sure this post isn't very clear - part chemo-brain/part engineer.

[Little Monkey]

Re: Neuropathy progression, Revlimid, and gabapentin

by Little Monkey on Mon Oct 26, 2015 6:06 pm

No, your post makes sense; I just don't have a clue of an answer.

[Cheryl G]

Re: Neuropathy progression, Revlimid, and gabapentin

by Cheryl G on Mon Oct 26, 2015 7:17 pm

Hi Blueblood,

Welcome to the forum...and sorry you have to be here!

I can't answer all of your questions, but I'll try to answer a few of them.

First, yes, Revlimid can cause peripheral neuropathy in some patients. Usually when people are taking a combination regimen like Velcade, Revlimid, and dex, any neuropathy gets blamed on Velcade. But you will find people who report getting neuropathy when taking just Revlimid, and there are data in the Revlimid prescribing information to support such reports.

Second, although I don't have any feedback for you on the effects of long-term gabapentin use, I can say that doctors are willing to up the dose of the drug if they feel it might help with the neuropathy. See, for example, this comment on the subject by Dr. Landau.

There also are other treatments for neuropathy, such as Lyrica and Cymbalta, and in cases of extreme neuropathy, some people have had infusions of IVIG which have helped, as men­tioned here.

There are a lot of discussions here in the forum about neuropathy, many of which describe experiences with different medications and alternative therapies. Here's a list of the dis­­cussions, which I got from this helpful posting, "Useful links to existing forum discussions", which includes links to forum discussions about different treatments and side effects.

I know that's a lot to digest, but I hope at least some of it will be helpful. Best of luck to you,
Cheryl

[Multibilly]

Re: Neuropathy progression, Revlimid, and gabapentin

by Multibilly on Mon Oct 26, 2015 9:47 pm

Hi Blueblood,

As usual, Cheryl provided some really good suggestions and links.

Are you being assertive and vocal with your doctor about your level of neuropathy? The reason I ask is because there have been a couple of stoic folks on this forum that did not communicate their degree of neuropathic discomfort to their doctor and later regretted it. Doctors can often adjust doses and/or mix up drugs to help alleviate neuropathy, but they first need to know what level of discomfort you are experiencing.

[JPC]

Re: Neuropathy progression, Revlimid, and gabapentin

by JPC on Mon Oct 26, 2015 10:29 pm

Hello, BB:

A neuropathy remedy that has been reported to help by some folks is cocoa butter, that is rubbed on the skin. Not everyone reports that this helps, but some people do. I am mentioning this because it's a low risk approach, and could not hurt. In your case, since it's progressed to a significant state, it might not help. It does seem to help people at the lower stages of PN. Also, if you try it, be prepared to apply it frequently and in great quantity. You need to apply a goodly quantity when it's flaring up. The traditional brand is Palmers, but there are a couple of other manufacturers. They make a cream, but the pure cocoa butter sort of looks like butter or margarine, and seems to be better.

In my wife's case, who had PN kicking in from Velcade, she reported that it was very effective. If the PN flared up when she was at home, she hit it with the cocoa butter immediately, and it subsided fairly quickly. She got back to work, and was teaching, so when the PN flared up while at work, she did not get relief until she was able to get home and apply the cocoa butter.

If you have not tried it already, its worth a go. Good luck.

[blueblood]

Re: Neuropathy progression, Revlimid, and gabapentin

by blueblood on Wed Oct 28, 2015 8:44 am

Thanks to all.

I'm still trying to be keenly aware of my neuropathy to see if it is indeed changing after a week of 15 mg Revlimid. I guess I should have taken notes of my condition weeks ago because I'm having a hard time quantifying and remembering.

First off, Little Monkey, I love the therapeutic relief I get just thinking about your name.

Unfortunately Multibilly's advice about staying on top of neuropathy when it stuck its little head up is water over the damn. I was aware of the neuropathy progression slowly at first, but then it crossed the line in record time while hospitalized. Note to others: Follow Multibilly's advice.

Cheryl, I found Dr. Landau's article useful. While hospitalized for 5 weeks with what started with kidney failure, there was mention of GVHD even though my ASCT was 8 weeks prior to the consolidation chemo round. Dr. Landau mentions autoimmune-related neuropathy affects your strength. Well, I lost all strength from day one when I was hospitalized. For four weeks, I didn't leave the room. I went from bed, to bedside commode, to chair – never understanding the rapid loss of body condition of a 55-year old man. I did have orthostatic hypotension as an explanation. The reason they thought I might have had GVHD was because they were loading me up with red blood and platelets and couldn't tell were they were going. I did pass a little blood but the GI consults were reluctant to do a colonoscopy in my C. diff condition.

I'll describe my neuropathy as being severe loss of feeling and no pain. Just an occasional shooting stinger here and there. So Norman Einstein here thinks if he cuts back his gabapentin his feeling must come back some. Well I've tried that experiment a couple times, and it never fails that my numbness doesn't improve. But lo and behold, I do start having pain from neuropathy. So I really do have neuropathy pain that is managed with gabapentin
(2x300 mg).

I did research Revlimid can cause neuropathy in about 3% of patients in my age group. I'm sure my odds are higher due to my present neuropathy from other sources and genetic pre­disposition. My 88-year old father has numbness in his feet and hands. Other than that he can run circles around me.

JPC, thanks for the cocoa butter suggestion. Last winter – between the dryness of the season. proximity to chemo rounds or from the antibiotics fighting MRSA – my skin was extremely thick, dry, and itchy. I had to use cocoa butter just to keep from digging a hole in my arms and legs and even that didn't always help.

I believe this is where I stand. After only one week on 15 mg Revlimid, my legs below the knees feel wrapped up in ace bandages, my hands might be slightly number with a little more tingling. I'll complete this cycle with blood work on days 14 and 28 and see how my white cells and platelets hold up. If I sense improvement of my neuropathy during the 7 day off cycle, I'll make an executive decision to extend the break another week and pursue options of lowing the Revlimid to 10 mg doses, or 5 mg.

Thanks again to all.

[Rneb]

Re: Neuropathy progression, Revlimid, and gabapentin

by Rneb on Fri Oct 30, 2015 1:46 pm

The only thing with lasting relief for me, has been low dose naltrexone. Gabapentin did nothing for me:

"My experience with naltrexone & bupropion (Contrave)" (forum disc. started Oct 19, 2015)

Good luck.