[kullybunnny1]

Re: Salty taste in mouth - Revlimid? / Allopurinol?

by kullybunnny1 on Thu Apr 23, 2015 8:06 pm

I remember reading this post months ago and didn't think too much about it. I then experienced this taste. I'm on a 10 mg Revlimid daily dosage and I'm not sure how it was brought about, but the salty taste occurred in the afternoon. It could be tied to a food, as I was experiencing GI issues and had asked if I was tolerating the Revlimid.

I adjusted my diet and included oatmeal for breakfast. This stabilized the GI issues and the salty taste went away.

Good luck and I hope this helped.

Kully

[meeshymeesh]

Re: Salty taste in mouth - Revlimid? / Allopurinol?

by meeshymeesh on Thu Apr 23, 2015 9:57 pm

I have been on Revlimid maintenance for about 12 months. The first 8 months on 10 mg, and the last 4 months on 15 mg.

I, too, had an indescribable foul taste in my mouth once I had gone from 10 to 15 mg. It went from indescribable to a kind of salty taste which later made many foods taste horrible to the point I could not eat them anymore. For example, most fruits, fresh vegetables, coffee, wine, curry, meat – the list goes on. In fact, for 3 weeks I drank water and ate plain crackers with cottage cheese.

It got so bothersome that I stopped my Revlimid for the last month. I am seeing my onc next month and will consider going back to 10 mg.

[fetalsono]

Re: Salty taste in mouth - Revlimid? / Allopurinol?

by fetalsono on Mon Sep 25, 2017 2:09 pm

I have been on Revlimid / dex cycles off and on for the past two years. I have posted previously about a side effect that is fairly debilitating, a chronic 'salty ' taste in my mouth. It seems I am one of only a few patients that have this problem as few have responded. I was off treatment for 4 months and started again last month. This side effect has come back even worse than before. I have tried hydration, switching other medications I am on to see if they were the culprit, all to no effect. It is so bad I am thinking of asking my physician to switch me to something else, possibly oral Velcade.

Thanks.

[coachhoke]

Re: Salty taste in mouth - Revlimid? / Allopurinol?

by coachhoke on Tue Sep 26, 2017 10:49 am

My treatment consisted of Velcade, Revlimid, and dexamethasone (VRd), with no transplant, followed by just Revlimid maintenance. I have been on and off 2.5 mg of Revlimid for four years. The taste problem has never gone away, on and off treatment.

[fetalsono]

Re: Salty taste in mouth - Revlimid? / Allopurinol?

by fetalsono on Tue Mar 06, 2018 9:50 pm

It's now three years that I have been on Revlimid and dexamethasone. The horrible salty / metallic taste that lasts most of the day and night is chronic. Nothing I have tried has helped. It is so bad that while it seems to be an effective medication to hold my myeloma in check, I am thinking of asking for something else as this is miserable.

[coachhoke]

Re: Salty taste in mouth - Revlimid? / Allopurinol?

by coachhoke on Wed Mar 07, 2018 11:59 am

I still have the bad taste even though I've taken many "drug holidays." It appears that many of my taste buds have been permanently damaged. I believe Revlimid is the cause of the problem and have discussed this with Celgene. It seems to only affect a few of us, and nobody I've been able to contact seems to be able to explain it.

I deal with it night and day with a tongue scraper, mouthwash, and by sucking on ACT dry mouth lozenges with xylitol. I'm still hoping for a better solution.

[fetalsono]

Re: Salty taste in mouth - Revlimid? / Allopurinol?

by fetalsono on Mon Mar 12, 2018 2:59 pm

You are one of the few people that have expressed the taste side effect of Revlimid that both of us are having. It is a nightmare. I am gargling, using ACT lozenges, etc, 3-4 x a day and in the middle of the night. I love eating, like most of us, and it has really put a damper on things I feel like eating. Sometimes, unfortunately drawn to sweets.

My doctor has decided to take me off the Revlimid for a few months, watch my numbers, and perhaps switch me to something else. I am in the smoldering myeloma category. Similar age. If you find a solution or if I do, let's update.

[fetalsono]

Re: Salty taste in mouth - Revlimid? / Allopurinol?

by fetalsono on Mon Apr 01, 2019 9:56 am

I have been on Revlimid for 4 years now and, as I've mentioned earlier in this thread, developed a constant abnormal almost salty taste. Even when I was off Revlimid for 4 months, it still was present. My doctor is thinking of switching me to Pomalyst (pomalidomide / Imnovid) to see if it helps. I am afraid that being on the Revlimid did permanent damage. Also, since Pomalyst is also a thalidomide derivative, it may have the same effects.

I am surprised this side effect is not mentioned more often. Is it really that unusual?

[fetalsono]

Re: Salty taste in mouth - Revlimid? / Allopurinol?

by fetalsono on Fri Jun 14, 2019 11:53 pm

I have been describing an abnormal, salty taste several times on this forum. I was on Revlimid and my doctor decided to try Pomalyst. After one month there was no change and unfortunately my bone marrow took a hit from the Pomalyst and I am now off of it. I am not sure if the damage was done initially and perhaps there is no solution. Very distressing

[Rssutherland]

Re: Salty taste in mouth - Revlimid? / Allopurinol?

by Rssutherland on Mon Jun 24, 2019 2:42 pm

I started with the salty taste thing last fall. I had the transplant in December. I am hopeful that the taste buds will come back soon. Getting there but not quite. Some foods simply taste like brine. Good luck.