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Re: Cough from Revlimid and/or dex?
I am on 5 mg Revlimid (2 years) maintenance for multiple myeloma and have a periodic cough that comes and goes. Didn't know what was causing it. Could be the Revlimid. Thanks for the info.
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FredT
Re: Cough from Revlimid and/or dex?
Here it is the second half of May and my cough is worse than ever. It had subsided for a while (but had never really gone away), and I thought I was finally making progress, but the cough is back turning me into a sick person. I have no fever, no itchy eyes, no discolored mucous. Until recently, it was a dry cough. Now I am coughing up a little clear mucous from deep within. Sometimes it sounds like I have whooping cough. I was off Revlimid and dexamethasone for a week when my blood counts were low, but the cough seemed to get worse during that off week. At my last testing last Thursday, the blood counts were all normal again, I was back on dex (40 mg) and Revlimid (25 mg), but the cough got worse.
In search of some help, I saw two otolaryngologists at Johns Hopkins who together thought that I may have "silent GERD". Previously, a gastroenterologist had told me that I did not have GERD. The Johns Hopkins physicians have put me back on omeprazole (Prilosec, Losec) and have added ranitidine (Zantac), which I am supposed to take for eight weeks to see if my condition improves. If yes, then it proves that I have silent GERD. Their procedures showed that there is nothing wrong with my sinuses or larynx or esophagus. So far, while taking these anti-acid medications, my condition has gotten considerably worse. These doctors do not seem to think that the dex or the Revlimid are the cause of my problem.
I recently spoke to my local oncologist about this terrible chronic cough. She, too, does not think that the myeloma drugs are the source of the problem. She suggested that I take Claritin (loratadine). I have been taking a daily Claritin tablet for more than a week now. Although advertised as not causing drowsiness, this is its major effect on me. It helps me to sleep through the night without coughing, for which I am grateful, but not always. Last night was a particularly bad night.
My next step is to see an asthma and allergy specialist. I have never had any allergies, but I am told that an allergy can develop at any time, especially with a compromised immune system.
I have written in great detail about this condition in hopes that someone who is experiencing something similar will offer me some sage advice. My myeloma specialist has seen hundreds and hundreds of myeloma patients who had been on Revlimid and dex regimens, but none of them have had a cough like mine.
In search of some help, I saw two otolaryngologists at Johns Hopkins who together thought that I may have "silent GERD". Previously, a gastroenterologist had told me that I did not have GERD. The Johns Hopkins physicians have put me back on omeprazole (Prilosec, Losec) and have added ranitidine (Zantac), which I am supposed to take for eight weeks to see if my condition improves. If yes, then it proves that I have silent GERD. Their procedures showed that there is nothing wrong with my sinuses or larynx or esophagus. So far, while taking these anti-acid medications, my condition has gotten considerably worse. These doctors do not seem to think that the dex or the Revlimid are the cause of my problem.
I recently spoke to my local oncologist about this terrible chronic cough. She, too, does not think that the myeloma drugs are the source of the problem. She suggested that I take Claritin (loratadine). I have been taking a daily Claritin tablet for more than a week now. Although advertised as not causing drowsiness, this is its major effect on me. It helps me to sleep through the night without coughing, for which I am grateful, but not always. Last night was a particularly bad night.
My next step is to see an asthma and allergy specialist. I have never had any allergies, but I am told that an allergy can develop at any time, especially with a compromised immune system.
I have written in great detail about this condition in hopes that someone who is experiencing something similar will offer me some sage advice. My myeloma specialist has seen hundreds and hundreds of myeloma patients who had been on Revlimid and dex regimens, but none of them have had a cough like mine.
Re: Cough from Revlimid and/or dex?
To all: I just want to update on my cough problem which started in mid-October.
I stopped taking Revlimid and dexamethasone at the end of June. My cough, thankfully, has now subsided to the point that my allergist says I need not come back. I feel like a healthy person again. I would say that I am about 96% better. My situation greatly improved soon after I ceased the Revlimid/dexamethasone treatments.
I still have a slight cough when I first wake up in the morning, but it soon goes away for most of the day. In the late evening, I sometimes have an itchy sensation in my throat with sporadic coughs, but this is nothing like what I was experiencing prior to the end of June. My allergist at that time had ruled out GERD, sinusitis, the typical allergies they test for such as dust, mites, trees, grasses, dogs, cats, etc. Having ruled everything else out, he concluded that my myeloma meds were most likely causing a post nasal drip situation which for me manifests only with the need to clear my throat.
Today he told me that because of my myeloma he does not want me on antihistamines or nasal steroids to treat the minor cough and itchy throat I still have. In his opinion, the fewer meds, the better. He thinks that what I am currently experiencing is probably from the Revlimid or dexamethasone that may still be in my system. (I fervently hope that the Velcade that I am now taking every other week will not cause me a similar problem in the future.)
I do not think that there are many posters who participate in this forum who have developed the kind of cough that I had for so many miserable months. Certainly, my myeloma specialists and local oncologist had never encountered anything like this before (nor did they seem to be greatly interested in helping me resolve the problem). To the very tiny minority out there who are having unexplained coughing episodes and wondering why, I hope this helps in some way.
I stopped taking Revlimid and dexamethasone at the end of June. My cough, thankfully, has now subsided to the point that my allergist says I need not come back. I feel like a healthy person again. I would say that I am about 96% better. My situation greatly improved soon after I ceased the Revlimid/dexamethasone treatments.
I still have a slight cough when I first wake up in the morning, but it soon goes away for most of the day. In the late evening, I sometimes have an itchy sensation in my throat with sporadic coughs, but this is nothing like what I was experiencing prior to the end of June. My allergist at that time had ruled out GERD, sinusitis, the typical allergies they test for such as dust, mites, trees, grasses, dogs, cats, etc. Having ruled everything else out, he concluded that my myeloma meds were most likely causing a post nasal drip situation which for me manifests only with the need to clear my throat.
Today he told me that because of my myeloma he does not want me on antihistamines or nasal steroids to treat the minor cough and itchy throat I still have. In his opinion, the fewer meds, the better. He thinks that what I am currently experiencing is probably from the Revlimid or dexamethasone that may still be in my system. (I fervently hope that the Velcade that I am now taking every other week will not cause me a similar problem in the future.)
I do not think that there are many posters who participate in this forum who have developed the kind of cough that I had for so many miserable months. Certainly, my myeloma specialists and local oncologist had never encountered anything like this before (nor did they seem to be greatly interested in helping me resolve the problem). To the very tiny minority out there who are having unexplained coughing episodes and wondering why, I hope this helps in some way.
Re: Cough from Revlimid and/or dex?
Thanks for this update, Mrozdav. I'm really glad to hear that your cough seems to be dying down. I hope it will go away completely very soon.
I don't think you often hear of Velcade causing coughing, but you never know. Like you said, Revlimid isn't known for that side effect either.
The prescribing information for Velcade does mention that there have been instances of the drug causing lung-related issues. Here's the relevant section of the label:
Obviously, I hope none of this, or any other significant side effects, happen while you're taking Velcade.
Thanks again!
I don't think you often hear of Velcade causing coughing, but you never know. Like you said, Revlimid isn't known for that side effect either.
The prescribing information for Velcade does mention that there have been instances of the drug causing lung-related issues. Here's the relevant section of the label:
Acute Respiratory Distress Syndrome (ARDS) and acute diffuse infiltrative pulmonary disease of unknown etiology such as pneumonitis, interstitial pneumonia, lung infiltration have occurred in patients receiving Velcade. Some of these events have been fatal.
In a clinical trial, the first two patients given high-dose cytarabine (2g/m2 per day) by continuous infusion with daunorubicin and Velcade for relapsed acute myelogenous leukemia died of ARDS early in the course of therapy.
There have been reports of pulmonary hypertension associated with Velcade administration in the absence of left heart failure or significant pulmonary disease.
In the event of new or worsening cardiopulmonary symptoms, consider interrupting Velcade until a prompt and comprehensive diagnostic evaluation is conducted.
Obviously, I hope none of this, or any other significant side effects, happen while you're taking Velcade.
Thanks again!
Re: Cough from Revlimid and/or dex?
TerryH, the curious thing about my strange cough was that no respiratory problems were ever detected. Possible pneumonia or bronchitis were the first things that came to my specialist's mind. Once x-rays and CT scan showed that there was nothing wrong with my lungs, she stopped being concerned.
All the drugs we take are worrisome. Thanks for calling my attention to possible Velcade problems. One always has to be vigilant.
All the drugs we take are worrisome. Thanks for calling my attention to possible Velcade problems. One always has to be vigilant.
Re: Cough from Revlimid and/or dex?
I am joining this conversation late, but just wanted to mention that my life was turned around when I began giving myself subcutaneous IgG infusions every week. Before that, I struggled with monthly sinus infections and coughs. I felt like I was living on antibiotics; as soon as I rid myself of the cough, another virus would set in. Once I began the IgG infusions (which take only 20 minutes a week, and I conveniently do them from home), the infections stopped. It has been such a gift to feel normal again! Anyway, perhaps this information will help someone!
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Dana - Name: Dana
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: 2009
- Age at diagnosis: 43
Re: Cough from Revlimid and/or dex?
I developed a cough while taking Revlimid and dex. I stopped the dex after 4 months, but continued the Revlimid without the dex for the next 16 months and the cough continued. Therefore, I think the culprit is Revlimid, not the dex. After a bone marrow test showed 30% activity, the oncologist replaced Revlimid with Pomalyst (4 mg for 21 days) and dex (20 mg each week). The tickling feeling and subsequent coughing has subsided, leading me to still believe that the cause was the Revlimid.
Re: Cough from Revlimid and/or dex?
Dexamethasone often gave me dry eyes, a dry throat, a raspy voice and a tickling dry cough for a few days. It always went away, and I do not dread dex at all. For all of you who described your coughs, I hope it is just a minor side effect like that.
Mrozdav, you mentioned having clear mucus. Has that gone away, too? I ask because what can seem to be dripping from the nose like in an allergy or infection might actually be coming up from a lung, and that could be a sign of something insidious.
Mrozdav, you mentioned having clear mucus. Has that gone away, too? I ask because what can seem to be dripping from the nose like in an allergy or infection might actually be coming up from a lung, and that could be a sign of something insidious.
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Mister Dana - Name: Mister Dana
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: December 2013
- Age at diagnosis: 66
Re: Cough from Revlimid and/or dex?
Hi Mrozdav,
From what you've described, it sounds like your cough was related to the Revlimid you were taking. Thanks for the updates along the way, as you were trying to work out what was going on.
Just in case it might help someone in the future who comes to this discussion, I thought I would mention that there is a class of blood pressure medications, known as ACE inhibitors, that often have coughing as a side effect. Drugs that have "pril" at the end of their generic names – like benazepril, captopril, enalapril, lisinopril, quinapril, and ramipril – are in the ACE inhibitor class of drugs.
From what you've described, it sounds like your cough was related to the Revlimid you were taking. Thanks for the updates along the way, as you were trying to work out what was going on.
Just in case it might help someone in the future who comes to this discussion, I thought I would mention that there is a class of blood pressure medications, known as ACE inhibitors, that often have coughing as a side effect. Drugs that have "pril" at the end of their generic names – like benazepril, captopril, enalapril, lisinopril, quinapril, and ramipril – are in the ACE inhibitor class of drugs.
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JimNY
Re: Cough from Revlimid and/or dex?
JimNY, Yes, that is right on about ACE inhibitors causing cough. I take a low dose of a blood pressure medication called losartan (Cozaar) which is not in the same class of BP meds and is generally not associated with causing cough (but, even so, there are some cases in the literature). I had been taking this medication for about three years without any problems before starting my myeloma treatment so I was convinced that losartan was not the cause. Interestingly enough, when I was at the Mayo Clinic last March, the myeloma specialist there focussed on the losartan and simply ignored the possibility that Revlimid could be causing my cough problem. I am still amazed that neither he nor my specialists at Hopkins had made the connection. I can only conclude that my severe reaction to Revlimid had to be an anomaly.
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