In the last month on the day I take dexamethasone at 40 mg and the recently reduced dose of 20 mg, I am experiencing some fairly strong tingling and mild numbness in the back of my head, neck, upper back area, shoulders, front of my chest and upper arms. It is not painful and actually feels pleasant, but occurs now reliably when I take the dexamethasone. It did not happen when I first started the dexamethasone 4 months ago. It goes away by the following day after I take the dexamethasone.
Anybody else ever experience this? I am fairly certain it is not neuropathy. I already have that in the usual places in my legs and arms and that stays constant through the week.
I see on various web sites that tingling and numbness is an uncommon sided effect from dexamethasone, but I did not see anything on where on the body it typically may occur or why.
I mentioned this side effect to my endocrinologist last week at my first appointment with her to see what can be done to treat the side effects I am experiencing with the dexamethasone. She took an inquisitive interest in the tingling and numbness but seemed a bit surprised by it, as if it was something she had not encountered in her patients before, and she has had other patients on high dose dexamethasone for cancer and other reasons. I will be following up with her to go over my lab results.
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Re: Tingling / numbness in upper body after dexamethasone
Hi Eric,
Please let me know, as I am getting the same. I am on my 4th chemo 'starter pack,' being cyclophosphamide, dex and Velcade. I am due for stem cell harvest just after Christmas and stem cell transplantation after that. I will be doing the harvest and transplant in Brisbane. I live an hour away on the Gold Coast and was never even given the option of outpatient.
I am also getting sore skin, like a mild all over bruising? Any clues?
(P.S.: I am on massive dex (20 mg 4 times a week)).
Sad for you having these symptoms, but I sort of feel better not being the only one.
Cheers,
Sharon
Please let me know, as I am getting the same. I am on my 4th chemo 'starter pack,' being cyclophosphamide, dex and Velcade. I am due for stem cell harvest just after Christmas and stem cell transplantation after that. I will be doing the harvest and transplant in Brisbane. I live an hour away on the Gold Coast and was never even given the option of outpatient.
I am also getting sore skin, like a mild all over bruising? Any clues?
(P.S.: I am on massive dex (20 mg 4 times a week)).
Sad for you having these symptoms, but I sort of feel better not being the only one.
Cheers,
Sharon
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Sharon01 - Name: Sharon
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: September 2014
- Age at diagnosis: 48
Re: Tingling / numbness in upper body after dexamethasone
Hey Eric,
Very interesting. I never experienced the kind of tingling and numbness across such a wide portion of my body. Just the usual fingers and toes. And it seemed to be tied to Velcade more than dex. I'm just wondering - are you on any other agent(s) besides the dex?
Once again, your question reminds me that we're all individual little microbiology experiments as we go through this. Good luck!
Very interesting. I never experienced the kind of tingling and numbness across such a wide portion of my body. Just the usual fingers and toes. And it seemed to be tied to Velcade more than dex. I'm just wondering - are you on any other agent(s) besides the dex?
Once again, your question reminds me that we're all individual little microbiology experiments as we go through this. Good luck!
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mikeb - Name: mikeb
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 2009 (MGUS at that time)
- Age at diagnosis: 55
Re: Tingling / numbness in upper body after dexamethasone
Every time I take dexamethasone, the day after I take it my skin is flushed and feels warm, mostly on my face and chest. It goes away the next day. Could it be a somewhat of a similar reaction?
I googled dex side effects and it did say that "numbness and tingling in the arms and legs" is a possible side effect.
http://www.drugs.com/sfx/dexamethasone-side-effects.html
I googled dex side effects and it did say that "numbness and tingling in the arms and legs" is a possible side effect.
http://www.drugs.com/sfx/dexamethasone-side-effects.html
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DallasGG - Name: Kent
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: 6/20/2013
- Age at diagnosis: 56
Re: Tingling / numbness in upper body after dexamethasone
I am not on any other drugs, only Revlimid and dexamethasone. I have lot of experience with neuropathy from Velcade and Revlimid as well. Neuropathy has never left me since I started treatment with Velcade in 2011. It has subsided and come back as I have been on and off these drugs.
This is different from the neuropathy I have experienced in many ways. For one, it is not in the extremities, but across the upper body, not extending to my hands or fingers, which do have weak neuropathy even now.
It happens only on the Monday I take my dexamethasone in the morning, starting a few hours after I take it, and usually lasting the rest of the day. Strong tingling and mild numbness, including on my face, but no painful pins or needles or burning hot foot sensations. It actually feels pleasant. No rash or anything like that.
By the next day, I wake up and it is completely gone. It only happens when I take the dexamethasone and it has only been happening the last couple of weeks out of the last 4 months since I started back on dexamethasone.
Something else that was strange on my dexamethasone day yesterday was that I did not experience any of the usual hyperactivity that I normal experience on my dexamethasone day. If anything, I was tired most of the day and was in a bit of a brain fog, not alert. This was my third week on 20 mg of dexamethasone (instead of 40 mg). This is the first time I was not hyperactive on my dexamethasone in the last 4 months or when I was taking it in 2011.
Today I feel completely normal.
This is different from the neuropathy I have experienced in many ways. For one, it is not in the extremities, but across the upper body, not extending to my hands or fingers, which do have weak neuropathy even now.
It happens only on the Monday I take my dexamethasone in the morning, starting a few hours after I take it, and usually lasting the rest of the day. Strong tingling and mild numbness, including on my face, but no painful pins or needles or burning hot foot sensations. It actually feels pleasant. No rash or anything like that.
By the next day, I wake up and it is completely gone. It only happens when I take the dexamethasone and it has only been happening the last couple of weeks out of the last 4 months since I started back on dexamethasone.
Something else that was strange on my dexamethasone day yesterday was that I did not experience any of the usual hyperactivity that I normal experience on my dexamethasone day. If anything, I was tired most of the day and was in a bit of a brain fog, not alert. This was my third week on 20 mg of dexamethasone (instead of 40 mg). This is the first time I was not hyperactive on my dexamethasone in the last 4 months or when I was taking it in 2011.
Today I feel completely normal.
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Eric Hofacket - Name: Eric H
- When were you/they diagnosed?: 01 April 2011
- Age at diagnosis: 44
Re: Tingling / numbness in upper body after dexamethasone
Eric,
I just wanted to say that my experience with Revlimid and now Velcade with 40 mg of dex once per week had different effects as far as being hyper after taking the dex.
Even though I have always taken the dex on Friday with Revlimid, I was hyper 8 hours later and it came on right away. With Velcade, it seems to start slowly, like I didn't take anything, and just goes that way all day; feeling a little energy, but never feeling super hyper.
Now, since I just started Zometa, I have had some bone pain after the treatments in my lower legs, ankles, and the top of my feet (mostly from the knees down) after taking the dex. I have noticed something like you mentioned with the tingling, but then the aches and bone pain go away after taking the dex. It's crazy how these drugs react differently for everyone.
I am glad that the dex helped with my bone pain, or did it? Like you said, it actually felt soothing or pleasant where I had the bone pain. I have a visit with my local oncologist on Monday, then I have to travel 200 miles (320 km) to see my myeloma specialist on Wednesday. I will ask her about the symptoms.
Castaway
I just wanted to say that my experience with Revlimid and now Velcade with 40 mg of dex once per week had different effects as far as being hyper after taking the dex.
Even though I have always taken the dex on Friday with Revlimid, I was hyper 8 hours later and it came on right away. With Velcade, it seems to start slowly, like I didn't take anything, and just goes that way all day; feeling a little energy, but never feeling super hyper.
Now, since I just started Zometa, I have had some bone pain after the treatments in my lower legs, ankles, and the top of my feet (mostly from the knees down) after taking the dex. I have noticed something like you mentioned with the tingling, but then the aches and bone pain go away after taking the dex. It's crazy how these drugs react differently for everyone.
I am glad that the dex helped with my bone pain, or did it? Like you said, it actually felt soothing or pleasant where I had the bone pain. I have a visit with my local oncologist on Monday, then I have to travel 200 miles (320 km) to see my myeloma specialist on Wednesday. I will ask her about the symptoms.
Castaway
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Castaway - Name: George
- Who do you know with myeloma?: just myself
- When were you/they diagnosed?: 1/24/14
- Age at diagnosis: 62
Re: Tingling / numbness in upper body after dexamethasone
Hi Eric,
I am not sure what your symptoms represent, but I can tell you that many of my patients feel warm over their body after they take dexamethasone. The symptoms go away after 1-2 days. Sometimes, patients have significant sweating and perspiration as well.
One if the resources that I use (UpToDate) as a reference to look up drug side effects lists neuritis (inflammed nerves) and neuropathy (nerve damage) as potential side effects of dexamethasone. I do not think your symptoms reflect either neuritis or neuropathy, however, because they are so short in duration. The fact that your symptoms resolve quickly is very comforting and leads me to believe that, whatever they represent, they are not serious. Patients may experience side effects in different ways, so perhaps this is how you sense and describe the "warm" feeling that many patients do have with large doses of dexamethasone.
I hope your holidays are quiet and pleasant.
I am not sure what your symptoms represent, but I can tell you that many of my patients feel warm over their body after they take dexamethasone. The symptoms go away after 1-2 days. Sometimes, patients have significant sweating and perspiration as well.
One if the resources that I use (UpToDate) as a reference to look up drug side effects lists neuritis (inflammed nerves) and neuropathy (nerve damage) as potential side effects of dexamethasone. I do not think your symptoms reflect either neuritis or neuropathy, however, because they are so short in duration. The fact that your symptoms resolve quickly is very comforting and leads me to believe that, whatever they represent, they are not serious. Patients may experience side effects in different ways, so perhaps this is how you sense and describe the "warm" feeling that many patients do have with large doses of dexamethasone.
I hope your holidays are quiet and pleasant.
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Dr. Edward Libby - Name: Edward Libby, M.D.
Beacon Medical Advisor
Re: Tingling / numbness in upper body after dexamethasone
Dr. Libby,
Thanks for your reply. It means a lot to me to hear from someone who has had a great deal of experience with treating myeloma and the side effects of treatment. I read everything the Beacon Medical Advisors post in the forums.
I am being treated for relapsed myeloma based on rising light chains earlier this year, and it has gone well. I have been tapering off dexamethasone, going from 40 mg for 4 months to 20 mg for a month to dropping one 4 mg pill a week till I take none. We are monitoring blood work to see if my light chains remain stable and in the normal range while on 25 mg Revlimid once a week. I was starting to develop orthostatic blood pressure again, which may have been related to the dexamethasone. My standing blood pressure was 82 / 54 and I felt something need to be done or I was going to end up in the hospital again like I did three years ago. I am also seeing an endocrinologist who is running a lot of labs to try and determine what is going on and how the dexamethasone may or may not be affecting me.
Looking at the list of dexamethasone side effects, after five months on the drug it seemed I had experienced over half the side effects at one time or the other. I never heard of anybody having the numbness and tingling I described and it seems to be unique to me. It is definitely numbness and tingling, much like what I have experienced with neuropathy, and fairly strong, not just a warm feeling. It's the kind of feeling you get in the hands get when using a vibrating sander for a long period of time.
My endocrinologist also has not had anybody experience from dexamethasone what I have described . It does happen reliably when I take the drug now, but it did not start out that way. It did not happen the first few months, but when it starting occurring, it was every Monday for several months up until now. I had it last week on Monday when I took 12 mg. Today I took 8 mg and so far it has not happened, so maybe at that dose level and below I will stop experiencing it.
I am not too worried about it now. I just chalk it up to one of those strange things that can happen when 4 months of dexamethasone throws the endocrine system out of balance. I realize I will likely have to go back on dexamethasone at some point in the future, but I am hoping a break from the drug can reset my endocrine system and balance it for a while and help me tolerate the drug again when I need to restart it.
Thanks for your reply. It means a lot to me to hear from someone who has had a great deal of experience with treating myeloma and the side effects of treatment. I read everything the Beacon Medical Advisors post in the forums.
I am being treated for relapsed myeloma based on rising light chains earlier this year, and it has gone well. I have been tapering off dexamethasone, going from 40 mg for 4 months to 20 mg for a month to dropping one 4 mg pill a week till I take none. We are monitoring blood work to see if my light chains remain stable and in the normal range while on 25 mg Revlimid once a week. I was starting to develop orthostatic blood pressure again, which may have been related to the dexamethasone. My standing blood pressure was 82 / 54 and I felt something need to be done or I was going to end up in the hospital again like I did three years ago. I am also seeing an endocrinologist who is running a lot of labs to try and determine what is going on and how the dexamethasone may or may not be affecting me.
Looking at the list of dexamethasone side effects, after five months on the drug it seemed I had experienced over half the side effects at one time or the other. I never heard of anybody having the numbness and tingling I described and it seems to be unique to me. It is definitely numbness and tingling, much like what I have experienced with neuropathy, and fairly strong, not just a warm feeling. It's the kind of feeling you get in the hands get when using a vibrating sander for a long period of time.
My endocrinologist also has not had anybody experience from dexamethasone what I have described . It does happen reliably when I take the drug now, but it did not start out that way. It did not happen the first few months, but when it starting occurring, it was every Monday for several months up until now. I had it last week on Monday when I took 12 mg. Today I took 8 mg and so far it has not happened, so maybe at that dose level and below I will stop experiencing it.
I am not too worried about it now. I just chalk it up to one of those strange things that can happen when 4 months of dexamethasone throws the endocrine system out of balance. I realize I will likely have to go back on dexamethasone at some point in the future, but I am hoping a break from the drug can reset my endocrine system and balance it for a while and help me tolerate the drug again when I need to restart it.
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Eric Hofacket - Name: Eric H
- When were you/they diagnosed?: 01 April 2011
- Age at diagnosis: 44
Re: Tingling / numbness in upper body after dexamethasone
Hi Eric,
I remember when I was going through my induction therapy with Velcade / dex, I began to have a strange sensation in my torso and pelvis. It was hard to explain, but it was like sitting in one of those vibrating massage chairs. No pain at al,l but very annoying. Then I read an article by Pat Killingsworth and he likened it to feeling like a tuning fork. That was it! That's exactly what it felt like!
I couldn't attach the feeling to either drug but just assumed it was the Velcade, as I had some neuropathy / numbness issues that were kind of bad at one point.
I don't know if that is what you're experiencing, but it sure sounds like it by your description. Hope it clears up soon!!
I remember when I was going through my induction therapy with Velcade / dex, I began to have a strange sensation in my torso and pelvis. It was hard to explain, but it was like sitting in one of those vibrating massage chairs. No pain at al,l but very annoying. Then I read an article by Pat Killingsworth and he likened it to feeling like a tuning fork. That was it! That's exactly what it felt like!
I couldn't attach the feeling to either drug but just assumed it was the Velcade, as I had some neuropathy / numbness issues that were kind of bad at one point.
I don't know if that is what you're experiencing, but it sure sounds like it by your description. Hope it clears up soon!!
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Guitarnut - Name: Scott Hansgen
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Sept 2011
- Age at diagnosis: 47
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