I have a question that I desparately need an answer to.
My onc wants to start me on an agressive treatment of thalidomide in addition to the Velcade, dexamethasone & Zometa that I am currently taking for my multiple myeloma.
Thirty years ago I had an allergic reaction to Fioranol that gave me Stevens-Johnson Syndrome TWO TIMES. Yes, I ended up having the same physician give me the same offending medicine twice and I ended up with SJS twice.
I am VERY concerned about taking thalidomide for that reason. What is your advice? Is there a lower dose that I could safely try, possibly in a medical environment? Any help you can give me would be so much appreciated.
Claire Harris
Forums
8 posts
• Page 1 of 1
Re: Thalidomide and Stevens-Johnson Syndrome
Hi Claire!
SJS is a very serious condition and, as you may know, can be life threatening. It is also highly unpredictable and can be severe even when not life threatening.
Any drug can cause it as SJC tends to be extremly idiosyncratic, as well.
One thing you may want to do is a google search under thalidomide for incidence of SJC and/or cases reported. You can also call the mfgr, Celegene and have them forward you written data for any and all reports of SJC and/or you can insist/demand that your physician do so.
i think to say you should be cautious is a huge understatement.
Why is your physician selecting thalidomide over lenalidomide?
SJS is a very serious condition and, as you may know, can be life threatening. It is also highly unpredictable and can be severe even when not life threatening.
Any drug can cause it as SJC tends to be extremly idiosyncratic, as well.
One thing you may want to do is a google search under thalidomide for incidence of SJC and/or cases reported. You can also call the mfgr, Celegene and have them forward you written data for any and all reports of SJC and/or you can insist/demand that your physician do so.
i think to say you should be cautious is a huge understatement.
Why is your physician selecting thalidomide over lenalidomide?
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suzierose - Name: suzierose
- When were you/they diagnosed?: 2 sept 2011
Re: Thalidomide and Stevens-Johnson Syndrome
Hi SusieRose,
The lenalidomide (which is the Revlimid, right) has the same warning. I did talk with one of the Pharmacists at the group that helps people apply for help paying for the drug and he said they don't have any cancer drug that doesn't carry that warning. I wasn't aware I could ask him for any data on it, or I didn't think of it. He just said that there was no way they could recommend me trying the medication. He recommended Velcade, which I am already taking, but it isn't taking my numbes down very fast......slowly and consistantly, but not fast enough.
Thanks, SusieRose
The lenalidomide (which is the Revlimid, right) has the same warning. I did talk with one of the Pharmacists at the group that helps people apply for help paying for the drug and he said they don't have any cancer drug that doesn't carry that warning. I wasn't aware I could ask him for any data on it, or I didn't think of it. He just said that there was no way they could recommend me trying the medication. He recommended Velcade, which I am already taking, but it isn't taking my numbes down very fast......slowly and consistantly, but not fast enough.
Thanks, SusieRose
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Claire Harris
Re: Thalidomide and Stevens-Johnson Syndrome
Hi Claire!
Well it sounds like you tapped an excellent resource ..a pharmacist.
I always listen to pharmacists they know the most when it comes to drugs, that is their area of expertise.
Sounds like you are in good hands.
Well it sounds like you tapped an excellent resource ..a pharmacist.
I always listen to pharmacists they know the most when it comes to drugs, that is their area of expertise.
Sounds like you are in good hands.
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suzierose - Name: suzierose
- When were you/they diagnosed?: 2 sept 2011
Re: Thalidomide and Stevens-Johnson Syndrome
I can only imagine your concerns after going through that experience two times.
Generally, having Stevens-Johnson Syndrome (SJ) from one offending agent does not increase your risk for having similar issues with other drugs that have that as a side effect. The Fiorinal (asprin, butalbital, and caffeine) combination that gave you SJS is concerning. However, there are three (3) case reports of thalidomide-induced SJS, making this a rare event when considering the number of patients that have received this agent. Importantly, there are not many therapeutic agents that we prescribe that don't have the potential (excedingly rare) of causing SJS.
My major concern would be which of the three drugs caused the SJS in the first place. I am assuming the butalbital. Have you used aspirin in the interim?
The reason that I ask is that when a patient is placed on thalidomide-containing regimens we also ask that the patient take a form of anticoagulation to prevent blood clots. If you have no risk factors for clots, then aspirin remains our preventative treatment of choice.
I would make sure that you have this conversation with your oncologist.
Generally, having Stevens-Johnson Syndrome (SJ) from one offending agent does not increase your risk for having similar issues with other drugs that have that as a side effect. The Fiorinal (asprin, butalbital, and caffeine) combination that gave you SJS is concerning. However, there are three (3) case reports of thalidomide-induced SJS, making this a rare event when considering the number of patients that have received this agent. Importantly, there are not many therapeutic agents that we prescribe that don't have the potential (excedingly rare) of causing SJS.
My major concern would be which of the three drugs caused the SJS in the first place. I am assuming the butalbital. Have you used aspirin in the interim?
The reason that I ask is that when a patient is placed on thalidomide-containing regimens we also ask that the patient take a form of anticoagulation to prevent blood clots. If you have no risk factors for clots, then aspirin remains our preventative treatment of choice.
I would make sure that you have this conversation with your oncologist.
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Dr. Ken Shain - Name: Ken Shain, M.D., Ph.D.
Beacon Medical Advisor
Re: Thalidomide and Stevens-Johnson Syndrome
Thank you Dr. Shain for your response. It really does make sense. And at the same time, I am VERY scared. I wish there was some way that I could test it without risking my life! And, yes, I've taken aspirin several times since then (it was about 30 years ago) with no event. I'm sure it was the phenobarbitol. Do you happen to know if the 3 cases of SJ attributed to Thalidamide were fatal? Not that that would have any bearing on my situation, I'm just curious.
So here's my $65,000 question to you: if you were in my situation, would you try the Thalidamide?
No pressure! Thank you again, Dr. Shain
So here's my $65,000 question to you: if you were in my situation, would you try the Thalidamide?
No pressure! Thank you again, Dr. Shain
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Claire Harris
Re: Thalidomide and Stevens-Johnson Syndrome
But to answer your question. If you were my wife, sister, or mother I would recommend the best therapy. If your oncologist feels that VTD is the best next line of therapy, then I would recommend that you initiate therapy. As you can see below you are already taking medications that have the potential to cause SJS.
Regarding the outcomes of the patients- I do not know, but I have quoted and attached an article discussing skin effects of Lenalidomide. I hope that this might help.
Please see the below copy and paste quote from a letter to the editor in JCO (Journal of Clinical Oncology) regarding Lenalidomide EM/SJS/TEN by Castaneda and colleagues in 2009.
Erythema Multiforme/Stevens-Johnson Syndrome/Toxic Epidermal Necrolysis
in Lenalidomide-Treated Patients.
TO THE EDITOR: Stevens-Johnson syndrome (SJS) is a rare but
life-threatening cutaneous adverse reaction. While SJS may sometimes
be admixed with diagnoses of erythema multiforme (EM)
minor or major,1 SJS and toxic epidermal necrolysis (TEN) are
considered to be severity variants of the same disease with drug exposure
the primary etiologic factor.2 The incidence of SJS has been
estimated at 1.1 to 7.1 cases per million person-years, and that of TEN
at 0.4 to 1.2 per million person-years.1 Mortality among patients with
SJS or TEN has been reported to be between 1% to 3% and 10% to
70%, respectively.1
Risk factors for SJS include infection, vaccination, drugs, systemic
diseases, physical agents, and food.1 SJS has been associated with
morethan 100 drugs through case reportsandstudies, including drugs
such as allopurinol,3 quinolones,3 corticosteroids (including dexamethasone),
3,4 rituximab,5 imatinib,6 and bortezomib.
Regarding the outcomes of the patients- I do not know, but I have quoted and attached an article discussing skin effects of Lenalidomide. I hope that this might help.
Please see the below copy and paste quote from a letter to the editor in JCO (Journal of Clinical Oncology) regarding Lenalidomide EM/SJS/TEN by Castaneda and colleagues in 2009.
Erythema Multiforme/Stevens-Johnson Syndrome/Toxic Epidermal Necrolysis
in Lenalidomide-Treated Patients.
TO THE EDITOR: Stevens-Johnson syndrome (SJS) is a rare but
life-threatening cutaneous adverse reaction. While SJS may sometimes
be admixed with diagnoses of erythema multiforme (EM)
minor or major,1 SJS and toxic epidermal necrolysis (TEN) are
considered to be severity variants of the same disease with drug exposure
the primary etiologic factor.2 The incidence of SJS has been
estimated at 1.1 to 7.1 cases per million person-years, and that of TEN
at 0.4 to 1.2 per million person-years.1 Mortality among patients with
SJS or TEN has been reported to be between 1% to 3% and 10% to
70%, respectively.1
Risk factors for SJS include infection, vaccination, drugs, systemic
diseases, physical agents, and food.1 SJS has been associated with
morethan 100 drugs through case reportsandstudies, including drugs
such as allopurinol,3 quinolones,3 corticosteroids (including dexamethasone),
3,4 rituximab,5 imatinib,6 and bortezomib.
- Attachments
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JCO-2009-Castaneda EM-SJS-TEN with Len.pdf- (58.85 KiB) Downloaded 68 times
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Dr. Ken Shain - Name: Ken Shain, M.D., Ph.D.
Beacon Medical Advisor
Re: Thalidomide and Stevens-Johnson Syndrome
I'm a 66 yr old male with MDS. Although I'm not missing the 5 chromosome which is generally the reason Revlimid (lenalidomide) is administered, my doctor felt I might benefit from it. To date the only drug I've ever had a bad reaction to was Ciprofloxacin.
On the 12th day (14Dec11) of Revlimid I broke out in a rash, hives, and severe itching all of which was especially bad on my face, ears, and eyes. My doc had me stop the Revlimid and use Benadryl lotion for the itching. A couple of days later and no relief we went to Benadryl tabs and then tried a six-day series of steroid pills. The latter may have stopped it from the getting worse but the problem continued at the same level. He then prescribed a steriod cream and hydroxyzine (Atarax) tablets which helped. The cream will stop itching but I don't find it any better than Nivea moisturizer. I was only supposed to take one of the hydroxyzine tabs every four hours but found it necessary to double and at times triple the dose. The skin on my face and other flash points got very dry, crusty, and peeled. It's now a month later and I still have hives/rashes and itching though not as bad.
Years ago my doc told me that he's had 1300-1400 MDS patients. The other day I asked how many have taken Revlimid and he said about 30. When asked if any had reactions like mine, he said a few experienced some rash and itching on the lower legs but it was mild and the Revlimid therapy continued. He added that he'd never seen a reaction as bad as mine. Poking around on the internet this morning, I'm fairly convinced I got Stevens-Johnson Syndrome from the Revlimid.
On the 12th day (14Dec11) of Revlimid I broke out in a rash, hives, and severe itching all of which was especially bad on my face, ears, and eyes. My doc had me stop the Revlimid and use Benadryl lotion for the itching. A couple of days later and no relief we went to Benadryl tabs and then tried a six-day series of steroid pills. The latter may have stopped it from the getting worse but the problem continued at the same level. He then prescribed a steriod cream and hydroxyzine (Atarax) tablets which helped. The cream will stop itching but I don't find it any better than Nivea moisturizer. I was only supposed to take one of the hydroxyzine tabs every four hours but found it necessary to double and at times triple the dose. The skin on my face and other flash points got very dry, crusty, and peeled. It's now a month later and I still have hives/rashes and itching though not as bad.
Years ago my doc told me that he's had 1300-1400 MDS patients. The other day I asked how many have taken Revlimid and he said about 30. When asked if any had reactions like mine, he said a few experienced some rash and itching on the lower legs but it was mild and the Revlimid therapy continued. He added that he'd never seen a reaction as bad as mine. Poking around on the internet this morning, I'm fairly convinced I got Stevens-Johnson Syndrome from the Revlimid.
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kouprey
8 posts
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