mellowsong
11-08-08, 05:26 PM
Ok, I'm posting this here because it may get the word out to even one person. I also know that many of you have multiple drug allergies and multiple chemical sensitivity. There is really no way to make this long story short.
On Tuesday, I underwent the first part of a 2 stage bone scan where they removed white blood cells, tagged them with a radioactive isotope and gave them back to me. I have a knee replacement that's failing and they were looking for infection. Here's the sequence of events:
1. About 1PM on Tuesday received the injection of tagged white blood cells. Before allowing the test, I questioned them about the contents of the isotope because of my allergies to so many things. They reassured me and even showed me the insert where it said no known adverse reactions and no contraindications.
2. About 6PM, I suddenly couldn't breath, throat started itching and I felt like I had a hand compressing my trachea. My eyes turned flaming red and severe sinus congestion and I had a real feeling of "impending doom". Obviously to me, an allergic reaction. This was definitely different from an asthma attack and I'd been doing a lot better with the asthma. I did not go to the ER because I am already on prednisone for asthma, so I took an extra prednisone and some benadryl and waited it out. My first thought was it had to be the injection, but then I thought about the insert, so tried to figure out something else.
3. I decided it had to be the walnuts I had eaten, even though I eat nuts all the time with no problem. I had bought a new brand of walnuts and they were not organic, so I thought maybe there was something on them.
4. Wednesday, I woke up with a deep, horrible productive cough and laryngitis. Throat still swollen, eyes red etc. I went back Wednesday afternoon for the actual scan and again questioned them regarding the isotope. Again, I was reassured and told I must just be getting sick. I talked to Reesacat via email and she validated my feeling it had to be a reaction to something.
5. Thursday, I saw my primary care nurse practitioner to go over labwork and brought up the possiblity of reacting to the injection She blew me off, then proceeded to tell me I probably had pneumonia from the prolonged asthma. From having had pneumonia many times, I already was pretty sure, but I refused to drive 35 miles to the VA hospital for a chest Xray. Frankly I was too darn sick to drive that far and for what?
6. Friday morning, I knew that if it had been the nuts the reaction would be long gone and I was no better...and my mind went back to the injection...so, I decided to look it up online...Thank God for the internet.
7. I am allergic to almost all antibiotics, so imagine my dismay (and anger)when I discovered that Indium (the radioactive isotope) is complexed with oxyquinolone (Cipro)...and antibiotic I am allergic to. I looked up the half life in the body, Indium less than 2 hours, but Cipro over 24 hours, which means that it could take up to a week to completely be out of my system.
8. I called nuclear medicine and demanded to speak with someone in charge. The nurse was very rude and insisted there could be no connection but she agreed to have the radiologist call me.
9. The radiologist calls me and immediately starts trying to reassure me and placating me. I held my ground and asked him if he could access the internet. I gave him a pubmed article which proved oxyquinolone was in the injection. His tone of voice immediately changed to deep concern. He looked at a few more websites and admitted he was shocked...that how could there be an antibiotic present and no warnings or contraindications? He also asked me if I had talked to my doctor about the reaction and I told him she "blew me off". (I'm still in a state of shock that somebody listened to me)
10. He said he would talk to the nuclear pharmacist and call me back. Frankly I did NOT expect a call back, but he did. They called the manufacturer and the manufacturer said they had a data base of skin reactions, but had never had a report of a respiratory reaction. So...now you are wondering why there is nothing in the literature? A manufacturer is only obligated to report adverse reactions that affect 1% or more of patients receiving a drug. Because there were so few reports, they are legally allowed to claim no adverse reactions and no contraindications. I think any doctor, nurse or other health care worker knows that if there is a potential for a skin reaction there is a potential for anaphylactic shock.
11. The manufacturer told the doctor to call me back, get an exact timeline and list of symptoms because they felt it was "likely" related and needed to add my case to their data base.
How many suckers have had reactions like this or worse and never put the pieces of the puzzle together like I did? Have people died of anaphylaxis and no clue what caused it? If I had not been on prednisone, there is a good chance I could have gone into full blown anaphylactic shock and died as I live alone. Recognizing it for what it was, I took an extra prednisone and a Benadryl and probably saved my own life. Unfortunately, I'm ONE case...so the literature won't change. At least nuclear medicine at my VA hospital will be aware. I will never again allow an invasive procedure of any kind, no matter how purportedly safe it is. I'm still furious. It is Saturday evening, and I still have no voice, still coughing up nasty stuff, sinuses congested, eyes red etc. I am slowly improving. Apparently the radiologist also called the nurse practitioner and told her I told him she blew me off. She was not happy about that. She called me to demand I go to the ER for IV steroids. Again, it's 35 miles to the ER. I told her I was in no shape to drive and I was NOT going to call an ambulance. Amazing how suddenly she believed me and was mad at me for refusing to go to the ER :)
On Tuesday, I underwent the first part of a 2 stage bone scan where they removed white blood cells, tagged them with a radioactive isotope and gave them back to me. I have a knee replacement that's failing and they were looking for infection. Here's the sequence of events:
1. About 1PM on Tuesday received the injection of tagged white blood cells. Before allowing the test, I questioned them about the contents of the isotope because of my allergies to so many things. They reassured me and even showed me the insert where it said no known adverse reactions and no contraindications.
2. About 6PM, I suddenly couldn't breath, throat started itching and I felt like I had a hand compressing my trachea. My eyes turned flaming red and severe sinus congestion and I had a real feeling of "impending doom". Obviously to me, an allergic reaction. This was definitely different from an asthma attack and I'd been doing a lot better with the asthma. I did not go to the ER because I am already on prednisone for asthma, so I took an extra prednisone and some benadryl and waited it out. My first thought was it had to be the injection, but then I thought about the insert, so tried to figure out something else.
3. I decided it had to be the walnuts I had eaten, even though I eat nuts all the time with no problem. I had bought a new brand of walnuts and they were not organic, so I thought maybe there was something on them.
4. Wednesday, I woke up with a deep, horrible productive cough and laryngitis. Throat still swollen, eyes red etc. I went back Wednesday afternoon for the actual scan and again questioned them regarding the isotope. Again, I was reassured and told I must just be getting sick. I talked to Reesacat via email and she validated my feeling it had to be a reaction to something.
5. Thursday, I saw my primary care nurse practitioner to go over labwork and brought up the possiblity of reacting to the injection She blew me off, then proceeded to tell me I probably had pneumonia from the prolonged asthma. From having had pneumonia many times, I already was pretty sure, but I refused to drive 35 miles to the VA hospital for a chest Xray. Frankly I was too darn sick to drive that far and for what?
6. Friday morning, I knew that if it had been the nuts the reaction would be long gone and I was no better...and my mind went back to the injection...so, I decided to look it up online...Thank God for the internet.
7. I am allergic to almost all antibiotics, so imagine my dismay (and anger)when I discovered that Indium (the radioactive isotope) is complexed with oxyquinolone (Cipro)...and antibiotic I am allergic to. I looked up the half life in the body, Indium less than 2 hours, but Cipro over 24 hours, which means that it could take up to a week to completely be out of my system.
8. I called nuclear medicine and demanded to speak with someone in charge. The nurse was very rude and insisted there could be no connection but she agreed to have the radiologist call me.
9. The radiologist calls me and immediately starts trying to reassure me and placating me. I held my ground and asked him if he could access the internet. I gave him a pubmed article which proved oxyquinolone was in the injection. His tone of voice immediately changed to deep concern. He looked at a few more websites and admitted he was shocked...that how could there be an antibiotic present and no warnings or contraindications? He also asked me if I had talked to my doctor about the reaction and I told him she "blew me off". (I'm still in a state of shock that somebody listened to me)
10. He said he would talk to the nuclear pharmacist and call me back. Frankly I did NOT expect a call back, but he did. They called the manufacturer and the manufacturer said they had a data base of skin reactions, but had never had a report of a respiratory reaction. So...now you are wondering why there is nothing in the literature? A manufacturer is only obligated to report adverse reactions that affect 1% or more of patients receiving a drug. Because there were so few reports, they are legally allowed to claim no adverse reactions and no contraindications. I think any doctor, nurse or other health care worker knows that if there is a potential for a skin reaction there is a potential for anaphylactic shock.
11. The manufacturer told the doctor to call me back, get an exact timeline and list of symptoms because they felt it was "likely" related and needed to add my case to their data base.
How many suckers have had reactions like this or worse and never put the pieces of the puzzle together like I did? Have people died of anaphylaxis and no clue what caused it? If I had not been on prednisone, there is a good chance I could have gone into full blown anaphylactic shock and died as I live alone. Recognizing it for what it was, I took an extra prednisone and a Benadryl and probably saved my own life. Unfortunately, I'm ONE case...so the literature won't change. At least nuclear medicine at my VA hospital will be aware. I will never again allow an invasive procedure of any kind, no matter how purportedly safe it is. I'm still furious. It is Saturday evening, and I still have no voice, still coughing up nasty stuff, sinuses congested, eyes red etc. I am slowly improving. Apparently the radiologist also called the nurse practitioner and told her I told him she blew me off. She was not happy about that. She called me to demand I go to the ER for IV steroids. Again, it's 35 miles to the ER. I told her I was in no shape to drive and I was NOT going to call an ambulance. Amazing how suddenly she believed me and was mad at me for refusing to go to the ER :)