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Allergic Reaction to CT Scan w/ Contrast

hydrangea's picture
hydrangea
Posts: 14
Joined: Oct 2012

I realize that I am not alone in feeling anxiety the closer my CT scans approach.  I think it is called scanxiety!  I have had several CT scans with and without contrast of the chest/abdomen/pelvic since November 2011.  I am now on the 6 months apart with the last one being in September 2012.  After the scan in September several hours later I awoke with a rash all over and severe swelling of my entire face, ears, throat & tongue.  I awoke my husband and we immediately headed to the emergency room.  Final disgnosis was allergic reaction, cannot exclude CT dye reaction.  This was first time I had a reaction to the CT scans after having several previously. 

I am scheduled to have another CT scan w/ and without contrast in March and I can't forgot how frightening my previous experience was in Sept.  Bad enough that I become anxious prior to the scans for obvious reasons but now I worry that I will once again have an allergic reaction.  My urologist and oncologist prescribed prednisone & benadryl to take prior to and after the scan. Both have stressed that I need to have the dye (contrast) to get an accurate scan.

Has anyone on this board had a similar reaction and if so, any recommendations or additional information would be greatly appreciated.

Thank you for your time and concern.

Dedifferentiated papillary carcinoma (>90% sarcomatoid, extensive necrosis)

Grade:  IV            Stage  III   pT3a        

4.2 tumor   invaded into perinephric fat;  partial nephrectomy of right kidney    12/7/11

 

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

I see you've already received some helpful advice on KIDNEY_ONC.   Perhaps I may add a few extra thoughts?

The first thing to say is that you seem to be very unlucky.   >90% sarcomatoid (the extensive necrosis is bound to be a consequence) is amazing on a fairly small tumor, especially with underlying pRCC which is far less prone to sarcomatous change than chRCC is and less than in clear cell.  The consequence of this is that you will certainly need scans at short intervals (I would say 3-monthly)  and therefore your reaction to the dye is extremely important.

Clearly, for your own benefit you'll need to make sure that your allergic reaction is flagged up to everyone and that every time you have a CT scan it's mentioned to the techniciams beforehand. 

I guess you'll be enquiring thoroughly into non-ionic contrast, 1/2 dose, alternative modalities (e.g. MRI) etc. 

It's unusual to have such a severe reaction after such a time lapse - it usually occurs almost immediately.  You probably ought to stick around the hospital premises for a few hours after a CT scan with contrast, in case of a repeat (it may never happen again but is too serious to gamble on).  Have you hydrated thoroughly after your scans?  This is important to flush the dye out of your body as soon as possible and doing so, if you didn't, might perhaps have averted your frightening experience.

rae_rae's picture
rae_rae
Posts: 277
Joined: Oct 2010

It seems the more CT scans I have, the more issues I have with the contrast as I have posted about it making me ill before. I have de developed a horrible itchy rash on my neck which has spread to my face, ack, arms, chest and thighs (spotty) this week and cannot figure out why. I had my CT With contrast on Wednesday. I do not know if there is any connection but I do have a dr. Appt on Wednesday as nothing I've tried will get rid of it.

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

Oh Rae, had you forgotten that when you had the dye problem and Fox the radiation phenomenon, I advised that you should look, respectively,  at the contrast and brightness controls in your settings menu? Smile

Have you had any thoroughgoing discussions with the radiography techs and your docs about your reaction - whether it is ascribable to the CT and what can be done about it?

rae_rae's picture
rae_rae
Posts: 277
Joined: Oct 2010

TW,

Evidently I forgot to adjust the contrast as you mentioned last year! I mentioned that I had a lot of tummy issues to the tech and she told me to "drink lots of water". I have an appt. tomorrow (not Wed) about my rash, now that it's starting to feel a little better today (as in not so itchy). Who knows what it could be. I truly hope it isn't from the contrast. I have been on the road traveling a lot for work lately, maybe it's a stress-rashFoot in Mouth.

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

Yes, let's settle for labelling it 'road rash' !   Sensible to try to sort out the cause though.  Drinking lots of water both before and after the scan is of major importance .  I try to flush my system out after a CT with dye and so far have had no trouble with it.

hydrangea's picture
hydrangea
Posts: 14
Joined: Oct 2012

Hi Rae,

Thanks so much for responding to my posting.  Guess I am not alone in having a delayed allergic reaction to the dye in the CT scan.  Your rash sounds similiar to what happened to me but I also had massive swelling of my face, etc and difficulty breathing.  Someone has mentioned that perhaps I should have an IV for hydration right after the CT scan is finished.  I think I will contact either my oncologist or urologist this week and ask about several options.

I hope that you contact your doctor tomorrow and get some relief.  Do you have CT scans every 6 months or more often?  Is it possible that the more scans we receive with contrast the greater the risk for having an allergic reaction?

My scanxiety is at an all time high right now with too many decisions to make.  It is somewhat reassuring to know that others  are on the same journey.

I hope you feel better and get rid of that rash.  Take good care.

Thanks again, I really appreciate you responding to my posting.

Diane

 

hydrangea's picture
hydrangea
Posts: 14
Joined: Oct 2012

Thank you so much for replying Texas.  I was hoping you would respond as I have followed you on this site and I believe that you are very knowledgeable in the many aspects of RCC. I appreciate any advice you can send my way.  I have never felt that I was unlucky rather the opposite, lucky that in one month from discovering I had the tumor I had surgery and survived the surgery. (Spent 5 days in the hospital - not the 3 the surgeon said was average). 

Once I received the path report (4 months after surgery) I did become very worried/concerned about the recurrence rate and the  >90% sarcomatoid & the extensive necrosis .  I do see an oncologist every 3 months & urologist every 6 months & scans every 6 months at this time.  You can bet that I will discuss going back to 3 month intervals at my next visit w/ each of them (April).

Both know about the reaction in September and I do have meds prescribed.  When I mentioned MRI after the September episode they said MRI wouldn't give them an accurate picture.  As the days go by and the CT scan is quickly approaching the more nervous I get.  I think I will call one of them this week and ask if I can either get an MRI or 1/2 dose of the dye.  Thanks so much for suggesting that I hang around the hospital for awhile afterwards, I hadn't thought of that but agree that it is a good idea. 

I don't know if this has anything to do with the allergic reaction, but I am allergic to bee stings and always carry an epi-pen.  Way back in 1986 I was stung by a bee and had the exact same reaction and it also was delayed many hours after the bee sting.  I went to bed and woke up in the middle of the night w/ a rash all over, swollen and difficulty breathing.  My husband was out to sea (actually in Scotland on a sub) and my small children woke up and dialed 911.  By the way I LOVE Scotland and was able to visit there several times when my husband was active duty Navy stationed there. 

I can't thank you enough for responding to my posting.  I really appreciate you taking the time.

Take good care,

Diane

 

bry4856's picture
bry4856
Posts: 14
Joined: Nov 2012

I had my left kidney removed totaly with a 5cm tumor in May of 2001. I have a ct every 6 months since without dye. My kidney doctor will not allow a ct with contrast because of having only one kidney. My creatinine blood test runs at 1.4 which he is happy with. Even without the dye my test showed in 2008 a tumor on my right ardenal gland and it was removed. What I am trying to say is that the scans are helpful in showing what is devolping without contrast. Ask your kidney doctor. I still have my scans every 6 months next due March 11th, we are watching because new rcc cancer has shown up again in November. I am now on chemo pills and having a touch time with side efforts, vomiting often, on Voltent 4 weeks off a month then tryed Sutent for 2 weeks. I am now waiting to rest my body till the scans next week. Good luck and hope you can use my thoughts.  Bryan

todd121
Posts: 641
Joined: Dec 2012

I had my right kidney removed in December. My last blood test my creatinine was 1.6. My doctor won't allow me to have the dye until the creatinine drops below 1.5. My most recent scan was done without contrast. He said it's not as good, but it's ok.

I'm not so sure they need to push you to have the dye. I suppose it will help them to find anything that pops up early (small). What can you do but talk to them? The other thing you can do is get a second opinion! And a third if needed. :)

Todd

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

Diane, you've had the thoughts of one real expert (Susan) and I hope youwill get help from the resident expert here because this is a case for  MedScanMan  -  Jeff, if you're free, come in please.

A couple more thoughts meantime.  Yes, in the obvious sense, the more scans you have, the more opportunities there are for an allergic reaction.  But also, I believe the evidence suggests that when you've had an adverse reaction the odds get worse, rather than better, with subsequent scans, so it's a good idea to get the set-up right, sooner rather than later.   You could maybe enquire whether your docs would classify this reaction as an anaphylactoid one, or anaphylactic (different kinds of allergic response).

NanoSecond's picture
NanoSecond
Posts: 608
Joined: Oct 2012

Even though my creatinine level has always been considered "good" (1.2) my onc will only schedule a CT scan with contrast when I insist on it. He always errs on the side of caution and feels that unless something becomes visible (so far I only have had bone mets) there is no need to take the risk.

Meanwhile many oncs who do insist on contrast also recommend that their patients take N-acetylcysteine (NAC) the day before and of the day of the scan.

N-acetylcysteine (NAC) has been approved by the FDA for use in several types of treatments. It is taken primarily to help protect the kidney and it is a powerful anti-oxidant.

 

Because it is an effective helper in the detoxification process, NAC has been approved by the FDA for treatment of acetaminophen overdose and to help protect the kidneys from the toxic effects of IV contrast used in some CT scans and X-ray studies. Because of glutathione's tremendous importance in keeping the mitochondria healthy in the lungs, kidneys, and brain, NAC is commonly used in the treatment of lung diseases like cystic fibrosis, bronchitis, and asthma.

 

 

"NAC is also the key component in the generation of GABA. GABA (gamma amino butyric acid) is one of the most important inhibitory neurotransmitters. It allows the body to have coordinated, fluid movements, and it helps control impulsive behavior. As an inhibitory neurotransmitter, GABA helps with calming and quieting both physical and mental pain and distress.

 

 

Several neurologists and psychiatrists have asked patients to use one to two grams of NAC each day to support GABA generation in the brain. For some individuals, however, diarrhea occurs at doses more than 500mg per day. But the recommended daily allowance for a 150-pound adult is two grams a day (2000mg/day).

 

 

NAC is also found naturally in a variety of foods, including: poultry, egg yolks, yogurt, red peppers, garlic, onions, broccoli, Brussels sprouts and other cruciferous vegetables.  It is also found in oats, wheat germ, asparagus, and avocado.” – Dr. Terry L. Wahls

 

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

Her food list is interesting in this connection, Neil.   As you may have picked up, I eat all of the foods listed on a regular basis, some of them as daily staple items of diet, and so far, after 5 or 6 scans with contrast I've never had any trace of a reaction. 

Mind you, I'm lucky that my facilities use the latest PET/CT scanners and the most advanced contrast media, which may not be available to all on this forum.  I've never been asked to drink any contrast (just as I never had 'liquid plumbing' before either of my ops), just a pint or two of plain water in the hour or a bit less before the scan.   I'm encouraged to drink plenty soon afterwards to initiate getting the dye out of my body. 

They have all the icu gear on hand if any patient should need it and they have me sit down and wait for a few minutes while they verify the imaging has gone to plan and to let my system settle and display any AEs it's wanting to.   They are quite relaxed about my then jumping in to my car and taking off, knowing I could get back to them or to another hospital within not many minutes if I needed to.  I suppose even over there you have locations that are still not using non-ionic contrast  and still have earlier generation scanners?

There are innumerable good websites on the topic and one I've found good is this one from Wisconsin Uni.

https://www.radiology.wisc.edu/fileShelf/contrastCorner/files/ContrastAgentsTutorial.pdf

I found the bit about delayed reactions on page 5 interesting and potentially useful.

 

hydrangea's picture
hydrangea
Posts: 14
Joined: Oct 2012

Texas,

Thanks so much for the link to the Wisconsin Univ findings on contrast - delayed reactions, etc.  It was vey interesting and informative, my reaction was clearly defined by this.  I didn't realize that you could have an allergic reaction up to 7 days later.  Mine was hours later and I thought that was delayed!

 

aazbell
Posts: 8
Joined: Feb 2013

I had the same problem with the dye.  I had 4 or 5 scan and then the reaction.  The oncologist prescribed prednisone & benadryl to take prior to and after the scan, but when I got there the hospital refused to give me the dye.  Not because of the reaction but because I had my kidney removed.  So after waiting an hour and a half and drinking a gallon of water.  They decided that I could not have the dye.  It was the first day of their new policy.  I also have papillary kidney cancer that went into lymph nodes and now in the lungs.  Good luck with the scan. 

 

rae_rae's picture
rae_rae
Posts: 277
Joined: Oct 2010

My rash is believed to be stress related (aka they have no clue). I was given a shot of steroids and steroid cream. My onc doesn't want me to have IV contrast anymore, just because it's hard on the kidney and with my positive prognosis he doesn't feel it's necessary.

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

Rae and Diane, just out of curiosity, do you know, or could you find out whether your guys are using a non-ionic contrast medium?

hydrangea's picture
hydrangea
Posts: 14
Joined: Oct 2012

Texas,

I asked my urologist about using non-ionic contrast as an option to switch to and he said that is what they were using on me for all of the past CT scans with contrast.  So that really wasn't another option for me.

Thanks for thinking about this.

Diane

 

hydrangea's picture
hydrangea
Posts: 14
Joined: Oct 2012

Thank you all so very much for the helpful information you have provided me.  

There have been some new developments in my dilema with the upcoming CT scan.  The hospital telephoned me yesterday to set up the date & time in March for the scan and asked pertinent questions.  During our conversation I asked if they were aware of my allergy to the contrast dye and much to my dismay I was told NO - it is not noted on the request form from my urologist.  She immediately informed me that I could not go to the site where I went for the past 4 scans, I would need to go to the main hospital in another town as they would be fully equipped to handle an allergic reaction.  She also said I needed to contact my urologist and let him know that his office neglected to complete the form with that very IMPORTANT information.  She said this is life threatening information and ;your doctor needs to know about this error.

Needless to say I contacted my urologist, spoke with the office staff first & tried to identify how this could have happened.  They admitted that they definitely knew that I had the allergic reaction in September and it should have been on the form sent to the hospital - BUT - the only explanation was that "many hands handled that form prior to faxing it to the hospital and it was JUST an oversight".  Not exactly what I wanted to hear.  I requested that they have the doctor call me.

The doctor did return my call the same day.  He listened to my concerns about the form and & lack of important information. I also asked about the other options many of you had suggested; 1/2 dose or non-ionic contrast, etc. I was ready to ask for the MRI w/ contrast and before I could mention it, he said that he has reconsidered my past allergic reaction and feels we should cancel the CT scan w/ contrast and he will schedule me for an MRI w/contrast if he gets insurance approval.  He further explained that MRI w/contrast is more expensive but it is just as good if NOT better than a CT scan w/ contrast.   This is not what he told my husband and me in September after the bad reaction & we inquired about switching to an MRI.

Cross your fingers that I get insurance approval.  When I cross this bridge my next step is to request 3 month intervals instead of 6 months between scans based on recommendations from others on this site.

My sincere thanks to all of you for your continued support.

 

pscott
Posts: 1
Joined: Sep 2014

This has happened to me twice now, first time I was told it was a panic attack (increased heart rate, flushing, severe nausea, urgent need to defacate). I had awoken from a deep sleep on the evening of a CT scan to experience all this. Then the same attack 2 days later during sleep. Problem is here in Australia Doctors look at you as if to say " You are joking it is impossible". Maybe the first time I believed them but the second time perhaps 18 months later again following a CT scan with contrast I had a similar experience. This time again twice, 3 and 14 days after the scan but thank God not beng woken from a deep sleep, both happening 1st thing after I got out of bed.

I am a CLL sufferer, just wonder if anyone has had similar experience. The denial by medical staff really annoys me and readin g of other peoples similar experience is very useful. I note very well the comments posted re getting re-hydrated quickly.

todd121
Posts: 641
Joined: Dec 2012

There is some risk of kidney damage as well. I would think you'd be well within your rights to refuse the contrast.

I get annoyed at how medical staff seems to push us around at times. The more I interact with them, the more I realize I have the right to say no. Stop it. Take it out. You're not going to stick me there. Etc.

When I had my nephrectomy I shared my room with a fellow that was Stage 4 throat cancer and he was in having chemo. He'd had several rounds. I really admired how he ordered people around and told them what he would and wouldn't eat and what he would and wouldn't do. I want to be just like him in standing up for myself. They had left an IV in my arm "just in case" after my surgery and it was really causing me pain and discomfort and they wouldn't remove it (I had another IV in that was being used, this one was just a backup). I ended up with a thrombosis in that vein in my arm where they left that one in and it tooks months to heal up. I asked them to remove it multiple times and their answer each time was "as soon as we remove it, we'll need it". Is that science? That's called SUPERSTITION. Next time I'll demand they remove it and I'll sign whatever it takes to get it to happen. There's always a fine line between standing up for yourself and making them mad, though. I had a good friend that is a nursing aid, and I heard stories about how they treated patients sometimes that were too combative. Let's just say, it could get difficult to get a blanket or a cup of ice if you get them very angry with you. There has to be a balance I suppose.

Todd

cjhawk38's picture
cjhawk38
Posts: 44
Joined: Dec 2013

I am allergic to fish so I never get the dye with CT scan.

Cindy

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