Omnipaque Severe Internal Injury

So sorry to read what you experienced. Hopefully your new dr will be able to help you. It is hard when drs cannot give us the answers we need. Sometimes there are no answers.

The contrast dye has been used for many years & not everyone has the reaction that you did. I have had contrast many times over the years & fortunately never had any issues with it.

I hope you can get some answers. Take care.

Veinpain, I had a ct scan a week and a half ago and am going through almost the same reactions. My doctors have been no help. I have gone to the ee four times since and my doctor says I probably have fibromyalgia. Mind you, I had no pains or vein pain before the ct scan. What do I do? I am at a loss. I have no idea what to do to make this better or what specialists I should see. I am in Florida. Please advise.

Thank you, Seashell. Veinpain, how are you feeling these days? Did the specialist find out more about your veins? Is there a medicine that helps relieve somenof your symptoms?

Judy:
I chronicled my reaction to Omnipaque IV CT contrast in a post writing earlier in this thread. Look for my earlier post for details.

Basically, my sensitivity-alergic reaction was capillary "leakage". Thousands of small red spots appeared on my body, representing capillary hemorrhage. Micro-capillary bleeding. Thousands (and I mean thousands) of bright red spots the size of a pencil tip - my torso was more affected than my arms or legs. I looked as though I had extensive chicken pox. That's the best description. The effect was evident with 15 minutes of the infusion.

I was given dexamethasone and Benadryl, as first line intervention.

My medical record has been red flagged that I am never to have Omnipaue. Never. Next time the vascular hemorrhage might be life threatening.

I have not suffered any long term effects. Thankfully.

Judy:
I would not panic . . .

Your fingertip discoloration may be a form of Raynaud's Syndrome. It is a phenomenon, often auto-immune in origin - that involves vasoconstriction of the smaller capillaries, generally affecting the distal extremities (hands and feet). Changes in outside temperature can heighten the effect.

Keeping your hands in a pair of soft mittens is a good way to minimize Raynaud's. So, too, keeping the feet in soft, wool socks (seamless socks are best to minimize additional irritation).

It sounds as though you have had either an allergic response or a heightened sensitivity to the IV contrast.

I also have a known allergic response to IV contrast (Omnipaque).

Your best strategy moving forward is to make sure that the contrast sensitivity/allergy is well noted and HIGHTLIGHTED on your medical record.

The problem is that the IV contrast that you had infused cannot somehow be suctioned out of your body.

People who have the once a year infusions for osteoporosis have also experienced severe adverse effects due to the high concentration of medication in a once a year infusion. Acute kidney failure has been an increasing occurrence and the FDA has placed "black box" warnings on the once a year osteoporosis infusions.

I offer this as an example of other IV infusions that can go amiss once the medication has systemically traveled through the body.

I do not know specifically what the physicians at Mayo can offer you . . . I was placed on dose of daily corticosteroids and Benadryl after both of my IV contrast reactions. You are now significantly further out in time that I do not know if corticosteroids + Benadryl would have any advancing benefit.

The reaction to the first round of contrast was felt to be a sensitivity. My second reaction was worse than the first, prompting the radiologist to surmise that the response is more an allergy/antigen response. It has been recommend that I avoid any further CT contrast.

You may also be advised to avoid any future IV contrast. Or, if it is a necessity, to have the rate of infusion slowed considerably over a longer infusion period + have one-on-one registered nursing to monitor you closely for an allergic response.

As far as imaging, MRI remains an option for me if I have future need for soft tissue imaging.

For me, the lesson: All medications have inherent risks.

With physicians using CT and MRI imaging like drinking a class Kool-Aid, it is important that we, as patients, take pause and make sure that we are fully aware of a test's potential risks and make sure that the test is necessary.

I hope that Mayo can provide some insight into the lingering and distressing side-effects that you are experiencing. Do not be surprised if you hear from the Mayo consultation: "I don't know . . . I have never heard of anyone having a similar response." There is a self-protective mind-set in medicine and a failure to admit mistakes and missteps. Blaming the patient is an all too frequent card played by physicians/hospitals to limit exposure to litigation and arbitration.

Most likely and most hopefully, your ebbing symptoms will reduce gradually over time.

- Karen -

Judy:'
Your reaction to the Omniplaque does sound severe in the recounting of your symptomatology.

You have my sincere compassion. Yours is a difficult situation, for the reasons that there is little physician acknowledgement and understanding of the sensitivity/allergic reaction and there are few options for ameliorating treatments.

The problem, sincerely, is the the contrast medium once infused and systemically distributed through the body cannot somehow be removed from the body.

The options are supportive care (basically, medicationsnor modalities to minimize distressing symptoms) and detoxification support (processes that aid the body in metabolizing and eliminating the infused contrast).

You mention that you were on corticosteroids and Benadryl but discontinued due to gastric irritation.

I would discuss with Mayo reconsidering both at a lower dosing. You were obviously on a dose that was too harsh for you. There is no set or known steroid dosing for an allergic response. Dosing is very much individualized. I have been on continuous corticosteroids for some 25+ years and feel that I have experienced almost every know side effect of steroids. It is we'll know that steroids are GI irritating, thus the usual counseling that steroids be taken with food to buffer their harsh effects. Certainly, you and Mayo can re-visit various steroid dosing scenarios. For example, I take my total daily dose spilt into 6 small doses spread throughout the day. You can look at using liquid prednisolone. I use a small oral syringe and dose 1 ml at a time between my cheek and gum tissue to avoid GI upset. You can also consider IV dosing if steroid a few times a week using dexamethasone at a local hospital infusion center (where cancer chemotherapy patients receive their infusions).

Honestly, you are going to need corticosteroids in the short term to dampen your body's immune response that is in overdrive.

Other options would be methotrexate (typically used for rheumatoid arthritis) or off-label use of any of the medications used to treat auto-immune inflmmatory conditions (ex. Remcade or Humaira). The caution would be presenting an additional IV infused medication where you have history of an acute sensitivity reaction (to the contrast). If you go with an IV auto-immune medication (Remecade, Humaira) be certain that you start with only a small fraction of the typical dosing and that it is done in a hospital setting with RN monitoring. If you have an acute reaction, you want to be able to stop the infusion. If you have a delayed reaction (say a reaction that only becomes apparent 24 hours later) you want to make sure that the doses amount is relatively minor in amount.

Keep written notes of your meeting and consultation with the Mayo physicians. Ask for copies of all relevant lab work and other testing. This information is yours. You have very write to have copies for your personal reference and filing in a 3-ring notebook.

I have had the misfortune of numerous mis-diagnoses and missteps over the years. This is unfortunately not uncommon when the disorder is rare or rather unusual. You are trending a health challenge with little know precedent or clinical studies or treatment guidelines. You are going to need to be prepared to be your own best advocate and advisor. Read and learn as much as you can about immune system condition an where the immune system goes on overdrive. For in reality, the sensitivity/allergic response that you are suffering from has many similarities to immune system dysfunction that can be helpful in creating options for treatment based on you and your uniqueness.

The teaching: I doubt that Mayo will have a ready plan of action to dispense for you. Rather, it will be a process of mixing and matching medications and methodologies to ramp down inflammation and an immune system in overdrive.

Keep in touch. I care.
- Karen -

Hi Seashell, so as expected, after Mayo did their neurology testing for EMG, it turns out this is not a nerve issue or neuropathy. They are referring me to a Mayo cardiologist. It might be a while before I see him or her. I did speak with my cardiologist regarding today's visit and after some extensive talking, he thinks it may be Buerger's. I have to wait until Tuesday of next week.

Hey guys, I am reading up on something one can take for repair of blood vessels. Read this article. It talks about something you can take to help regenerate: http://www.menshealth.com/health/6-body-parts-you-can-repair-yourself

Actually, I don't smoke at all. I only consume non-toxic foods (non gmo, non antibiotic and non hormone fed meats, vegetables, fruits, legumes, and vitamins. I only drink water. My cardiologist near my house is the one theorizing the Buerger's disease and I am talking to a functional medicine doctor regarding detoxification and rebuilding my vessel walls. I just spoke with Mayo and I should be able to finally meet their cardiologist on Tuesday of next week. I am going to speak to him about my cardiologist's theory and how well it lines up with what I m going through. I feel like in order to get better I have to beat the clock. I am wondering if extensive exercise can get blood to those narrowed blood vessels? I need to figure something out soon. This toxicity is no joke. I have a family to take care of. I'll be darned if i don't give it my all to try and get these toxins out of my body as best and fast as possible and tey to regenerate and produce stronger blood flow.

Karen, what did your dad take for this? I tried taking 5 mg Prednisone yesterday and it caused my veins to hurt even more.

Thank you, Karen. Is there any way to dilate the vessels or open them up somehow? I am afraid this might not just be in the arms and legs, but also in my head. I have been feeling a bit of similar pain from fingers and toes in my head. I am quite concerned. I am trying to keep my blood thin as much as possible.

Hi Susie, thank you for the feedback. I am hoping a diagnosis can be reached soon. I just don't want to worsen even more. It has been a difficult two months and I am trying to do what I can to stay positive. They do need me to be in my "new normal" current state to be able to test me properly. I do agree with that.