Remifentanil / Fentanyl allergies in Lupus??? Or ... - LUPUS UK

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Remifentanil / Fentanyl allergies in Lupus??? Or multiple allergies in Lupus??

KnitSewPurl profile image
7 Replies

Hi everyone,Ok this week gone I was prep to have an endoscopy/bladder wash out. I have had one before also have had previous multiple surgeries before therefore been under general anaesthetic before. So , this time in the anaesthetic room while they were prepping me had the drip up about placed the mask on me it wasn't long I had a massive busting head exploding headache like my head was going to explode it was excruciating pain . Now , I am allergic to Fentanyl have always been allergic since I was expecting my 2nd daughter as I started to have a rash with the epidural they gave me and was advise by the anaesthetist then to not have any form of fentanyl in the near future. I was given recently another drug called Remifentanil which appear to be similar to Fentanyl. If any one here knows about this would be great . I also told the consultant anaesthetist about this allergic reaction during pregnancy during epidural stage and advised and he wasn't to bothered about it. I also had similar reactions to other drugs like dexamethasone and iodine for contrast dye infusions. These two were all post pregnancy. Has any one had reaction to drugs who are lupus or SLE, be great to compare notes . Or multiple drug allergies. As my drug allergies seem to be building up by the day. Even antibiotics I have multiple allergies I am building up. As though my body is building up some sort of auto immune in my body??. Or something...blood works appears recently all normal apart from levels of CRP slight elevated and i showed slightly borderline high levels of ANA apart from that everything looks normal as I am taking Hydroxchoriquine.

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KnitSewPurl
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7 Replies

I have had severe crushing chest pain with the local anaesthetic Lidocaine. Afterwards I had to sit next to a radiator I was so cold and eat a chocolate bar I was so hungry.

I also had a bad reaction to Gadolinium used for an MRI. 3 / 4 days after, I felt like I had tight rings around the front of my knees and heavy weighted cloak over my shoulders and around my neck.

My legs felt they had tight trousers on all the way up to my chest. Odd burning feelings in my flesh and changes in sensation. months in, the arm of the hand injected felt tight and the hand felt less flexible and tendons clicked.

Fortunately symptoms went. (I drank lots of water from Day 1 , and yet this still happened)

Three months in had short course oral prednisolone that coincided with most symptoms improving.

Also now increasing hydroxychloroquine - it also caused a flare I am still shaking off 5 months on.

StriatedCaracara profile image
StriatedCaracara in reply to StriatedCaracara

Maybe if the substance gets associated with structures in our cells then our immune system is more sensitive than other people's.

Maybe also the biochemical response pathways are different so different substances are made.

I have also reacted badly to two antibiotics recently both times probably only when I had a flare.

(Nitrofurantoin was one of them, normally I'm okay with this antibiotic , so I think bad response was flare dependant.)

Thanks for this post it is good to share these things particularly as they are not always well documented in drug literature.

KnitSewPurl profile image
KnitSewPurl in reply to StriatedCaracara

I had gadolium before but this is before pregnancy much younger than also for brain /ears to check the nerves. I was ok then with the dye. But dont know how my body will react now if given it .

BookishVibes profile image
BookishVibes

Hi KnitSewPurl,

I have SLE and I have drug allergies to Erythromycin and Septrin. Apparently the reaction to the Septrin was when I was a little child, so I don't remember it. The Erythromycin brought me out in a painful rash. I also have a severe allergy to cashew and pistachio nuts, and fresh pineapple makes me tongue bleed, weirdly, so I do have a few allegies anyway.

Hope that info might be helpful in some way.

Best wishes

BookishVibes

KnitSewPurl profile image
KnitSewPurl

Interesting ladies ,my allergies range from a huge range of antibiotics to several drugs . Until now I can only take Nitrofurantoin. I used to be able to take Augmentine until few year ago I developed a massive hive type rash all over my legs. And was advised not to have it. I cannot take tetracycline as it cause vertigo and sickness. Other antibiotics cause severe diarrhoea. Then when I had Morphine supps in recovery for one of my surgeries I developed severe itching was also advised not to have any Morphine in near future. I then had dexamethasone whilst I was pregnant with my daughter as was I was going in to early labour so they wanted to develop her lungs and other organs. This caused my head lot of pain and increase my pulse rate severely to 200. But I had to continue to take it for the sake of my daughter.

Fyi during this time was when they discovered I had no immunity in my body. Apart from very low BCG and very low HepB. They tried to vaccinate me 3 times for rubella post pregnancy all 3 times came back negative. Therefore did not hold immunity. There was no advance forward or inclinenation or even investigation as to why I lost all immunity and why I was not holding my vaccine.

Then I had contrast iodine MRI that effected my head again. The same like the dexamethasone.

I have always been ok with Pineapples all my life the suddenly was not able to have it developed severe blisters to them and could not have Kiwi as well. I also am very cautious with fresh oranges as well, ok when they are cooked with cakes but when fresh they leave me with diarrhoea.

KnitSewPurl profile image
KnitSewPurl

Oh yes I cannot have HRT creams as well tried them feel like it is drying me up from the inside . No matter how much I drank I could not replenish the amount of thirst. It was horrible. I had to stop the cream.

KnitSewPurl profile image
KnitSewPurl

Another one I remembered is Eye drops I cannot have 2 different types of drops one is the synthetic steroid drops the other one is the cream both of them irritate my eyes cream makes my eyes red the drops makes my eye very dry and forms Crystals. Only one I can use is Pure steroid drops I only found this out when I had my cataract op last year when the NHS bodge the job on it. Yup they when through my cornea. Till today my right eye is still not right eventhough my consultant says my cornea is ok. Yeh I went through a lot with that eye . They are never ever touching my other eye if it need surgery !!

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