I’m wondering if I could get some feedback from people with, or parents of those with, small duct PSC. I’m aware that an underlying inflammatory condition can predispose people to strange drug reactions and we’ve certainly experienced this. Just wondering if anyone was on any particular drugs around the time of diagnosis or before and who had some unusual reactions to those medications. For us these reactions lead us to seeking medical assessment, otherwise our diagnosis may have been further delayed. Anyone else, what drugs if any?
I had Doxycycline for about 1 years and some doctors believe that
My liver may have been damaged by this drug.
Hi, around the time I was diagnosed with PSC I had been taking a steroidal inhaler, Lanzoprazole and in the months leading up to the jaundice, Doxycycline. I find it interesting someone else has also mentioned Doxy.
DHZ, osteoarthritis is not an inflammatory disease/condition. There may be inflammation but the term ‘inflammatory condition’ refers specifically to autoimmune disease.
According to the Mayo clinic, an autoimmune condition increases the possibility of an immune mediated drug hypersensitivity reaction. My son, does have an immune mediated drug hypersensitivity to the drug he was on at the time of diagnosis. This has been established, on rechallenge on a number of occasions, his liver enzymes spike and he develops eosinophilia, lymphadenopathy and then everything returns towards normal on cessation of the drug. These reactions typically attack the bile ducts of the liver amongst other things. So, assuming he does still have small duct PSC and they haven’t made a mistake in their diagnosis, he appears to have two extremely rare medical conditions. So Mayo clinic’s explanation is that one predisposes to the other. Furthermore, these drug reactions have been found to result in other autoimmune diseases such as Hashimoto’s and type 1 diabetes later down the track.
James1, It is interesting. Minocycline is more likely to be a candidate for immune mediated drug reactions but doxycycline has been implicated as well.
Hi Mahmoud, That is interesting. Have doctors suggested how this damage may have been caused? There are two ways this could happen. It can happen directly or it can provoke an immune response that causes an immune attack on tissues when the drug is present in the system. It would be interesting to find out what they mean.
I’m not that much in immune system so honestly I’m not aware of such a specific definition of inflammatory condition. If it specifically refers to autoimmune disease. Then, it’s autoimmune disease, no reason for another specific term. But science world is quite a free world. Sometimes people tend to stick to something they like and other people can live with that without any problem. And, osteoarthritis is inflammation, and an immune system mediated process. Itis is a suffix meaning inflammation.
If you are specifically talking about autoimmune disease, I’d say your guess is reasonable. I think since the beginning when people started to understand the mechanisms of autoimmune disease, it’s reasonable to conclude that this kind of disease(s) has various manifestations. I didn’t have time to do a PubMed search on that subject. But it won’d surprise me that you could find similar cases like you met. I’m not sure how strong you can argue that one condition predisposes to the other. It could also be possible that a common cause predisposes to both symptoms. Because it’s an autoimmune disease, the immune system of the patient is abnormal in the first place. Unfortunately, practically it’s probably impossible to design a study to find out the real scenario.
Sorry, no time to clean up my post.
I am finding examples of people with PSC who also appear to have immune mediated hypersensitivity reactions. Drug hypersensitivity reactions appear to have a genetic basis. The histology associated with both PSC and DRESS for example, can be identical. I thought it would be interesting to see if many people here have experienced drug hypersensitivity although these reactions are difficult to identify. Both diagnoses are diagnoses of exclusion and drug reactions are frequently overlooked.
Interested in people’s stories at this stage.
Let us all be reminded that this site is a patient centered site. None of us are experts in these fields and if any of us are medical providers you cannot exert your expertise to shame another member here. This is one reason we are very careful of allowing anyone in the medical community into these forums. We need to be respectful of one anothers concerns and not nit pick their questions. Let’s be helpful to one another and nothing else.
Mark - Moderator
I did a few quick PubMed searches and couldn’t find much about PSC and drug hypersensitivity. Still not much returns after twisting key words. Then think again, it’s no surprise at all. On other side, it’s reasonable to see autoimmune disease patients develop certain drug hypersensitivities. But on the other hand, these disease conditions are way to complicated to figure out a clear explanation. For us PSC patients, our immune system is wired differently from normal people. Some had PSC first, then UC. Some had UC first, then PSC. My UC was diagnosed 7 yrs after my PSC. There was nothing wrong with my colon at the time of PSC diagnosis. It’s very hard to say which one is predispose the other one. It could just be all things show up down the road one by one.
I also did a search with the key words of ‘inflammatory condition’ and I don’t see it specifically refers to autoimmune disease. Autoimmune disease is an inflammatory condition, but the other way around is not necessarily true. Interesting thing is that my first hit actually is about osteoarthritis. As I said before, in science field, some places tend to have their own special terms and stick to it as a tradition. Other people will just use more defined and well-recognized terms. I have a good story about that but too much to write it down. But one interesting hit is this article, which is also the best match for my keywords:
Periodontitis and Alzheimer’s Disease: A Possible Comorbidity between Oral Chronic Inflammatory Condition and Neuroinflammation. Teixeira FB et al. Front Aging Neurosci. (2017)
It’s kind of a big surprise that periodontitis can be directly connected to Alzheimer’s. Of course, correlation does not necessarily mean cause and effect relationship. But then, based on these information, it’s reasonable to think that PSC patient can develop immune system-mediated responses to certain drugs.
Ok DHZ, irrespective of your pub med searches, ‘inflammatory disease/condition’ has a specific meaning. But you know what? Unless you have a drug hypersensitivity maybe post on another thread and leave this one alone. As you said, you’re ‘not that much in immune system’ so leave it for now. I’m an Immunology major, I’ve read deeply on this topic but I’m not here to argue with you, and really, PubMed searches do not an education make.
I have an autoimmune disease which predisposes me to other autoimmune diseases. I also have drug hypersensitivities. My son, as I explained, appears to have delayed type hypersensitivity reactions and has been diagnosed with PSC and UC. I’m interested in other people’s stories, not your PubMed searches.
since my small duct PSC seems to be “solid” I react to drugs strangely: depending on the kind of drug my body reacts not at all or very late or quite different from expected. Sometimes new medication seems to work for a while and then it quits working or turns to negative effects. I’m just a patient, not a professional, so don’t expect scientific language.
Thanks Rippi. Do you mind telling me a bit more? What sort of negative effects have you noticed?
sorry for answering so late, but I had problems with my Internet-account.
One area is around effects of anesthetics: at the dentist it took very long (and three shots) to take effect, afterwards recovering from it took about 5 hours; on a surgery they had problems to put me asleep, afterwards the recovering process lasted for the rest of the day (I was first in the morning!), I woke up and fell asleep right away. My husband told me later, that medics and nurses looked after me once or twice per hour and were quite worried. We had them warned before, but seeing it was different from just hearing of it.
Medicine to support digestion “functions” for some time (2 weeks to about 3 months), then it does nothing or produces aching in my abdomen. Something different functions for a while and then … I have given up to try such medicine and try to be very, very careful with my nutrition. Our experience is there that any kind of industrially processed food is apt to result in problems (aching, sweating, heart beating). We assume that those chemicals they use to help production or to make it last longer are poison for my liver and my digestion.
When I catch a virus, a cold or something like that, it takes extremely long to recover from it, several months to over a year.
That’s about it for the moment, if I remember or experience other situations I’ll come back to you reporting. By the way, may I ask what’s your special interest in that matter?
Best regards Rippi
Thanks for your reply Rippi. Interesting about the anaesthetics, my son has very similar experiences to you although it took him about 6 weeks to recover from his endoscopic ultrasound and his liver enzymes kept rising and rising then after about 2 months they came down sharply and he started to recover. He was so unwell without any reason as he had no blockages anywhere that could be detected.
So my interest comes from the fact that my son does have a drug hypersensitivity reaction to medication he was on at the time of diagnosis. This has been established. I’m just wondering how many others have both PSC and drug hypersensitivity (allergic) reactions or think that they may have, even if it isn’t confirmed by a doctor.
Interesting, I also require a abnormally large amount of sedation for EUS and childhood ops etc and take ages to get over colds/flu. Had dental work done recently due to being prepped for bisphosphonate treatment (that I’m not sure about starting) and the anaesthesia and metronidazole seems to have slightly increased the raw RUQ sensations that had ceased recently.
I think the thing to do is to chart your LFT changes as well as your Eosinophil count and to see what happens over time. I guess so little is understood still about PSC the more data people collect about their own responses to treatment, the better.
Very true about looking at the history. I have monthly blood draws, and just by themselves, the scores don’t say anything to me. But in being able to go back 24 months, it is much easier to spot trends, issues…
Have you noticed any particular patterns Jeff?