Long shot - medical article hep c...

tesskerr

Goodmorning! This is an absolute long shot, but google has failed me a little bit.
My family is unlucky-ish when it comes to health (me, molar pregnancy that progressed to full cancer, sister - food poisoning has led to chrones disease, dad - sore hip that turned to septic arthritis that nearly killed him).

Anywho, it is now my mums turn, she has hep c, cause unknown, and has started a new drug, I believe interferon. She has been very sick, and now has severe fluid retention (25kg plus). I like to read as much info as I can when stuff like this happens, but I can't seem to find much online.

Does anyone know of a good source of info that I can access regarding, say, side effects that patients experienced in the trial of this drug?

Absolute long shot I know, and thanks to anyone who replies.

Ps. She is in hospital 10 hours away, and insists she's fine, so I am unable to talk to her drs. We have also found out our 2 year old nephew is in the same hospital for seizures so we may be traveling soon... But I really don't wanna have my baby there!!

moosebaby2011

Try drugs.com. It's one of the web sites that we used for patient information when I worked in a clinic. You'll need to know the type of interferon that she's getting (there are a few different ones, alpha and beta for example) but you should be able to get some information from that site.

tesskerr

@moosebaby2011 thank you, just what I was looking for.

mrspharmd

Google the name of your drug followed by "package insert". That is the most reliable source of info that you will be able to access online. Here is an example: https://dailymed.nlm.nih.gov/dailymed/archives/fdaDrugInfo.cfm?archiveid=12503

brideandbreve

Here's another resource that might give you some good information, too:

https://www.cancer.org/treatment/treatmentsandsideeffects/guidetocancerdrugs/interferons-alfa

Even though it's the cancer.org site, it has some pretty good info about the drug, how it's administered, side-effects, etc., etc.; I hope your mom is okay!

blondie10m

Interferon has been around for awhile now.  It is known to cause flu-like and be generally miserable to take, which is why the drug can have low compliance, but I don't think it should be currently in clinical trials as a monotherapy, it's already on the market.  One of the problems with hepatitis C is there are a lot of mutant variants and all drugs don't work equally well on all the variants.  A lot of research companies are running clinical trials with drugs as combinations with interferon as well as attempting to get away from interferon due to the nasty side effects and the long treatment course.  Is she on a combination therapy?  I know there are numerous companies working on therapies that do not require interferon and have less side effects.  But if it's a current clinical trial, you may not be able to get too much information until the trial is over and the results are published.  If it's a phase 3 trial, you may be able to look up clinical info from the phase 2 studies if it's published but it may be a subscription only journal.  Here is a useful website:

https://clinicaltrials.ifpma.org/clinicaltrials/en/myportal/index.htm

But there is tons of info out there on interferon itself around if you just google it, because interferon is well known now.

Most countries also have their own clinical trials website so you could look for that as well.

Good luck to your mom!

tesskerr

@blondie10m thank you. She tried to get into a trial here, but didn't make it in. I think she has been on this drug for about 3 months so far, and has been bed ridden the whole time. The swelling/fluid was sudden (25kg in 3 days!) so she was taken to her local hospital, then a hospital in a bigger city. They have drained some fluid of her abdomin, now her legs and feet have swelled. I know she is in the best place, I just don't trust drs here too much, just because they have let out family down, and both me and my dad nearly died because drs didn't bother testing us for things properly.

@brideandbreve thank you too. I am waiting for her to text me back the exact names of the drugs. I just wanna read somewhere that this is a "normal" side effect, they treat it like this, patient recovered blah blah blah. If not, then I have to think about going down to be with her, as she is all alone. And I guess having my baby in a crappy hospital away from my midwife! A big decision to make.

@aneubecker that is good too, and probably good to know for any drug really!

WinsyWade

I haven't read the other replies, but has your mother gotten a second opinion? I was misdiagnosed in high school, after giving blood, with hep C. I underwent test after test by both specialists and my pcp. Please make sure your mom actually has this disease. It is only obtained by sharing needles, sex and blood transfusion.

tesskerr

@winsywade I know what you mean, I am very pro second, third, fourth opinions now. Unfortunately both her and my dad have it. He is asymptomatic, and most likely contracted it in his teens, he got a lot of tattoos in his teens, then gave it to my mum.
Mum I think started getting symptoms in her 40s, she is 50 now.

Unfortunately we don't have the closest relationship, she is a huge wine drinking/borderline alcoholic, as are most of her friends. I spent so many years getting so frustrated with her, and that she should not really drink anything ever! I think until she started getting symptoms and getting sick, she didn't realize it was a big deal. She of course was not drinking on these meds, and I am glad my natural reaction to this is not "I told you so" but I still find it really frustrating.

cnwilbur1030

Just from my RN experience, the fluid build up could be related to the hep C in the liver and not the interferon, meaning it could not be a side effect of the drug. The liver is like a big sponge. Everything filters through it. When it is hurt like in hep c (that could have chronically scarred it without your mom knowing she had it) or alcoholic cirrhosis or cancer, the body fluids don't go through as well and build up in the body, mainly in the stomach (called ascieties-not sure spelling) or legs/arms (edema). Just a heads up if you don't find fluid side effect in your interferon research.