What is the matter with me?!

[DaffodilPower]

I am at my wits end...!

My symptoms: Severe nausea (worse after eating), vomiting on occasion, loose stools, bloating, loss of appetite, felling full, crippling fatigue, aching eyes.

I've had blood tests, all came back normal. I was also asked to do a stool test but as it wasn't liquid, just mousse-like, they wouldn't test it.

I do have Crohn's disease, and am on a biologic infusion (infliximab), though the IBD Team don't believe it's related as my levels are all fine.

This has been going on 2/3 weeks. I'm definitely not pregnant. I've tried limiting my food intake, but it doesn't matter what I eat, it's always the same. I'm nauseous through most of the day, and have had dizzy spells.

So if my bloods are normal, it's not my Crohn's, what the hell is it? I am drinking plenty, so not dehydration.. Staying out of the sun.. :(

Any ideas?!

Poor you. I think you should press to see your consultant. Maybe you are developing an intolerance to Infliximab? There are other biologics you could possibly change to.

Hope you feel better soon.

Thanks, Molly.

I have been told that the levels in my blood at the last infusion were within the limits, and they don't think it's that, but it must be something!

I'm seeing the consultant in a couple of weeks so I'll see what his opinion is..!

How long have you been on infliximab, and how often to you have it administered? Molly was suggesting you might have developed a hypersensitivity reaction to it. This wouldn't affect or depend on the blood levels: it would be to do with your immune system starting to produce a reaction to it.

Hi @Skiiltan, I've been on it just over two years, as a mono-therapy as I couldn't tolerate methotrexate and have a bad history with oral drugs.

I have it every ten weeks, it was 8 but I was getting awful headaches and the levels were high so they increased the gap between.

At my last one end of June I discussed my concerns and they weren't worried re me reacting to it, and put it down to a virus (unknown!).

do you think I should get it touch with them sooner rather than wait for my appointment in clinic?

@DaffodilPower - I would be inclined to contact them if you've been suffering these symptoms for a month. Even if it was a virus, TNFα (which is neutralized by infliximab) plays a role in immunity to viruses and it would be worth making sure they're aware that your symptoms are persisting. If you think it would be easier to get a GP appointment than to contact the consultant, it might be worth doing that. The GP is unlikely to make any suggestions regarding the infliximab but might have some idea about other possible causes.

Hi @Skiiltan I think I have the answer; I've got Shingles!

Not sure yet if it's a reaction to the infliximab or if I've just got shingles, but I now feel like I have flu, though the nausea has gone, and the GP put me straight on anti-virals..

I've never felt anything like it!!

Ooh. Nasty. There was some debate a few years ago about whether anti-TNFs increase the risk of shingles.

I hope you're feeling better soon.

Take care and get better soon.