Hello,
Does anyone experience any side effects from taking biologics.
I have been taking benepali (an enbrel biosimilar) for about 2 years now. Recently i have been getting throat issues. If i drink alcohol (even a small amount) my throat can swell. I never used to have this issue.
I also have a red strip across the bridge of my nose which no amount of cream makes a difference.
Do you think these are things that I should bring to the attention of my rheumatologist?
Thanks
Barry
Hi Barryjohn and welcome!
I’ve not had any noticeable side effects from Humira and Imraldi in the 8 years I’ve been taking them. But throat swelling sounds worrying - definitely don’t drink alcohol till you’re given the all-clear from your rheumy.
So yes, I think your rheumy needs to know about this ASAP.
Incidentally, just looked at your profile, are you still rock climbing these days? That sounds wonderful to me!
I don’t know that the alcohol is related to the biologic but that’s definitely concerning. I would probably bring it up to your primary care doctor. You presumably have easier access to your primary care doctor too
My worry is that if you’re having this reaction to alcohol, it may be something that increases in scope over time.
Sadly rock climbing did not last. My hands could not cope with it any longer. For me, exercise is the biggest problem. I can’t find anything to do that does not cause pain of some sort. I think 15 years of playing rugby in my youth has took its toll.
I think a quick call to the rheumatologist might be best. I don’t have much faith in the primary care doctors at the moment. The past couple of times I contacted them (which happened to be about my throat) they would not even see me. The pandemic has meant that they just give you antibiotics without even seeing you.
That’s a shame. You would think they would at least manage a telehealth visit. Then by all means, contact the rheumy first if they’re more responsive.
I’d be talking to my GP and rheumy about this today actually. Or rather rheumy as I’ve just noted how badly your GP is coping with pandemic issues. I never had an issue with Benepali and alcohol for the 11 months I took it but it didn’t really do much for my PsA beyond a 12 week stint in the middle.
I did get side effects from Imraldi and lasted a mere 8 weeks on it. They weren’t alcohol induced though. I pooed for England, not quite diarrhoea but significant, it reignited my asthma which had been very well managed for around 15 years or so and I was wading through an impending sense of doom all the time which was very wearing. So we stopped that asap. So get on the phone today.
In my experience rheumatologists want to hear about possible side-effects of the medication they prescribe straight away. They are definitely best-placed to deal with this in the first instance.
That doesn’t sound good. What are you taking now?
Consentyx. I’m now nearly 13 months on it and it’s working very well indeed. Thankfully. It’s only apparent side effect is that I sleep really well one weekend in four. I now look forward to that, very much.
Thanks for the advice. Contacted rheumatologist today. They said my last liver count was high and that my GP should have contacted me. Got told to stop for a couple of weeks and have another blood test. Glad I posted, because i would have just carried on.
Nose/throat problems occur for me too, and it seems to be one thing that causes another - from my own experience, at least. Benapali gives me a blocked up nose - really stuffy, especially in the cold weather with heating on. It just makes it worse. And I often get a sore throat - or a sore roof my mouth - at the same time. I also had little tiny mucoceles on my soft palate for the first year or two of taking Benapali, although they are much troublesome now. But they would come and go. I think it’s that the stuffed up nose causes congestion, which irritates the back of your throat and, in the case of the little cysts that I had, the saliva ducts would get blocked and cause them. I don’t drink alcohol at all, though, so don’t know if that would cause problems directly.
Is it raised ALT by any chance? Just asking 'cos I have some experience of that (as do quite a few of us I’m sure).
They told me I have a high liver count. I assume that is ALT. Does it usually mean that you have to change medication?
Not necessarily, but that’s a decision for the GP/rheum to make.
Seenie here, Barryjohn. I haven’t welcomed you yet. We’re glad that you joined us!
C
Could be other liver enzymes (I think they’re enzymes!).
I’m no expert, but from my experience with raised ALT and the reading I did at the time, it’s usually a traditional DMARD that’s stopped - often Mtx - rather than the biologic.
Please let us know how things pan out, if you like.
There’s certainly a link with MTX and Sulfasalazine etc with liver counts, but I’ve not heard it linked with biologics - but I assume it must be or they wouldn’t take our liver tests every three months. Of course the other thing that can shove up ALT levels is plain old paracetamol, which I’m guessing most of us take very regularly - but most drugs seem to have that ability, too.
The only thing I take at the moment is benepali. I try to keep away from ibuprofen and paracetamol if I can. My ALT level was 178, and when the rheumatologist looked over my previous blood tests, there was a gradual increase. Is 178 high?
5 to 55 ish is normal for ALT. My rheumy uses 50, which is annoying as mine was 54 this time around, so need to keep an eye on it.
But when I first started with the rheumy, they did a test called a GGT for liver, and mine was over 300, whereas the normal is, I believe 0-30ish. The rheumy was worried for a meds point of view (whether I could have them), but the GP wasn’t. I had a scan and nothing was found and everyone has lived happily ever after as they don’t do that test anymore! A similar scenario was an inflammation test should have been 0-20, I think, and was 109. And yet it was just the arthritis.
My point being, that just because a test comes back three or four times higher or lower than it should be doesn’t mean it’s anything to worry about. I find that all too often, we as patients have enough information on our health to scare the life out of us, but not the rest of the information which would probably put our minds at ease again! My understanding is that 3 times the normal ALT level is seen as a “mild” elevation.
If only I could talk to myself like that when I start worrying about test results!!!
It actually depends on the system your lab uses. Not all labs use the same system either and that’s just here in the UK. Your lab results should show the norm value and then where your value is on that scale which should then indicate whether yours is way off the scale.