Hi everyone, I haven’t been in here much lately as I’ve actually pretty much got my PsA under control with Erelzi and Methotrexate- but I’ve got nasal sores, one in particular in my right nostril, that won’t heal. I know MTX affects mucous membranes, so could be that. I have sinus problems that may be a side affect of Erelzi. But does anyone know how I can treat the sore in my nostril? I bathe it and keep it clean, it’s on the septum so can be reached. But it’s painful and red and I don’t know when to give up and go to the GP. Easy to blame side affects, but I’m concerned now as I’ve had it seven weeks. I’d appreciate any input if anyone else has this problem or knows of it. Thanks in advance and Happy New Year!
7 weeks! Heck Katie, you are more patient than me! I’d head off to the GP now, that must be mighty annoying, but also worth checking it’s not some odd infection
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I know! I’m very patient ha ha and try to resolve things myself. I mentioned it to my Consultant Rheumatologist at the end of November and he said it could be Methotrexate- guess I maybe should ask the GP. Reluctant to take antibiotics as I don’t want to stop the biologic or MTX when they’re working so well, but perhaps I should 
Are you taking a folic acid supplement? I would definitely get it checked out, as is been quite a long time. But methotrexate can cause sores, and folic acid helps to avoid this.
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Ah yes thanks, I’m on max dose Folic acid, six days a week, just miss Methotrexate day. Going to ring my GP for some advice. I’ve had several sores in my nose that have cleared up but just this one that is persisting. Worried it could be infected. Lovely disease this isn’t it ha ha!! 
Hey chiming in. I have issues with nasal infections due to immune being suppressed. I have a bacterium cream that knocks livings off the corners of my mouth and nasal cavity. I had an issue of letting it go a bit to long. My doctor said it was an infection and he put me on antibiotics. He then explained that he thought I was leaking brain fluid and it was causing infections around the nose. So if untreated it could be lethal. So the moral of the story is to stay on top of it. Not sure if it applies to you or not but I thought I might mention it.
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Blimey Woodworm!! I’m definitely going to my GP tomorrow!! Thanks for sharing ha ha!! Seriously though thanks, I need to look after myself better and I’m sick of feeling yukky.
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You are welcome. It might not apply but I wanted to share on the side of caution as it could apply. I hope you feel better soon.
I’m hearing quite a few people on here and elsewhere that have sinus issues and/or nasal sores while using Benepali in particular which is of course a biosimilar to Enbrel as is Erelzi (isn’t it?). For at least two people one for nasal sores and the other for sinus issues that they just has to stop Benepali.
Others are just suffering along like you are @Katie909. I’m not sure whether mxt is always in the mix either, most possibly. However what’s interesting to me is that I rarely hear of people on Enbrel (with or without) mxt suffering the same either sinus issues or nasal sores. And I rarely hear of anyone on Humira (or its biosimilars) suffering either.
So if I were in your shoes Katie, I’d be wanting my rheumy to be explaining things to me and checking up on this issue quite thorougly. I’m on Benepali and have neither issues but I’m not on mxt as well and indeed presently I’m not on any DMARD also since we think its sulfasalazine which gave me 7 weeks of hellish diarrhoea neccessitating IV antiobiotics. As when I stopped it within 24 hours the diarrhoea magically vanished and has not returned at all.
Anyway just my thoughts based solely on anecdoctal observation.
That’s a really good point Poo. And I don’t recall the sinus issues coming up much, particularly not nasal sores, with Enbrel either. As a side note, so glad you got the gastrointestinal issues solved, and it was something relatively simple!
Yes but it took three consultants 7 weeks to work out it was probably caused by sulfasalazine hating the addition of Benepali. Sigh. It was a long 7 weeks, 5 of them being so ill I was ‘signed off sick’ from work and a weekend in hospital to boot as well. Only upside was that I lost some weight. Sadly that didn’t stay off too long either.
That’s very interesting and definitely something g I’ll pursue with my Consultant- Erelzi yes is a biosimilar to Enbrel, same as Benepali. I was put on Humira but had an immediate allergic reaction so was switched to Erelzi. It’s working for my PsA, alongside Methotrexate, but the side effects (if they are that) are awful. However I’ve been on Erelzi for seven months and it’s just become a real issue in the last few weeks. My GP has today prescribed a five day course of antibiotics as he thinks I’ve got a sinus infection. If it doesn’t clear up he’s going to prescribe steroid nasal spray for a few weeks, but I think by that point I’ll be ringing my Consultant to discuss alternative biologics.
Thanks for all you input
Just another thought, I had been on sulfasalazine for over 12 months with no issues with it at all. Benepali was added then in July. But I didn’t get the diarrhoea issues until 4 November, so 5 months later.
My rheumy said whilst it’s a rare occurence (that sulfasalazine didn’t like Benepali) it wasn’t unknown. So instead of changing the biologic like you’re thinking, we dropped the sulfasalazine instead. Her thoughts were that the risks to people using enbrel (or its biosimilars) for developing antibodies to it was lower than with people say on Humira or its biosimilars. The reason of course a DMARD is used along side a biologic is to try and stop or delay people developing antibodies to biologics as well as any residual efforts at slowing down disease progression.
The reason why the risk (of developing antibodies) is lower with the enbrel type product is because it circulates and instead the humira product attaches.
So as well as discussing a possible change of biologics, you should also be discussing dropping mxt possibly and/or swapping it to another DMARD. The reason why I didn’t change the DMARD is because I can’t tolerate mxt and have no wish whatsoever to try leflunomide.
Thank you, that’s very interesting. I’ve found however that if I drop Methotrexate (I’ve tried twice!) the Erelzi doesn’t work as well on its own and I tend to flare. My Consultant is happy for me to stop MTX but has said it’s my choice. I’m contraindicated for sulfasalazine and lefluonimide sounds worse than MTX which I have a love-hate relationship with. It really works well for me. If the antibiotics don’t clear my sinuses, therefore not a sinus infection, then I’ll go back to my Consultant for a discussion. Thanks again
I really wonder if everything would clear up (nose and sinus wise) if you just switched to good old enbrel instead, keeping the mxt. There might be a legitimate case for NHS funding for that in your particular case. I assume like me you were only offered the biosimilar too and weren’t switched over. Biosimilars aren’t completely identical to the original as I’m sure you know. It’s not like Neurofen and ibruforen (can never spell that one) where the drug is precisely the same but the supermarket version just costs less.
Sorry for sort of wittering on a bit but I find the whole lack of knowledge of biologics and what works with or against them just fascinating. I asked whether there was any comparable study between humira types and enbrel types (when going through my horrid diarrhoea issue and we were considering swapping the biologic, wrongly thinking my issues were caused by Benepali instead of sulfasalazine reacting to it) and I was told there’s no head to head research done on the two drugs, which frankly astounded me. So then I asked how on earth do you as a (rheumy) choose? I didn’t get an answer, he got a complaint from me (he wasn’t my normal rheumy either) and suddenly I was told to by a gastro consultant to drop the sulfasalazine and I got better. The gastro guy said given my symptoms that if I had not been on sulfasalazine already, he would be thinking of prescribing it for me, so he decided to be counter intuitive instead which thankfully and swiftly solved my issue. And note it was a gastric consultant who solved my issue not a rheumatologist.
But I was just flabbergasted that what I thought were pretty basic questions couldn’t actually be answered by that stand in rheumy who’s actually got a pretty solid reputation himself - we just clashed, badly it seems.
I believe that they’re all just learning and it’s trial and error a lot of the time!
Possibly. But I also believe in encouraging curiosity to get them to want to apply for research grants about the stuff that really matters to the patients too, rather than the ‘sexiness’ of discovering yet another new drug, much and all as all the new drugs are so incredibly reassuring. For so many of us.
Enbrel and Humira has been around a while in ‘research terms’, yet all the grants for research seem to go towards yet another new drug to include their biosimilars.
As a patient I’d rather they studied and understood more the drug I’m prescribed, including its biosimilars. I’d rather they understood the differences between it another similar one better so the choice of which one to choose as being best for a particular patient wasn’t just a question of putting one’s finger up in the air and seeing which way the wind was blowing that day. Still.
There appears to limitless interest in funding research to develop new drugs and limited interest in funding new research in to the drugs already in being. Which I think is frankly irrational, but then it’s all political and when if ever has politics ever been rational?! Just sad though that the likes of you and indeed I suffer (different) issues and they barely know why we do.
You’re right, but I have to say that my Consultant is fabulous but gets blocked by NHS funding restrictions and NICE. I see the frustration on his face when I go to see him with questions and theories and my slant on things, because he LISTENS to me and has often done his own research in his own time and come back to me with possible explanations etc. He’s one of the most caring health professionals I’ve ever come across who always goes the extra mile for his patients. It’s the ‘powers that be’ that decide what research has to be done and who need taking to task.
Soap box is now closed 
Hey, just responding that on any of the biologic when my immune system is adequately suppressed I get those things in the nose and on the edges of the mouth occasionally. It can happen with only a biologic or in combination with a steroid. I have had quite a few biologics and to me is seems that it just comes with the territory along with upper respiratory infections. I have only had two major sinus type infections but the mouth and other areas thing is common.
That’s interesting and I’ve never heard that before in relation to biologics- yes, upper respiratory infections but not nasal sores. I know Methotrexate can cause mouth and nose sores though. It’s very annoying!