Hi, please can anyone help me regarding a terrible sinus/breathing problem Im suffering.Have been on methotrexate for 3 years and benepali for 2 years. Managed to reduce my prednisolone down from 30mg to 1mg over the last year and ra was under control and was starting to feel like me again.
A month ago I started with a blocked nose, nothing coming out and it was affecting my breathing. I was prescribed antibiotics and told to stop my methotrexate and benepali. After a week no improvement and had developed really bad conjunctivitis which I have never had in my life(im 60).
I saw a different dr, who gave me another course of antibiotics and eye drops.
No improvement so saw another dr (no continuity of care) and was told to stop antibiotics and to take 30mg of prednisolone for a week.
So a week has passed, and im still struggling to breathe, nose still blocked, feel very dizzy, no pain but exhausted.
Spoke to rheumatology who have said they will see me in a couple of weeks and not to restart ra meds until im better.
They not sure if its a side effect of benepali.
So its monday tomorrow and im guessing its another visit to the gp surgery and probably another different dr, just not getting anywhere.
Has anyone else suffered with such terrible blocked nose/sinus infections taking benepali or methotrexate?
I just feel all my airways are closing up.
Im asthmatic too so am on a steroid inhaler, plus my ra is now flaring because ive had to stop my meds.
I have never felt so ill☹
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cwtch29
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I had bad sinus type problems when I started Benepali but they reduced the longer I was on it and were gone after a couple of months. Have you thought it could be an allergy as you’ve not responded to antibiotics, there’s a lot of pollen about and I’ve been suffering badly the past few weeks with my eyes, nose and breathing, just a thought but I hope you get some relief soon 🤗
I agree could well be pollen and other things that cause all those symptoms you have, I am suffering with it at the moment and it is eased by taking the one a day antihistamine tablet , I am also on MTX and various heart and blood pressure medications. With the caveat that I am not a medical doctor. I would check with a pharmacist that it’s ok to take it , it’s a very cheap drug if you buy a generic one or the branded one is Piriton , but make sure you try the non drowsy one.
I know enbrel can affect your sinuses, Benepali is a biosimilar drug to it, I'm on enbrel and I'm having problems breathing through my nose. It really bothers me when trying to get to sleep at night, I feel really bunged up and I sometimes blow my nose so much I make it bleed. It's strange really because I'm trying to breath threw one nostril because the other one is so blocked, finally get to sleep, wake up and the blocked one is clear and the other one bunged up.
Do you sleep with your head raised, that might help. If mine gets bad I put some Vic under my nostrils as if I have a cold. Raising yourself up slightly takes the pressure of the nasal passages and throat.
I have been suffering with this on the left side of my sinuses since I had my second jab for covid at the start of the pandemic! Nothing to do with RA medication. Had side effects to it - Astra Zenica. The balance problems have been getting worse and now feel as though I'm going to fall. Has impacted on my walking exercise. Dr is now trying a nasal spray. It has also affected my hearing on the left. Hoping for a miracle, which I believe sometimes happens!!! 🤦♀️
I’m in the same cocktail as you, benepali, MTX and prednisolone. I’m also asthmatic and on high dose steroid inhalers. I’ve had sinus issues for years, and have seen ENT several times. I have Ankylosing spondylitis rather than RA, and suffer with inflammation of my jaw. ENT passed a scope to have a look as well as doing an MRI. His conclusion was that the inflammation of my jaw was filtering out to other nearby structures. I need to take a steroid nasal spray called Monetasone to keep mine under control. It was also causing me tender scalp, pulsatile tinnitus and tongue pain. Hope you get answers soon. It could also be allergy related. I rarely suffer with hay fever, but this year when the pollen count is high, it’s definitely exacerbated my issues. My respiratory specialist did test me for allergies last year and found I was moderately allergic to grass and tree pollen. You could try an antihistamine and see if you get any improvement. Check with your pharmacy re what doesn’t clash with your other meds. I’m on around 25 different meds, but am still able got use Cetirizine.
Have you had a covid test, sounds like the way I felt with covid? Also sounds like your sinus are very blocked always found sudafed very useful for that but maybe the doctor would be able to give you something better. I'm on benepali but not methotrexate and strangely have started snoring really badly now beginning to wonder having read all this does it actually effect your nasal passages although to be honest as it keeps the RA under control snoring it is!
Well again I am not a doctor but I have just stopped taking MTX as I have lung nodules and touch wood for the first summer in years I am not bunged up when I wake up. I also had ENT investigations and allergy testing and nothing came up. However I was told by my pharmacist that when he was on MTX he also suffered with hay fever like symptoms every summer which stopped when he changed his medication. I wonder if it just made me more susceptible to pollen etc as it only ever happened during the summer. I think that as well as the documented side effects of the drugs we are on there are others that aren't really obvious, particularly when we take a number of drugs at the same time. I think there may be interactions that are just never looked at as there are so many potential combinations. I have lost count of the times I have seen medical professionals about symptoms and they have said 'it's probably your medications'.
I have had sore eyes and a runny nose, I think the pollen count is high plus the warm weather doesn't help with pollen, especially as they grow oil seed rape where I live, and bloody sunflowers. I use mtz and benapali and font seem to have had any major probs, I use optrex for eyes every day keeps them from drying up, good luck.
Thank you all so much for your replies and advice. At least I know its not just me feeling like this. I think I might try the cetirizine. Im not actually taking my methotrexate and benepali as was told to stop them while I am not well, so the sooner I get this problem sorted the quicker I can get back on ra meds. I am due to have my 7th covid vaccine next week so will rearrange that, last thing I need it s reaction to that!
Hi cwtch 29, I'm on metho and infliximab infusion. Have suffered with blocked sinuses for years and no-one seems to know what to do. I have discovered somethings over time though, sleeping in a slightly raised position helps take the pressure off your nasal and throat passages. Also if I lie on my side and one nostril starts to block, I just move my head. Also putting Vic across the base of the nostrils as if you have a cold can help. I also have bronchial asthma, though I'm a none smoker. I've tried nasal sprays, nasal wash nightmare to use but they do help.
Hello. I take methotrexate 20mg & Hydroxychloroquine 400mg daily. For the last 3 years i have suffered with a tightening sensation in my nose at the top & sinus area, just one side..i too consulted the gp who gave me 2 seperate courses of antibiotics & a nose spray. It is not painful, just uncomfortable & makes my nose feel blocked. I have asked so many times if this is RA related & Im just told it is an allergy. In January this year things developed further with pain in my throat and pain swallowing, it was suggested then i possibly had Sjogrens disease..which runs hand in hand with RA..they referred me to Maxiofacial at hospital & Im still waiting for an appointment. I feel the nose, sinus & throat is all linked in some way. Sorry i cant offer you more help, but you are not alone..will keep you posted with outcome.
hi, I’ve been on Enbrel and now the biosimilar Benepali for 20 years and suffer from sinusitis on and off. It’s quite scary at times trying to breathe but I find Sterimar which is a natural sea water based nasal spray very good. Hope this helps.
My ent surgeon swears by Sterimar…he refuses to prescribe anti biotics or steroid nasal sprays & talking to his patients in the waiting room he seems to have struck on a solution to blocked noses…which can lead to sinus infections.
I had many sinus operations in the past,& since I have been with this doctor I haven’t needed any other meds.
Yes, I have had bad sinus pain since starting benepali 3 months ago. Also started a diuretic 2.5 months ago and both these meds cite sinusitis as a side effect. I have no blockage, just sinus pain and bridge of nose pain, headaches and bouts of nausea and dizziness. No sign of infection just that feeling of inflamed raw membranes. Have been using a steroid nasal spray but that has not helped at all. I have reverted back to using my NeilMed battery sinus irrigator which I relied on when I used to have chronic sinusitis and it is giving me some relief for the time being. Please be very careful about taking decongestants e.g, Sudafed, etc., take no longer than 5 days otherwise they can cause a very nasty rebound inflammation and congestion ( ‘I got the T-shirt to prove it’ and you don’t want to go down that road). Not sure what to do next as both the benepali and diuretic for blood pressure seem to be working for me. The sinuses have worsened over the last month so not really settling so losing hope that this is a temporary side effect. Will review in a week’s time and if no better then off to GP (oh joy!). Hope you are finding some relief.
Thank you everyone for your helpful replies. Really appreciate them. Nice to know Im not on my own with this problem. Always feel supported on this forum.
I get inflamed sinuses quite a lot and with me it's linked to dehydration, even though I don't feel thirsty. A pint of cold water always clears my sinuses, though at times I might have to drink 3 or 4 for them to stay clear.
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