sinusitis and RA: I have rheumatoid arthritis and am on... - NRAS

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sinusitis and RA

coralflux profile image
39 Replies

I have rheumatoid arthritis and am on 15mg of methotrexate weekly. Due to start a bio similar soon. For over a month I have been sneezing and have a runny nose (like half a box of tissues a day runny). At first I thought this was a cold, but now know it has to be somehow allergy related or perhaps a polyp. Of course it is impossible to see anyone. I have lost nearly all sense of smell and taste and it is making me miserable. Is it RA related? Methotrexate related? Has anyone else suffered this? I live in London so there is a lot of pollution around.

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coralflux profile image
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39 Replies
Gottarelax profile image
Gottarelax

Ever since I started getting RA symptoms (and before any medication) I've felt like I'm about to come down with a cold with runny nose, sneezing and a feeling of a lump in my throat. Not quite so bad as yours seems though ...A couple of tissues a day for me.

MadBunny profile image
MadBunny

Ive been like that for about 3 weeks and Ive also got itchy eyes It comes and goes and I think with me it's allergic rhinitis ,which I've always had so in my case I don't think its the mtx or RA. I was taking antihistamines for hayfever throughout the summer but stopped recently. I live in the Lee Valley area which is apparently bad for allergy and asthma sufferers, and I frequently go up to London.

Hobbledehoy profile image
Hobbledehoy in reply to MadBunny

If you test Covid-clear, it sounds v like allergy. If you’re not seeing a dr, talk to the pharmacist who does yr prescriptions & ‘knows you’. It is possible to buy v effective sniffers over the counter. Mine is extremely helpful & tho prescribed can also be purchased. Good luck.

MadBunny profile image
MadBunny in reply to Hobbledehoy

Thank you fo your advice.

AgedCrone profile image
AgedCrone

Have you done a LFT? Sneezing & a runny nose are now included in Covid symptoms…..of course hope it’s not that..but best find out before you are tested before you start your bio similar l 

Coralfluxx profile image
Coralfluxx in reply to AgedCrone

Yes, I did two tests a week apart. I do not have a cough or any throat symptoms. Also, because it is mostly my left nostril, I am confident it is not covid.

AgedCrone profile image
AgedCrone in reply to Coralfluxx

Well that’s good..but I have felt “off” for the last week….as has one of my neighbours…I have just tested Negative three days in a row.

Now I want to either feel better….or know why🤷‍♂️

TheBoys profile image
TheBoys in reply to AgedCrone

am on day 8 - i wish it would end!

TheBoys profile image
TheBoys

I would test yourself two or three times a day. I ve not been well for over a month culminating in being admitted to hospital for suspected clotting/cardiac issues. Tested negative throughout until at home when developed a sniffle. Now still testing positive 8 days later. My doc believes I could have been carrying the virus for all this time until I began shedding it in sufficient quantities to test positive.

Coralfluxx profile image
Coralfluxx in reply to TheBoys

I don't think I can afford to test myself 3 times a day. It just does not quite feel viral - but I guess that could still be a possibility...

AgedCrone profile image
AgedCrone in reply to Coralfluxx

You do know you can get the LFT’s on 119  if you are classed as vulnerable  don’t you? Mine arrive the day after I order them…even though we have a postal strike. 

Coralfluxx profile image
Coralfluxx in reply to AgedCrone

No, I did not know. I am rather unclear about how much the RA counts as a disability or what I can claim. I have seen a rheumatologist only once and seeing a gP is as rare as hen's teeth. So thanks, I will try ringing 119. Am I on register with someone? they did not even seem to know when I had my covid booster.

AgedCrone profile image
AgedCrone in reply to Coralfluxx

It does depend what drugs you are on…….I just know if you are on Rtx &your disease is active you should be eligible…but things change frequently…so you need to speak to 119.

Hannah-NRAS profile image
Hannah-NRAS in reply to Coralfluxx

Hi Coralfluxx,

You may also want to check out: nras.org.uk/resource/benefits/ and nras.org.uk/resource/inform....

Best wishes,

Hannah - NRAS Information and support coordinator

Kentishman profile image
Kentishman

I had a runny nose and post nasal drip (which cause throat issues) when I had methotrexate and this developed into blocked nose and sinusitis when I started biologics. The research I’ve done indicates a link between auto-immune conditions, immuno-suppression and rhinitis and sinusitis . I found that taking a nasal steroid for allergy and hayfever like flixonase relieved my symptoms. Eventually saw a ent consultant and they prescribed exactly the same thing.

strawclutching profile image
strawclutching in reply to Kentishman

I can relate to all you've just said Kentishman. Especially when I was on high doses of Pred the post nasal drip was dreadful. Since my Pred dose has come down, it's eased off so much. Can only put it down to the immune system being supressed and the baddies coming in to invade.

woodstar1 profile image
woodstar1

i have the exact opposite, a really very dry nose that's sore and having to put Vaseline up there to moisture it. I've had it for months and that's driving me mad! I was wondering if that could be anything to do with RA.

smilelines profile image
smilelines in reply to woodstar1

seems more like a medicine side effect to me.

Luludean profile image
Luludean

ugh!! I’ve had 3 bad migranes, giddiness and a headache on the top of my head going into my jaw. My ears feel pressured but no pain . This has been going on for 3 weeks . I just keep lying down . LFT was negative. I feel ill, and am imagining bad things. I actually saw a locum face to face !!!!He ordered blood tests . I don’t understand the results which came last night. I have had valve repair, persistent AF and psoriatic arthritis . So I’m scared. I never normally get migraines or bad headaches . I occasionally have sinusitis. It is strange so many people seem to be having similar problems ? I’m on heart drugs but no RA drugs, biosimilars made me ill, I am due to start Methotrexate ( I don’t want to , I feel toxic) Best wishes to you all.

Hannah-NRAS profile image
Hannah-NRAS in reply to Luludean

Hi Luludean,

Sounds like there is a lot going on for you. If ever you want to have a chat about RA, its treatment and living with it please feel free to contact our helpline.

Below I also provide some resources I hope may be of use to you.

- nras.org.uk/resource/unders...

- nras.org.uk/resource/methot...

- nras.org.uk/information-sup...

You can contact our helpline on 0800 298 7650 (Mon-Fri, 9.30am-4.30pm) or email us at helpline@nras.org.uk

Wishing you all the best,

Hannah - NRAS Information and support coordinator.

Leics profile image
Leics

I’ve had a cough which is much worse at night and when I lay down. Started about a year ago and I believe it’s because I produce too much sputum as my immunoglobulins are so low. I had a few sputum tests all negative. I’ve tried antihistamines and they didn’t make any difference I’m on prophylactic antibiotics so is it GERD due to them or just something I have to put up with. I did have about two months in the summer when it just went and I managed to sleep at night but I give up trying to get rid of it. I’m pretty chesty with it too.

madme1 profile image
madme1 in reply to Leics

I think antihistamines really messed up my immune system because I was told just before my diagnosis of ra, to take one every other day. This was to help deal with blocked sinuses, nasal drip, sore throat and ears etc. I stopped because in the end I felt worse, and feel it was the antihistamines dampening down my immune system so much that my body couldn't cope, but we are all told different things.

Leics profile image
Leics in reply to madme1

That’s interesting I’ve stopped antihistamines now too because they weren’t helping. Can’t make my mind up what it is. Tried taking antibiotics at different times because I have to take them every day and I know they mess my gut up. Tried probiotics too and not drinking coffee or tea and changing my diet. Also tried nasal sprays although I never feel like I have a runny nose so I’ve no idea what it is as I don’t really feel unwell because of it.

madme1 profile image
madme1 in reply to Leics

When I was taking antibiotics I would drink almost a glass full of water after each one. This seemed to help flush it through my system better and keep me hydrated. After so.e antibiotics I can become dehydrated extremely quickly and at that stage I'm fit for nothing. I am also experiencing some problems because of being on them for 3 weeks. I have stopped metho, and missed my infusion and can't get any answers from rhuemy nurse.

Leics profile image
Leics in reply to madme1

That must be so frustrating for you. Three weeks of antibiotics (I take it that must have been a full dose because of infection). I bet you’re having a few issues with your stomach and dehydration, I know how that feels but usually probiotics come to my rescue then. If the infection has cleared then you would think that the infusion could now be rearranged and metho restarted ? Hopefully your rheumy dept can get back to you soon and give you some answers. I would send a message to your consultant via his secretary if not.

smilelines profile image
smilelines in reply to Leics

my husband gets this when he has milk products. He is constantly clearing his throat a coughing.

Leics profile image
Leics in reply to smilelines

Yeah I don’t really have milk products except for a bit of cheese and that isn’t very often. I’ve switched to oat milk which I have to say if very creamy and great in porridge. I have wondered if it could be a lactose intolerance but can’t be sure. My husband is constantly clearing his throat and coughing so maybe I will see if he want to change to non cows milk. I still think in my case it’s because I make too much mucus which sits in my throat all night and then collects in my chest. I am unable to sleep upright or on more than one pillow because of my back and neck but I’ve tried almost everything I can think of and nothing has helped so far. I’ve even tried chewing sugar free gum during the day to try and break it up and copious amounts of water. Thank you for the information though it’s appreciated.

Runrig01 profile image
Runrig01

I have a lot of issues in my head related to my AS. My jaw is badly affected, and when it flares I get a lot of different symptoms. Even my tongue doesn’t escape with vascular lesions, pain and spasms. My sinuses were always an issue. I was referred to ENT about 3 x over the years. Each time I’ve had a scope passed and they confirm chronic inflammation in my sinuses. The last specialist said I should remain on Monetasone steroid nasal spray permanently. Within days of stopping it, I get the sinus pain and post nasal drip. They all say it’s due to the inflammation at my jaw filtering out and affecting nearby structures, including pressing on vessels and nerves. I do find my methotrexate helps, whenever I miss doses, like recently for antibiotics and Covid booster, my sinuses quickly flare again. Before MTX, I used Azathioprine which also helped, but at high doses it affected my liver, so was switched to MTX 6yr ago. Maybe an increase in your MTX may help, I currently take 25mg. Hoping you find answers soon.

coralflux profile image
coralflux in reply to Runrig01

the symptoms did start before I took a week’s break from MTX for my Covid booster. One minute I was fine then I started sneezing fit to bust. (I took the break because I thought I may get be fighting an infection and the nurse advised to take a break) at the time I was on a diminishing dose of steroids for a flare.

oldtimer2 profile image
oldtimer2

It might be worth (if you haven't already) using a saline wash out morning and night for a month. If that does not do the trick then try a steroid nasal spray regularly for a month? If it is an allergy or a polyp then it should improve the symptoms.

I have lots of problems with nasal allergy symptoms (it's mould at this time of year) and that's what I do - both are available over the counter.

coralflux profile image
coralflux in reply to oldtimer2

thanks oldtimer2. I have been trying with the saline wash for two weeks now (not much fun) and also am using a steroid nasal spray. I have finally managed to gain a gp appointment next Friday, so will maybe get a referral.

madme1 profile image
madme1

I get the same thing, sometimes after the infusion of rituximab I would get burning red patches on the cheeks of my face, this would fade after a few days. Afterwards I would constantly have the feeling of a blocked runny nose, sore throat at night and feeling that my sinuses were blocked. Still persevering with it though it doesn't seem as bad now I'm on remsima. Just got over a viral infection where it felt like someone had the top of of my nose in a vice grip. You could see it all under my eyes and hear it in my voice. Still have nasal drip and still getting blocked clearing nose and dry sore throat. I'm still fighting to get something done about it as so etimes it feels like there's a giant stomping round on my head. It has to be donething to do with the treatment or the ra itself.

Shonkie profile image
Shonkie

Not sure this will help if you have an allergy but I use a neti pot daily to wash out my sinuses with warm salty water. It keeps my nose much clearer and I seem to get less colds.

smilelines profile image
smilelines in reply to Shonkie

is there a trick so it does not hurt?

Shonkie profile image
Shonkie in reply to smilelines

It doesn't hurt at all, though if the sinuses are blocked it prickles somewhat.

madme1 profile image
madme1 in reply to Shonkie

Where can you get this Shonkie and what is a neti pot.

Shonkie profile image
Shonkie in reply to madme1

The usual answer as always is the internet! I was slightly wrong in what I said, it actually cleans out the nasal cavity rather than the sinuses but our experience is that this works very well in keeping the sinuses clear. The neti pot looks like a small gravy boat with a nozzle and every morning I make a warm water solution with a small amount of salt, tilt the head over and pour half through one nostril then the other side. Not uncomfortable except when the nose is very blocked which can feel prickly. It has really helped us. Good luck!

Mistress profile image
Mistress

Hi

I used to take methtrexate, now sulphsalazine, I have RA and Gout and regularly have a drippy nose, no idea why it just comes and goes as it wants. Have the heating on for just a couple of hours twice a day, could be that but who knows! Not seen any medics for 3 years now except for jabs praying I don't fall ill like everyone else....

RAreyna profile image
RAreyna

Ever since I added infliximab (Inflectra/Remicade) to weekly mtx injections, I've had to take a sinus decongestant at least once a week, in addition to a daily nasal steroid spray and sinus rinses. Both meds have sinusitis as a common side effect, so I'm surprised. It can hurt like hell. Drink lots of water & remember the good effects the meds..

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