perforated septum - RArelated

[Barbara_Stark]

anyone here developed perforated septum (hole in nose cartilage) with their RA?

if so, any advice on management or treatments? Hospital gave me antibiotic cream and didn’t want to advise/consider other treatment or advice.

When II first noticed it was there I thought I must have caused it myself as what on earth could cause that ? I couldn’t think of any other cause, but it is getting larger and I know that is definitely not me doing anything.

it’s quite a worry.

Medicine wise, I had methotrexate for my RA but it made me ill and then I had a period of time nothing offered I was happy to take, then I was given steroid and hydroxychloroquine, which got me out of flare up and took away pain quite quickly, and now I have been on leflunomide and steroid only as consultants preferred treatment for six months but I am in sixth week bedridden with flare up and have acquired the perforated septum.

PS I have never sniffed cocaine, lol. What with automatic opening doors before me and all the questions about recreational drugs at the hospital, I felt like a minor Hollywood celebrity!!!

[AgedCrone]

We cannot advise on the problem you have,If you haven’t already done so - you should make an urgent apt with your GP to get a referral to an ENT Consultant.Any sort of hole in your septum could become infected….& needs seeing by somebody qualified to diagnose & treat. I seem to remember long term use of some steroids…whether creams or tablets I don’t know….can cause this problem….but it definitely needs professional advice.

[Barbara_Stark in reply to AgedCrone]

thank you.

I have said in the post I’ve seen the ENT department at the hospital.

I was asking if other people have this problem with their RA as it can sometimes happen from the inflammation/meds etc. as you rightly state

If anyone could share experience it would be helpful to know about and is why I joined this forum, for peer group sharing.

I will only take actual medical advice from docs, of course. 🙂

[AgedCrone in reply to Barbara_Stark]

If you have seen an ENT consultant.I’m sure you have received the correct advice.But if it continues to get worse I would definitely ask to see that consultant again.Hope you get some help soon.

[Gnarli]

It must be quite worrying for you. Don't you just love the relaxed way medics have when being consulted for something like this? It may be nothing to worry about for them but a little empathy for you wouldn't hurt. I reckon you'llhave to go back to them and tell them of your increasing issues. I love your sense of humour btw.

[Tempo57]

I have recently had a sinus and polyp operation and have been prescribed steroid nasal spray for life to prevent polyp regrowth. I’d already been taking steroid nasal sprays prior to the sinus operation all to no avail. I am deeply concerned about taking steroids, particularly steroid nasal sprays, long term as a side effects, as stated in the drug literature, can result in a hole in one’s septum.

Could steroids be the cause of your septum damage? I don’t know but be aware of steroid nasal spray side effects if they are to be used long term.

[Barbara_Stark in reply to Tempo57]

thank you for your reply and I hope your op heals quickly and all is well.

I have been taking oral steroids only for my RA but that is not considered a risk for this xx

[Skyeblue2]

Hello Barbara.

This is my own personal experience and I'm sharing it as you have asked if anyone has a similar problem. I have both RA and PsA. I have not used steroids. I'm not giving you medical advice.

I have been under the care of my ENT department since I developed a perforated septum 2 years ago. The prescribed treatment of using a particular cream worked very well for me with the added use of a saline nasal spray morning and night. It is the thought of it that bothered me initially, but you get used to it. I have been told that a previous biological may have caused the perforation as it has caused me other health issues.

I think it's important that when you are able, to ask for a re-evaluation with the ENT Nose Specialist if you feel that the perforation has got bigger. I was offered something called a magnetic button if the perforation became difficult to manage and only 2 days ago, I accepted it. Early days but other than setting of security alarms at airports I'm feeling ok.

I wish you well and hope that you are up and, on your feet, again soon. Best wishes to you.

[Barbara_Stark in reply to Skyeblue2]

thank you sky blue

That is very helpful.

I did ask about septal button and how to manage symptoms and I’m afraid nothing was offered but the cream to use for ten days I was not supposed to manually apply it but to “sniff” it, which was hilarious

I’m not sure I’m great at this sniffing of substances and I’ll be smiling all day at the mental image of chaos following your nose through the airport detectors

I think that feeling of lack of advice was because it is only early days and I will go back for professional advice on management and potential button. As soon as able

I do agree that you get used to it as long as it’s not interfering with breathing.

[Skyeblue2 in reply to Barbara_Stark]

I wasn't asked to sniff the prescription cream (that's an event in itself) and I didn't have any problems with breathing but eventually it was the drying out of the nasal passage that led me to the buttons being place in the perforation. Good luck and take care.

[medway-lady]

That is a real worry and never heard of it before.. But I do understand about the cocaine as when my kidneys failed I had the doctors sitting on my bed asking very quietly "just between us" had I ever used anything not on prescription even supplements ??? my answer " no" and it turned out to be a prescription drug that did the damage. Have you been abroad recently ? although I expect you've been asked that already there are some very odd tropical diseases. I hope you find an answer soon.

[Barbara_Stark in reply to medway-lady]

I suppose they have to rule out these things, lol. One of my hubbys docs seemed convinced he was a secret alcoholic when he develop fatty liver condition.

Our lives are much less spicy than people might think!

[Leics]

I don’t have any experience of this but I just wanted to send some empathy out to you as it sounds like you’re really struggling atm. I remember being asked constantly whether or not I was a heavy drinker and drug user when the previous mtx dose of 10mg started to affect my liver and week on week my bloods showed another increase in alanine transaminase or ALT I don’t drink alcohol at all and at that time would have a small glass on very special occasions but not whilst I was on mtx. Makes you laugh though, I know they have to ask these questions but they should also believe you when you tell them. I hope you improve soon but if not ask to see them again ASAP.

[Barbara_Stark in reply to Leics]

thank you,

I was just saying something similar to Medway lady 🙂

Thank you for your kind thoughts xx

[Leics in reply to Barbara_Stark]

Well in my book even if you’re not able to help a kind thought when you’re struggling at least let’s you know that everyone on this platform has an idea of what it’s like when you’re having a hard time.