Persistent nasal trouble, nothing is working!

Hi Anne. I'm been suffering similarly for 8 months. I've tried three steroid sprays and find Flixonase to be the least potent compared to Nasonex and Dymista but everyone is different. They worked for a while but aren't cutting it anymore. Today was my last day of a 5 day course of Prednisolone for both chronic swollen turbinates and asthma but it hasn't made that much of a difference. Has anything else worked for you? Did you have allergy immunotherapy? I can't start until April and am relying on it to help

Hello Saturn,

  Many, many years ago I started a course of injections to try and densensitise.  Sadly, in those days I suffered bronchitis and after the third injection I was quite poorly, so was unable to resume.  I expect these days it's all a different way of doing it, calling it immunotherapy....haven't been offered that.

All illness are about our immune systems and getting it to work properly....strong immune, strong and healthy body.

I don't think the 5 day course was long enough that you were prescribed.  Mine is usually a 20 day reducing method, as you may have seen my previous posts.

I only go on about the medication that's helped me.  Prednisolone mustn't be used too often.  I only end up on that when I'm desperate, which in the past has been maybe every other year, or two.  My last course was April 2017 and I'm happy to announce I've been pretty good ever since.  However, like you've said, the sprays don't work for long enough.

I think you'r in England for you to mention the Fixonase spray....other countries can't seem to get it.  But, you will need to now ask for the stronger Drops, Flixonase Nasule Drops.....administered with head hanging over bed.  I've had to use them this morning as my right ear blocked up.  I give it 30 minutes, give a gently squeeze of nostrils, blow and the tubes work again, for another week.  My main problem is ETD.  I'm trying to reduce the Cetrizine antihistamine to every 2 days now.  But again, had to take one this morning.  Post Nasal Drip started again, plus getting blocked up during the night.  the Nasules will sort that out too.

I too suffer asthma, but that's been controlled for years using Qvar inhaler...no problems these days !!

So ask your doctor to either prescribed a longer course of Pred.  Alternatively try the Flixonase Nasule Drops.  I'm sure you'll find relief after approx 1/2 weeks, possibly sooner.

I know how awful this chronic condition is.  You're lucky you don' suffer Eustachian Tube Dysfunction too, as that is far worse than swollen turbinates.  I use Otrivine when I get blocked during the night....reduces swollen lining in the nose and after approx. one minute I can breath again.

It's all the inflammation that's causing the problems.  Have you been checked that you haven't got polyps up your nose.  I have, but have shrunk due to the Nasules, that I now only use once a week.  I did have surgery to remove the polyps many years ago when I had sinus surgery too....sadly, suffering allergies and asthma they grow back.....causing considerable problems with breathing.

I'm due to see my ENT consultant on Wednesday and hope he doesn't take me off the Flixonase Nasule Drops.

I do hope you get sorted soon and let me know how you get on and try and answer my questions too.

Thanks

Anne

Thank you I will send a PM about this so I don't distract from Yorisou's query.

Hi Anne, thanks for your reply

I do live in england yes! I did ask for some drops when I visited the doctors last week but he tried to tell me they didn't do them.. which I knew wasn't true. I feel like im just getting brushed off by these doctors it's incredibly frustrating. 

I am booking myself in the urgent clinic tomorrow, as i felt something funny in the back of my throat this evening. I had a look in the light and this thick kind of sludge just fell down. Gross I know but im really weirded out by this now! It's got me thinking maybe theres something else going on with my nose/throat. I'll be asking for a different doctor and i'll make sure to ask for the drops and some sort of steroid tablet. 

Inside my nose is just completely blocked up now with these growths, at this point im not even sure if its the sides of my nose being so swollen or other growths but they have these yellowy marks over them. So i'm guessing I have some sort of infection too. 

I went and bought some primrose oil tablets and quercetin tablets which was recommended for natural immune support, so i'm also hoping these will help. 

Thank you barbara. I'm returning to the doctors tomorrow in the urgent clinic due to whats happened this evening, but i'll be requesting a different doctor as I feel as if i wasn't taken seriously last time. Hopefully I can get somewhere tomorrow, and maybe come out with a different type of medication. 

Good morning Denise,

I have the same problem as yourself.  I too use Flixonase Nasule Drops, the Spray stopped working for me.  I suffer Rhinitis, Allergies, Sinusitis and Eustachian Tube Dysfunction (blocked ears).  I see my NHS ENT consultant twice yearly with these issues, he's brilliant !!  I have had sinus surgery in the past, but problem always returns.  I'm now only having to use the Flixonase Nasule Drops approximately every 7 days, once a day now.  But not too sure what will happened during the pending Autumn and Winter months....will probably be back to using it every day.  we've had such a brilliant Summer this year in England and once the pollen ceased I seemed to improve.

It seems other countries are unable to get the Flixonase Nasule Drops as I've been in conversation with people on this Patient Forum.  My nephew, who is a pharmacist in the US, has told me they can only get Flixonase Spray over there.  Shame for these people as the Drops really DO WORK !!

Regards

Anne

I only just noticed your reply.  I’m glad you seem to be doing well. As I mentioned, I seem to have relapsed as my taste and smell is almost non existent at the moment, which i believe is because the spray is not reaching the correct area. I am worried I could have a polyp growing as when I use the spray then quickly lay back for a few minutes, it’s not absorbing, I can feel it going down my throat when I stand up.  

More strangely, when I do get some smell and taste it disappears when I sit or lie down. I have no smell/taste when I awake in the morning. I would love it if you could remember to ask your consultant the significance of this if you remember?  It’s driving me insane, I feel I have to stand up and walk around all day.  I’m seeing a doctor again on Friday, but I don’t hold up much hope. 

Thanks for posting. 

Dx

Hello again Denise,

I haven't been on the Forum for some time, but just seen your message in my in-box.

So sorry to read you're still suffering.  Remind me, are you using the Flixonase Spray, or the Drops ?  If you're using the drops you must lie down with your head hanging over end of your bed and remain there for at least a minute so that the drops can penetrate, I move my head from side to side too.....I never feel them dripping down my throat.  I'm now only having to use them every 2 weeks at the moment.  However, as soon as my ears block up again I will probably have to use them more often.

I have noticed since I haven't been using them so often that my sense of smell and taste is nothing like it was when I was using them every couple of days.  However, I don't want to use them more often than necessary due to them being a stronger steroid and I certainly don't want them to stop working like the spray did.

It's miserable not being able to smell and taste, so I understand how you're feeling.  How often are you using the drops (if they are what you're on)  In the beginning my ENT consultant advised me to use them morning and night for 6 weeks.  That's when I noticed my smell and taste return.  Then I started to try every other day, then every other, other day.  Until it was once a day every seven days.  Like I've said in my previous message as soon as the Winter is upon us in England I'll probably be having to use them more often.  They certainly shrink my polyps.  I was told at my last ENT appt that I have one tiny one up my right nostril....maybe this is why when I lie down at night I get completed congested on that side and then have to have a squirt of Otrivine to

allow me to sleep, otherwise I'm blocked up all night on that left side and also end up with a sinus headache.

Let me know how you got on at the doctors.

Regards

Anne

Forgot to mention in message above.  Failing all else, ask your GP for a 20 reducing course of Prednisolone steroid tablets.  They will definitely help you.  You will regain your sense of smell and they will shrink or get rid of your polyps.  They've helped me in the past with my Eustachian Tube Dyfunction and Asthma (asthma been controlled now for a long time).  You'll only need the once course to sort you out, then revert back on to the Flixonase Drops.

Anne

Thank you for coming back to me. 

I used the flixonase drops very successfully for about 10 years, evening and night, every day, unless I forgot. It’s only the last three months that I have had to use the spray as I now live in France.  I try to use them the same way as the drops by sitting on the bed, spraying then quickly lying back with my head over the bed for about two minutes. 

I see the French doctor on Friday, and language permitting I am going to beg for 20 day prednisalone course. Do you think the fact that my nose doesn’t always feel congested, just inflamed/buzzing and I still can’t taste unless I remain standing for hours, could be that there is a polyp blocking the air flow? My most tender area are the cavaties above my eyes. 

Its so nice to speak with people who understand how desperate this condition makes you feel. I feel cut off from the rest of the ‘normal world’ and see no point in socialising anymore. 

Thank you.

Denise 

Morning Denise,

Ahh, don't feel like you're alone, there are so many of us out there that

are feeling just like you do.  It sounds to me as though you are suffering from Sinusitis.  I get dreadful pain just above my eyebrows, not often these days in the cheek area.  You may be helped with a course of antibiotics too.  I know doctors aren't supposed to prescribe them these days, and we all understand the reason for that.  But my friend suffers sinus issues so bad she has regular courses of antibiotics that she swears really help her....I have found the same too at times.

You don't mention that you suffer ETD (Eustachian Tube Dysfunction).  That's so bad and makes us all feel miserable and withdrawn.  Thankfully, I've had a nice long break from it this Summer, but dread the Winter months when the mould comes on the trees.  I've experienced 6 perforations in my left eardrum over the past couple of years.  

I'd really like to try going abroad again next year for our holiday, haven't risk flying for 5 years, may I think I will give it a go.  I know most peoples ears block up when flying, but if we suffer ETD due to mucus getting into our Eustachian tubes it's so very hard to clear them and miserable suffering for several days before they eventually pop, if they pop at all.  Try taking an Antihistamine daily, you may find they will help you.  I take a daily Cetrizine, which helps dry mucus from sinuses up.

Your doctor will see any visible polyps by putting a scope up your nose, and yes they make us feel very congested.  I used to hear mine rattling when I blew my nose, when I was trying to clear mucus...nothing came down.  Do you suffer many headaches ?.

I'd post you a box of Flixonase Drops through the post, but I don't think that would be allowed, would it ?  I'd do anything in my power to help anyone that's suffering.

If you'd like to speak privately you can find me on f/b.

I've suffered these conditions for so many years, eventually, the ETD caused me to contract Bacterial Meningitis, losing the sight in my left eye and suffering vertigo when lying down too flat.

Do let me know how you get on.

Kind regards

Anne

Hi Anne. 

Thank you so much for your reply. 

I visited my dr here, and I have to say she was very understanding. She ordered an X-ray of my sinus, that happened within 4 days (today) and you get a folder with a report there and then, I take this back to my dr on Friday for her to look at.  She promised me an appointment with her friend, a top E.N.T specialist, if she can’t solve it.  They are very strong on preventative treatment over here. 

Last week she gave me a different spray called Derinox which has actually improved things. She said if the X-ray shows infection she will give me antibiotics then the 20 day prednisalone, if no infection she will just give me prednisalone. 

From what I can tell the report says just thickening of the sinus linings, I think it must be down to allergies and my rubbish immune system. I think I will ask to see an allergy specialist. 

I am so grateful for her attention, I hope it works, I have to say your situation sounds more severe than mine. I feel for you and what you have been through. 

In reply to your question, I don’t get many headaches and don’t actually feel that congested, more inflamed. I suffer with inflammation in various areas, but I am allergic to all anti-inflammatory medications! 

Awh thank you for your offer of nasules, if all goes to pot I may request that from you. 😊.

I can recommend the short ferry crossings with DFDS from the uk to France for a lovely driving holiday if you decide not to fly. 

Ill stay in touch. 

Dx 

Morning Denise,

I've been wondering how you got on and so pleased it looks at last you are getting sorted.

Personally, I would waste your money on allergy testing.  I've

had several sessions of these tests and came back negative.

The last one however, which I already knew about came back

cats and dogs dander and certain trees.  My ENT man told me

that there are so many potential allergens out there it would be impossible to test for all, which is true.

Take care Denise and let me know how you 

go on.

Best wishes

Anne

Just checking in. 

My dr was fab. Because my X-rays showed thickening of the lining of my sinuses, she erred on the side of caution and I have antibiotics and a 20 day course of  prednisalone.  Small worry I have is she has prescribed 80mg! for 5 days, then 40mg for the last 15. I’m sure she knows what she is doing, but all the sites I’ve googled say maximum of 60mg for allergies. As this seems a serious drug with lots of warnings, I am a bit anxious about why the 80mg. What do you think?

She has said to carry on with the Derinox, has also prescribed a strong antihistamine tablet.  I think she is throwing verything at the problem to shock my body into re-start. 

As I am resident in France now and qualify for the carte vital , I only pay for 30% of my medical costs, so I will probably get the allergy testing done, with a specific request to test me for anti-inflammatories, as it would be nice to be able to take them when I flare up. I haven’t tried for 10 years and would like to try them again.  I would also like to drink some alcohol occasionally, how do you get on with alcohol?

My taste and smell came back on day two, so at the moment I am over the moon. 

Fingers crossed. 

Hope you are doing well. 

Dx 

Morning Denise,

Nice you've got back to me and so happy for you that

your taste and smell have returned.

What is the mg of each of the prednisolone ?  Mine have

always 5 mg each tablet.  Can't remember exactly now

the amount of tablets I took....but on memory I think I

took 6 tablets straight off @5mg each tablet=30mg.

Obviously, when I was on them for longer (20days)

I had to take more tablets in one go.  But really can't

remember just how many.  When you are on a higher

mg they have to be reduced very carefully, as they can

have side effects.....have you started them yet or is it

the spray that you've been prescribed that brought back

your sense of smell and taste.  If that's the case don't

bother with the prednisolone....only use them for when

you get very bad again.

I've found the longer I leave off the Flixonase Nasal Drops

my smell and tastes goes again.  However, I only use them

for clearing my Eustachian Tubes and blocked ears are so

miserable to suffer.

Would you explain to me (1) what's the mg of each tablet

and (2) how many do you have to take in one go and for

how many days until you start to reduce them.

They will certainly help you, but if you're like me will suffer

insomnia for the whole period you're taking them.  Sadly,

this is a common side affect.

look forward to your reply.

Kind regards

Anne

Well, first of all, how interesting, yes I have had some insomnia, I reckon the dr thought of this though, because she gave me diazepam to take at night to aid sleep. 

My prednisalone tablets are 20mg each, 4 in the morning, so 80mg a day for five days. Then drop to 40mg a day for 15 days. 

Im not sure which is keeping the smell and taste going to be honest as I am using the spray and prednisalone as she instructed. 

Fingers crossed I’m not overdoing everything. 

I agree with you that the longer you go without the flixonase the weaker the senses. I only ever managed to reduce the dose to every two or three days at best.  How is your taste at the mo?

dx 

Morning Denise,

That dosage looks fine and it's working, so that can only be good.

As for me small and taste only slightly back, which is a nuisance.

However, for the past 3 days I've been using the Flixonase again

just mornings, so will see if things improve further.  

I suffer quite badly from a blocked left nostril and wondering if I

have thickening of the lining on that side.  I have noticed though

that since sing the Flix again it has helped and last night I didn't

have to use my Otrivine nasal spray to unblock that left side to

help me sleep.  I also get awful sinus pain over both of my eye-

brows, that's gone too at the moment.  Mine is all congestion and

inflammation.

I was also informed to use both Prednisolone and Spray at the

same time, so that's fine for you to do too.  Maybe you have

polyps (was that confirmed) if so they make us lose our sense of

smell and taste too and block us up.

So happy you seem to be getting everything under control.

Stay in touch.  I am on f/b if you'd like to find me and message

privately.

Kindest regards

Anne

Hi Anne

just thought i would catch up

My treatment all went well and my taste and smell are pretty good, although i still get some slight congestion i would say to everyone on here that i think my dose of prednisalone was too high and i think half the dose would have been fine i also think i should have reduced the prednisalone gradually over a longer period of time i had terrible sweats and flushes whilst on it and for 4 weeks after i've since read about loads of people suffering from fast withdrawal. im just doing the nasal steroid spray twice a day now, fingers crossed.

My allergy testing came back negative, but my gp was not surprised and is sending me for much more complex testing, hopefully find out why i cant use NSAID's too

How are you doing at the moment?

Best wishes

D

Morning Denise,

I completely agree. When you're on a high dose of Prednisolone they must be reduced slowly, no wonder you suffered side effects. I'm doing pretty good at the moment. However, the Winter will soon be upon us and sure things will change with me. Ears have been pretty good and even managed to get through several months not having to use them. But once again back on them from yesterday.....right ear blocked !! I only try and use them maybe every 2 days or so, until everything has settled back down again. I'm still having awful trouble feeling blocked from my left nostril though. I've been using Otrivine for a few months now just to enable me to sleep, otherwise I'd be blocked all night long. Probably need surgery to sort this out, but really don't want to go through that. Maybe if I used the Flixonase Nasule Drops for the recommended 6 weeks morning and night it may get rid of the inflammation. Prednisolone are good for sorting out inflammation, but after a few months it usually all comes back. Rhinitis is such a nuisance! I'm really not surprised your allergy testing came back negative, mine did too. However, there are many things inside the home and outside that aggravate me. I guess it's something we just have to put up with. I'm really interested to know what other tests you're going to be given, do let me know.

Lovely hearing back from Denise

Best wishes

Anne

Haha, I should have read through my message before I clicked send. The way I've written, is like I don't use my ear. I meant to have said that I haven't had to use the Flixonase Nasules for a couple of months....we all need to use our ears LOL

Hi Anne

lol, i got your meaning.

I think perhaps keeping the flixonase going for a while must be better, because ive also read it can take some weeks of continuous use to take effect.

i just got my appointment through for the testing and i am actually quite surprised i have to wait until February, which is an unusually long wait over here. Oh well, ill let you know. Fingers crossed for a healthy happy winter.

Best wishes.

D

Morning Denise, Good luck and don't forget to let me know the results. Betting all comes back negative....sorry to sound negative LOL

I'll take this opportunity to wish you a Merry Christmas. Seems hard to believe it's come round so quickly. How fast the years roll by! We had such a brilliant Summer this year in England, first really decent one in forty years. You know yourself how poor they can be, except for the odd week here and there.

I'll be attempting my first flight in 6 years next year in May. I'm going with a group of friends to Spain. My husband and I will be staying with friends who have an apartment out there, the rest will be renting one. The reason having not holidayed abroad in all this time, is due to my Eustachian Tube Dysfunction and having suffered so many perforations in my left ear drum. However, going to give it a go and hope my ears won't be too bad. I'll make sure I use the Flixonase Nasule for quite a long period running up to the flight, also it's recommended to use a decongestion spray too....I will be doing just that.

My best wishes to you Denise

Anne