Hello from Steph West in Ireland

[stephwest]

I was diagnosed with Wegener's Granulomatosis about 4 weeks ago due to waking up at 4am with partial sight loss in one eye, rushed to A&E by 7.30am and the local doctor recognised it by 10am and was on steroids for inflammation in joints by 5pm swelling reduced over next 2 days but developed awful hearing echoing from inside my nose and slight loss from outside, hearing specialist says will go away as steroids are reduced -- got appointments to see special eye clinic in August. Please any info on the above much needed. Many thanks Stephen

[me2]

Hi Stephen,
I'm sorry you are having such problems. If you have Wegener's I think it important that you begin a search for a WG specialist as soon as possible. Steroids will buy you some time but it is important to begin a primary treatment like Cytoxan or Rituxan or whatever your specialist determines fits your situation. Just steroids is not enough. You would never reduce steroids without being on primary treatment. Your hearing specialist may not be experienced with WG. Your hearing problem sounds more like WG to me than a steroid problem and his thinking is dangerous if he does not understand WG.
I did a little googleing and found some local resources for you . I hope you stay here too and let us know how you are doing.

I found this: Vasculitis Ireland Awareness – Granulomatosis with Polyangiitis (GPA/Wegener (http://vasculitis-ia.org/granulomatosis-with-polyangiitis-gpawegeners/)

On that site I found this:List of Consultants who support the groupDr A. Bell, Rheumatology Department, Musgrave Park Hospital, Stockman’s Lane, Belfast
Dr. Conleith Feigherty, Rheumatology Department, St. James Hospital, Dublin
Dr. Eamon Malloy, Rheumatology Department, St.Vincent’s Hospital, Dublin
Dr. Sean Leavey, Consultant Nephrologist, Waterford Regional Hospital, Ardkeen, Waterford.
Dr. Peter Garrett, Nephrology Department, Altnagelvin Hospital, Glenshane Road, Londonderry
List of specialist nurses in Northern Ireland who support the groupBelfast City Hospital : T: 028 9032 9241
Rheumatology Nurse Service l Jannette Sloan ext 2246
Vasculitis Clinical Nurse l Donna Winaker ext 3282/4071

Royal Victoria Hospital : T: 028 9024 0503
Rheumatology Nurse Specialist l Ann Quinn, level 6 Out Patient Ext 3440/3190/4268
Rheumatology Nurse Specialist l Caroline Mc Ateer ext 2818
Antrim Area Hospital : T: 028 9442 4000
Rheumatology Nurse Specialist l Caroline Mc Ateer ext 2818
Rheumatology Nurse Specialist l Debbie Collins ext 4224
Rheumatology Nurse Specialist l Ruth Milligan ext 4227
Musgrave Park Hospital : T: 028 9090 2000 Helpline Ward 4 ext 2829
Ulster Hospital : T: 028 9048 4511
Rheumatology Nurse Specialists l Andrea Gilles, Joyce Johnson
Rheumatology Nurse Specialist l Sheila Mc Kimm 028 9056 4742
Connective Tissue Disorders l Audrey Hamilton ext 2995
Craigavon Area Hospital : T: 028 3833 4444
Rheumatology Nurse Specialist l Elaine Wiley ext 4242

Altnagelvin Hospital : T: 028 7134 5171
Rheumatology Nurse Specialists l Janice Carlisle and Bronagh Grant ext 317
ENT Nurse Specialist l Paul Crilly ext 4818
List of Specialist Nurses in Southern Ireland who support the groupUna Martin,
CNS Rheumatology, St.Teresa’s Unit, Waterford Regional Hospital, Dunmore Road, Waterford
Donncha O’ Gradaigh,
CNS Rheumatology, St. Teresa’s Unit, Waterford Regional Hospital, Dunmore Road, Waterford

[annekat]

Welcome to the forum, Stephen. I agree with Kirk and am impressed with his work in finding that resource for you. You will find also that if you stick with this forum, it is the best place in the world for easy access to information on WG and support from those going through the same thing. Everyone's case is different, but you will learn a lot from other people's experiences. Best of luck in getting your treatment on track. You do need to be on a suitable immunosuppressant in addition to the steroids.

[stephwest]

Hi Guys My 1st attempt at thread was a bit hurried when I called the whole proscribed package steroids. From the 2nd day in hospital the team put me on Prednisolone 80mg down to 60mg after 5 days and 40mg after 10 days, Methotrexate 15mg once a week without Folic Acid), Folic Acid, Zoton, Nuasa (asprin blood thinner) and Sterimar nasal spray. Sorry to not included this info before but its a lot to take in. Many thanks for the list of WG medics in Ireland the nearest is Waterford still 200km away as I am in Limerick. I have not yet travelled outside my local area its all very tiring.

[mishb]

Hi Steph and welcome

You certainly passed all of the tests to get the induction in to the world of Wegeners and make your way to this forum.
The test is certainly a hard one, with lots of pain along the way.
But.....you are here now, and this is the best place to be - with the people who know.

Kirk has given you a fantastic start to a very long journey that is facing you.
I hope you can make a trip to one of the specialists that he has given, or, that one of your doctors can refer to one of these specialists for extra guidance.

I'm glad you are on more that the steroids. Your eye appointment - I hope that is in early August (not too far away now)

Take Care and keep of posted.

[stephwest]

Hi Michelle. Many thanks for theadvice, I have an appointment with Rheumatology consultant on Thursday see how that goes. The eye appointment is not till later in August unfortunately. The 1st eye guy used very modern digital 3d imaging and reported a burst or damaged artery in the back of the eye blocking vision from the top 1 third of right eye, have you heard of a cure or repair or self repair for this. thanks in anticipation----StephTt

[drz]

Hi Michelle. Many thanks for theadvice, I have an appointment with Rheumatology consultant on Thursday see how that goes. The eye appointment is not till later in August unfortunately. The 1st eye guy used very modern digital 3d imaging and reported a burst or damaged artery in the back of the eye blocking vision from the top 1 third of right eye, have you heard of a cure or repair or self repair for this. thanks in anticipation----StephTt

Usually they use laser treatment to heal the area. It feels like getting pricked a couple hundred times but it prevents further damage or bleeding. It does leave a blind spot in that area which you probably won't notice until you have a visual field test.

[Widthofacircle]

Hi Stephen
Brendan here from Dublin. Good to come across an Irish person here and from Kilmallock, my grandfather came from there. Sorry to hear you have been diagnosed with Wegeners. I was diagnosed in 2009 and have been attending Dr Maurice Barry(rheumatologist) in James Connolly Memorial Hospital in Blanchardstown. I initially went on Cyclophosphamide infusions coupled with prednisolone and septrim. Am now on Cellcept, 3000mg per day and 10mg pred. I also take 2 septrim 3 times per week. This dosage keeps me generally well. I have ongoing problems with hearing in my right ear and sinus problems. My initial problems started with swollen joints, flu like symptoms, rapid weight loss and kidney involvement. Lung issues followed but ok now. Have had cataracts in each eye removed. Cataracts were caused by pred. You are in for a long journey however with proper treatment you should make good progress.
Brendan

[Yvonnea]

Hi Stephen,

I too am Irish. Originally from Dublin (but living in Sweden now)....diagnosed and treated there in 2004. I first showed symptoms in my lungs and ears. Ended up being treated by a wonderful Doctor, Dr. George Mellotte in Tallaght and James hospital (He is a kidney guy but has many wg patients).
There is a new "Vasculitis Ireland Awareness" Facebook page run by a Belfast woman called Julie Power. They meet every few months all around Ireland. They may be able to direct you to a good specialist near Limerick.
Hope you get many answers and reassurance at your appointment on Thursday. Things will get better now that you have a diagnosis and getting treated.
This forum is also invaluable. Let us know how you get on...
Best wishes,
Yvonne

[stephwest]

Has anybody got awful hearing amplified echoing from inside my nose and throat (can hear breathing and eating) also slight loss of hearing from outside my head, if I lay down horizontal or even 15 degrees elevation or hold head down on knees (not even to far down say cross arms on table and lay head on them) the effect stops like a float switch in ears or back of throat blocks off a connection to the amplified echoing. If I pinch my nose and suck back has a similar effect but only till I swallow or speak. Most strange but is very very horrible. Many thanks Steph

[Pete]

I have similar hearing problems. I haven't noticed any improvement by changing body positions, etc. I've just learned to live with it, as it occurs intermittently. It is annoying.

[pberggren1]

I would go see an ENT right away. You prob need tubes in your ears to let the fluid drain out.

[Alysia]

Hi Steph, welcome to the forum. great place with amazing people. :hug3:


I would go see an ENT right away. You prob need tubes in your ears to let the fluid drain out.
I thought that tubes are not alowed to weggies ?
the fluid in my ears drain out by elevating pred dosage.

[pberggren1]

Oh no, many Weggies get drainage grommets (tubes) in the ear drums to help the fluid drain out.

[annekat]

In some cases, the fluid is too solidified to drain, right? That's what they call glue ear. I think that is the case with me, as my ENT told me that ear tubes wouldn't work. I guess I didn't try hard enough at the time to get a distinct reason. There was a time earlier, prior to my WG dx, when he was considering ear tubes for me, but both ear drums had been perforated on their own due to infection, and he either wanted to give them time to heal properly before puncturing them again, or in the case of one ear, there was a lot of thick scar tissue from the healing and he wanted to see if it would break down and get thinner before attempting tubes. So there are a lot of considerations, and it is possible that I'm misunderstanding some of what my ENT said, or didn't say, since it was a long time ago.

[pberggren1]

That is correct Anne. That is what I had. Glue ear.

[annekat]

Phil, did the glue ear ever resolve itself? Or was anything able to be done about it?

[pberggren1]

No, it just got worse. Then I had severe nerve damage from the Wegs too. Then nerve damage from an antibiotic that left me 100% deaf. Then I got cochlear implants.

[annekat]

No, it just got worse. Then I had severe nerve damage from the Wegs too. Then nerve damage from an antibiotic that left me 100% deaf. Then I got cochlear implants. So is the "glue" still in there? I have some nerve damage in one ear from the big ear infection at start of Wegs. Hmm, I wonder if an antibiotic could have had caused that nerve damage. They tried 4 different ones, the third being Levaquin. Then there was a 5 day course of Rocephin (I think) by IV to prevent mastoiditis. I came out of all that with pretty bad hearing but could get by without aids. Hearing got better after that in both ears, since most of it was conductive loss. The glue ear, if I have it, came later, and hearing got worse. For awhile I could pop my ears and hear better. Now can't pop them, and hearing got a little worse after dx and then sort of leveled off after I got the aids. I can hear some without the aids, but it's pretty bad.

[stephwest]

Hi Brendan, amazing about your grandfather coming from Kilmallock, what was his name and do you still have rellies living here? I'm interested in the why's and where's of why I've come down with this and would like to try to meet as many sufferers in Ireland as I can manage - starting in the south west if possible. Do you know of any others in Dublin? I was at the specialist clinic yesterday and I have to say that the results were very encouraging and my steroid dose was reduced but the methotrexate was increased. I'm not really happy about immune suppressants but will stick with them for the time being. The only thing that was different about 2013 from other years in my life up to being diagnosed was that I had far too many colds from Christmas to May and then had all the symptoms of hay fever which of course turned out to be GPA (as it's now called partly due I think to Dr. Wegner having too many Nazi connections!!!). apart from that I used roundup in my new poly tunnel there was no difference to previous years. How about you? Hearing: I'm getting more popping and relief from echo this morning and am attributing this to the lower dose of steroids but I could be wrong and am looking forward to attending the Ear clinic in a couple of weeks to see what they say and then the eye specialist on Aug 30th. I have to give fair credit to my medical team who yesterday did express their astonishment at the improvement in the sight of my right eye - which they had declared as unrecoverable - but also their genuine delight for me. Many thanks and looking forward to hearing more in the future

[Widthofacircle]

Hi Brendan, amazing about your grandfather coming from Kilmallock, what was his name and do you still have rellies living here? I'm interested in the why's and where's of why I've come down with this and would like to try to meet as many sufferers in Ireland as I can manage - starting in the south west if possible. Do you know of any others in Dublin? I was at the specialist clinic yesterday and I have to say that the results were very encouraging and my steroid dose was reduced but the methotrexate was increased. I'm not really happy about immune suppressants but will stick with them for the time being. The only thing that was different about 2013 from other years in my life up to being diagnosed was that I had far too many colds from Christmas to May and then had all the symptoms of hay fever which of course turned out to be GPA (as it's now called partly due I think to Dr. Wegner having too many Nazi connections!!!). apart from that I used roundup in my new poly tunnel there was no difference to previous years. How about you? Hearing: I'm getting more popping and relief from echo this morning and am attributing this to the lower dose of steroids but I could be wrong and am looking forward to attending the Ear clinic in a couple of weeks to see what they say and then the eye specialist on Aug 30th. I have to give fair credit to my medical team who yesterday did express their astonishment at the improvement in the sight of my right eye - which they had declared as unrecoverable - but also their genuine delight for me. Many thanks and looking forward to hearing more in the future
Hi Stephen
My grandfathers name was John Joe Sheehy. I don't know of any relatives living there now. His family left when he was quite young. I have heard of one other person with Wegs attending the same hospital as me but I have not met him/her. There are also some attending St Jame's Hospital in the city centre. I am glad to hear that your eyesight is getting better. Eye problems were some of the latter difficulties I have had due to this disease and I know from experience how difficult that can be. Thankfully I am over the worst of that now albeit I have blurred vision in the right eye. Immune system suppressants are vital in the control of Wegs as the immune system itself is at the core of all of the symptoms. I have been on Cellcept for the past 4 years and have had no major side effects.. It does mean we are much more suceptible to infection and you should be on Septrin to protect your lungs in particular. I still have problems with my hearing from time to time but it generally comes right after a while.
Brendan

[pberggren1]

I would assume the glue in still in there Anne.

[annekat]

Ears are tricky... they seem to go through lots of changes and some are lucky enough for hearing problems to resolve on their own. I have had no eye involvement. Losing one's vision like that would be very scary. I'm really glad that your vision has improved beyond their wildest fantasies! Of course, they can get the credit by virtue of their good treatment. It sounds like you are in good hands. I'm also on methotrexate and having gotten used to it, have very little problem and think it helps me a lot. It's a fairly low dose, 15mg. a week, as I'm in more of a "maintenance" phase of GPA, though no one has used that word. I flared when they tried to put me on 10mg., though. As for pred, I'm on a steady 10mg. per day and there's been no talk yet about lowering it from there.

[stephwest]

Hi all sorry to be slow replying but resting for a day or so the Prednisolone has been reduced to 20mg day plus Folic Acid and the Methotrexate up to 20mg week from 15--is this a good move. The Doctor in charge of my case said I would be tired for months in a slow recovery-is this your experience. at age 66 in 2 weeks I can semi retire and enjoy our garden in the best Irish summer for 8 years. any more help on ears amplifiying my own head breathing/talking/eating would be great. How many GPA's are there in the World/Europe/Ireland/Uk can't find much info on Google apart from http://www.rheumatology.org/Practice/Clinical/Patients/Diseases_And_Conditions/Granulomatosis_with_Polyangiitis_(Wegener_s) All best please reply soon Stephen

[stephwest]

Not wishing to take anything from my wonderful team of medics but the improvement in my eyesight is totally a miracle and due to the large amount of prayers that were undertaken by no less than three parish priests, parishioners and friends, and in some part possible due to the eye exercises that I undertook myself in the morning and at night every day. The medical team actually wrote my eye off as unrecoverable in less than twenty four hours. The astonishment of the medical team when they finally accepted the improvement in my eyesight - at first they appeared to have written it off as wishful thinking on my part - was also greeted with delight for me on their part.

[pberggren1]

After all, God is really in charge. Prayer is a must, but mostly for our souls.

[stephwest]

Hi All. Not much to report at home in warm Irish Summer but still very tired sleeping a lot in daytime. 5 weeks now since waking with no sight in right eye but over the 5 weeks I can now see all around the damaged artery in back of eye, its like a little cloud in top centre. Use of polaroid clip over sunglasses helps to make clearer vision. A reduction in Pred down to 20mg a day has helped the hearing echoing a lot. The use of Saline spray (Sterimar) up nostrils once a day randomly delivers a large green/grey sliver of mucus on blowing nose. Are there any more cases in Ireland ( Apart from Brendan in Dublin--Hi Brendan) if so please contact me. My rheum consultant at the Limerick Regional says I was very sick and it would take 3 months to regain strength. I have lost a stone in weight ( due to mouth ulcer only eating water melon and salads until 2 weeks ago ) and am eating loads of fruit and good home made food now. Everybody remarks how well I look agggg. Cos I don't feel it. All best Steph

[Widthofacircle]

Hi Stephen
You may have missed an earlier post from me in this thread telling you of my knowledge of other Wegs sufferers in Ireland. In addition to that I have also heard of a 12 year old girl in Galway recently diagnosed. Weight loss is a factor with Wegs and then once on pred the opposite happens, you can pile on the weight however you will lose it again once pred is reduced. Are you getting cyclophosphamide infusions? If so this will leave you very tired and lacking in energy. Energy levels will rise again once you come off that. One thing that struck me about people commenting on how I looked was that when I was getting better, people said to me "you are looking well now but you looked pretty bad a couple of months ago". Yet when I met those same people when I was at my worst none of them said to me " you look pretty bad". This is human nature and funny to look back on but it does tell me be wary of people telling you that you look well. If you don't feel well it is because you are not well and be sure to make it known to your doctors. Getting the meds right is the key to getting better and the way to do that is to be sure to keep your doctors informed of everything you are experiencing. In addition to this the advice you will get from some members here will be invaluable.
Cheers and get well
Brendan

[stephwest]

1920Hi All. Does anybody have blood patches under skin (see Image of my right arm) google says it is thin skin and I have knocked it but with all the GPA stuff who knows I take as part of the meds 75 mg acetylsalicylic acid as a blood thinner any ideas??? Please repay with anything All Best Steph West

[Dirty Don]

Patients on blood thinners bruise easily...

[drz]

I was told to stop the daily aspirin after I was diagnosed with Wegs even though it may increase the risk of stroke or heart attack. If you have a flare that attacks the kidneys or lungs with lot of bleeding it would be very dangerous to be on any blood thinner at this time. Of course so is a heart attack or stroke so you have to weigh and balance the risks and discuss it with you treating doctors.

[Pete]

I'm on an aspirin regimen also. I find that I bruise much more easily than before wegs. My arm has looked like yours when I banged against furniture or an open car door. I also attribute some of this to aging. (I'm 66.)

[stephwest]

Hi all. Had a bad night with Methotrexate took 8 x 2.5mg tabs later than normal for my Tuesday after late meal. Got to bed 11 ish, 2 ish started the shiver and got very cold, heated up hot water bottles. no sleep!!! some joint pain but could be a bit of gardening in the day. finally got to sleep at 5.30am till 10.00am What best time for Meth and on full or empty stomach. Going for eye appointment of Friday right eye still half not seeing. One of my docs said never seen the eye problem with GPA. Do you have any eye probs out there. All best Steph West

[me2]

Hi Steph,
Sorry the Methotrexate is giving you trouble. I take the same dose as you on a full stomach in the morning and I can't tell a difference. We all react to some of these drugs differently , sorry I'm not much help.

Eye problems are not that rare to those experienced with GPA. I have had lots of eye problems myself that fortunately all resolved. I have know others who have had problems too. I think agressive treatment is usually in order as our eyes are so extremely important and can be damaged so easily.

One of my 'eye' problems was actually my central nervous system being damaged. I had vision problems for a long time from that and I count myself extremely lucky to have fully recovered my sight.
Of course now I'm getting old and need reading glasses- but nobody should get to complain about that. Especially someone like me who has had GPA for over thirty years.
I hope they get your eye trouble figured out soon and get you on the mend. You need to see someone who has seen eye involvement from GPA before so you are not misdiagnosed with a lesser condition if it is GPA. Take care

[marylz]

Hi Stephwest.
I am also on blood thinners due to having an artificial heart valve (almost for 30 years now) and I also bruise VERY easily and my arms constantly look like yours. (Of course, I am not the most coordinated person and am constantly bumping myself!!!) I've learned just to get used to it. Arnica gel helps fade the bruises more quickly.

[annekat]

Hi Stephwest.
I am also on blood thinners due to having an artificial heart valve (almost for 30 years now) and I also bruise VERY easily and my arms constantly look like yours. (Of course, I am not the most coordinated person and am constantly bumping myself!!!) I've learned just to get used to it. Arnica gel helps fade the bruises more quickly. I have bruised easily all my life... thin skin, I guess, and fair, so they show more... and nothing has changed with Wegs except that it takes them longer to go away. I didn't know about the arnica gel; I'll have to try that! I may have some on hand for some muscle aches in the past.

[Wegetarian]

I'm taking my MTX in the evening a few hours before I go to bed. I think I read somewhere that it should help against nausea since you'd be sleeping during most of the time. Haven't really noticed anything though, a few times I've felt slightly nauseous - like last weekend I felt slightly nauseous for a few days but dunno if the MTX I took on Thursday was the culprit. I took 15mg last Thursday night, and not sure if I noticed any side effects. I take my folic acid the following morning. A few weeks ago I nearly passed out on my way from my bathroom to my bed at night, and I've felt a bit dizzyer if I've waken up in the middle of the night. The nurse did tell me that the almost-fainting could be a side effect of MTX and inform if it happens again, but as said I haven't really noticed anything.

[mishb]

My specialists said not to take the folic acid on the same day as MTX, not even to take a multi vitamin on that day if it has folic acid in it.
As I also take mine a few hours before bed, I look at the next day as being the same day (not 24 hrs after) and therefore don't have the folic acid until the day after that. This means I really have two days without folic acid.

[Wegetarian]

I look at the next day as being the same day (not 24 hrs after) and therefore don't have the folic acid until the day after that. This means I really have two days without folic acid.

Should you still ask about that? The thing is my folic acid has a prescription note on it that says I shall take it 4-12 hours after taking MTX. Might be that the docs don't know and just propose some time after the MTX, but if the 24-hour rule is your own assumption it might be wise to make sure from the doc.

I've been taking some folic acid a few times a week since I bought some in advance as I knew it was likely I'd be on MTX and hadn't taken any vitamins in ages, the pharmacist said it would be OK to use it but maybe I should ask my doc just in case. Actually I've been meaning to ask what supplements you guys are using, should make a thread about that at some point but I feel I spam the forums enough as it is :D

[mishb]

I actually only take my main folic acid tablet, once a week.
I do MTX on a Monday night and take the folic acid tablet on a Friday night.
I just avoid anything with folic acid in it on the day either side of MTX........such as vitamins, vegemite etc.

[annekat]

I'm pretty loose about the folic acid thing... try not to take it on the same day, but sometimes forget, and nothing happens, that I notice. My doc never even said not to take it on the same day. I got that from here. At least I don't think he did.

As for the nausea with MTX, I do the same thing, taking two thirds of it at night, and the rest the next day, so as to split the dose, though I might be able to manage taking all 15mg. at night before bed, just haven't tried it yet. I am mostly over the nausea but a few times have gotten up in the middle of the night feeling slightly woozy. Don't know if it might help to have something in one's stomach when taking it, as long as you don't think you might throw up.

As for any dizziness or tendency to faint, that could also be from disturbance in your inner ear, causing vertigo, if your ears are affected by Wegs, or even if you don't think they are, they are connected to your sinuses via your eustachian tubes. This vertigo has only happened to me about three times in the last 5 years, once before dx and twice in the 2.5 years since dx. All I could do was lie down until it was over, which was anywhere from a couple of hours to several hours. I have no clue what caused it on those rare occasions as opposed to any other time.

[Wegetarian]

I am mostly over the nausea but a few times have gotten up in the middle of the night feeling slightly woozy. Don't know if it might help to have something in one's stomach when taking it, as long as you don't think you might throw up.

As for any dizziness or tendency to faint, that could also be from disturbance in your inner ear, causing vertigo, if your ears are affected by Wegs, or even if you don't think they are, they are connected to your sinuses via your eustachian tubes. This vertigo has only happened to me about three times in the last 5 years, once before dx and twice in the 2.5 years since dx. All I could do was lie down until it was over, which was anywhere from a couple of hours to several hours. I have no clue what caused it on those rare occasions as opposed to any other time.

Thanks Anne :) Glad to hear it might just be a minor side-effect from MTX then. Its kind of hard not to freak out when almost fainting for what seems like no reason.

Yeah, I think Weg affected those tubes. I mentioned to the doc (who is an ear-throat-nose specialist) about my right ear locking at times - like when being on an airplane. She mentioned the same thing, that those tubes are connected and Weg might have done some damage there as I guess they are quite fragile. I've also noticed when rinsing my nose that when I put water through my left nostril my right ear might again feel like that. (Can't remember what's the English term for that, guess I need some more sleep :))

[drz]

They advise against sinus rinses when a nostril is blocked since the water might then go into an Eustachian tube. Too much force could do the same thing. Some people develop holes between the nasal passages and then rinses are more difficult too. Blocked Eustachian tubes are very common result of Weg damage to sinus area and great source of hearing problems.

[NikkiNicole]

I did a sinus rinse on Tuesday night, not realizing I was completely blocked on one side and water shot right into my ear. It was a feeling I remember all too well from when both ears were totally blocked last year. I had tubes put in, one in August, the other in September of last year and could finally hear again. Everything had been muted and muffled. Lots of fluid trapped in my middle ear!
I didn't want that to happen again. It seemed to clear but there's definitely something in there because loud noises kind of reverberate in my ear. Hard to explain ...

[drz]

Blowing too hard to try clear your nasal passage can also force stuff into you Eustachian tube and mess up your hearing. hard to resist but I learned the hard way I had to just learn to wait till they opened up some on their own and then do real gentle nasal rinses and blowing.

[Wegetarian]

Blowing too hard to try clear your nasal passage can also force stuff into you Eustachian tube and mess up your hearing. hard to resist but I learned the hard way I had to just learn to wait till they opened up some on their own and then do real gentle nasal rinses and blowing.

I noticed doing say three really short but fairly powerful blows works way better to me than trying to do one big blow. Feels just as effective, but not painful.

[annekat]

I noticed doing say three really short but fairly powerful blows works way better to me than trying to do one big blow. Feels just as effective, but not painful. I've noticed short, medium blows sometimes work better than stronger blows. They somehow move stuff around more, while the heavy blows can sort of make everything swell up.

I've had water go into my e-tubes, too.... not so much lately, but when it did, I also had a hole in my eardrum so it could then drain out my ear. Not something to strive for, but at least it made me feel like something could get through there....

[stephwest]

Good news-My pred steroids are now down to 10mg a day (80mg/40mg/20mg) but slight increase in mucus in nose and ears is this normal-I am less tired I think. The methotrexate is still at 20mg on a Tuesday with daily 75mg Asprin, 30mg Zoton, 5mg Folic Acid (except Tuesday) is this in keeping with other GPA people. Two weeks ago I over did some lifting in the garden and got lower back pain went to a chartered physio he discovered a bulging disc in lower back so I am again resting and not bending or lifting doing hamstring exercises, he is now trying to manipulate it back-he thinks steroids may have reduced muscle tone all over-what do you think? Good job I am semi retired as I cant think how I could go to work 8 hours a day-GPA is only 3 months old now so long way to go-Does anybody ever completly get cured of GPA and off all drugs and back to normal pre GPA many thanks Stephen

[mishb]

Hi Steph, it's great to hear that you have reduced the pred and are feeling a little bit more "normal".

My rheumatologist told me to never lift anything heavy as it could cause muscle damage or tendon tears or even bone breaks.
Our friend pred does some serious alterations within our bodies and reduced muscle tone is one of them, to my knowledge.
My rheumy said to remember that these steroids are not the type that body builders and weight lifters use. They will not put muscle on you, but will deplete it.

As to a cure for GPA - no I don't believe anyone can say they are cured, but I do believe that there are many people who have been symptom free and med free for many many years.

Take care of yourself