Positive diagnosis today

[Mikek]

Jenny has been positively diagnosed today as having WG. They have started her on Prednisolone 25MG30 x2daily.

[pberggren1]

They just put her on pred? No other meds?

[Mikek]

They gave her a sleeping pill too. She has ear drops to help with the infection but that's all. We are very new to this so any advice/ suggestion must welcome. Thanks . I should add that there's a whole swag of tests over the next few days, blood and urine, bone scans, chest X-rays so the Pred' might just be to get a head start prior to having a full picture.

[pberggren1]

I would ask the docs why just pred. Ask about Rituximab or Cytoxan. Pred alone will not treat Wegs.

[mishb]

I was just put on pred too, until they did all of the tests over a four day stay in hospital.

A 24hr urine collection, hand and feet xrays, chest xrays, chest ct, lung chamber test and lots of bloods - oh and a bone density scan.
Then after all of these, they put me on MTX.

[annekat]

I'm glad to hear you got the dx so you are no longer wondering and know what you are dealing with. I assume the full treatment will start soon, knocking out the inflammation and symptoms and stopping the progress of the disease. Then, hopefully, Jenny will be on her way to remission and back to a more normal life. All of us on the forum will be waiting to hear how it goes.

[Mikek]

Thanks, Jenny and I really appreciate your support.

[whatthewhat]

MY daughter also was started on Prednisone, while other test results were coming in, to make sure she had no hidden issues that would be exacerbated by knocking out her immune system. As soon as the all-clear came, she was started on Methatrexate & Retuximab.

[mishb]

Maybe it depends on the severity of your condition at the time..........ie. whether you are on your last legs, or whether you can still manage without.

For me, I know they really needed to get the inflammation under control first, and therefore pred was the big hitter for me. I was on mobic before that for the RA, but it did nothing.


I hope Jenny is in good spirits and that the complete treatment starts in the next few days.

[Mikek]

Jenny has gross discomfort in the nostrils/breathing department. Is this usual for this stage of the condition? She really is very uncomfortable and naturally, being early diagnosed, depressed at the prospect of poor health. What will Pred' actually do for her ?

[mishb]

The nose discomfort, well the massive pain actually, became bearable to mild, for me, from about the second or third day of being on pred.
She might still be feeling some discomfort from the operation, as well, though.

The pain should start getting better in the next day or so. Pred is a massive hitter, anti-inflammatory. It will start to reduce the inflammation and therefore decrease the pressure and pain. Some people do need other pain killers though.

That was just my encounter though. I wonder how others on here felt.

[Mikek]

Thank you so much for this encouraging message, Michelle.

[pberggren1]

But, pred alone will not treat Wegs. She needs one of the big guns. Preferably rtx.

[mishb]

That's correct, it wont treat the wegs but it should make the inflammation and pain more bearable.
In the next few days they should start her on "the big guns" to start hitting her immune system for a six......if they haven't already/

[Mikek]

But that's all we have at the moment. Jen' had her first blood and urine samples taken today together with chest X-ray. Her doctors are conferencing her case on Friday and seeing her early next week. I guess by then they will have a treatment plan. I just passed on what Michelle posted re nose pain and it cheered her up considerably (I woke her up to pass it on!). Proves the value of the forum! Thanks again. I hope that I can he so helpful to a new user sometime in the future.

[mishb]

Mike, if Jenny even needs a chat, we are here for her. We are good for a laugh, or a cry, or a place for her to scream at.
I sure hope the pain does start to get better soon.

This forum, and the people on here, were a life saver for me :love:

[Mikek]

That's sweet of you, Michelle. Thanks. Just out of interest, we lived in Melbourne years ago. Springvale, Preston, Cobug and the first Australian home we owned and lived in for a few years was in Sunbury.

[mishb]

We are towards the Mt Dandenongs.......over the opposite side :biggrin1:

[Mikek]

That's lovely country, I'm guessing that you're out towards Lilydale way. My lot here are all Collingwood suprters.

[mishb]

No, in the Knox area

Collingwood supporters - I'm sorry for that :flapper:

[pberggren1]

Be nice now Michelle. After all, Mike can sick the Tasmanian Devil on you.....lol

[mishb]

But Phil......they're Collingwood supporters :thumbdn: (google it)

- Soorry Mike :sad:

[Mikek]

Before the devil tumour epidemic somebody not sitting far from me used to shoot the ugly b*********ds.

[mishb]

Awww, that's not good..........we are an animal friendly lot :crying:

[pberggren1]

I forgot, you people are mad in the head with futbol.......lol

[Mikek]

No worse than you and ice hockey and that's manic.

[Mikek]

The old girl looks pretty crook this morning (Thursday). Hope the pills kick in soon and give some relief.

[Mikek]

Jenny is on day three of Prednisone and no obvious improvement . She's having trouble sleeping with both nostrils blocked and sleeping pills ineffective. On the positive side, we've been advised that the doctors think thr WG to be limited to the upper airway and that the ruptured bowel, seven weeks ago, a coincidence. She's a bit fed up with the whole WG business.

[mishb]

How much pred is she on Mike?

I think it's time that the docs got together to review her case - I don't think it can wait until Monday or Tuesday.
What has ENT said?
She might need to do a sinus rinse. When I first got sick, I had to do sinus rinses (gross though they may be) every couple of hours......still the nose didn't clear.
Has the pain reduced at all, or still just the same?

[annekat]

It could take longer than 3 days for the pred to make her feel noticeably better. And when they add the immunosuppressive drug, that will take some time, too. Meanwhile, some sinus rinses should help, unless the nostrils are too blocked to do that, but it's worth a try. Otherwise, an ENT could get some of that obstruction out of there by means of a suction device.... I've had this done and it's not too bad. It's good to know that Jenny's WG is so far only in the upper respiratory tract. So she may be able to get by with some of the milder drugs. Best wishes to her!

[Mikek]

Thanks friends, Jenny takes 50mg once daily in the morning. After I posted she took pain and sleeping meds and did get to sleep. She woke today (Saturday) with bad nose pain and took panadol/codeine which has relived it.

[pberggren1]

Mike, I would demand something be done soon here. She is dieing. Get proper treatment there in 24 hours or go to Melbourne. Has she had a lung x-ray?

[Mikek]

She had a chest X-ray late last week and its sitting here in my lounge room. I think that her doctors have had a radiographer's report sent to them because they had a conference about her case on Friday. The 'stand in' rheumatologist (the top guy went on leave for a month on Friday) told me that they believe that the problem is constrained to the upper airway at this point. I've looked at the X-ray and can see no spots. She not about to drop dead as she's happily doing household chores but with the aid of painkiller pills and coffee. I may have to start looking around for a younger woman, I've had this one 50 and she might just be ready for the knackery!

[Debbie C]

I bet "ole" Jenny,sick or not can kick your a##...I'd watch out if I were you Mikek

[Mikek]

Dunno about that, I might be able to get a head start on her now. Now where did I leave my pacemaker?

[pberggren1]

You guys are too funny.

[Mikek]

Phil, you've got to have humour. Life is such a ridiculous business! I hate to see the old girl not well, on this day last year we were standing on the top of mount Etna in Italy fit as mad cats. I've just been looking through the photos wondering whether we can ever do another trip. I've got a years supply of Viagra in my drawer(one tablet). Im wondering if it will go
To waste now.

[Debbie C]

Mikek..hold on to that tablet,I'm sure you will be putting it to good use on your next holiday.

[annekat]

Mike, do keep in mind that a chest xray does not always show enough to suggest WG. In many cases it takes a CT scan to see what is really going on in the lungs. But if she isn't coughing a lot, especially coughing up blood, or having lung pain, trouble breathing into her chest, etc., then your docs may be correctly assuming that it is only in her upper airway. I hate to think of the pain she is experiencing and hope they can alleviate that and get her started on a serious immunosuppressant soon. I'm glad to hear she got some good sleep. And do keep that Viagra in a safe place, but where you can easily access it!

[Mikek]

Jenny has none of the lung symptoms you mention. On another positive note,since starting on prednisone , she's had improvement with mouth ulcers and this is something she's suffered with long term. Are mouth ulcers a symptom of WG? If so she m ay have had it brewing away for months before it damaged her ear.

[annekat]

I think mouth ulcers do crop up more commonly once a person has WG. I had some, and I remember reading that others have. Also achy gums and teeth. All these cleared up for me with treatment. It's nice that the prednisone is having such a quick effect for Jenny in that area and I hope it is a sign that she will respond well to the overall treatment. And yes, if the ulcers had been nagging at her for awhile, I would guess that they could have been an early sign of WG. That is just a guess. But the term "smoldering Wegs" has been used on this forum for the various symptoms that can come and go for years before actual diagnosis. More commonly it is things like recurring ear and sinus infections, allergy-like symptoms, joint pain, etc. But everyone's case is a little different.

[Mikek]

Mike, do keep in mind that a chest xray does not always show enough to suggest WG. In many cases it takes a CT scan to see what is really going on in the lungs. But if she isn't coughing a lot, especially coughing up blood, or having lung pain, trouble breathing into her chest, etc., then your docs may be correctly assuming that it is only in her upper airway. I hate to think of the pain she is experiencing and hope they can alleviate that and get her started on a serious immunosuppressant soon. I'm glad to hear she got some good sleep. And do keep that Viagra in a safe place, but where you can easily access it! I shall put it away for a rainy day and in case its a long time, Ive written some instructions.

[annekat]

I shall put it away for a rainy day and in case its a long time, Ive written some instructions. Make sure you check the expiration date, and make a point of using it before then!

[Mikek]

Thanks for that information, Anne. A few weeks ago, Jenny had the most awful Gingervitis. Her gums swollen up like strawberries. Our dentists said it was the worst she'd seen. I can see now that this is all part of the bigger picture.

[Mikek]

Just hope that my expiry date doesnt come first.

[mishb]

She had a chest X-ray late last week and its sitting here in my lounge room. I think that her doctors have had a radiographer's report sent to them because they had a conference about her case on Friday. The 'stand in' rheumatologist (the top guy went on leave for a month on Friday) told me that they believe that the problem is constrained to the upper airway at this point. I've looked at the X-ray and can see no spots. She not about to drop dead as she's happily doing household chores but with the aid of painkiller pills and coffee. I may have to start looking around for a younger woman, I've had this one 50 and she might just be ready for the knackery!

Sorry Mike, I think you are stuck with this one for quite a while longer :flapper:

Just untie her from the vacuum cleaner every now and then..........on higher doses of pred, she will feel like she has the energy to do anything, but then she will crash and probably ache all over.

In regards to the mouth ulcers, I also had many before diagnosis and the sore gums and the feeling that the teeth were actually moving.......it all came good after pred.
I still, after four years, cannot breathe through my nose and have to sleep while breathing through the mouth. Unfortunately, I have to wake every hour or so to have a drink of water because the mouth is so dry.....it gets easier.

In regards to ulcers, I hope the hospital also put Jenny on a heart burn/acid tablet because pred can create stomach ulcers, reflux etc. My hospital never told me this and I only learnt from this forum.

I hope she (and you) have a lovely, painfree weekend

[Mikek]

Well I hope that I am! It's one of those beautiful sunny winter's days and I managed to coax her out for a few minutes' walk along then river. She'd not been away from our property for a few days and she enjoyed the walk. It must have totally knackered her as she's asleep now. The information about the mouth ulcers does suggest that she's had this WG for quite some time brewing away. When we see the doc' on Tuesday, I will mention the stomach acid issue and thanks for that input. I should like to have your opinion on another matter if you would. We've been thinking about downsizing for a while and planned to buy into a retirement village and had Bribie island in mind. Now that she's seeing an ENT doctor and rhumatlogist in Hobart, both of whom have our confidence, maybe we should move into Hobart. How frequently do WG patients have to see thier doctors? for us, a trip into Hobart is more than 100km round trip. Another thing, can I claim a carer's allowance from Centrelink?

[mishb]

My mum lives in an over 55's gated community (that is what they call the retirement villages now) on a golf course and absolutely loves it. She has so much to do everyday........and her unit is beautiful.

When I was first diagnosed I was travelling to the City once every two to three weeks and then it went to once a month and then (after about 12 months or so) I went to six weekly and then three monthly and I am now at six monthly. I have bloods done every 4 weeks and see my own GP each month, in between the months that I don't see the guru's in the City. My Aunty lives in Hervey Bay and to see her rheumatologist, she has to travel for hours to Brisbane......just saying, even though Bribie is lovely, it may not have anyone close for Jenny to see and she would also have to travel to Brisbane which would then be a 2.5 hour round trip.

Wegener's is probably a condition where you would be able to get Carers allowance. You would need paperwork from her doctors saying that she needs your continued care, but if she is able to get out and about etc, then it may be difficult. I have WG but I work full time, so don't need a carer.......and hopefully, never will, even though my husband is wonderful and does everything for me, when I am at home.

[Alysia]

Hi Mike,

your love to Jenny is so beautifull...

there is a song in hebrew saying that love can prevail everything.
with my poor english Im trying to translate to you some of the song's words:

Between the dark and the occult
In our bitter world
They say there is still hope
Call it love…

Between confusion and disaster
You know there is a solution
Call it love...

There is love inside me
And it will wakes up and touch
Filled with love
And it will prevail

Im leaving the practical issues to the more knowledgeable here...

[Mikek]

Michelle, I hope that I'm not pestering you - you're local (ish) to us and so helpful. How close to a normal life can we expect to get? Jenny, in the past looked after our ornamental garden and I grew the vegetables. We have ten acres of garden and know that the time has come to downsize(I'm almost 70 but not really grown up). With the family grown and mostly gone, having a largish house is lunacy but when you've been in a place for while accepting common sense is a struggle: a move soon is inevitable. Jennys WG is going to be the catalyst that spurs me into action I guess and I'm thinking that an apartment in the city makes a whole lot of good sense.At the moment, I cant envisage Jenny gardening again but the fact that you are able to work suggests that I may have a too gloomy mental picture of what the future may hold.

[Mikek]

Thanks for those kind words.

[mishb]

Mike, it's really hard to say how she will be.

Cindy (on here) has climbed Mt Everest and also just participated in the Iditarod.
Peter is doing a bike, ski, climb challenge .........and many others are able to garden or walk/exercise and some are still working......and Don has his Golf and his Coffee.:tongue1: Vdub is in a motorhome driving to lovely holiday and out of the way places.......and yet there are also some on here that are not capable of making it through the day. Pain and fatigue plays a very big factor in most of their lives. Phil and Sangye and onatreetop (to name a few) have terrible struggles from day to day and we all learnt about the spoon theory, very quickly.

The Spoon Theory written by Christine Miserandino | But You Dont Look Sick? support for those with invisible illness or chronic illness (http://www.butyoudontlooksick.com/wpress/articles/written-by-christine/the-spoon-theory/)

Property that large may be too much for Jenny now but it may also be her haven later on. Down sizing is probably the way to go and moving to the City but then you wouldn't have the fresh air and the walks along the water, that she loves.
It's a very hard decision and since she is just new to the world of WG, there is no way to tell how she will be, once she is on the full medication program and starts to feel better.

Sorry, I may have confused you just that little bit more..........I guess it just a wait and see game at the moment.

[annekat]

Just hope that my expiry date doesnt come first. Rats, I thought of that after I posted it! Not likely, I don't think.

[annekat]

Thanks for that information, Anne. A few weeks ago, Jenny had the most awful Gingervitis. Her gums swollen up like strawberries. Our dentists said it was the worst she'd seen. I can see now that this is all part of the bigger picture. That is interesting, and given that she must have already had Wegs, yes, I guess now there is an explanation. It didn't happen to me until right around diagnosis. And my case wasn't quite that bad, but in retrospect, I wondered why my gums were flaring up more than usual. I hope I'm right that Jenny's will also clear up with treatment.

[Mikek]

Hi Anne, the more we think about this the more is seems that Wegs has been waiting dormant ready to erupt so that when she had a medical crisis in the form of the ruptured bowel, there it was. We travelled in your state some years ago seeing the aircraft factory and the Seattle underground tour amongst others.

[annekat]

Hi Anne, the more we think about this the more is seems that Wegs has been waiting dormant ready to erupt so that when she had a medical crisis in the form of the ruptured bowel, there it was. We travelled in your state some years ago seeing the aircraft factory and the Seattle underground tour amongst others. I think you are so right that Wegs seems to wait for things to happen to trigger it, and the signs can be there long in advance. Hey, the Seattle underground tour could have done something..... who knows what weird molds and microbes might lurk down there! I've done that but haven't toured Boeing. My cousin works there. If you ever make it back to this area, let me know, and maybe we can try to meet up! By that time, Jenny and I will both be in remission from Wegs, of course.

[annekat]

Michelle, I hope that I'm not pestering you - you're local (ish) to us and so helpful. How close to a normal life can we expect to get? Jenny, in the past looked after our ornamental garden and I grew the vegetables. We have ten acres of garden and know that the time has come to downsize(I'm almost 70 but not really grown up). With the family grown and mostly gone, having a largish house is lunacy but when you've been in a place for while accepting common sense is a struggle: a move soon is inevitable. Jennys WG is going to be the catalyst that spurs me into action I guess and I'm thinking that an apartment in the city makes a whole lot of good sense.At the moment, I cant envisage Jenny gardening again but the fact that you are able to work suggests that I may have a too gloomy mental picture of what the future may hold. Mike, I think there is plenty of hope that Jenny will be able to participate in the gardening again! It is early in her Wegs treatment, and it could go very well.... there's really no reason to think it won't. But 10 acres of garden, along with a good-sized house, sounds absolutely huge to me! So I can appreciate your thought that you might want to downsize. But I'd think a retirement community sounds a little small and limiting. So I'd wait to see how things go, while continuing to explore the possibilities. Perhaps a family member, a grandchild maybe, would be willing to live there and help for awhile? And if you do move, it could be to a smaller homestead with a smaller garden!

[Pete]

Hi Mike,

I think Jenny can get back into the garden again, and probably sooner rather than later. I'm 66 and am renovating a badly neglected city lot landscape (lot size is about 20 meters by 40 meters). It's strictly ornamental. The front yard has come around fairly nicely so that most of what I do out there is weeding, fertilizing, watering, and plantiing a few annuals in the spring. The back yard has been a different story. Below the minimal layer of topsoil, it's mostly roots, rocks, and clay. I have been working out there for 3 - 4 hours a day for about 3 days a week. When I work, I take frequent breaks so I don't get overly tired or too short of breath. I hope to have the back yard looking the way I want it by this time next year.

By the way, what do you want to be when you grow up?? I wanna be a jet pilot!! LOL

[annekat]

Come to think of it, gardening is a very good activity for Weggies. You can go at your own pace and rest when you get tired. And it is so very rewarding and good for the spirit to see the fruits of your labors. Pete, what you are doing sounds impressive. Maybe some before and after pictures would be in order? Or at least, the after pictures!

[Mikek]

I expect that when we see the doctors tomorrow that they will start her on some meds. This morning she looks as though she doesn't have enough energy to pass wind.

[mishb]

Long Weekends/Public Holidays can really hinder progress sometimes :sad:

She doesn't need any energy today..........let her sleep, bring her a cuppa and put the footy on.
Tomorrow may be the start of a new Jenny. Unfortunately the big hitters take a little while to kick in.

I look forward to seeing her replying on here one day, that everything is good and she doesn't know what all the fuss was about.

[annekat]

Thinking of someone having Wegs but only being on prednisone and not one of the "big hitters" makes me uncomfortable! I'm anxious to see what they put her on. Whatever it is, there will be plenty of us on here who can share our experiences with it and offer encouragement.

[Mikek]

She s sleeping now.we both take granny naps after lunch and I always wake her with tea and a choc' biscuit. Do all Wegs sufferers have this intense pain in and above the nose. Seems to be the main source of discomfort .

[annekat]

She s sleeping now.we both take granny naps after lunch and I always wake her with tea and a choc' biscuit. Do all Wegs sufferers have this intense pain in and above the nose. Seems to be the main source of discomfort . I have read of others on here having that intense nose pain, but I never had it, even though I do have a perforated septum and a saddle nose. I don't know to what extent the two are related. I know some have polyps or other growths in their nose which I imagine could cause pain. Or just the fact that the nose is obstructed with hard chunks and crusts of mucus or hardened blood clots? If so, those should be able to be removed by an ENT doc if not with sinus rinses.

[Mikek]

I have read of others on here having that intense nose pain, but I never had it, even though I do have a perforated septum and a saddle nose. I don't know to what extent the two are related. I know some have polyps or other growths in their nose which I imagine could cause pain. Or just the fact that the nose is obstructed with hard chunks and crusts of mucus or hardened blood clots? If so, those should be able to be removed by an ENT doc if not with sinus rinses.
There s a growth of some description in the back of the nose. The ENT doctor who operated of Jenny's middle ear came to me following the surgery and said that he believed it to be a malignant tumour so he took a sample for biopsy. It was this biopsy that lead to the diagnosis of Wegener's and started us on this path of discovering Wegs. It's interesting to note that he also had to straighten her septum and yet I know for a fact that she never suffered from a deviated septum in the past.

[mishb]

The inflammation could have deviated her septum - I know that the ENT said that is what happened to mine but wont operate now until I am med free.

I sometimes get stabbing pain at the back of my nose but the tip of my nose is what is hurting at the moment.


I just want to wish Jenny all the best for her specialist appointment tomorrow and look forward to hearing what their course of action will be.

[Alysia]

Do all Wegs sufferers have this intense pain in and above the nose. Seems to be the main source of discomfort .

I know too well this pain in my nose :crying:
it feels like open bleeding wound/ mess in a very very sensitive area
rinses dont help me, only make it worse
hot shower helps for some time
walking helps because of the "circulation" of air...

[Mikek]

Jenny had her bone scan and rheumatologist check up this morning. the bone scan produced a good result.
She has been prescribed Methotrexate together with diminishing dose of prednisone currently at 50mg daily. The rheumatologist thinks that there is no involvement of liver, kidneys or lung at this time.

[Dirty Don]

I have done well on mtx and weaning pred...almost 2 years and am feeling fine...well, OK, pretty damn good compared to we all know what. My involvement is very similar.

[Mikek]

I have done well on mtx and weaning pred...almost 2 years and am feeling fine...well, OK, pretty damn good compared to we all know what. My involvement is very similar.
Thanks Don, Jen found your comment encouraging. Mike

[mishb]

Hi Mike,

I am also on MTX at 20mg and pred has been weaned down to 3mg

Nose is still stuffed (literally) and joints still a little achey but from R.A. but nowhere near as bad as they were before medication.

I hope they also told her to take folic acid (folate) as well.

[Mikek]

Hi Mike,

I am also on MTX at 20mg and pred has been weaned down to 3mg

Nose is still stuffed (literally) and joints still a little achey but from R.A. but nowhere near as bad as they were before medication.

I hope they also told her to take folic acid (folate) as well.thanks Michelle, yes she has frolic pills.

[Mikek]

Folic not frolic

[mishb]

Folic not frolic

Nah, frolic sounds so much better........they may help her get up and about :lol::lol::lol::tongue1:

[Mikek]

Is that what is called a froydian slip?

[Debbie C]

I love the Australian lingo. I can sit and listen to you guys go on all day and probably still not know half of what you are saying !! Mikek, I'm glad to hear they put Jenny on some mtx, I hope she has no side effects with it and starts to feel better soon. I, myself have a low tolerance with all meds that's why I am on just pred, which concerns me since I keep hearing from everyone that pred alone won't help you. I'll have to bring this up to my reumy next month and see what he says cuz isn't there someone on here ( I don't remember who ) that takes nothing at all ??

[Alysia]

I love the Australian lingo. I can sit and listen to you guys go on all day and probably still not know half of what you are saying !! Mikek, I'm glad to hear they put Jenny on some mtx, I hope she has no side effects with it and starts to feel better soon. I, myself have a low tolerance with all meds that's why I am on just pred, which concerns me since I keep hearing from everyone that pred alone won't help you. I'll have to bring this up to my reumy next month and see what he says cuz isn't there someone on here ( I don't remember who ) that takes nothing at all ??

Hi Debra,
im my 3.5 first years with WG I was on sulfa + pred (not allways with pred).
nothing more. but my nose became saddle. and i have no remission yet.

[annekat]

I'm glad the docs think she'll get by with MTX and not have to use the stronger, more toxic meds, such as CTX. I've been on MTX about a year, I guess, having been switched from CTX. I assume she's taking it once a week like most of us do. It can make one feel lousy and tired for the first couple days or more after each dose; everyone is different. I got over the worst of that after a few weeks. Splitting the dose within a 24 hour period helps.

What dosage of MTX is Jenny getting? My doc started me on a lower "maintenance dose" than most on here and I ended up flaring. Since raising the dose from 10mg. to 15mg. I'm over the flare and doing a lot better. Since Jenny is just starting, I'd imagine it's a little higher, though they may be raising the amount in stages. In any case, I'm happy with the drug overall. I hope Jenny is on the road to feeling better soon!

[Mikek]

Geeez debbie by, I'll sling another shrimp on the Barbie for yer and crack a coupler stubbies to drink yer health. Now a little surprise maybe! Jenny and I originally come from Berkshire in England about four miles from Windsor castle where we were educated to talk real propper.

[Mikek]

I'm glad the docs think she'll get by with MTX and not have to use the stronger, more toxic meds, such as CTX. I've been on MTX about a year, I guess, having been switched from CTX. I assume she's taking it once a week like most of us do. It can make one feel lousy and tired for the first couple days or more after each dose; everyone is different. I got over the worst of that after a few weeks. Splitting the dose within a 24 hour period helps.

What dosage of MTX is Jenny getting? My doc started me on a lower "maintenance dose" than most on here and I ended up flaring. Since raising the dose from 10mg. to 15mg. I'm over the flare and doing a lot better. Since Jenny is just starting, I'd imagine it's a little higher, though they may be raising the amount in stages. In any case, I'm happy with the drug overall. I hope Jenny is on the road to feeling better soon!jenny is on 20mg to start with.

[annekat]

jenny is on 20mg to start with. That sounds about like what I'd expect, not that I'm any expert, but after being on here awhile you sort of soak things up. If she doesn't do well on that amount, they might up it a bit, or maybe they plan to anyway.

[drz]

I love the Australian lingo. I can sit and listen to you guys go on all day and probably still not know half of what you are saying !! Mikek, I'm glad to hear they put Jenny on some mtx, I hope she has no side effects with it and starts to feel better soon. I, myself have a low tolerance with all meds that's why I am on just pred, which concerns me since I keep hearing from everyone that pred alone won't help you. I'll have to bring this up to my reumy next month and see what he says cuz isn't there someone on here ( I don't remember who ) that takes nothing at all ??

Have they tried all the drugs that can be used to suppress your immune system. There are several besides the four we usually see, with CTX and RTX being the heavy hitters and MTX and generic Imuran for active but mild cases. How bad are your symptoms and your lab work? Maybe they see you as a very mild case who doesn't need something stronger? Is your GPA considered active.

[drz]

How would yours be graded using this system?

Current treatment recommendations in WG depend on the severity and activity of disease. The European Vasculitis Study Group recommends grading disease severity of the AAVs into the following 5 categories[47] :


Localized - Upper and/or lower respiratory tract disease without any other systemic involvement or constitutional symptoms

Early systemic - Any, without organ-threatening or life-threatening disease

Generalized - Renal or other organ-threatening disease, serum creatinine level less than 5.6 mg/dL

Severe - Renal or other vital-organ failure, serum creatinine level exceeding 5.6 mg/dL

Refractory - Progressive disease unresponsive to glucocorticoids and cyclophosphamide

[Debbie C]

Drz. I was first put on ctx (i think 50mg -2x day ) I cant' remember, along with high pred and bactrim and folic acid and my reumy here said I was in remission and took me off everything. Well a few months later more nodules were in my lungs so I went to the Cleveland Clinc where I was given mtx, imuran and rtx, not all at once but when I was having bad side effects he took me off. My blood work has been good and my kidney dr said I don't need anything and so does my reumy . I am probably going tomorrow to get my monthy blood work done and pray it's still good. It just worries me that everyone says pred alone won't work and I don't want this stuff sneaking up and biting me in the a##. I would say I bounce back between 1-2 on that scale

[Debbie C]

Geeez debbie by, I'll sling another shrimp on the Barbie for yer and crack a coupler stubbies to drink yer health. Now a little surprise maybe! Jenny and I originally come from Berkshire in England about four miles from Windsor castle where we were educated to talk real propper.

I understood that ..and I wish I could come over for some grilled shrimp and a few cold ones and drink to all our health.
Don't get me wrong I love the way you speak,it makes people that live in the states sound boring !!!
And I loved the Crocadile Dundee movies !!!

[annekat]

Drz. I was first put on ctx (i think 50mg -2x day ) I cant' remember, along with high pred and bactrim and folic acid and my reumy here said I was in remission and took me off everything. Well a few months later more nodules were in my lungs so I went to the Cleveland Clinc where I was given mtx, imuran and rtx, not all at once but when I was having bad side effects he took me off. My blood work has been good and my kidney dr said I don't need anything and so does my reumy . I am probably going tomorrow to get my monthy blood work done and pray it's still good. It just worries me that everyone says pred alone won't work and I don't want this stuff sneaking up and biting me in the a##. I would say I bounce back between 1-2 on that scale Well, at least you WERE on CTX long enough to get you in remission the first time, and then when you flared later, the other drugs didn't agree with you, so they took you off them..... maybe that worked out because your flare was not as bad as your initial bad episode....... I think that is not unheard of, to just be on pred at some point to control Wegs. But when someone first has it, and is first diagnosed and treated, it seems wrong of the docs to try to rely on pred and to not move into the serious immunosuppressant drugs. At least that seems to be the consensus. If your bloodwork continues to be good, you probably have nothing to worry about. The lung nodules do seem troubling, though, and I don't know enough to comment on that.

[Mikek]

I understood that ..and I wish I could come over for some grilled shrimp and a few cold ones and drink to all our health.
Don't get me wrong I love the way you speak,it makes people that live in the states sound boring !!!
And I loved the Crocadile Dundee movies !!!
Boring be buggered! I had a couple of security guards apprehend me (and Jenny) in the public area around the pentagon just because I've got a beard(it was a dark beard then, alas no longer is)."Tasmania " he said" that's a Moslim state isn't it? He wouldn't et me take my camera bag into to lavvy( washroom) in case I wanted to convert my Pentax into a nuclear bomb.

[Mikek]

Following Jen's start on methotrexate yesterday, she was really crook this morning. Fainted on the kitchen floor and then threw up on the new carpet. I had to cancel her visit to the ENT doctor, I just couldn't have her endure the journey. The nose pain is still bad and the pain pills only last five hours so I'm topping her up with paracetamol/codein pills. I think next week she'll have her Mxt with food to see if that's better for her. Any suggestions?

[Mikek]

Scary business isn't it. Hope it works out for you.

[Mikek]

Well, at least you WERE on CTX long enough to get you in remission the first time, and then when you flared later, the other drugs didn't agree with you, so they took you off them..... maybe that worked out because your flare was not as bad as your initial bad episode....... I think that is not unheard of, to just be on pred at some point to control Wegs. But when someone first has it, and is first diagnosed and treated, it seems wrong of the docs to try to rely on pred and to not move into the serious immunosuppressant drugs. At least that seems to be the consensus. If your bloodwork continues to be good, you probably have nothing to worry about. The lung nodules do seem troubling, though, and I don't know enough to comment on that.this is a scary business isn't it. Hope it comes old for you.

[mishb]

Following Jen's start on methotrexate yesterday, she was really crook this morning. Fainted on the kitchen floor and then threw up on the new carpet. I had to cancel her visit to the ENT doctor, I just couldn't have her endure the journey. The nose pain is still bad and the pain pills only last five hours so I'm topping her up with paracetamol/codein pills. I think next week she'll have her Mxt with food to see if that's better for her. Any suggestions?

That's not good at all.
I was told to take them after a meal. I take mine at night time so that the worst of it is while I'm in bed, trying to sleep.

I have never been sick with them but do get a bit of a headache the next day.

I hope the vomiting doesn't last too long. It may be that she can't take them, and will need to try something else.

[Mikek]

That's not good at all.
I was told to take them after a meal. I take mine at night time so that the worst of it is while I'm in bed, trying to sleep.

I have never been sick with them but do get a bit of a headache the next day.

I hope the vomiting doesn't last too long. It may be that she can't take them, and will need to try something else. we'll see how next week goes.

[annekat]

Mike, it think it's normal that Jenny felt so nauseous, etc., after her first dose of MTX. This may go on for a few weeks. Planning the doses may help. Since she is taking 20mg., I'd suggest taking at least half of it at night before bed so she may sleep through the effects. Then she should take the rest during the next day and could even split that dose up in two parts. Or some other creative dosing schedule, as long as she gets it all within 24 hours. I know it won't be easy at first, but people do get used to it and the side effects become less. I know that has been true with me.

I'm sorry she missed her ENT appointment, as that is probably important. But you should both keep in mind that things will get better.

[annekat]

As for the food thing, I think I've been told to take it with food, but it doesn't say on my bottle. I've probably done both. I'd try it and see. I am anxious to hear what others have to say. Probably by the time she threw up, the meds had already been absorbed into her bloodstream, so she wouldn't have lost any.... I hope the fainting and throwing up is an initial reaction that stops soon!

[Alysia]

Hi Mike.
Im taking my MTX differently then all the others here, because otherwise I vommit. Im taking 2.5. mg a day X 6 days a week. it is 15 mg for a week. with food. no vommitting. no nausea. no side effects but little hair loss. when I read here that everybody is taking it differently I inquired my WG doc about it and he prommised me that it is totally o.k. to take MTX this way. he said that this way it is even more effective. he is one of the 10 best rheumatologists in Israel and I trust him.

[Mikek]

Such a lot of useful information. What a wonderful facility this blog s proving to be for us. Thank you all so much.

[drz]

Drz. I was first put on ctx (i think 50mg -2x day ) I cant' remember, along with high pred and bactrim and folic acid and my reumy here said I was in remission and took me off everything. Well a few months later more nodules were in my lungs so I went to the Cleveland Clinc where I was given mtx, imuran and rtx, not all at once but when I was having bad side effects he took me off. My blood work has been good and my kidney dr said I don't need anything and so does my reumy . I am probably going tomorrow to get my monthy blood work done and pray it's still good. It just worries me that everyone says pred alone won't work and I don't want this stuff sneaking up and biting me in the a##. I would say I bounce back between 1-2 on that scale

Then you were treated with some major cytotoxic drugs and usual standard meds. If you had bad reaction to them , they don't want to give them to you again since they may do more harm than good. I finally went off CTX for that reason. Some people have to periodically repeat every few months the drugs like RTX just for some partial control of the GPA stuff. A significant number of people aren't fortunate enough to get into any drug induced remission (refractory GPA). A small number of very lucky people get into a drug free remission and remain there for very long periods of time.

[Debbie C]

Yeah Drz..I think I've tried them all but I will never go back to rtx..I can't afford $ 16,000 and the risks of taking it are too high for me too try again

[Debbie C]

Such a lot of useful information. What a wonderful facility this blog s proving to be for us. Thank you all so much.

Mikek,we are just telling you all this stuff cuz we fiqure Jenny's probably got her hands full with "Tazmania". Just kidding you sound like a very loving husband. I really hope she gets used to the mtx and starts to feel better soon. Does she have a long wait to see the ent now.
It's by bedtime now so I'll say a prayer for all of us to have a better tomorrow.

[Mikek]

Mikek,we are just telling you all this stuff cuz we fiqure Jenny's probably got her hands full with "Tazmania". Just kidding you sound like a very loving husband. I really hope she gets used to the mtx and starts to feel better soon. Does she have a long wait to see the ent now.
It's by bedtime now so I'll say a prayer for all of us to have a better tomorrow.haha, I do the best I can. We've been together since we were young teens (>50years) and still like one another just a wee bit! I guess that we'll see the ENT doctor next week. We shall see.

[Mikek]

Yeah Drz..I think I've tried them all but I will never go back to rtx..I can't afford $ 16,000 and the risks of taking it are too high for me too try again
Do you have to pay for medication?

[Debbie C]

Do you have to pay for medication?

Drz, I have insurance that pays for most the cost ,I just have to pay a small deductable. But there are alot of medicines that are not covered and RTX is on of them

[Mikek]

Jenny's nose is bleeding now and there's a lot of pain in the nose. I think it's driving her potty. How long does it take on Pred and Mxt to have some effect? She just had a really bad night.

[Mikek]

I think we have a similar situation.

[pberggren1]

The mtx may not be enough. She may need rtx.

[Mikek]

The mtx may not be enough. She may need rtx.
Yes I'm wondering about that. If it doesn't improve I'll bring forward her next appointment and ask the rheumatologist. Do you think rtx to be more effective?

[Debbie C]

Mikek,sorry Jenny is still feeling poorly. Rtx is a heavy hitter but it also comes with BAD side effects for some, others do just fine. Read up on it first. Also I don't know how your insurance is there but make sure it is covered ( Michelle should know ). I know it is not covered with mine and it costs $16,000.00 for 1 infusion. Can you phone the reumy or ent or even her primary dr. and tell them whats happening instead of waiting for a appointment ?

[Mikek]

Mikek,sorry Jenny is still feeling poorly. Rtx is a heavy hitter but it also comes with BAD side effects for some, others do just fine. Read up on it first. Also I don't know how your insurance is there but make sure it is covered ( Michelle should know ). I know it is not covered with mine and it costs $16,000.00 for 1 infusion. Can you phone the reumy or ent or even her primary dr. and tell them whats happening instead of waiting for a appointment ?
Thanks Debra, I've made an appointment for next week. I will look into the Mxt business. $16000.00 is a cruise to China. How do you manage? I just looked at the Australian health website and it looks like its $36.00 for us.

[annekat]

Mike, it doesn't seem like Jenny's been on MTX long enough yet to know if it is going to work. She's only had one dose, right? But by all means discuss it with your docs at your first opportunity. As for the cost of RTX, that is not a typical cost for a drug in the US. It is extreme, and if I ever need it, then I'll find out whether I can even get a decent amount of it covered by my Medicare. The company that makes it has a program to help people, too, if they need it but are unable to get any coverage or pay for it themselves. But most of our drugs, if we are insured, come with a reasonable copay, such as $5-10, or maybe more depending on the drug or the insurance. It would sure be nice if we could get RTX for a $39 copay here.

[Mikek]

Mike, it doesn't seem like Jenny's been on MTX long enough yet to know if it is going to work. She's only had one dose, right? But by all means discuss it with your docs at your first opportunity. As for the cost of RTX, that is not a typical cost for a drug in the US. It is extreme, and if I ever need it, then I'll find out whether I can even get a decent amount of it covered by my Medicare. The company that makes it has a program to help people, too, if they need it but are unable to get any coverage or pay for it themselves. But most of our drugs, if we are insured, come with a reasonable copay, such as $5-10, or maybe more depending on the drug or the insurance. It would sure be nice if we could get RTX for a $39 copay here.
Yes, one dose only and I guess that I'm being Impatient. I've always been able to sort the problems and now to see Jen so unwell makes me feel quite useless. She's been on Pred for a couple weeks and we hoped that the nose pain would improve and that's not happening, it's still getting worse. I just spent a few moments reading about RTX and the side effects are awful.

[annekat]

Well, I don't blame you for being impatient.

A lot of people on here swear by RTX and consider it the best option for severe Wegs, and it may be. But at this point I'm just as glad to have gotten mine under control with CTX and MTX. All drugs have their side effects, risks, and inconveniences. The ones I've taken have been easily dispensed in daily or weekly pills instead of having to go somewhere and get infusions and go through that whole rigamarole. Not to mention the cost. For those who have done well on RTX, I'm glad. I may need to take it someday, if things get serious, since I've already taken a lot of CTX and they like to minimize your lifetime exposure to it. The fact that they put Jenny on MTX to start indicates that they may think has a less severe case of Wegs, or that it is limited to her upper airways, as you say. It is a milder and less risky drug than CTX. I hope very much that she begins to get used to it, stops feeling so nauseous, and that the pain in her nose begins to go away soon! It could take some time, but I'd expect to notice some improvement within 2 or 3 weeks. That is just a guess, though.

[drz]

Mike, it doesn't seem like Jenny's been on MTX long enough yet to know if it is going to work. She's only had one dose, right? But by all means discuss it with your docs at your first opportunity. As for the cost of RTX, that is not a typical cost for a drug in the US. It is extreme, and if I ever need it, then I'll find out whether I can even get a decent amount of it covered by my Medicare. The company that makes it has a program to help people, too, if they need it but are unable to get any coverage or pay for it themselves. But most of our drugs, if we are insured, come with a reasonable copay, such as $5-10, or maybe more depending on the drug or the insurance. It would sure be nice if we could get RTX for a $39 copay here.

I know Medicare covered RTX and CTX and everything else with my treatment while an inpatient on ICU three years ago but don't know what their position would be for it as an outpatient where your life is not seriously threatened. The fact that it is now listed as appropriate for treating GPA should make it easier for everyone to get coverage from all insurance plans including Medicare.

[mishb]

I heard in Australia that RTX costs about $15,000 plus if you don't have health insurance.......however if you are treated as an inpatient it cost $0.00 but permission is required from our Government. I have never looked in to it, these are just figures I have read on other sites.

If you have health insurance, then the cost the Mike said, sounds correct.

Dennis has had RTX so maybe Crissie can tell us what the correct procedure and costs are.

[Mikek]

I heard in Australia that RTX costs about $15,000 plus if you don't have health insurance.......however if you are treated as an inpatient it cost $0.00 but permission is required from our Government. I have never looked in to it, these are just figures I have read on other sites.

If you have health insurance, then the cost the Mike said, sounds correct.

Dennis has had RTX so maybe Crissie can tell us what the correct procedure and costs are. I looked here :Pharmaceutical Benefits Scheme (PBS) - RITUXIMAB (http://www.pbs.gov.au/medicine/item/9544h-9611w)

[Alysia]

well, you are invited to Israel if you want "cheapper" rtx. it costs here about 10,000$. this price include 2 infusions, 100mg each.
with the rest of the money, after covering flights, you can travel around and meet me :thumbup:
I only hope it is not cheapper because of less quality :ohmy:
this is the price my health service payed for it. (after I reached the ombudsman, to make sure they will give it to me). I payed for it 200$.

mike, mtx start working, as far as I know, only after 6 weeks. the same is about RTX. how much pred is she taking ? maybe she should have more pred. although in my case, pred didnt stop my bleeding nose even with 60 mg.

[Alysia]

i was wrong with the price, i edited it. still there left enough money...

[Alysia]

I only hope it is not cheapper because of less quality :ohmy:
.

and that remindes me of a joke (i hope the joke is not against the forum rules)

one arrives at Hell.
at the entrance of Hell, the reception officer tells him: you can choose which Hell you want to go to: American Hell, Russian Hell or Israeli Hell.
the man is asking: what is going on in those Hells ?
the officer explains: in the American Hell you wake up at 04:00, make a shower with boiling Coke, work in "hard labor" and go to sleep. in the Russian Hell you wake up at 04:00, make a shower with boiling Vodka, work in "hard labor" and go to sleep. in the Israeli Hell you wake up at 04:00, make a shower with boiling orange juice , work in "hard labor" and go to sleep. which one you choose ?
the man says: the Israeli Hell.
and why is that, asked the officer.
the man said: 04:00 is not 04:00, boiling is not boiling, labor is not labor...

[annekat]

Not sure I get it, Alysia, though I think it's fine with the forum rules. No doubt there's something I don't know about Israel, or maybe it's that I haven't had my coffee yet.....!

[annekat]

I know Medicare covered RTX and CTX and everything else with my treatment while an inpatient on ICU three years ago but don't know what their position would be for it as an outpatient where your life is not seriously threatened. The fact that it is now listed as appropriate for treating GPA should make it easier for everyone to get coverage from all insurance plans including Medicare. Good to know in case I ever need RTX.

[Mikek]

and that remindes me of a joke (i hope the joke is not against the forum rules)

one arrives at Hell.
at the entrance of Hell, the reception officer tells him: you can choose which Hell you want to go to: American Hell, Russian Hell or Israeli Hell.
the man is asking: what is going on in those Hells ?
the officer explains: in the American Hell you wake up at 04:00, make a shower with boiling Coke, work in "hard labor" and go to sleep. in the Russian Hell you wake up at 04:00, make a shower with boiling Vodka, work in "hard labor" and go to sleep. in the Israeli Hell you wake up at 04:00, make a shower with boiling orange juice , work in "hard labor" and go to sleep. which one you choose ?
the man says: the Israeli Hell.
and why is that, asked the officer.
the man said: 04:00 is not 04:00, boiling is not boiling, labor is not labor...
I think that the vodka would boil at a much lower temperature than water and evaporate. I don't think you could shower in it.

[mishb]

Pharmaceutical Benefits Scheme (PBS) - RITUXIMAB (http://www.pbs.gov.au/medicine/item/9544h-9611w)


Wow, that's an injection, I have never heard of an injection. Is that what they use and just put it with a saline infusion bag for slow release??
I also heard that it is approved for Rheumatoid Arthritis but not for other conditions - yet.

[Mikek]

I dont know any more about this injection.

[mishb]

I dont know any more about this injection.

Hopefully someone who has had it, can help us out :unsure:

[Mikek]

Jen had her ENT doctor consultation today. It seems that there's still some infection in the ear and much scabiness in the nostrils. He gave her a new stronger ear antibiotic and a nasal ointment. After she used the latter, a considerable bloody clot came down her snout. That seemed to make her breathing easier which caused her much relief.

[annekat]

Jen had her ENT doctor consultation today. It seems that there's still some infection in the ear and much scabiness in the nostrils. He gave her a new stronger ear antibiotic and a nasal ointment. After she used the latter, a considerable bloody clot came down her snout. That seemed to make her breathing easier which caused her much relief. Getting rid of a big scabby clot is a very good thing! Even two years along, without any nose pain or much breathing issues, I feel much better whenever I get rid of a big chunk of anything out my nose! I'm so glad Jen got some relief and her breathing is easier! Best of luck to her on the ear infection.... those can take some time to resolve, but it sounds like the ENT is on the right track.

[Mikek]

Jen had her third dose of methotrexate today. I suspect that she's improving a little.

[annekat]

Jen had her third dose of methotrexate today. I suspect that she's improving a little. That is good to hear, and I hope the side effects of the drug are becoming less of a problem for her.

[marta]

Jenny has gross discomfort in the nostrils/breathing department. Is this usual for this stage of the condition? She really is very uncomfortable and naturally, being early diagnosed, depressed at the prospect of poor health. What will Pred' actually do for her ?

Hey Mikek, sorry to hear what you're going through. It's a crappy ride at first while you're figuring it out, but you will and you'll get on top of the situation that seems heavy and daunting right now.

Yes that's very common what she's experiencing right now. Here's a link to my blog (that I've been neglecting for a while) with other Weggie Stories: Weggies Unite: Other Weggie Stories (http://weggiesunite.blogspot.ca/p/other-weggie-stories.html) - might give you a better handle on where you're at and what you can prepare for and how you become an expert patient in no time flat. I couldn't breathe through my nose for a while, but with getting the disease in more control my crusting, and stuffiness subsided and I got my sense of smell back.

The pred brings down the inflammation unlike anything else. Which is our main reason for discomfort and pain and disease damage. Inflammation is also the symptom that they use for diagnosis, so my question would be are they giving her just the pred because they suspect Wegener's and want to do more tests, or have they made a solid diagnosis, and if so why are they only treating the symptom and not using any chemo to suppress the disease process? If it's a solid diagnosis you need both chemo and steroids, at least that's my understanding based on the literature. Pred does have some immuno-suppressant qualities but not enough to stop disease progress.

Another thing that gets my skin to crawl is the drops in the ears for the infection.

It all started in my ears and after months I saw an ENT who told me it's an ear infection, and we put some tubes in to release the pressure and then it all went south pretty quick. I lost a ton of weight, had gone through a barrage of antibiotics for these 'infections' that weren't touched by them, but they kept trying all sorts of antibiotics when I went in for my final visit before ending in the hospital, my ENT told me that there's nothing wrong with me just a bad ear infection and to keep putting the drops in. "Yes, some ear infections really hurt" he said condescendingly to me, as I sat in front of him 25lbs lighter than our visit two weeks prior. It made me so mad and like I'm loosing my mind - I mean I'm pretty tough and how can a simple ear infection make me into such a puddle, I thought. Well next day, I was in the hospital getting told I have secondary lung cancer - whamoo. Well it turned out they were both wrong and I have Wegener's Granulomatosis, but it seems like a long ride to get a diagnosis, and then you end up educating the majority of the medical profession you run into.

So you have to find a doctor who you don't have to educate and instead he/she educates you.

Best of luck with you and Jenny and I hope that your ride is an easy one.

[annekat]

Marta, you might have missed the part where Jenny is now getting MTX as well as pred. Aside from that, I'm encouraged to read that you eventually got your sense of smell back. I'm hoping that might be the case with me, so I can smell my Oriental lilies, fresh lavender, good food, and any number of other things, unfortunately including the bad ones! I can still taste, and wonder if that means there's hope.

[marta]

Oooops... I missed a whole bunch of pages. I'm quite dorky today.

I'll never forget when I got my smell back, my hearing came back at the same time... I was in the yard, spring time, and I could suddenly hear the kids in the schoolyard about 4-5 blocks away, then the footsteps of someone walking down my street... I started to cry right there and then. Then suddenly I smelled something for the first time in a long long time, and it was dog poo. Almost gagged. I thought it was a funny ying-yang moment. Memorable for certain. It'll come, you watch.

[annekat]

Funny about the dog poo. I think I'd actually be happy to smell that at this point. I'm not so sure about the hearing, since someone decided I needed hearing aids.... however, they don't know everything, do they?

[Mikek]

Hey Mikek, sorry to hear what you're going through. It's a crappy ride at first while you're figuring it out, but you will and you'll get on top of the situation that seems heavy and daunting right now.

Yes that's very common what she's experiencing right now. Here's a link to my blog (that I've been neglecting for a while) with other Weggie Stories: Weggies Unite: Other Weggie Stories (http://weggiesunite.blogspot.ca/p/other-weggie-stories.html) - might give you a better handle on where you're at and what you can prepare for and how you become an expert patient in no time flat. I couldn't breathe through my nose for a while, but with getting the disease in more control my crusting, and stuffiness subsided and I got my sense of smell back.

The pred brings down the inflammation unlike anything else. Which is our main reason for discomfort and pain and disease damage. Inflammation is also the symptom that they use for diagnosis, so my question would be are they giving her just the pred because they suspect Wegener's and want to do more tests, or have they made a solid diagnosis, and if so why are they only treating the symptom and not using any chemo to suppress the disease process? If it's a solid diagnosis you need both chemo and steroids, at least that's my understanding based on the literature. Pred does have some immuno-suppressant qualities but not enough to stop disease progress.

Another thing that gets my skin to crawl is the drops in the ears for the infection.

It all started in my ears and after months I saw an ENT who told me it's an ear infection, and we put some tubes in to release the pressure and then it all went south pretty quick. I lost a ton of weight, had gone through a barrage of antibiotics for these 'infections' that weren't touched by them, but they kept trying all sorts of antibiotics when I went in for my final visit before ending in the hospital, my ENT told me that there's nothing wrong with me just a bad ear infection and to keep putting the drops in. "Yes, some ear infections really hurt" he said condescendingly to me, as I sat in front of him 25lbs lighter than our visit two weeks prior. It made me so mad and like I'm loosing my mind - I mean I'm pretty tough and how can a simple ear infection make me into such a puddle, I thought. Well next day, I was in the hospital getting told I have secondary lung cancer - whamoo. Well it turned out they were both wrong and I have Wegener's Granulomatosis, but it seems like a long ride to get a diagnosis, and then you end up educating the majority of the medical profession you run into.

So you have to find a doctor who you don't have to educate and instead he/she educates you.

Best of luck with you and Jenny and I hope that your ride is an easy one.hi, yes it's a solid diagnosis and,like you, Jen has ear tubes and now, a grommet and she hates the ear drops - they hurt.

[Debbie C]

I remeber a while back ago ( about 5 yrs ) I went to my then pcp for an ear infection and was told I had a middle ear infection and was given antibiotics,they didn't work so I went back but had to see a dr. covering for him and he said I had a inner ear infection and gave me different antibiotics to take, when those were gone and still in pain and getting sick I went to a reg ent which tested my hearing and said I had an outer ear infection,then was given a different antibiotic. I went back to my original pcp ,very sick now ,he said I was fine and just had anxiety. I went home very sick with night sweats and chilling and I called him at night and he told me to go buy a therometer and not to bother him cuz I was fine. Well I ended up in the er with c-diff from to many antibiotics lost about 20lbs, I was down to 89 lbs and thought I was dying.To this day I will not take an antibiotic unless I REALLY need it. I found the ent I go to know, he said my ear drum just gets swollen and I didn't need any antibiotics at all. Moral to my story....do not take to many antibioatics.
Mikek, I'm glad to hear Jenny to starting to feel a little better.

[annekat]

Debra, I wonder if you could have already had Wegs, or the beginnings of it, with that ear infection. That is how mine started. It took 3 tries with different antibiotics to get rid of it and I was sick for weeks. But no one thought I might have Wegs until 2.5 years later, after numerous sinus infections and ear problems. My ENT later said I'd probably had Wegs all along.

[Mikek]

I remeber a while back ago ( about 5 yrs ) I went to my then pcp for an ear infection and was told I had a middle ear infection and was given antibiotics,they didn't work so I went back but had to see a dr. covering for him and he said I had a inner ear infection and gave me different antibiotics to take, when those were gone and still in pain and getting sick I went to a reg ent which tested my hearing and said I had an outer ear infection,then was given a different antibiotic. I went back to my original pcp ,very sick now ,he said I was fine and just had anxiety. I went home very sick with night sweats and chilling and I called him at night and he told me to go buy a therometer and not to bother him cuz I was fine. Well I ended up in the er with c-diff from to many antibiotics lost about 20lbs, I was down to 89 lbs and thought I was dying.To this day I will not take an antibiotic unless I REALLY need it. I found the ent I go to know, he said my ear drum just gets swollen and I didn't need any antibiotics at all. Moral to my story....do not take to many antibioatics.
Mikek, I'm glad to hear Jenny to starting to feel a little better.thanks Debra,
Your story is all too familiar, maybe we need to educate the doctors.

[Debbie C]

Debra, I wonder if you could have already had Wegs, or the beginnings of it, with that ear infection. That is how mine started. It took 3 tries with different antibiotics to get rid of it and I was sick for weeks. But no one thought I might have Wegs until 2.5 years later, after numerous sinus infections and ear problems. My ENT later said I'd probably had Wegs all along.

Anne ,I wondered that also because it was about 3 yrs later when I got dxed and it was literally by accident. My boyfriend and I got rearended coming from a health food store.We went to the e.r to just get checked and they did a ct scan of my chest and found all these nodules in my lungs. They thought I had cancer at first. But I remember when I first moved back here from Fl. I had a hard time breathing and sinus headaches all the time.My dr. then put me on a neubulizer machine,by breathing got better and I stopped using it but I always blamed the move for my sinus problems because now I am surrounded by woods.So I may have had it a lot longer and noone ever knew. Who knows,I'm stuck with it now !!

[Mikek]

Jenny looks a bit improved to me and she's been cross with me today; that's got to be a good sign.

[Alysia]

speaking of ears problems, here is a little story:
my ears were in a terrible state, full of fluid (water?), which couldnt went out, the ear canal was swollen and I was some weeks on pred with no change. I couldnt hear well and I was desperate....
I was driving my car down a mountain, and then pufffff...
do you know the feeling in ears when you quickly change heights ?
sudennly I felt that the water in my ears "got down" or someting, no more fluid, I could hear again, I was so amazed and happy...
and then simultaneusly, the water in the radiator of my car "went down". I saw steam in front of me and for a second I became confused, what is going on here? then I stopped the car and realized the water "went down". fortunately my garage was close. never in my life I came so happy to the garage to fix my car, happy that there are no water, who care, in my car, but in my ears.
BTW lately I decided that since I cant "replace" my body, I will replace my very old car. I seperated from her (car is like a friend) with tears and bought new little car. this is the closer I can reach to "replacing body"....

[Mikek]

Jenny has had five weeks of Methotrexate/Pred reducing and I can see a positive improvement overall. Still bloody issues from throat and nostrils, huge appetite for food but generally much better. Her Methotrexate is to be by injection after this week. She had her bloods done last week and all acceptable levels. She has much trouble with insomnia.

[annekat]

Mike, the insomnia could be from the pred. It didn't affect me that way but does a fair number of people, I think. I'm assuming she takes it in the AM and not before bed. My doc says it takes about 4 hours for it to "kick in" after taking it, but in reality I think it is pretty much in her bloodstream all the time. Maybe when she gets down to lower doses she'll sleep better. Her huge appetite is very typical, of course. It sounds to me like she is doing very well! I'm happy that you are seeing a noticeable and positive improvement.

[Mikek]

Jenny continues to improve. From today her Mxt is injected, we've been told that this will help reduce the blood clots. Her sleeping problems persist. Pred is down to 20mg daily.

[Alysia]

Jenny continues to improve. From today her Mxt is injected, we've been told that this will help reduce the blood clots. Her sleeping problems persist. Pred is down to 20mg daily.

Hi Mike
Im glad to hear that Jenny feels better.
what are her sleeping problems?

[Mikek]

Insomnia chronic insomnia every night.

[rebekah]

Glad to hear Jenny is starting to improve, but sorry to hear she can't sleep. Unfortunately, insomnia is a side effect of prednisone and my least favorite one. I haven't been below 20mg of pred yet, but hopefully as she lowers the dose she will be able to sleep again. I can sometimes get in a few short 20 minute naps throughout the day, I know, it doesn't compare to the feeling of a full nights sleep, but it's something. I tried sleep meds that can be found at the local pharmacy, my doctor even prescribed me Ambien... it hasn't helped me, but might be worth a try. I would talk to your doctor, who knows, maybe they can prescribe her something to help her get some sleep.