just diagnosed and got lots of questions!!

Hi All,

I'm so glad ive found this website, and people that know what wg is without me having to explain!!

I have just been diagnosed with wg after suffering with sinusitis and ear problems since may, its been a bit of a nightmare to be honest but im sure all of you have had similiar experiences!

Im 27 female and i live in the uk with my husband and my 2 children who are 2 and 4.

I have currently been on pred 60mg for about 4 weeks now and i feel 'normal' no pain, fuzzyness or runny nose! its amazing!! and on wednesday i have started mtx taken weekly, 10mg increasing to 20mg over 6 weeks and my steriods are reducing 10mg per month from now on.

Not really sure where to start with all my questions really.....

Firstly i appreciate that i may be in denial and the fact the steriods are making me feel so great after feeling so ill for the past 6 months, but im finding it hard to beleive that i really have this horrid disease. My kidneys and lungs appear unaffected and i have had a chest xray and all looks fine. But i have had no biopsy which i keep reading about, is this something all of you guys have had? they have diagnosed me on the fact that i have high ANCA levels and that i am responding to treatment well, after 1 week of pred my bloods showed no sign of inflamation apparently.

Also im really concerned about being over medicated for a condition that is milder than usual, the side effects of the medication scare me, and the fact that im probably looking at a lifetime of problems due to the medication not the actual disease seems a little hard to get my head around. As it hasn't effected my kidneys and my lungs is it likely too in the future? i have always suffered from mouth ulcers, nose ulcers and fluid in my ears so i feel it is something that i may of been living with for a long time, until the major flare with my ears in may.

Im a naturaly curious person and id really like to find a specialist (anywhere in the world! the american research seems a lot more indepth than the uk) that really understands this disease and maybe find out a little more about how it will effect me and the treatment i should be taking. Im currently under a rhemetologist that has treated other wg suffers before but with much more advanced disease. She has said that i will not be looking at coming of the mtx for at least 5 years, and she aims to keep me on it for 10! this seems so long, is this normal? Do you know of anywhere i should be looking to find a specialist?

Also for you guys living on mtx all the time, do you feel well, or do you class yourself as an ill person on treatment? i have got to accept that i will always have this condition, but im struggling to find answers to whether i will always feel different, or i can carry on with my life hardly noticing it! im nervous about the steriod weaning as im sure i wont feel this well without them, i was on steriods for facial palsy in the summer and once the dose reduced i plumetted back to square one, but the course only lasted 3 weeks then.

I understand what i am asking is how long is a peice of string and everyone is different, i'd just really like to hear how you all get on day to day with this and what changes have happened to you due to this.

I hope i dont appear rude in asking so many questions, its just one minute i feel fine and then i remember that i have this condition, that is likely to seriously reduce my life expectancy and i find that so hard to understand!!

Any input will be greatly received and i hope to get to know you all better soon

thanks

Jo

Welcome. It sucks you have this disease but at least you got diagnosed now.

With the pred, you should be tapering now 5mg per month until you get to 10 then a slower taper is in order. Some docs are saying an even faster taper, but I'm not so sure.

I think the UK research is prob just as good as the US. My doc is from Birmingham and is one of the leading Wegs docs in the world.

As for life expectancy, I would say most Weggies go on as usual. We might have a few years cut off but not that much.

Are you on an acid blocker like Nexium to protect your stomach from the pred? That is a must.

Feel free to ask any questions or just rant any time you like. We understand. We are one big family.

Welcome! Sorry it's under these circumstances that we have to meet. You have most certainly came to the right place. I was diagnosed Oct. 2011 and it's in both lungs. I started out on prednisone, bactrim and Cytoxan. I'm still on all meds and hope to come off at the end of the year.

Ask away. These guys on this forum are good and helpful! More so than most docs I've met. I'm still in denial taht I have Weg's, it's a very odd feeling.

Anyway, good luck and there are several on here that will answer your questions. Since I'm still fairly new, I'm still learning as well.

Take care!

Welcome, Jo! We are all grateful for the existence of this forum and I'm glad you found it. We would be so much more in the dark without it. The beginnings of your illness leading up to diagnosis sound so familiar. I'm glad you have no apparent lung or kidney issues as yet. I had lung issues as well as sinus ones, so was put on CTX, which would have been a good one to get to skip, if I only had sinus issues like you. Now I'm on 10mg./wk MTX which is a pretty low dose, but even that makes me quite fatigued for a few days after taking it. I don't know how long I'll be taking it. From the way it sounds, you started improving fast when just on pred, which is a good sign. It doesn't sound to me like you are being overmedicated, though I agree the pred should be tapered soon. Not that I'm any expert. As for the high ANCA and lack of a biopsy, it seems plausible you could be dx'ed that way, but others can answer that better.

Looking forward to hearing more from you!

Quote:

---

Originally Posted by jsmith

Firstly i appreciate that i may be in denial and the fact the steriods are making me feel so great after feeling so ill for the past 6 months, but im finding it hard to beleive that i really have this horrid disease. My kidneys and lungs appear unaffected and i have had a chest xray and all looks fine. But i have had no biopsy which i keep reading about, is this something all of you guys have had? they have diagnosed me on the fact that i have high ANCA levels and that i am responding to treatment well, after 1 week of pred my bloods showed no sign of inflamation apparently.

Also im really concerned about being over medicated for a condition that is milder than usual, the side effects of the medication scare me, and the fact that im probably looking at a lifetime of problems due to the medication not the actual disease seems a little hard to get my head around. As it hasn't effected my kidneys and my lungs is it likely too in the future? i have always suffered from mouth ulcers, nose ulcers and fluid in my ears so i feel it is something that i may of been living with for a long time, until the major flare with my ears in may.

---

Pretty natural questions there. I would say don't be concerned about over-medication if the meds are working. While it hasn't affected your kidneys or lungs, it could if you don't get it controlled. It's a weird disease and doesn't follow any rules. Some people get dreadfully ill, others are less so, but generally still pretty miserable when it acts up. Regardless give yourself time to understand how it affects you and don't underestimate it. That said, a lot of people seem to get in remission and do quite well, so don't get too down either.

I've had this a bout 2.5 years now and still have a million questions, so don't fret about asking :)

Welcome Jo,

I'm glad you found us. I hope we can help as you deal with this stupid disease. Your diagnostic process sounds similar to mine - a process of elimination. When I became ill in December 2010, I had rarely been sick, but I went downhill pretty quickly and spent a week in hospital in January 2011. When I was admitted, the only thing they ruled out right away was cancer (whew!!). They thought I might have TB or some type of pneumonia. When none of the other possible diagnoses matched my symptoms, they saw the high ANCA test and zeroed in on WG. When I asked if they had another possible diagnosis, they said no. They explained that the risk of treating me for WG and me not having it was pretty low - and that if I didn't respond to treatment, they would have to figure out what else it could be. I responded pretty well to treatment and enjoy pretty good health today.

Many doctors use MTX as a maintenance drug after a medicine-induced remission is achieved. Initial treatment at disease onset is usually cytoxan or rituxin for 4 - 6 months plus prednisone and bactrim. My current meds are 15 mg/week of MTX, 7 mg/day of pred, and a bactrim tab on M-W-F. I'm having no issues at this point. I began the year at 40 mg/day of pred and have slowly come down to 7. My rheumy wants me to taper at 1 mg/day less every two weeks. I'll continue that as long as I'm feeling good. I'll call her at the first sign that all isn't well - especially after I try to get below 5 mg/day. My rheumy also said not to ask her about coming off MTX for at least two more years.

Some things to be concerned about with pred that the others didn't mention is that with long-term use, you may experience a lessening of bone density - osteopenia or osteoporosis. I take a daily calcium and vitamin D supplement upon my doc's suggestion as I do have a little osteopenia.

I took a look at the Vasculitis Foundation website (EUVAS The European Vasculitis Society) and found that there is a WG specialist at Addenbrooke's Hospital in Cambridge:

JAYNE, DAVID, M.D.
Box 118, Renal Unit
Addenbrooke’s Hospital
Cambridge CB2 2QQ
United Kingdom
Phone: 44-1223-217259
Fax: 44-1223-586797
www.vasculitis.org

I know nothing about this doctor, but perhaps some of our friends in the UK can enlighten us.

Good luck, and don't be afraid to ask questions, etc.

Hi Thanks for replying

Quote:

---

Originally Posted by pberggren1

. My doc is from Birmingham and is one of the leading Wegs docs in the world.

As for life expectancy, I would say most Weggies go on as usual. We might have a few years cut off but not that much.

Are you on an acid blocker like Nexium to protect your stomach from the pred? That is a must.

Feel free to ask any questions or just rant any time you like. We understand. We are one big family.

---

I am on Omnaprozol for my stomach, but i think this is making me feel sick, and was going to ask if there is anything else i can take instead.

You also mention your consultant is in birmingham? could i have his name, as that is pretty local to me and would like to see someone with experience of this disease, even if they say the same as my current consultant, it'll just stop me from fretting!!

Thanks Pete, i will look into all that,


Another question is that i have reduced my steriods on wednesday and now i have pain when i sneeze again (ive become very sneezy again!) and my ears even tho not painful and i can actually hear a little better today, (im stone deaf in my left with little hearing in my right generally) just feel a bit fuzzy again, should i worry about this? or just give it time to adjust to the different dose of medicine. I think i may be coming down with a cold, but not sure!

I have an appointment monday with my ENT consultant about my ears, but feel hes just going to dismiss me from his clinic now as im under rhemetology, does anyone else here suffer from deafness, and if so has it improved at all, i cant find any answers to if i'll ever hear again!

Ive been made to feel like such a neurotic fool with the hospitals and consultants leading up to diagnosis the last thing i want to do is 'bother them for nothing' after that is what they said i was doing for the past 6 months until this diagnosis a few weeks ago!

Im also on Calcius for my bones, but i keep forgetting to take it!! must try harder on that one!!

Thanks for all the replys tho, still getting my head around the fact that there is no definitive answers and thats just the way it'll be, but positive to hear from so many of you.

Many of us here have lost our hearing to Wegs so a quick response to any hearing loss is very important since the best chance of restoring it comes with early treatment. I lost all my hearing and balance in right ear and had poor hearing in left ear already and that is a big handicap. High steroid treatment is usual response to try save hearing.
You also need vitamin D to help absorb the calcium There are several options to prevent GERD. I found protonix works best for me. 40 mg twice a day for me.
Good luck.

i didn't realise hearing loss was so common, can it be fixed at all!! im so fed up with not being able to hear my children speak to me, i keep thinking it'll return, but ive not been able to hear since may :-(

Quote:

---

Originally Posted by jsmith

i didn't realise hearing loss was so common, can it be fixed at all!! im so fed up with not being able to hear my children speak to me, i keep thinking it'll return, but ive not been able to hear since may :-(

---

I know I've read on here about people losing their hearing and getting it back. I lost a good part of mine and am wearing hearing aids, and I may never get it back. It depends on the type of hearing loss and the amount of damage done by Wegs.

I know that at least a couple people on here are seeing Dr. Jayne at Addenbrooke's who was mentioned above. Do a search on those names and you'll probably find some of their posts. Phil lives in Canada so I presume his doc from Birmingham now lives in Canada, too.

You should still be able to see your ENT doc now that you are under a rheumotolgist's care. Most people have a team of docs, including the rheumy and pulmonologists, nephrologists, etc., depending on what parts of you are affected by Wegs. But I don't like the idea of them saying you were bothering them for nothing! Sounds like a good reason to find a new team. If you like your rheumy, but he's not a true Wegs specialist, perhaps he can consult with one who is, such as Dr. Jayne.

Hi Jo, welcome to the group.

Don't be afraid to ask as many questions as you like........your questions and everyones answers will go a long way towards helping someone else who is also newly diagnosed.

I lost hearing in my right ear but it returned after treatment with pred. The best part for me about the hearing loss, was that if I went to sleep on my left side, I couldn't hear my husband snoring with the right ear :flapper:

Sneezing (about 30 times every hour) was one of the first symptoms for me, now I sneeze about ten times a day.

I have heard very good reviews on Dr. Jayne at Addenbrook so if you can, you should ask for a referral to there........Freaky or Geoff would be able to give you more information.

I am currently on 20mg of MTX and 5mg of pred. We are looking at trying to reduce the pred after I see my doc's again in December. I was told that I probably wont come off the MTX though......or not for a very long time.

Take care of yourself and as always........

Some here get their hearing back, or at least partly. Others benefit from getting hearing aids or surgical implants for cochlear implant or osseo integrated hearing implant which also restore a lot of hearing and can be a great improvement over being deaf. A good evaluation by a hearing specialist that can do both types of surgery is best way to find out what you need and what might help you the most. Good luck!

jsmith, my consultant is in my town in Canada. He worked in Birmingham for many years with Dr. Adou, Savage and Bacon. Jack, a long time member here that passed away, went to Birmingham. His doc was Adou. Adou is not retired but Birmingham is the best Vasculitis clinic in the UK if not all of Europe. I would try to get there at all costs.

Thanks for that phil, i will do some research. I feel even worse today, i think its the reduction in the pred last week, i find it so frustrating that i cant get hold of anyone to get any help, i panic that pain = more damage to my nose and hearing. But there is no one available on the rhemetology phone number i have been given until tuesday, so not sure whether to go back to taking my 60mg a day of pred on my own, but i dont really want to mess with it!

I am seeing my ent doctor in the morning, wish me luck, im so cross with the whole team but need to keep them on my side if i ever want to get any hearing back. i cant understand why it took them so long to diagnose me, i was admitted to hospital twice, had facial palsy and had every ent doctor in the hospital scratching their heads to what could be the problem. In the end they told me it was down to a deep routed emotional trauma and sent me out of hospital on anti depressants, telling me they were a new kind of pain relief, it was only when i read the patient information leaflet once home that i realised what they were!!

Going off on a rant now, but better get it out of my system before i arrive tommorow!! but i had one doctor tear up a prescription for pain releif in front of me, telling me they see my 'type' all the time, trying to get hold of strong pain killers for nothing! ive not even been able to get a sick note!! my blood is boiling i feel like tracking down every medical professional i have ever seen and saying to them, see i told you i was ill!

Anyway i will stop now as im only winding myself up,

Thanks again all and wish me luck that i can at least get some hearing aids

x

If you are anywhere near Birmingham, I'd take Phil's advice, not that I know anything, but I take his word for it. I don't think the doctors in a world class vasculitis clinic would treat you that way! And they'd probably hook you up with an ENT doc who has more experience and understanding about Wegs.

I hope your hearing comes back, but if you need hearing aids, my experience with the digital over-the-ear ones has been good. I could not afford them here in the US so got donated used ones thru my ENT/audiology office. I had to pay some relatively minor costs. I would imagine it's a little easier in the UK; I hope so.

Tell me about your pain and pred tapering regimen in detail jsmith. It is best not to adjust the pred on your own. Better to have your main Wegs doc always in the loop.

That is insane what those ENT docs did to you. They down right lied to you.

I'm sorry you have has such a bad run of docs. I STRONGLY SUGGEST that you get to Birmingham. I will ask my doc on the 21st which center you should go to.

You can rant here all you want. That is a big part of this site. It helps you get things off your chest.

Have you ever had your hearing tested? If so can you post a pic of your audiogram?

Hi i looked into the vascuilits clinic in birmingham last night and got very excited theres a clinic that sees 300 of us each year, i definately need to go there, if you dont mind asking for me phill, i will see if i can get a referral from my GP. my consultant seems ok, she only has 3 of us tho in her remit and theres no accounting for experience, plus ive only seen her twice and the next time will be January, just leaves me feeling a little abandoned!!

Phil my pred does was 60mg that i started on the 12th october, and this reduced to 50mg on the 8th November, and then i should reduce it to 40mg on the 8th December. The pain isn't too bad, doesn't warrant pain killers, but it is there, sinus and ear grumblings again. But i do think i am getting a cold, been saying that for a week now, but its not developing into anything more than a cough and runny nose.

Ive not had a hearing test, as my ears have been discharging for the last 6 months, but that has stopped now, my son is deaf, (unrelated i hope!) and at his last audiogram i didn't hear a thing and i know they went up to 90db!!

I will push for a hearing test today, i was laughed at when i asked if my hearing loss was permanent, so after 6 months i think they need to get moving so that i can have some hearing back, i manage day to day ok, but im an accountant, and people like to talk to me about confidential things, and it just cant be done!!

Ive heard good things about the digital ones too, they are so expensive, but i have a friend who works in marketing them, and he said he may be able to get me a 'free sample' for use, that would be just fantastic if he could!

Anyway, here goes to the hospital, will let you know how i get on.

Thanks again all.

Good luck Jo,

I think you will be on the right track now for, hopefully, a speedy pain free "new normal" with remission in your near future.

We look forward to hearing how it all goes.

I will ask my doc for sure the exact name of the clinic he was at. I know he told me before but I forget. Maybe send me a message on the 19th or 20th to remind me.

I would ask your doc if you can taper 5mg per week starting right now. That is also usually a faster and also safe taper as well.

WOW! You didn't hear 90db at the test? Your hearing is very severe then. I would get a complete workup by an ENT right away including brainstem response testing.

When I wore my hearing aids they cost me 5 grand in 2005.

Please keep us posted.

Hi very positive at the ENT today, first time ive seen him since i got the results and he was very apologetic about the previous treatment ive received. I have had my hearing tested but was unable to get a copy of the audiology report, they dont like giving you medical records!!

My hearing loss is classed on the higher moderate loss scale, between 75 and 60 decibels i responded too, which is a slight improvement on before! my cochlear bits all were normal so its just a problem with the sound getting into the ear, (im not sure of all the technical terms!)

Im having some lovely nhs hearing aids for the time being, but my ent man has sugested some bone anchored aids as my ears are still pretty raw inside from the infections and operations that i have had and bone anchored ones i could still use with a flare up, he said the op was relatively minor (if you ignore screwing titanium screws into my skull!!) i know nothing about bone anchored aids, but i am meeting with him after xmas to discuss these again with him, and to monitor all my other ENT bits and treatment ive been having.

Still taking my 50mg of pred, and waiting for the rhumetologist to get back to me! 5mg reduction sounds much better to me, i know last time i was on them for my palsy the I was weaned 20mg a day every three days and it hit me like a brick!!

Thanks again, i feel much more positive about my 'new normal' now

Just politely demand your records. You are the boss and they are your property.

I would get some second opinions before I would go ahead with a BAHA, bone anchored hearing aid. It sounds like your hearing is mostly a conductive loss then.

Quote:

---

Originally Posted by jsmith

Hi very positive at the ENT today, first time ive seen him since i got the results and he was very apologetic about the previous treatment ive received. I have had my hearing tested but was unable to get a copy of the audiology report, they dont like giving you medical records!!

My hearing loss is classed on the higher moderate loss scale, between 75 and 60 decibels i responded too, which is a slight improvement on before! my cochlear bits all were normal so its just a problem with the sound getting into the ear, (im not sure of all the technical terms!)

Im having some lovely nhs hearing aids for the time being, but my ent man has sugested some bone anchored aids as my ears are still pretty raw inside from the infections and operations that i have had and bone anchored ones i could still use with a flare up, he said the op was relatively minor (if you ignore screwing titanium screws into my skull!!) i know nothing about bone anchored aids, but i am meeting with him after xmas to discuss these again with him, and to monitor all my other ENT bits and treatment ive been having.

Still taking my 50mg of pred, and waiting for the rhumetologist to get back to me! 5mg reduction sounds much better to me, i know last time i was on them for my palsy the I was weaned 20mg a day every three days and it hit me like a brick!!

Thanks again, i feel much more positive about my 'new normal' now

---

My osseo integrated hearing implant works pretty good for me. Old name was bone anchored hearing aid. I have regular in the ear mold for a behind the ear hearing aid on other ear. I had to be in remission though for a year before they would consider any surgery for me unless it was emergency surgery.

I agree with Phil that bone anchored aids sound a bit extreme at this stage of the game. My digital aids have clear, open ear pieces which don't go far into the ear and allow plenty of air to get in. I think I could wear them even with an ear infection. I have mainly conductive loss and no one has ever suggested anything else.

Quote:

---

Originally Posted by annekat

I agree with Phil that bone anchored aids sound a bit extreme at this stage of the game. My digital aids have clear, open ear pieces which don't go far into the ear and allow plenty of air to get in. I think I could wear them even with an ear infection. I have mainly conductive loss and no one has ever suggested anything else.

---

Hi I agree it sounds a bit extreme, i need to look into it a little more, he said they dont usually offer it but he will make an acception, i have been really messed around, and if id of been listened to earlier, who knows i may be able to hear a little more.

From what i understand, they take only minutes to do and can be removed just as easily in the future should they not work, the bone anchored ones will fit in with my lifestyle a lot better, but we'll see ive got til after christmas to think about it and see how i get on with my sexy over the ear ones!!

I need to consider the risks with my medication too and healing, but will leave it a while, my heads still spinning from everything else.

Still no word from rhemetology, everyone is on annual leave!! thats just great when you need advice, i'm hoping if i could get seen by a bigger clinic like birmingham then this wouldn't happen in the future. I have seen a GP that said 'have you tried to increase your steriods to make you feel better' i said no, that i wanted to talk to a medical professional first, and he then replied, well how do i know the steriods are making me feel worse!!! God bless the NHS. eventually we decided that i should take 55mg tomorrow and see if that improves!!

Well, I really know nothing about the bone anchored aids, I just thought they were for more severe stuff than simple conductive loss. True, the over the ear aids are not glamourous looking! I'm sure you will make the right decision.

Does sound like they are a little loose with the advice on steroids and you need better docs for that. Pred can make people feel better or worse with either lowering or raising the dose! It is not that predictable. And its main purpose is to help control inflammation and the disease, not to immediately make you feel better.... it's not aspirin.

Hi - I am also a 'J Smith' from England and after reading your post, felt prompted to finally register as a user.

I was suspected of having WG in July 2011, but it seems I may have been 'lucky' to have suffered a secondary rather than primary vasculitis attack.

Having gone through some of the emotions attachning to such a diagnosis, I deeply sympathise with anybody who has this horrid illness.

I wish to draw your attention to the following website: Home Page | The Lauren Currie Twilight Foundation

Whilst Lauren's case is heartbreaking - you will find some useful information here including a 'video' by Dr David Jayne at Addenbrookes.

I wish you (and everyone on this forum) all the best.

jimix, welcome to the forum, and thanks for sharing the link. I think I've read about Lauren before.

I'm wondering about "secondary" vs. "primary" vasculitis. Does this mean you had blood vessel inflammation that was a side effect of some other illness or condition?

Hi there Jimix, there are a few of us J Smiths!! Thanks for sharing the link, i will spend some time looking at it.


With regards to my steriods, im just concerned that my symptoms have returned, is this ok? i was expecting not to have the symptons return once reducing the dose and starting MTX, maybe im just panicing, i know that i will feel different with the change of the medication as my body gets used to it, but i really wasn't expecting to go back to how i was before, im not that bad, but each day is getting gradually worse, and today my nose is bleeding again! just worry i'll wake up tommorow and my ears will be discharging again too!

Hi Anne

Well I am hoping that was the case although the other illness or condition remains unconfirmed.

In April (2011) I had fleeting arthralgia, followed by a month of gastrointestinal problems, night sweats and weight loss followed by coughing up blood for a few days. You can see why the chest physician suspected WG!

A CT scan a month later appeared normal and I have witheld from taking any medication throughout. I have had regular follow ups at the Hospital and my CXRs and PFTs are normal although my PR3 ANCA remains elevated (last count 36). As time progresses I am more hopeful I don't have an underlying condition (yet feel for those who do).

Regards, James.

Thanks, James. I hadn't really thought about anyone having secondary vasculitis until a friend with Lupus, when I told her what vasculitis means, said "oh, well then, I have vasculitis, because I have inflamed blood vessels." I couldn't really argue with that, since I know little to nothing about lupus. But in retrospect I was a bit annoyed because the implication seemed to be since I don't have lupus, but just have vasculitis, I must not have as serious a condition as what she has. In fact, I have WG, a less serious case than some, so far, but WG nonetheless... There wasn't enough time in the conversation to really get into it and make an impression as to the potential seriousness. And I would have liked to tell her that I don't think lupus is considered one of the Vasculitis diseases, even though it is a serious autoimmune disease.

Sorry to hear you are suffering with WG. I was diagnosed in November of 2008 by lung biopsy. 5 to 10 years on mtx seems like alot to me. I was on mtx for about 6 months and then switched to cell cept. I was being treated locally until my Dr. called and said he didn't know how to help me any longer. He referred me to The Cleveland Clinic where I am still being treated. The medication that has helped me is rituxan, it is done by I.V. with the dose 2 weeks apart every 8 to 9 months. I am currently in remission because of the rituxan. The meds I take make me feel tired all the time, but other than that I feel good. I was 57 years old when I was diagnosed.

Quote:

---

Originally Posted by jsmith

Hi I agree it sounds a bit extreme, i need to look into it a little more, he said they dont usually offer it but he will make an acception, i have been really messed around, and if id of been listened to earlier, who knows i may be able to hear a little more.

From what i understand, they take only minutes to do and can be removed just as easily in the future should they not work, the bone anchored ones will fit in with my lifestyle a lot better, but we'll see ive got til after christmas to think about it and see how i get on with my sexy over the ear ones!!

I need to consider the risks with my medication too and healing, but will leave it a while, my heads still spinning from everything else.

---

When I got my BAHA the staff told me they were given to people with serious conduction loss through regular hearing mechanism and also for people with history of chronic ear infections that can't handle regular haring aids that block the ear canal because ofri9sk of infections. The BAHA aid doesn't cause the moisture buildup that my regular behind the ear mold does. The amount and kind of hearing loss you have will determine what type of aid is best for you. It took three months for bone to heal around the titanium implant screw before they gave me the snap on healing aid. It took the doctor who did the surgery two minutes to decide it was appropriate for me but the hearing evaluations took a couple hours or so first. It is a great improvement of being deaf. There are a couple different types of surgery to implant the screw. Mine removed the hair follicles for the area on inside of skin which causes a bald spot the size of a small coin and numbness in this area which also causes some itching but otherwise the operation is rather simple. You can look at some videos about this on Youtube if you search for them.

I lost my hearing due to fluid in my inner ear. My ENT put tubes in my ears and that solved the problem. My balance is still terrible probably from the meds.

Quote:

---

Originally Posted by Dan27

I lost my hearing due to fluid in my inner ear. My ENT put tubes in my ears and that solved the problem. My balance is still terrible probably from the meds.

---

I loss my balance when WEGS took my hearing in right ear so my balance problems are from Weg damage, not meds. The meds I took for neuropathy did a number though on my balance and coordination and some other meds can do that too.

Quote:

---

Originally Posted by Dan27

I lost my hearing due to fluid in my inner ear. My ENT put tubes in my ears and that solved the problem. My balance is still terrible probably from the meds.

---

Sometimes it is that simple. My ENT said my ear drums are way caved in and it wouldn't work to put tubes in. Next time I see him I'll have to ask for a better explanation of why it wouldn't work. He had considered tubes earlier, before we knew I had WG, but hesitated because of holes in the drums that hadn't healed or scarring that was too thick. All that was from a severe bilateral ear infection that may have been the start of WG. I'm glad tubes solved the problem for you.

hi OP, where do you live?

Dr Jayne at addenbrookes in cambridge is a specialist in wegeners. he was my doctor when I was in the UK and now I'm back overseas my doctor here consults with him sometimes (there are no wegeners specialists here).

i dont understand why they would keep you on medication for 5- 10 years?? this seems extreme.

As to what life is going to be like for you ongoing, it varies with everyone. I was diagnosed 3 years ago now and i have been off medication for one year. I am one of the fortunate ones in that I feel very well and life is normal. I am careful to look after myself as i always feel the cloud of wegeners hanging over me. I eat a lot of raw foods, i exercise (running) and try to avoid stress.

Hi I live in gloucestershire, south west england, cambridge isn't too far away from me.

I have also got tubes in my ears, but this has not helped my hearing :-(

I have seen my consultant today as my symptoms have worsened, they still arn't really painful, but i have the pressure back behind my eye, sinus pain and blood when i blow, and my ears are about to go to town i think!

She is sending me to have iv pulse steriods, tomorrow, tuesday and Thursday next week, ive not heard of this before, im still on 55mg of pred a day, what are your opinions people?

Thanks

oh and i have got really really shakey, hands mainly, do you think that might be the MTX or something else?

Quote:

---

Originally Posted by jsmith

oh and i have got really really shakey, hands mainly, do you think that might be the MTX or something else?

---

I had shaky hands while on CTX and still a little while on MTX, but it has lessened.... I'm wondering if it was the pred, since I'm on a lot less of that than I was.

I had hand tremors shortly after diagnosis from treatment and think it was mainly the high dosage of pred meds but I was also on CTX and lot of other meds too.

Same here. I was started with Pred and CTX, and also had the hand jive stuff. It mostly went away when the Pred came down but not completely.

Quote:

---

Originally Posted by Dan27

Sorry to hear you are suffering with WG. I was diagnosed in November of 2008 by lung biopsy. 5 to 10 years on mtx seems like alot to me. I was on mtx for about 6 months and then switched to cell cept. I was being treated locally until my Dr. called and said he didn't know how to help me any longer. He referred me to The Cleveland Clinic where I am still being treated. The medication that has helped me is rituxan, it is done by I.V. with the dose 2 weeks apart every 8 to 9 months. I am currently in remission because of the rituxan. The meds I take make me feel tired all the time, but other than that I feel good. I was 57 years old when I was diagnosed.

---

Dan, what dr. do u see at CC ? I also go there and lately I am thinking about stopping going there and just seeing my local kidney dr. I was very dissappointed with him my last visit.

Quote:

---

Originally Posted by HopeinTN

Same here. I was started with Pred and CTX, and also had the hand jive stuff. It mostly went away when the Pred came down but not completely.

---

I remember having trouble even feeding myself for awhile. Did you? I couldn't read my signature either.

Mine wasn't near that bad. I'm sorry you had such a hard time with it. I mostly noticed it when at work and typing or sorting thru papers.

Mine wasn't that bad, either. Same thing, sorting thru papers and such. But bad enough that one or two people noticed it.

Ok Smithy :) The secret for getting some sort of life back is getting to an experienced consultant Rheumy AS QUICKLY AS POSSIABLE!. If not done already, I would go to my GP AND write to your current consultant and demand urgent (ask first) refereral to Addindbrooks and Dr Jayne. Your current consultant has had several months to get your condition under control and would have seemed to have failed.

I am no expert but would have thought it to be expected for you to be seen by your consultant weekly or monthly untill there is an element of control of the WG. Any decent WG consultant offers a method of contacting them or their specialist nurses for advice quick intervention can be a life saver with this condition. Monthly blood tests are standard also as the Mtx can cause problems and for some people (but not all) the test offer evidence of activity of WG. The infusions should help though even if they mean you can't sleep - get a lot of work done though:) The ENT man also needs to have WG experience and I would expect that Dr Jayne will have their own - use them.

No one should need to be on high steriods for too long and recuction is important. I found that every time I reduced steriod levels, then the symptoms i had changed too. Sometimes i would get very emotional, others, headachs, sore eyes, hearing loss, BUT in each case these would go away after a maximum of 8 days after the reduction. So, yes, reductions do make you feel bad again for a few days. sadly, if the symptoms continue then increasing the steriods again , waiting a month or so until things settle now before trying again.

Living life with WG IS a balance - Don't know if you have seen this but it's worth a read. I found it very helpful. The Spoon Theory written by Christine Miserandino | But You Dont Look Sick? support for those with invisible illness or chronic illness

You can't fight this, I've tried (as have many others and lost). Normal life is unlikly to be resumed any time soon. The best we can hope for is remission and a good standard of life. Do too much in the early days and you will spend the next three days wondering what hit you , so , unless you like feeling grotty, play the game and live a smooth...er life. The spoon theory helps with this.

regards
Paul

Thanks paul, good advice, and i love the spoon theory, im going to use that one.

Learning to take life slower is going to be the hardest thing, but i can see it also having its advantages!!

I have called addinbrokes today, there is a 6 week wait for an appointment, which is fine, i have an appointment with my gp on monday to get a referral, im a little worried about upsetting my current consultant, as we were paying to see her privately and then she managed to sneak me back into the nhs, but im sure she'll get over any offence caused. and at the end of the day i need a specialist, safety in numbers and all.

x

Quote:

---

Originally Posted by jsmith

Thanks paul, good advice, and i love the spoon theory, im going to use that one.

Learning to take life slower is going to be the hardest thing, but i can see it also having its advantages!!

I have called addinbrokes today, there is a 6 week wait for an appointment, which is fine, i have an appointment with my gp on monday to get a referral, im a little worried about upsetting my current consultant, as we were paying to see her privately and then she managed to sneak me back into the nhs, but im sure she'll get over any offence caused. and at the end of the day i need a specialist, safety in numbers and all.

x

---

All positive Smithy :) Your consultant will just have to go on holiday for three weeks instead of a month - She'll live!!

Quote:

---

Originally Posted by Hammy8241

All positive Smithy :) Your consultant will just have to go on holiday for three weeks instead of a month - She'll live!!

---

Great advice Paul. I love the spoon theory, my family and co-workers have all read it and it is very valuable. When I get to work they ask how many spoons I have and if I am having a low spoon day they try to re-arrange things for me so I don't use as many.

Your advice about finding a balance is excellent. i remember when I was first diagnosed I kept trying to get someone here to give me answers about how to develop a if this happens then wegs will go this direction etc. I remember Jack basically telling me to get over it and that I had to find a new normal. It was really the best advice I had received. I guess that I would be kidding myself and you guys if I told you that I still don't find my science mind trying to break it down better. I have always dealt with things by visualizing what is happening at the cellular level, a picture of the cell in my mind and how it looks, how the little sodium or potassium ions looked going back and forth, how the t cells and b cells looked as little travelers and warriors. I can't do that with Wegs and it makes me crazy. So...... I play Jacks post in my head and I try to get over it and find my new normal.

Lot's of rambling, can you tell I haven't been able to get past 40mg yet??? I guess it's better than the 60 but pred head is still in full swing.

Light warrior. Just wondering how many spoons you'd say on a good day? I've never thought of using like that. I just let people know when I'm about to run out which I guess is a bit late really!

Quote:

---

Originally Posted by Lightwarrior

Your advice about finding a balance is excellent. i remember when I was first diagnosed I kept trying to get someone here to give me answers about how to develop a if this happens then wegs will go this direction etc. I remember Jack basically telling me to get over it and that I had to find a new normal. It was really the best advice I had received. I guess that I would be kidding myself and you guys if I told you that I still don't find my science mind trying to break it down better. I can't do that with Wegs and it makes me crazy. So...... I play Jacks post in my head and I try to get over it and find my new normal.

Lot's of rambling, can you tell I haven't been able to get past 40mg yet??? I guess it's better than the 60 but pred head is still in full swing.

---

Even when I know better it doesn't stop me from having pred moments of nostalgia thoughts of how things were better at one time and day dreams that they will be again. It is hard to remember all the time that things change and seldom go back to the way they were. But it is hard to enjoy your "new normal" if you spend all your time thinking about the past or day dreaming about a future that may never come. Trying to stay in the present and practicing gratitude really helps me most of the time. It isn't easy but seems the best way to try manage the losses from Weg damage and other things.

Jsmith, welcome to the best little Wegs Forum in the world. This group of people have saved my butt on more than one occasion and in fact my early days were similar to yours in that I had a specialist that had completely abandoned me, and has taken years off my recovery by his lack of care. I'm sorry you have this sucky disease, but life does come back, although slightly altered it is still life. I also have a 6 year old, she was 3 when I was diagnosed, and that was probably the hardest for me. But we're all out on the other side where life feels much closer to the old life but still very different. We're all happy, and love every second of life and time with each other. WG and the early fight to stay alive have give us perspective and have in fact made my little girl much more sensitive and empathetic. My body is a little worse for wear but my spirit is stronger and better than it has ever been in my life. I feel like after that experience I can take on anything. It's been quite a journey. People on here that know me can attest to me being nauseatingly optimistic, but although it was a yucky battle at the start (physically, emotionally, psychologically) coming out of it makes me feel like a million bucks. I still have aches and pains and walk around the house like an 80 year old sometimes, I will still be on Imuran (gentle chemo) for the rest of my life, I no longer work at my job, but I'm happy to be able to do something that could change things for the better and to be with my amazing family and friends.

I know, gag. It sounds over the top, but I mean it all from the bottom of my heart.

As for the ears. Any luck? I had the same problem and in fact my first symptoms were in my ears and going deaf and lots of pain... I had my ENT, who also missed it big time, put tubes in my ear drums because the eustachian tube was inflamed and blocked and created a vacuum in the middle ear which in turn collects fluid from adjoining cells and fills up and kills your hearing. A very simple procedure is to put a couple of tiny tubes in your ear drums (takes about 5 minutes max) at the ENT and they allow the ears to drain, and prevents infection from setting in, and clears up your hearing. Only downfall is you can't swim with them (you get a set of earplugs). After about six months they come out on their own and if your disease is under control and the eustachian tubes are no longer inflamed it should be without any long term effect - this is if your problem is what I said, the others speak of problems that involve the nerves and the solutions are as they said, but it's worth checking this option before taking more drastic steps.

And lastly, the way the doctors treated you - I was cringing as I was reading it - it makes me so angry. What really sucks is that you're not the only one. Although Wegener's is predominately a male disease, autoimmune disease, the umbrella we fall under is predominately a woman's disease and this is how many patients are treated before diagnosis... this is something that I want to change by raising awareness and making some of these doctors held accountable in some way.

Quote:

---

Autoimmunity and Women
Even though there is some universally accepted knowledge about autoimmunity, its victims -- mainly women -- have suffered from a lack of focus and a scattered research approach. For example, autoimmunity is known to have a genetic component and tends to cluster in families as different autoimmune diseases. In some families, a mother may have lupus; her son, juvenile diabetes; her sister, antiphospholipid syndrome; and her grandmother, rheumatoid arthritis.
Getting a proper diagnosis is sometimes as difficult as living with the disease itself. Victims face problems not only because physicians often don't think of autoimmunity, but also because of who they are, namely, women in the childbearing years. As a rule, this is a time in a woman's life when she looks healthy, though looks can be deceiving. Often, women who suffer from autoimmune diseases are not taken seriously when they first begin consulting their doctors. A woman's symptoms are likely to be vague in the beginning, with a tendency to come and go, and hard to describe accurately to her physician. In a typical scenario, she is often shunted from specialist to specialist and forced to undergo a battery of tests and procedures before a correct diagnosis is made, which can sometimes take years.

---

Here's the link to the whole story: :: American Autoimmune Related Diseases Association, Inc ::

I hope this helps, and I've heard nothing but accolades about Dr. Jayne. I know a few people that are his patients and they regard him with love and respect. He is a world leader in WG.

That's not over the top Marta. That was beautifully said. I thought you were still working? I'm sorry you can't work. I know what that is like. Why do you say you will have to be on Imuran for the rest of your life? My doc wants me to start weaning off it soon.

Quote:

---

Originally Posted by Hammy8241

Light warrior. Just wondering how many spoons you'd say on a good day? I've never thought of using like that. I just let people know when I'm about to run out which I guess is a bit late really!

---

I don't know that I have ever given the spoons a number. Just saying it is a "good spoon day" or a "low spoon day". is usually helpful.

Marta,
I didn't know you weren't working either. I agree with Phil your words were articulate and not over the top at all. I am under a month that I am taking the plunge to quit working and go on disability. I am excited and scared to death, I have always worked and to let go of a good job because I can't do it anymore is just so hard.

Quote:

---

Originally Posted by Lightwarrior

I don't know that I have ever given the spoons a number. Just saying it is a "good spoon day" or a "low spoon day". is usually helpful.

---

It made we think that those with autoimmune diseases could benefit from some sort of wall thermometer /chart which, instead of degrees F or C is marked with the number of spoons (or energy levels) we have for the day.


When you get up in the morning , just slide the marker to how you are feeling that day. Might save the awkward daily question on how we are feeling that day and warn your partner that a normally quite reasonable question is likely to lead their head being snapped off!


Another job for Marta?

Jo,
Are you taking folate? I think folate is pretty standard with MTX--helps with side effects. I had the shaking hands thing--Rheumy said it was from pred--it goes away in a few months. My Rheumy said to take the MTX after dinner & go to bed so I'd sleep through any side effects. Well I took it after dinner but I didn't go to bed, I wasn 't going to sleep a 8PM, but I didn't have any side effects anyway. Hopefully you won't either:biggrin1:

Light I had no idea. Well when you get settled in and start looking for stuff to do, let me know, cuz I have lots of ideas. I just sent out letters to Oprah, The Osbourne family, Toni Braxton, Venus Williams, Nick Cannon and Brooke Shields inviting them to our next PJ Day. Don't know if you don't try - ha ha ha... Maybe we can chat on Skype sometime...

Hammy, ask and ye shall receive... see attached, and use a magnet.
Can't seem to attach it though... bugga. Well it's a spoon-o-meter poster to put up on your fridge. If you want it send me your email address and I'll send it to you.

Very late to this game.... Welcome Jo. I agree with what Hammy said several posts ago: get thee to a Wegs specialist!

If you only had sinus and ear congestion problems I'd say the pred dose sounds too high. But with moderate to severe hearing loss it might be justified. Dr Jayne will know for sure and make sure you have the best ENT as well.

I was treated horribly by so many doctors along the way. So many of us have been. There is no excuse for it, but the good thing is that you'll get better at standing up for yourself in an assertive and non-aggressive way. That's a useful life skill, Wegs or not. :biggrin1:

Hi All

Thanks again for all your lovely words, ive had a very positive couple of weeks :-) i love the spoons theory and have been using it, i have sundays as spoon polishing days (i do nothing at all to prepare me for the week, and ive been remaining very very calm, no stress and actually from being the worlds biggest stress head before im finding things happen so much easier when you just dont stress. Instead of shouting at the kids for drawing on the wall this morning, i commented on what a lovely picture it was, and how id prefer it on a piece of paper, but hey go and get some wipes and clean it off, within 5 minutes walls were clean, kids happy and me serene!!

My pred has been reduced to 45mg and i am reducing it 5mg every fortnight, ears are still a little tender but im feeling much less foggy with the lesser pred, and this last week i went up to 20mg of mtx and i didn't feel at all nauseaus like i have been, actually without wanting to jinx it i think its working :-)

Just need to find the energy to get through xmas, without alcohol and all will be good. x

I really like the "spoon polishing" days idea. :thumbsup:

What a great way to respond to your kids' misbehavior. It reminds me of what my teacher used to tell her kids: "Now you know something you didn't know before!" Imagine if we were all raised in such loving and compassionate ways. Thank you for doing that.

Smithy - you know i can't book into a hotel now without thinking of you !!!

Great (and important) to keep the stress down when you can - love your reaction - Banksy eat your heart out!( Banksy for our overseas friends)

Christmas can be a 'doddle'. Just plan it in advance. Prep the veg in advance of the day. The table can be laid in advance. Just work out a written timed schedule and most of all, don't forget to kidnap anyone who is passing/visiting and get them to help you. Most important is to "run out of spoons" when the question of washing up is raised :) There are benefits with WG. lol

I know i may get a bit of 'flack' here but IMO a G +T or two or glasses of wine will NOT kill you. It's the reqular consumption that will kill off your liver (and you) with Mtx. A life is for living and no way am i going to be 100% goody two shoes with the rules. HOWEVER, I will respect this WG and try not to 'piss it off' too much:) I am on 25mg Mtx injection weekly for the past three years and have no reaction to the odd glass here and there.

I'm sure it will go well....and if it goes wrong? Christmas in a hotel or cruise sound good next year!

Have a great time.

My doc did not tell me, and I did not ask him, whether I could drink alcohol with MTX. The info sheet that comes with the drug implies that you should "avoid" it but is a little vague about how big a deal this is. I have not presently been drinking because I have not felt like it, but I did a bit during the summer and nothing happened. I, too, have the feeling that a glass or two of wine here and there is probably OK, as long as we keep in mind that both MTX and alcohol can affect the liver over time and that caution is advised when combining the two.

My rheumy said no alcohol at all, but also added that the British protocol would allow one or two drinks per month. I've been drinking 2-3 non alcoholic beers per week as a substitute. I like Kaliber (Guiness) and Buckler (Heinneken). I've had no problems. I'll probably have a glass of wine on New Year's Eve. I'm taking 15 mg/ wk of mtx with no issues.