Rocky road...

[Anth]

Hey all, I've had WG for about 3 years now. I live in Melbourne, Australia. Im on all the normal meds.. Prednisolone, methatrexate, bactrim, somac and other supplements.
Although I've been "okay" for the past couple years my bloods have never been really good.. i still get alot of joint pain and find it really hard getting a proper rest which makes life really hard.
Im finding it really hard to work a proper 9-5 job and because of my age (26) and healthy looking physique my GP who knows nothing about WG tells me i look fine and should try to stick to work..
Problem is he isnt me.. he doesnt know how im feeling and i cant do anything about it. Even my specialist looks at my like im crazy when i tell her i have pains just because my bloods say everything is "okay"
My problem is a cant get any help from the government because the GP thinks he knows my body better than i do..
Im going crazy and stressing out.. I've also lost alot of weight and dont know what to do, 80kgs before being diagnosed and im sitting on about 62kgs now.. who do i speak to if i cant speak to me GP and Specialist?

Its very lonely here and any help or advice would be great..

Thank you for reading.

[annekat]

Welcome, Anth,

Not being from Australia, I can't advise you on how to get help with your situation there.... however there are several on here who might have some ideas and could probably also connect you with some other Weggies in your area to talk to.

Aside, from that, I'm glad you found the forum, as it is the best place in the world for info and support for people with Wegeners. I don't know what I would do without it. Please keep us posted on your progress.

[drz]

I agree you should try connect with another doctor who has a better understanding of GPA and how it can manifest itself. Labs don't always reflect the clinical pix and a good doctor knows that. Ask your fellow Aussies for some names of better doctors or come see us in USA, Canada, or England and we can find you one.

[annekat]

And keep watching, there are several Aussies on here, and you will bump into them soon! You can send a private message to any of them, as well. And check the Weggie members map link at top of page, to see which Aussies have added their "pins" to the map, and add yourself if you wish. Our Big Kahuna, Andrew, who runs the forum, is from Australia, too.

[me2]

Welcome Anth,


Is this Michelles facebook group for Aussies? https://www.facebook.com/groups/516643745050360/

[Mikek]

Hi Anth, My wife, Jenny was diagnosed in May and if you passed her in the street, she looks just OK; she isn't. She isn't at all, with only enough energy to spend about fifteen minutes on her feet most days. Our GP knows very little about Wegs but fortunately, down here in Tassie, we're getting excellent and knowledgeable support from her Rheumatologist and ENT doctor. We found this week that her dentist had contacted her rheumatologist prior to working on her teeth. I suspect that living in a smaller community has something to do with this (we lived in Melbourne years ago). Wegs is relatively new to us and I really appreciate the fact that we were lucky enough(Wegs, Lucky ??) to have got an early diagnoses and to have a team of doctors working together to provide Jenny with the best outcome. You are going to have to get yourself a new primary health carer - now!!!! Get onto the Aussie Wegs FaceBook page. You will find several Victorians who will advise you about local providers. You will have to get used to my attempts at humour and Tim's whinging. It'll be worth it. All the best to you - keep your pecker up - it will be OK.

[mishb]

Hi Anth,

It's been 4 years for me and nearly 3 years diagnosed.
What side of Melbourne are you from? Myself and a few others are from the South Eastern Suburbs.

Your normal GP probably wont know terribly much about WG, but if he/she cares enough, he/she will a make a point of finding out and learning more about it.
I'm glad you have found your way here.......and if you are on facebook, come along to our group on there. You will find a lot of helpful Aussie information and also Mike's humour. A few of us even did coffee the other day. It was actually fantastic to meet another Weggie.

This forum still has the best knowledge from all over the world - it's the people who live with WG day to day......and they are awesome.

Anth, we need to find you a GP who cares and also a rheumatologist and depending on what symptoms you have, an ENT or other specialists.

Keep us posted.

[Anth]

Thanks for all the kind words and advice guys.. appreciate it. Im just a bit annoyed with life at the moment.. not being able to do things i used to is a real bummer and then thinking about the things i may not be able to do through life makes it worse.. i probably think to much though. I just want some normality with my life.. one day at a time i guess.
I keep playing over the time just before i got sick and went into hospital in my head trying to figure out how it happened.. Does anyone else get this? sorry for my rambling... its just i don't speak to many people about this stuff really.. not everyone understands.

[Anth]

I think ill have to get myself a face book. Sounds like you got diagnosed about the same time i did mishb.. I'm from the northern subs of melb. i see my specialist at the northern hospital. I'm sick of going there.. waiting 3 hours.. and then 2 mins of the same sh!t. touch my knee listen to my lungs tell me bloods haven't change even though they are higher than they should be but "that's just me" apparently and then send me off until next time.
Did you guys find your own specialists or where you referred to them?

[mishb]

I was referred to my specialists but you can also find your own and then get your doctor to write a referral.

I am seen as an outpatient at the Alfred Hospital in the City and, yes, the wait is exactly the same of about two hours or more and then I could be in there for 5 minutes if nothing is new or going on with my bloods - or, once I was in there for nearly an hour just going over things. The times vary.
This is the reason why they are always running late - because sometimes they might have someone in there for an hour or more, especially if it is someone newly diagnosed with something (most likely not WG).

Its too hard to avoid being on facebook these days. I tried and tried to not get sucked in - but it eventually got me and now with the Group, it really is like a new little family that I can't wait to find out each day how everyone one is doing.
Come on - it will get you too :flapper: and I'm sure one of the other Melbournians will have a specialists that they can point you in the direction of.

[Mikek]

I think ill have to get myself a face book. Sounds like you got diagnosed about the same time i did mishb.. I'm from the northern subs of melb. i see my specialist at the northern hospital. I'm sick of going there.. waiting 3 hours.. and then 2 mins of the same sh!t. touch my knee listen to my lungs tell me bloods haven't change even though they are higher than they should be but "that's just me" apparently and then send me off until next time.
Did you guys find your own specialists or where you referred to them?
Our GP kept giving Jenny different antibiotics and I could see that they were having no effect so I asked him, fairly firmly, for a referral to an ENT specialist. Whilst waiting to see the ENT, her facial nerves became affected. When we got to see the specialist, he arranged an operation within days. He thought she had a vigorous tumour in the nasals and warned me that he thought things fairly grim. The biopsy indicated Wegs.

[Mikek]

Whereabouts in Melbourne are you?

[Anth]

Thomastown.. I saw an ENT before i went in to hospital because i used to get heaps of nose bleeds but he sent me away saying he couldn't do anything until it healed.. i don't know.. i'm sick of doctors and specialists..

[mishb]

Are you serious - that is incredible :predrage:

I think I would have tried to find a new one straight away.

Try phoning around the some rhuematologists and just asking the question as to whether they have treated anyone with WG before.......it can't hurt.

[Anth]

My specialist sees other people with WG, she tells me, but i don't think they know enough and aren't willing to try new things.. i try to talk to my specialist about diet or supplements but every time i do its like they switch off.. i guess they get taught to use drugs so that's all they do.. Not to say that is wrong because without those drugs i wouldn't be here today but i feel it isn't enough. You know i think of it like this.. If its not working, fix it. or at least try something else.. No one should lose their quality of life. It's really upsetting and leads to other things.

[Mikek]

You need to get some help ASAP. Weg untreated can be terminal I believe. It's depressing for you to feel that your situation is not on a plan towards remission. You'll have to take control yourself and find a knowledgable weggery . Talking about discussing new ideas,I was able to discuss the medical use of marijuana with one of our doctors without causing a raised eyebrow.

[Anth]

"weggery" made me laugh!

i was in remission.. i think.. how does it feel to be in remission? completely back to normal? no pains but cant really push yourself like you could? I've never been off the drugs completely. the lowest i've been on is 20mg of methatrexate and 5mg of prednisolone

[Anth]

What was the outcome of speaking about marijuana?

[Mikek]

I really don't know. I don't think any weggies ever get completely cured but I think that some folk have long periods without symptoms but with or without meds? I'm not sure. I'm guessing that you're fairly young so have time on your side. Jenny and I lived in Sunbury in the seventies and worked in moonee ponds.

[Mikek]

He wasn't keen. I was talking about using the oil and I suspect that he thought I meant smoking. I didn't pursue the discussion.

[Anth]

I grew up in sunbury on my grandparents farm on Feehans rd just off Wildwood rd! Yeh with the research I've done it doesn't look like anyone really gets off the drugs completely. I know i have time on my side but let me tell you i would have rather got this when im 50. It kills me to see friends going out, playing sports and i cant most of the time. Also the thought of not being able to run and play with my kids like my father did with me.. stressful to say the least.

So not raising an eyebrow was the only thing to come out of your discussion? I've also researchedd that diet and eating the right foods for you really helps.. and not eating some helps too..

[Anth]

its a shame that you cant even talk to them about different things be it other "natural" drugs or diet..

I do a little bit of the self medicating you are talking about.. it helps with the pain. not as much as i'd like but any help is good. I'd say it more helps me to forget the pain and forget WG for a little bit.. its sort of like therapy. Im sure Jenny has told you how much it plays on her mind and how much it gets her down..

[Mikek]

We were in Riddles creek road. Again I'm interested in the oil not smoking buds. Google hemp oil, you might find some surprises.

[Anth]

I've heard about the oils and vaporizers but am yet to try. I say why not.. It doesn't hurt to try.

How did Jenny's WG come about? what was the first month like for her when symptoms started coming on? if you don't mind me asking..

[Mikek]

[QUOTE=Anth;71145]I've heard about the oils and vaporizers but am yet to try. I say why not.. It doesn't hurt to try.

How did Jenny's WG come about? what was the first month like for her when symptoms started coming on? if you don't mind me asking..[/QUOTEn
Jen and I are retired, mid to late sixties. In February this year we were enjoying a cruise with our twin daughters who were celebrating their 40th birthday. Following a boozy evening with the girls, Jen complained of earache and we agreed to visit the doctor on our return. Prior to this she had been fit and well. When we did get home, we had an emergency when Jen's bowel ruptured and she had to have
an emergency operation and a month of recovery so the ear problem, now steadily worsening was a secondary problem. As soon as we could, we visited our GP who gave her an antibiotic, it did no good at all and the pain got worse. Week after week, he gave her stronger antibiotics to no avail until I insisted she see an ENT doctor. Whilst waiting to see the ENT doctor, her facial nerves got involved and affected her mouth and eye on one side. When we got to see the ENT doc, he organised a hospital operation within days. Following the op he told me he'd taken a biopsy and thought there was a maligent tumour. A couple days later, he informed us of the Wegs diagnosis. that was in late May.

[Alysia]

Hi Anth,
big fish, you catch there :thumbup:
I see that the aussies here are taking care of you so well :thumbsup: so I just want to tell you: welcome :hug3:
you are not alone anymore. and this in itself is helping to reduce stress and to get more powers to handle this WG.
I would have being lost without this forum.

[Barbara N]

Are you on Prednesone? That should put weight on plus help the other symptoms.

[Anth]

Hi Anth,
big fish, you catch there :thumbup:
I see that the aussies here are taking care of you so well :thumbsup: so I just want to tell you: welcome :hug3:
you are not alone anymore. and this in itself is helping to reduce stress and to get more powers to handle this WG.
I would have being lost without this forum.

Hey Alysia, They sure are! Thank you for the warm welcome. I cant wait to get to know more people with WG. I feel like the weight of going through this on my own is already lifting..

[Anth]

Are you on Prednesone? That should put weight on plus help the other symptoms.

I'm not on Prednesone but i'm on Prednisolone.

Prednisone and prednisolone are synthetic members of the glucocorticoid class of hormones. They are an intermediate acting, broad antiinflammatory, medication. They have less activity than dexamethasone or betamethasone, but exhibit greater activity than hydrocortisone.
Though prednisone and prednisolone are used in the same manner and equally as effective, they should not be confused with each other. Prednisone is activated by the liver into prednisolone. For this reason and because it is more easily absorbed, prednisolone is the drug of choice when hepatic disease or insufficiency is present.

They have slightly different chemical structures. One is the metabolic precursor of the other.

The Prednisolone did make me put a bit of weight on at the start but i didnt like this so started watching what i ate.. (not picking up anything that was in front of me and eating it)
since then i've just been losing my appetite.. I think it has a little bit to do with a slight case of depression.. ill get through it though with the help of the great people on here :)