Introducing myself to you all for support and friendship I hope!

[HeatherR]

Hi, my name is Heather. I was diagnosed with WG Aug 2nd 2010.
Back in May of 2010 I had severe joint pain.
Was hospitalised with failing kidneys on July 29th 2010.
Lucky me I had 7 plasma exchanges and an iron transfussion.
I had two doses of 80mg of prednisone via IV
Many many tests and xrays.
I was discharged (with lots of meds) after 15 days so that I could attend my father's 80th birthday celebration.

14 months on and I'm still on lots of meds.
No longer on cyclophosphomide but on Imuran.
Still on pred.

I wake with pain and go to bed with pain.
My emotions are so flexible but I tell myself that I am blessed to still be alive.

My GP and Rhumatologist believe that I have had WG in remission since 1983 before the birth of my third Son.
the specialist told me that back then if I was diagnosed with the disease I probably would not have gone into remission as the treatment wasn't as good back then especially with the Kidney involvement. The reason I went undiagnosed was because the specialist wanted to do a kidney biopsy but I was too busy being a young mum.

Who knows why WG returned - sure don't - but it did and I'm trying ever so hard to be positive but I do find this very difficult.
I have no energy, an annoying cough, I'm tired all the time and can't concentrate for any length of time.

I'm trying not to be a "wo is me person" and I'm thankful that I found this forum a few months ago and due to the glitch being fixed have been able to register.


Heather

[renidrag]

Welcome Heather, sorry you had to find us. We have people here who a ready to listen and help any way we can. Interested in the doses of meds you are on now? Others will follow with more questions.
Dale

[vdub]

Welcome! Sure a bummer to have the prerequistes to be a member of our little club, but I'm glad you found us

Be sure put your stick pin in on our map -- WegMap (http://www.zeemaps.com/map?group=242717)
Just click on additions, add marker -simple, and select the color of the stick pin. Please don't use the candle or sunflower. The candle is reserved for members who have passed.

[Sangye]

Hi Heather, I'm glad you finally made it on! I'm sorry you're suffering with continuing symptoms and side effects. I still have most of those symptoms more than 5 years post-dx, and I know it can really get you down.

How much pred are you on now? Are you in remission or is the Wegs still active? I had "smoldering" Wegs for 2 years, even though my docs thought it was in remission.

[Widthofacircle]

Hi Heather and welcome.
Sorry to hear you have been having a tough time. It seems there are no set rules with Wegs. It affects all of us in different ways. My rheumy tells me I am "sort of in remission". I do not have any of the serious symptoms like joint pain and swelling and kidney and lung involvement that I had in the first year following diagnosis which was back in April 2009 however I have a constant runny nose ,sore eyes, tiredness and well I won,t go on but it is a pain. I am still on Pred, Cellcept, and Septrin.
I hope your condition will improve and I would like to say you have found the best site here for advice and support as there are some wonderful people here who share their experiences for the benefit of all members. I would know very little about this affliction had it not been for the people here
Brendan

[Psyborg]

Welcome to the forum Heather.

[HypnoticEyez]

Welcome to the forum Heather. Sorry that you qualify to join us. I hope things get better for you.

[Dryhill]

Welcome to the Forum Heather. I hope you go back into remission very soon.

[elephant]

Welcome Heather, be patient ...it will get better.

[Dirty Don]

Welcome Heather...I, like you, have discovered through medical history discussions with docs that I most likely have had WG for many years, but was dx this August...darn near died as a perfect storm hit me this summer. But, am in early treatment & remain hopeful...mostly due to good docs and aggressive treatment...and THIS forum...my learning curve on here has taken off...I ask honest questions and get honest answers/perspectives. This is a great group of people despite our Weggie tendencies!! LOL...best to you...ask lots of questions!

[mishb]

Hi Heather.

It seems we have a few things in common ....both in Melbourne and both diagnosed at the same time

Mine also started some years ago with what was diagnosed as RA and then got progressively worse in the joints, muscles, sinus, eyes and ears that finally had a diagnosis. No kidney or lungs

Saw ENT today at 'The Alfred' (which hospital do you attend?) and they still say WG but he told me that Rheumatology are sticking with Mixed Connective Tissue and that maybe we should just go along with that, even thought they (ENT) know I have WG. The reason he wants me to go along with the MCTD is because he said that there is nothing really that ENT can do for me now.... unless things get worse, and therefore don't want to see me for another six months, so to just stick with what RA tell me to do. He did say though that he is pretty sure that there is no nasal crusting etc in MCTD...lol

It doesn't really make any difference, the meds are the same so that's what I now am ....an MCTD case.

Ask as many questions as you need to, and remember that no question is too small or too silly.

Take care of yourself and I hope things start to improve.

[NicShaf]

Hi Heather, welcome to the site! Hope things start getting better for you soon. You'll find lots of advice and support here, glad you found us.

[Kami]

Hello! Sorry to hear of your ordeal. I really wish someone would figure out what causes it or causes it to flare. It would help me to understand (and deal with better) why I have been chosen for this life. Hope your pain gets better soon, it's so much worse to deal with when you are in constant pain. Welcome to the group! Kami

[Al]

Heather--My response, too, is both "welcome" and "so sorry".

You touch on a number of interesting points. It used to be that the medical community kind of pooh-poohed the idea of "simmering WG". But this disease does seem to be somewhat in the background for a long time for many people. (I suspect that my own ailment showed itself, in retrospect, at least 15 years before the diagnosis.

Here's hoping that the plasma feresis helped! The statistics are on your regard, though there are a lot of unknowns. Relapses are curious, though no less beastly for it. There are many possibilities. You have certainly been through the wringer, and it is great that you can remain positive. On the other hand, woe is you, most certainly. How you deal with this unequivocal bad break is the key. Let us know more about your journey, and we'll walk with you as long as the disease gods let us!

Al

[HeatherR]

Thank you all for your warm welcome.
When you have a disease that makes you unique it's nice to meet (on line) other people who share this unique journey.
My GP thanked me for the new learning curve I have given him. He made the comment that not only did I have a rare disease but I have a rare component of it.... Yeah lucky me....

It was he who help with the diagnosis in that when I went to the Rheumatologist as an emergency appointment he gave me past blood tests to give him. The Rheumatologist read the GP's report (going back 28 years) and had me immediately admitted to hospital as he believed he knew what I had.

The current meds I am on are:
Azathiprine 150mg; Nexium 20mg; Spiractin 12.5mg; Avapro 150mg; Lipitor 10 mg;
Oroxine 100/150mcg - probably should have mentioned I have Hashimoto's disease (Dead Thyroid)
Setraline 50mg - an anti depressent because for some reason I am depressed :(
I also take Fosamax plus 70/140mg - once a week
OsteoVit (Vitamin D and Calcium) X 2; Coloxyl with Senna (oh yeah I have diverticulitis);
Pyroxine (Vitamin B6) 100mg and Glucosamine 1500mg X 2
I take Panadol Osteo (665mg) X 2 on waking and before bed
and Panadol (500mg) as required during the day for pain

I've a cupboard full of other meds should I require them - some stronger pain killers.
As I am a registered migraine suffer I also have special meds for when I have migraines.
And as I suffer with nausea there's meds for that as well
and don't let me forget the meds for when I have vertigo.

Life would be so much better if I could get a break from the constant pain.
I have no energy and sitting at a computer for any length of time causes pain in my eyes (I'm keeping that a secret so shhh)
Also back in November last year the week after my third son's wedding I had a fall and broke my hand - thy told me it was a "boxer's break"

Again thanks for the welcome and please don't think I'm whinging or anything - it's just really nice to put it all down for others to read where I won’t need to go into in depth discussions.

Michelle you asked which hospital I attend for treatment I go to The Royal Melbourne. My next appointment is Nov 8th.

Heather

[elephant]

I have a dead thyroid too. My WG specialist asked me when my thyroid disease was diagnosed. It appears that some people with autoimmue diseases have thyroid problems too.

[HeatherR]

My thyroid died when I was 35 and I was diagnosed with WG last year at 50 so bring on 65..... :)

[delorisdoe]

Heather--My response, too, is both "welcome" and "so sorry".

You touch on a number of interesting points. It used to be that the medical community kind of pooh-poohed the idea of "simmering WG". But this disease does seem to be somewhat in the background for a long time for many people. (I suspect that my own ailment showed itself, in retrospect, at least 15 years before the diagnosis
Al

I guess I am lucky as my doctors have fully embrassed my smoldering wegeners. Sometimes I think I'm not so lucky though. I have a lot of pain that we don't treat. I think my doctors may be afraid of treating me due to my over treatment in the begining.:sad:

[Chris G]

I guess I am lucky as my doctors have fully embrassed my smoldering wegeners. Sometimes I think I'm not so lucky though. I have a lot of pain that we don't treat. I think my doctors may be afraid of treating me due to my over treatment in the begining.:sad:

Someone's definitely afraid of treating it. :flapper:

[Chris G]

Welcome Heather. Many of us would be lost without this group to lean on. It's wonderful knowing that you're not alone, and being able to ask whatever you want, and to get answers and support. And we fully expect that there will be whinning!!! So bring it on!

[delorisdoe]

I whine. I dont mean to and I try to keep it to a minimum but lately...I whine.

[Chris G]

I whine. I dont mean to and I try to keep it to a minimum but lately...I whine.

No whining allowed! Didn't you get the memo?:flapper:

[delorisdoe]

No I got no such memo.

[pberggren1]

MEMO:

Leigh is not allowed to whine anymore.........lol

[delorisdoe]

ok then.

:frown::frown:

[delorisdoe]

one more thing...phil and chris-female-are mean.

that is all

[Al]

one more thing...phil and chris-female-are mean.

...But I'm not, Leigh. I may be confusing, but I am nice. Go ahead and whine--you deserve it; you're good enough, and you like people...!

Al

[HeatherR]

I'm not whining I think but I'm so tired all the time and have no energy. I can't concentrate on anything for any length of time - When do I get my life back to all the energy I had before I took ill with this stupid disease??????????????????????????????????:crying:: crying::crying::crying::crying:

[pberggren1]

one more thing...phil and chris-female-are mean.

that is all

Suck it up there Sunshine........lol

[Chris G]

Yeah.......what Phil said. :lol:

[Chris G]

I'm not whining I think but I'm so tired all the time and have no energy. I can't concentrate on anything for any length of time - When do I get my life back to all the energy I had before I took ill with this stupid disease??????????????????????????????????:crying:: crying::crying::crying::crying:

I'm sorry you're having such a hard time right now Heather. I remember that horrible chunk of my life a few months ago when I couldn't concentrate on anything - I felt like I was drunk all the time. It was horrible. But, please believe that it will get better with proper treatment!! I had one round of rtx treatments in May, and will be having another round in late November. I feel SO much better!! My brain is functioning normally, and I have just a few minor symptoms that remain. The fatigue is substantially less than it was. I don't know what your treatment plan is, but when you're on the right drugs, you will begin to feel better. Keep your chin up!! And feel free to whine all you want!

(It's just Leigh who's not allowed......lol)

[Psyborg]

I'm not whining I think but I'm so tired all the time and have no energy. I can't concentrate on anything for any length of time - When do I get my life back to all the energy I had before I took ill with this stupid disease??????????????????????????????????:crying:: crying::crying::crying::crying:

This disease can be pretty depressing at times. The best you can do it try to stay positive. If you look through the forums you'll find that we have folks climbing mountains and competeing in triathalons. I may never be what I was able to do before, but I think I appreciate what I can do now so much more.

[Al]

I'm not whining I think but I'm so tired all the time and have no energy. I can't concentrate on anything for any length of time - When do I get my life back to all the energy I had before I took ill with this stupid disease??????????????????????????????????:crying:: crying::crying::crying::crying:

Some days are bad, and others are not so much. That is a positive. Another positive is being in a community, like us. I am a sick old geezer, I know, but when I can be of service to family, friends, clients, or anyone else, I feel like a million dollars. Even your contributions here, Heather, are great. And, I hope, therapeutic for you!

Al

[Lightwarrior]

I whine. I dont mean to and I try to keep it to a minimum but lately...I whine.

Go ahead and whine, we can take it. To whine is to shine (okay I made that up). Sometimes it feels good to vent.

[Sangye]

I'm not whining I think but I'm so tired all the time and have no energy. I can't concentrate on anything for any length of time - When do I get my life back to all the energy I had before I took ill with this stupid disease??????????????????????????????????:crying:: crying::crying::crying::crying:

It varies. I never have--not even close. But many others do get back a lot of their strength. Some get it all back! You don't know which you'll be. It's early on for you. Be hopeful but live it one day at a time. :hug2:

[HeatherR]

thought I'd post an update.
Friday we went to Sydney to spend the weekend with my son and his family for the weekend and Friday night I broke a rib.
didn't go to a hospital for diagnosis cos I didn't want to tell the hospital emergency that I had WG for fear of being admitted.
Saw my specialist on Tuesday and he understood my reluctance to go to an er in another state.
Had the chest xrayed and yes another broken rib - I'm so lucky.
Still have all the joint pain as well. Have decided that it's time to go with the flow and cope as best as I can.
I am still getting very tired and have a daily nap.
Thanks for all your support

[jola57]

Oh Heather, I am so sorry, as if you didn't have enough of a warry. It does get better, be patient, the pain finaly eases off and the meds do their work and bring bloodwork in line.
I do hope the ribs heal fast and you start to feel better.

[Psyborg]

thought I'd post an update.
Friday we went to Sydney to spend the weekend with my son and his family for the weekend and Friday night I broke a rib.
didn't go to a hospital for diagnosis cos I didn't want to tell the hospital emergency that I had WG for fear of being admitted.
Saw my specialist on Tuesday and he understood my reluctance to go to an er in another state.
Had the chest xrayed and yes another broken rib - I'm so lucky.
Still have all the joint pain as well. Have decided that it's time to go with the flow and cope as best as I can.
I am still getting very tired and have a daily nap.
Thanks for all your support

I definitely feel your pain. I tipped over my motorcycle last May and broke a rib and it was pretty nasty. Not much they can do for it either. I hope you feel better as soon as possible.

[Sangye]

Yikes, Heather that's so painful! This may sound like a stupid question, but was the trauma enough to break a healthy rib? The reason I ask is that rib fractures can be a sign of osteopenia.

[Kami]

Thats how I felt at first too. Hang in there! It does get better. Couldn't concentrate or accomplish anything. Some times we just have to give in and give our bodies a little time to heal but it will get better. Sorry about the rib, that sounds horrible!! Set little goals for yourself. WHen I first came home I couldn't even hardly walk so I set a daily goal of walking so many steps. People would say why don't you read a book? I couldn't even look at a book, my mind couldn't comprehend what I was reading....It gets better, baby steps!!! Hang in there!!

[HeatherR]

Thanks for the encouraging words.
It is so annoying to not be able to concentrate. I am trying to build my internet business and prior to July 2010 this was going so well - now - well...........
I have been diagnosed with osteopenia because of broken ribs in September of 2010 and then a broken hand in November 2010. (I used to be so active in my church especially during the Christmas season and I now jokingly say God is giving me a rest but 2 years hmmm not too impressed with myself.