My name is Shawn

[sbeach78]

I just received my diagnosis on 5/2/2014. Backstory if your interested started back in February. I was sick as a dog, I was having feverish night sweats, scalp infections, chest congestion, weakness, and blurred vision in one eye etc etc.... Went to the doc. Who put me on antibiotics, with no results. Next doc. Put me on an antifungal. Next doc put me back on antibiotics. None knew what they were dealing with. Finally half dead my wife drug my sorry behind to the ER. They diagnosed me with flu a and b , with double pneumonia after a week sent me home. Two weeks later still not recovering went back to er. My kidneys were failing they started me on pred. And I startered recovering they were not so quick to release me the secound time but instead transfered me to OU Med..in OKC. They after days of pokes and prods finally. Concluded my WG diagnosis. They have me on cytoxin pills and 80mg pred. I was supposed to have a kidney biopsy Thursday but due to infection it was changed till Tuesday and or whenever the infection clears up...yeah more meds..that's my story I will stop rambling now..
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[windchime]

Welcome to the forum Shawn. Sorry you had to find us, but glad you did. This is the best place to be if you have wegs. You've been through a lot in a short period of time. I glad they found it when they did.

If you've been lurking for awhile you know there is a wealth of information on the site. The archives are great for research. There are a lot of loving, caring people here that support each of without judgement. So if at any time you feel the need to rant, chat, ask a question please do. We help each of out when and where we can.

Again welcome to the forum, glad you'e here.

[Dirty Don]

Welcome Shawn, this is the place to be to gain an understanding of what you are and will be going thru in the next months. There are many experiences, facts, and opinions on here...you will have to sort thru the trash and good stuff to gain your own understanding and approach and deal with your 'new normal'. Your story is very familiar to me as I wandered into WG in the same manner...docs not knowing/guessing, wrong drugs for wrong dxes, and finally a collapse which brought on some very good care...sorry you had to get to that point...but you can and will get better. Best to you.

[annekat]

Welcome, Shawn, and thanks for sharing your story. Don't worry about rambling... that was short compared to many. Everyone's story is a little different, but many of us went through a time period of not getting a diagnosis and being treated for everything else under the sun. I also was put on CTX and pred and my lung involvement cleared up within 2 or 3 months... luckily I haven't had kidney involvement but did get hit in the sinuses and ears, as many have, which tends to drag on because of the damage done there. Just hang in there and you will get better and more able to return to your life as usual. I hope you will continue to participate in forum discussions.

[sbeach78]

I plan on it everyone seems caring and sincere. The info is helpful too.

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[mishb]

Hi Shawn and welcome to you from me in Australia.
As you can see, we are from all over this great world.
WG is not picky, it doesn't care if you are American or Australian or even Sth African, but we can all come to this one place, any time of the day and find some excellent advice - I'm just really sorry that WG also found you :crying:

I'm glad your wife dragged you to the hospital and I'm glad that they finally came to the correct diagnosis.

We look forward to helping you get through this and also helping you with anything that you may not be sure about in the next few weeks.

Take it easy Shawn and ............

[vdub]

80mg pred! I guess it would be a silly question to ask if there's anything left to eat in the house or if you have found the late night channel with I Love Lucy reruns.... :-)

[sbeach78]

True the thirty poundsi lost in the hospital is back plus a few..

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[annekat]

I saw you were on pred but didn't notice it was 80mg., and it's been a month! I wonder if they'll start tapering that soon. Aside from the eating factor, some people tolerate it better than others, in terms of nervousness, sleeplessness, and something we call pred rage. On the other hand, in the beginning stages, I was so fatigued from the illness and probably the CTX, I don't think the 60mg. pred bothered me much at all, and I slept just fine. In fact, all I did was sleep, get up for awhile to cook something and eat it in front of the computer, and then go back to sleep.

[sbeach78]

They are tapering it off 80 is what they started me on at 40 mg today..yeah 80 is what they sent me home on but I was so ill it didn't do anything but make me eat...I sleep just fine

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[annekat]

Sounds like we had a similar experience. That lung involvement can really take a lot out of you. I hope your kidneys are doing better, too.

[sbeach78]

Yes between the rheumatism docs the renal Guy, and the eye doctors they have me on a medical roller coaster. My heart goes out to everyone with this misunderstood diagnosis. A lot of these doctors have accused me of only wanting pain pills, funny thing is to this day other then over the counter tylenol, I have never even taken pain pills. Though I am sure my joints would appreciate it. I am not sure I have totally accepted WG, keep hoping i will wake up and its all a dream.

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[windchime]

Shawn, unfortunately that's all part of the process of this disease. It's sort of like a grieving process. You will feel denial. rage and hopefully acceptance as you work through this. Just remember we are here for you if you need us. Lean on us when you need to. We've all been there so we fully understand what you are going through.

You still have sore joints on 40 mg of pred?

[sbeach78]

Yes mainly my knees and ankles, could be from the swelling, not sure, its a managable pain more of a discomfort. I am not one to give in to pain.

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[LisaT]

Yes between the rheumatism docs the renal Guy, and the eye doctors they have me on a medical roller coaster. My heart goes out to everyone with this misunderstood diagnosis. A lot of these doctors have accused me of only wanting pain pills, funny thing is to this day other then over the counter tylenol, I have never even taken pain pills. Though I am sure my joints would appreciate it. I am not sure I have totally accepted WG, keep hoping i will wake up and its all a dream.

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hi, Shawn, welcome to the forum and I'm sorry you went through such frightening illness before getting a diagnosis. I hope it's only uphill from here. I'm still getting to know everyone myself and the forum is my new lifeline. I hope we can all be of help to you too. Did you mean the docs are having you go from 80 mg right to 40? That sounds like a big jump to me, but I don't know if maybe at higher doses you can cut a larger percentage because it's still enough to not make you crash... Hopefully others can chime in and let you know, it seems that different doctors take very different approaches to how much to taper it for how long, and sometimes the advice of other forum members can help make it a less painful and overwhelming process... I hope you regain your strength quickly and continue to feel better.

[LisaT]

I forgot to say, I'm still learning to accept the diagnosis (which isn't even yet definitive, but that's a different discussion). It's all relative. Six months ago I was devastated that I might have Wegs. The other day, I cried with relief that something seen on scans in my chest is most likely Wegs. This was because the alternative or 'differential diagnosis' was more rare and with fewer treatment options. This forum gives me strength to deal with WG and I hope it will do the same for you. On the days you want to cry or be in denial, just let yourself. The sun will rise the next morning and things will look better again.

[sbeach78]

I came home on 80 mg they brought me down too 40 mg gradually but my rheumatism doc told me to stay at 40 mg for atleadt the next two weeks..

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[sbeach78]

Thank you Lisa for your kind words I hate there is so many people with this same diagnosis, on one hand its heart breaking. The other hand it helps not to feel alone, just wish so many people were not affected.

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[annekat]

I thought the same thing, Lisa, that Shawn went from 80mg to 40mg but then decided he had probably tapered. I think you are right that that would be a pretty big jump. It depends a lot on how long you've been on the pred, how big of a jump you can manage.... the longer, the slower you need to go. I'm glad to hear he did taper and it seems reasonable to leave him on 40mg. for awhile given the pain or discomfort in his knees and ankles. Everyone is different... for me, it only takes a small amount of pred to keep joint pain under control. This may be a different kind of swelling. Wegs can present in so many ways!

[sbeach78]

I think the swelling could be due to my kidneys, doc says they are only at 20%. I have a lot of swelling in my legs and ankles..probably what's causing the discomfort. They are supposed to add a water pill after my kidney biopsy on Tuesday.

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[Alysia]

welcome to the Forum Shawn :hug1:
the beginning it the most tough to endure :crying: :w00t: in time you will feel better....
it's a good idea not to hurry when reducing the pred.
if you have to be a weggie, at least you can be a part of the best forum on the globe.

[sbeach78]

Thank you for the welcome.

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[drz]

I think the swelling could be due to my kidneys, doc says they are only at 20%. I have a lot of swelling in my legs and ankles..probably what's causing the discomfort. They are supposed to add a water pill after my kidney biopsy on Tuesday.

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I remember in the first months of treatment there were several weeks I could not wear shoes or get socks on due to swelling of feet, ankles and legs. I really disliked sleeping with those inflatable blowup leggings that would inflate every few minutes and wake me up. It did get better though in a few weeks and feet returned to normal size and shape and kidney function improved to near normal again too.

Best wishes for better health soon.

[sbeach78]

Thanks for the encouragment, as supportive as all the members are here, I am glad that Mike sent me the link to get here. The info I have learned in the last two days has answered more questions then I have all of the last month.

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[Alysia]

Thanks for the encouragment, as supportive as all the members are here, I am glad that Mike sent me the link to get here. The info I have learned in the last two days has answered more questions then I have all of the last month.

you are lucky to find this place early enough. I was an ignorant lonely weggie for 4.5 years untill I came here and learned so mcuh. I also learned here about severe mistakes that were in my treatment because the docs in Israel knows almost noting about WG. and I am not lonely anymore.

[sbeach78]

Yes its been a blessing for sure.

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[pberggren1]

Hi Shawn. I have not read all your posts yet and don't know your whole story. I will send you an e-mail later asking you some questions and filling you in on what Wegs is all about and what to do from here.

[sbeach78]

That would be awesome ..any info that's helpful is more then welcome

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[BarbW]

Your story is frightening, that for certain. I am glad you are on the road to recovery.

[sbeach78]

I don't think it so bad my main concern is the stress it adds to the family. I went from breadwinner to dependent, I think I struggle with that more then anything.

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[Jayne 14]

Welcome Shawnee
I'm brand new too
Diagnosed April 2014
You've come to the right place , I hope you feel better soon
I'm sure stress doesn't help this illness but kinda hard not to stress when you're adjusting to new life / money issues !!



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[sbeach78]

Thank you

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[sbeach78]

Jayne 14 I hope your doing better now.

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[Mike_Milliorn]

Ask Phil about the kidney biopsy. He has info for you. Still think you need a specialist to quarterback all these various body part specialists. Too many cooks in your kitchen. Too dangerous for you.


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[Jayne 14]

Thanks
I'm really tired today, think its time to acknowledge I may have to slow myself down a bit . I'm ordinarily full steam 100 miles an hr , working part time in M & S , mum , wife etc and am nailed this weekend
Glad I know what / why my nose is destroyed / no smell / huge crazy things coming from it / bad gums / raynaulds etc etc but would like my old self back
I'm not 1 to enjoy fuss / are u ok so find it odd to have to ask
I will be fine I know I will : it's just a lot to process


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[KimH]

Hi Shawn, welcome to the forum. This disease takes us on quite a journey. The support and understanding that you will find here is unsurpassed! I hope you start to feel better soon. It is hard to be patient when you get hit with so much. Someone is always here for whenever you need to talk.

[windchime]

Thanks
I'm really tired today, think its time to acknowledge I may have to slow myself down a bit . I'm ordinarily full steam 100 miles an hr , working part time in M & S , mum , wife etc and am nailed this weekend
Glad I know what / why my nose is destroyed / no smell / huge crazy things coming from it / bad gums / raynaulds etc etc but would like my old self back
I'm not 1 to enjoy fuss / are u ok so find it odd to have to ask
I will be fine I know I will : it's just a lot to process


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One day at a time Jayne. Be gentle with yourself.

[sbeach78]

Hi Kim and thank you for the welcome...

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[godgirl]

Welcome, Shawn. I'm pretty new on the forum as well. Tons of information and a great group of people. I'm not quite diagnosed yet, but my docs are treating it as if its Wegs. Otherwise I flare with what they're calling "connective tissue disorder".
I also hear you about the breadwinner thing. I'm divorced and its only me and the dog. I have to be able to support myself and that scares me.
I hope you get to feeling better soon. :)

[sbeach78]

Well I hope it gets better for you. I know if it wasn't for my family I would starve along with my dogs...my wife brings home the Bacon now.

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[BookNut]

Well I hope it gets better for you. I know if it wasn't for my family I would starve along with my dogs...my wife brings home the Bacon now.

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Hi Shawn. You will see from my signature that I am only an honorary weggie. I was misdiagnosed...but have very similar problems. All these folks are so helpful, and fun....why would i think of leaving?!!

WhenI was in the hospital I had large amounts of prednisone. the hospital bill actually said 125 mg 5 times a day via IV. I am more inclined to believe the doctor's report which said 60mg 5 times per day via IV. My eyelids were like broken spring-loaded shades. i could NOT keep them closed. I was in the hospital for a week, and got a total of 6 hours sleep. Did it help my breathing? Only a little bit. But when they reduced the pred to a manageable 40 mg taper, I slept all the time.

Anyway, hopefully you will taper down. Also, don't worry about who brings home the bacon. My hubby had to go on disability with his severe asthma, and I was there to bring home the bacon. Now that I am going through a tough time, although we are both retired now, he has taken over most of the housework for the past month, and takes very vigilant care of me. Hopefully I will get over my shortness of breathe soon. I love to cook, and want to get back to it soon. Anyway....it is all part of the wedding vows. In sickness and in health. We are there for each other.

Welcome to this great group!!

[sbeach78]

Just an update at sparks Med. In Ft. Smith....kidney biopsy went well..Phil you were right nothing to them.

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[sbeach78]

They are supposed to let me go home, but no doctors have even made rounds yet.hopefully they don't change their mind

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[BookNut]

They are supposed to let me go home, but no doctors have even made rounds yet.hopefully they don't change their mind

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Hope you get "sprung" today!!

[sbeach78]

I made it out of hospital. Should get my results of the biopsy on Wednesday


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[pberggren1]

SWEET:thumbup: Keep us posted. I sent a message out to the VF to find out if they have any docs listed for OKC or Tulsa. I figure just stick with these 2 cities seeing as they are the closest to you and also in your state.

[BookNut]

Yay You! Onward and upward!!

[Lilly]

Nice to meet you Shawn. Your backstory is so similar to mine, my Mom and I were laughing at how you explained it with a lot of humor! Your meds, Cytoxan and 80mg of Pred. is EXACTLY what I was put on. I had a lung Bx. and a nose Bx. My kidneys were and never have been really involved except a few red blood cells in my urine sometimes when I go for checkups. I Love your sense of humor and hate you got this disease, but hey, I was Diagnosed in 1990, and Im still kickin! So we are all here for you! As you read through the site, and old posts, you will realize that no question is too stupid or dumb or embarrassing to ask. And venting is Totally expected at any time! I hope you stay with us! And will be thinking about you! Best of luck and I am sure you are prob feeling better now. That 80mb pred. made me feel like I could fly! It gets old, and your glad when they start weaning you off, but after feeling so terrible for so long, its a great relief.......Have a good day! :-)

[sbeach78]

Thanks for saying hi Lilly. It definitely gets hard to keep up beat. My family is my biggest strength, this site has helped with my understanding of all of our unique situations. I am very thankful the knowledge I have gained here.

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