Hello from Perth Australia

[maldugs]

Hi, my wife was diagnosed with Wegeners on the 7th of this month, she has been in hospital for the last 3 weeks, her creatine levels on admission were 710, and there were grave concerns for her kidneys, she is being treated with cyclophosphamine, and prednisolone, also she has a tube in her neck and has had 6 plasmarephisis treatments, which have brought her creatine down to 310. Today the doctor said that she needed blood as her heamaglobin had dropped 3 points, I am a bit concerned, any help would be greatly appreciated.

Regards Mal.

[renidrag]

Sorry you had to find us, others will be along with more detailed assistance however I can say the treatment your wife is getting seems to follow most protocol of our members, without knowing dosages. How long was she displaying symptoms before diagnosis? Also there are many wise Aussie's here to help you.
Dale

[windchime]

Hi Mal, sorry you had to find us this way, but the support here is phenomenal. As Dale said there are many Aussie's on here for local support. Your wife seems to be responding to treatment and that is a good sign. There are others that were in the hospital and near death that made a good recovery so that gives me hope that your wife will too. If you have any questions please feel free to ask. If you would like to share a little more of where/how all this started we could provide you with more specific answers. Here are some hugs for you both. :hug2:

[mishb]

Hi Mal and welcome.

What hospital is your wife in?

We have many Perth and other WA members in our Aussie facebook group, if you are interested, but I/we can also answer your questions here too.
Her creatinine levels have come down which is a good sign that she is responding to treatment.

One thing - please don't read google about WG/GPA, it can seem really scary. Google tends to over exaggerate things.
Write down any questions that you have or any fears and speak to her doctors or nurses about it, or we can try and help you out.
There is probably nothing your wife is going through that someone on here hasn't already had to deal with.......and is surviving to tell the tale.

Your wife is in good hands and she is in the exact place that she needs to be, at the moment :hug1:

[drz]

Hi, my wife was diagnosed with Wegeners on the 7th of this month, she has been in hospital for the last 3 weeks, her creatine levels on admission were 710, and there were grave concerns for her kidneys, she is being treated with cyclophosphamine, and prednisolone, also she has a tube in her neck and has had 6 plasmarephisis treatments, which have brought her creatine down to 310. Today the doctor said that she needed blood as her heamaglobin had dropped 3 points, I am frightened that she won't survive this, any help would be greatly appreciated.

Regards Mal.

I had numerous blood transfusions and umpteen plasma exchanges and was intubated for a couple weeks and spent several months in hospital and nursing home for rehab but survived the initial treatment and recovered a great deal over the next few years. It can be rough period for everyone and a long recovery process but remember 90 % of people do survive the initial treatment of GPA if they are treated correctly even when treatment has been delayed a long time due to lack of correct diagnosis. I think it might be tougher on family watching than the patient so best wishes for good results for you all.

[Geoff]

Hi Mal,
Sorry to hear about your wife but if its any consolation her illness markers and treament sound identical to mine 6 years ago. I was able to return to work after 4 months but as you will no doubt realise we all walk a different path with this illness.
I agree looking on the internet is not the best course of action and I would jot down your questions for when you meet your wife's consultant.
This Forum was a god send when I was first DX and is full of very helpfull members who will help in any way.
Wishing you and your wife all the very best on your journey, there will be ups and downs so be prepared.

[Michael Bell]

We are all so different in the way this disease attacks us, I spent 5.5 months in hospital, suffered kidney, liver, lung, digestive system and heart failier. I was in an induced coma for 10 weeks and was given 7 changes of blood plasma. Anyway I just wanted to let you know that I am back at work full time and leading an active( although slightly less active) life. There is light at the end of the tunne,l and with the treatments we get we can enjoy a full and happy life. I wish you both well and will hold you in my prayers. Please be brave for both yourself and your wife.
Mike

[maldugs]

Thanks to all of you, your replies have made me feel much,much better, will let you know how my wife responds to the treatment, the Doctor said she may be able to come home today or tomorrow, after the last plasma exchange today.
Mal.

[LisaT]

Hi Mal, it must be pretty overwhelming right now. Finding this forum and sharing what you learn with your wife will be a huge help to her. Welcome to you and I hope she starts improving quickly. I met a number of people at an in-person support group for the illness who were in very rough shape and hospitalized when first diagnosed (two of them in comas for a time like Michael), who are all doing better now. It seems that people have flares to varying degrees and respond differently to different treatments, but they are out of the woods and have been for some time (the length of time also varies). So, there is lots of hope and reason to believe she will be okay. Keep us posted and ask anything...I'm still learning, but many here are a wealth of information. I'll be thinking of you and your wife...

[annekat]

Welcome, Mal.... everyone has said the important stuff, especially those who've been in similar circumstances, or worse, and come through with flying colors. I'm glad you found us. Perhaps your wife will be able to join in the discussions when she gets home and feels better. And we have a Weggie Forum members map link in blue at top of page, where you can go and add your name, or hers, to the map and see the distribution of members all over the world.

[Beverly]

:smile1:Welcome Mal...don't know what I can add to what everyone before me has stated. I believe you will be a good caretaker, and it was hard for me:crying: to see my husband have to go thru this with me. You may already know that your wife needs an advocate when in hospital or at docs visits.
As others have expressed, you have come to a good support forum:thumbsup:
The short time that I have been here has truly been a wealth of valuable information and great blessing. This is my prayer for you and your wife.
Bev

[Alysia]

welcome to our family, Mal :hug1:
I understand what you are going through and how sad and shoking and scary it is for you :crying:
I feel that it is more tough to be the caretaker of a weggie then to be the weggie.
but you are in good hands, ours - here - and at the hospital.
if Michelle confirms it, then - no doubt that it is a good one :)
I hope that your wife will continue to feel better more and more, and will be soon at home, by your side.
take care of yourself as well.

[maldugs]

Thankyou for your thoughts, and advice, I have my wife home after 3 weeks in hospital, we are going back today to see her specialist, she has a puffy face due to prednisolone, but she is taking around 20 other tablets and capsules also, she can't walk very far, and is quite tired, will be interesting to see what the doctor says.

Mal.

[annekat]

I'm glad to hear she is home. The fatigue and not being able to walk far is very normal at this point. With continued treatment, she should feel quite a bit better in a few weeks. Keep us posted!

[chris.wg]

Hi Mal I am sorry to hear about your wife. Every new member to this forum dose 2 things for me emotionally. First saddens me and makes me think not another..... But it also makes me glad that this forum is here it is a excellent source of knowledge and support. We have all had our personal issues with WG but if you browse you will learn we also celebrate our triumphs.

[RonB]

Mal

I too am from Perth with exactly the same problems, it's been 9 months for me and I came off Kidney dialysis after 5 months.
Tell her to hang in there, you think things will never improve, but eventually they do.
I am under the care of Doctor George Chin at Fremantle and he has been great.
Long term it probably depends on how early they diagnosed it
Good luck
Ron

[mishb]

Hi Ron,

Gosh us Aussies are starting to catch up with the rest of the weggies on here :razz:

Fremantle hospital is an excellent hospital and know all about WG/GPA, unlike my local hospital who even asked me how to spell it for their records :sad:

We would love you guys to join our facebook Aussie Group, if you are on.

[mishb]

Mal,

I'm glad you wife has now come home.
Things will get better, I promise :hug2:

[BookNut]

So glad your wife is home. I hope that she will also join the group. Great bunch of people. I was briefly diagnosed with Wegeners but it was ruled out....but not before I got hooked on this forum. Lots of good friends with great advice on dealing with the respiratory problems that I have. It would be great for her to join, and find out that she can ask ANY question here, and there will be someone there to answer her questions from their real life experiences. So helpful!! Good luck as both you AND your wife recover from the hospital stay! I know what it is like. You just can't wait to get home where you can finally get some rest! Hospitals are anything but a place to get much needed rest! :rolleyes1:

[maldugs]

I think my wife is feeling the effects of all the meds she has to take every day, the specialist siad the meds will be slowed down eventually, I will list what she is taking for your comments :_
Daily. magnesuim, Asprin, Atorvastatin, Thyroxine,Pantoprazole, Amlopidine, Calcitrol, Calcium Carbonate, Cylophosphamide, Frusemide, Predisolone, Sodium Bicarbonate, Sulfamethoxazole, Valganciclovir. She throws up most mornings, NO Wonder!!! but then she takes all the medication, and can eat ok.
All we can do is keep going I guess. :)

Mal.

[annekat]

That is a lot of drugs! I couldn't begin to tell you which ones are making her throw up. I was only in the hospital overnight and I guess had a less complicated disease activity. My actual dx came a few days later, and I was put on cyclophosphamide, prednisone, and Bactrim (sulfamethoxazole), and an antacid, but not all that other stuff. The CTX (cyclophosphamide) did make me feel somewhat sick and dizzy, not to where I actually threw up, but I was told I could split the dose and take half in the morning and half later in the day, which probably helped. I did get used to it after awhile. Sounds like the prednisone is keeping her appetite up OK, which is good. Make sure she drinks plenty of water, especially to reduce the long-term toxicity of the CTX, and sleeps as much as she wants. I remember that time period well, and am sure she will make it through it just like I did.

[chris.wg]

I was on pretty much the same regiment as annekat when I started treatment I handled the ctx pretty well for the high dosage I had it was the pred that maid me feel like garbage... well not so much when I was on it but if I was a late taking a pill I could feel it. Just be there for her she will be back to relative normal aka our new normal shortly.

[windchime]

I was on pretty much the same regimen. It is probably the CTX that is making her sick. My doc suggested splitting the dose and taking them about 2 hours apart. That helped me. She didn't want me taking them any later than 10-11 AM because that drug shouldn't sit in your bladder overnight as it's very toxic. This is a very trying time for her and she is so lucky to have you by her side. Thank you for being there for her. :hug2:

[lag713]

Welcome Mal. She's lucky to have such a caring and supportive husband. I hope that she feels better soon as the medications do their work. I know this must be tough on you too. Don't forget to take care of yourself as well. :hug1:

[maldugs]

Update on my wife, she has been out of hospital now for three weeks, the doctor has reduced the Cyclophosphamine to 50mg a day and prednisolone to 15mg a day, she is still very tired and can not do much, but her heamaglobin is down, so she is having weekly injections of eprex to get the bone marrow to produce more red cells. The Weg has badly effected her kidneys, and we are hoping and praying that they will get more function back, or she may be facing dialyisis. The hardest part is that she feels her life is over, and I am scared she gets too depressed. I am 74 but fortunatley am active and can handle things,we have a large one and a half acre property, if things don't improve guess we may have to sell, looks like our life is on hold at the moment.

Regards Mal.

[annekat]

Mal, I'm glad your wife is out of hospital. My only concern is that they have lowered her CTX so much, when she hasn't been in treatment that long and her kidneys are still not back to normal. I guess the blood cell count could be the reason, but it just sounds to me like a sub-therapeutic dose even for a small person. Maybe she should be on RTX if the CTX is affecting her blood cells that much. My understanding is limited so I hope others will chime in.

I remember the feeling that my life was over, and I have managed to pull out of that, and I sincerely hope that she does, too. Best wishes and prayers go out to her, and to you. An antidepressant such as Zoloft could help (could be a different brand name down under but I think the drug is sertraline). I was on that for awhile and I think it helped.

[windchime]

I agree with Anne that the dose of CTX seems very low since she is not yet in remission and her kidneys are still not up to par. Please ask her doc why they dropped the dose. Taking the drug is bad enough, but it's important that the dose be correct. It's important with this disease that a really ill person have an advocate for their health needs. Is her doc familiar with wegs? I'm sorry I can't remember if you answered that already. It sounds as if she is a good candidate for RTX. Ask her primary care about antidepressants as Anne mentioned. They will help her through this difficult period.

[maldugs]

Hi again, Anna is being looked after by a whole team including lung specialists, it is headed up by a top kidney nephrologist , unfortunatley it looks like she has had wegs for quite a while, when she had a mild stroke on Jan 3 this year, she was seen by a stroke specialist who ordered all the tests CT scans etc, the scans showed a mass in her left sinus, and also scarring? in her lungs, so she was sent to a lung specialist, and a ENT surgeon, the lung specialist said further investigation was needed to find out what the scarring was, and the ENT said he could take the mass in her sinus out, but recommended we leave it for 6 months as he said it was not dangerous, SO..it was not until Anna became sick and nauseous for three weeks in June, that he GP had her admitted to hospital, where they found that she has Acute renal failiure.
She was then transferred to Royal Perth hospital, where after more tests, and a kidney biopsy, (headed up by the Specialist who is now treating her) that he said that she had Wegeners, So unfortunatley for her she had the vasculitis for all that time, and all the other doctors were wrong.

The specialist said he reduced the CTX and Pred. to give the Eprex a chance to get the bone marrow working and her anemia to lessen, we are seeing him again in 2 weeks so we will see what happens then, I have faith in him as he swiftly diagnosed the condition, if I have made a few spelling mistakes it beacause I am tired.

Regards Mal.

[windchime]

Thanks for the update Mal and please take care of yourself. It is hard being a caregiver, both mentally and physically. Hugs to both of you.

[annekat]

Thanks for the explanation. Maybe once they get her bone marrow working again, they will increase the meds again to try to suppress the Wegs and minimize further damage to the organs. It sounds like she has a good team of specialists. I think there are one or two others on the forum from Perth whom maybe you could compare notes with on doctors and treatments. It's sometimes good to hook up with other Weggies in person, to feel less alone with all of this. You can check out our worldwide forum map via the Weggie Forum members map link highlighted in blue at the top right of each page, where you can add your name to the map and see who else has added theirs. Yes, you must be tired. I hope you have some friends and relatives who can help you out a bit so you can go a bit easy on yourselves.

[maldugs]

Hi everyone, an update on my wife Anna, the eprex is working and her heamaglobin is up to 105, her creatinie is now 210, down from 700+ on diagnosis, so she has regained some kidney function, her energy level is quite good and she is driving and getting about, but she gets tired easily, had a setback last week as she got a bad cold and temp of 38.3, so we went to the ER and they checked her out, and put her on antibiotics, we are seeing the specialist tomorrow, 2 weeks ago he took her off the cyclophosphamide and put her on azathioprine as her white blood cell count was down, he also said hand on his heart, that he never thought she would get to this level, and he was sure she was headed directly for dialysis, when he first saw her, but she may at some time in the future have to have dialysis, so, that's where we are now.

Regards Mal.

[RonB]

Mal
I too am from Perth, with exactly the same problems, she looks to be on the right track quite early, Regards Ron 0417186212 if you wanted to discuss anthing

[mishb]

Hi Ron and Mal,

We have many members from WA in our Aussie/New Zealand facebook group.

We would love it if you could join us or your wife Mal, if she is up to it.

The link to the group is https://www.facebook.com/groups/5166...3727703008629/ (https://www.facebook.com/groups/516643745050360/703727703008629/)

[maldugs]

Sorry to take so long for update, my wife is nearly back to the same as she was before she went into hospital, her specialist says that they have stopped the vasculitis, her heamaglobin is back to normal, and she is driving her car again, doing the garden, going to her sewing club, and seems ok. what I can't understand, is with her greatly reduced kidney function, down to 20%, that she can live normally. We are a bit reluctant to go very far away from our home and the Hospital, for fear something might happen. Her Doctor has reduced the Pred to 1 tablet daily, and she is off cyclophosphamide, but on Azathioprine 50 mg, Frusemide, Sulfamethoxazole, Valganciclovir, Sodium Bicarbonate, Calcium Carbonate, and her BP medicine, it all seems to be working. Guess all we can do is keep going.

Regards from Mal.

[mishb]

This is an excellent report Mal :thumbsup:

Your wife has come a long way to get to this stage. Don't hold back on the normal living, although she may tire a lot easier.
It gets very easy to lock ourselves away for fear of something happening, but maybe it wont.

I know a guy who basically has no kidney function and did dialysis four times a week (he has a new kidney now).
He went, and still goes, everywhere and does everything.
I work and then I rest.......I don't have much time in between for play :unsure:

I'm not really sure on the reduced kidney function side of things but I am happy that her specialist has said the vasculitis has been stopped :hug3:

[Debbie C]

That is great news ,Mal.But keep in mind that vasculitis is an incurable disease. She may be in medical remission for now but she could always have a flare so be mindful of any symtoms.And I do hope she is getting monthly blood and urine tests done.
And don't be afraid to venture off,you can't stop enjoying your life in fear something might happen,it sounds like she is doing great :thumbsup: