Hello from Glenda in Australia

[Glenda]

Hello there, I have just joined this forum to see what I can find out about WG. I was diagnosed in February of this year, and am still having a lot of trouble. My kidney function ranges between 20 to 40%, I have pain in my joints, have trouble with my sinuses, have headaches constantly (sometimes a dull ache but generally quite bad), constantly tired, feel nauseated and feel terrible most of the time. I see my Drs (nephrologist and GP) both monthly or more ofter if they call me in (due to decreasing blood results). I have weekly blood tests. Am on 25mg prednisone, have had 3 months of cyclophosphamide IV, and am on so many BP medications and still have high blood pressure. I always feel I am complaining when the Drs ask how am I. I have had to resign from work as I am so tired, weak and lethargic. I am depressed and my condition is still not under control.
I am pleased I have found this site as it is nice to think all my symptoms are common to people with WG, and I am not alone.
It has given me hope.

[Rose]

Hi Glenda

Sorry you had to find us but glad you did. Here you will find a welcome and a real understanding of what you have gone/ going through. We have all travelled that road, most of us have thankfully improved and willing to share our experiences as to what has helped us in our fight with WG so please never hesitate to ask questions.

Sorry you have not responded to treatment How long ago did you have the cyclophosphamide IV? How long have you been on 25mg prednisone? When I was diagnosed with kidney (38%) lung, hearing, joint and GI involvement, I was told that I had to have 6 months of IV Cylophosphamide. I responded so well that after the 3rd or 4th IV treatment I went into remission. The doctors were very pleased but refused to stop the treatment protocol of 6 infusions for reason "to hit it hard". I was also on high doses of prednisone during this time.....I received Solumedrol 1000mgs IV x3 before the cyclophospamide, then 80mgs for about 2 weeks then reducing about 10 mgs a month as my bloods improved.

This was in 2008. Since January 2009 I have been on Cellcept 1.5g. which has maintained remission though I have had a few minor flares. I am not the person I was before I got ill. Very few of us, if any, will return to our pre WG healthy selves but if the treatment is successful, many of us accept our new norm with its limitations and get on with life as best we can and just grateful that we are still around.

The fact that you haven't responded raises a few questions with me

1) Were you long enough on IV Cyclophosphamide?
2) Did you have IV Solumedrol? Have you been on higher doses of prednisone?
3) If your doctors feel you have received enough cyclophosphamide and you have not responded have they discussed other treatment options with you?
4) How much experience has your doctor had treating WG?

Finding an experienced doctor is difficult as there are so few of us around but a Rheumatologist has the most experience in autoimmune conditions. You will probably need a few specialist on your team including a nephrologist but most people have a Rhumy in charge managing the monitoring and arranging consults with other specialists when required. I am sure some of the Australian members will chip in here with some suggestions.

Your post could be lost in this thread. I suggest you cut and paste it on to "new members introductions"

Wishing you all the best. Hope you will get some relief from those terrible symptoms soon.

Rose



Last edited by Rose (http://www.wegeners-granulomatosis.com/forum/posthistory.php?p=91733); Today at 12:11 PM.




mishb (http://www.wegeners-granulomatosis.com/forum/members/mishb.html) likes this.

[Rose]

Glenda (http://www.wegeners-granulomatosis.com/forum/members/glenda.html)
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Hi there Rose, thankyou for replying. I have posted this onto the New Members site as you suggested. In response to your questions: I commenced IV Cyclophosphamide in May and had it for 3 months. I was constat\ntly vomiting during this time. No I didn't have IV Solumedrol (I don't know what this is). I was first commenced on 60mg of Prednisone and stayed on this for 4 months before gradually decreasing down to 15mg, but as the kidney function deteriorated again was put back up to 25mg and there I have stayed. The Dr wants to keep doing Kidney biopsies, but as I have a large internal bleed from the last one, I am reluctant to have another one. I don't know how much experience my Physician has with WG, but when I first got sick I have 5 Physicians coming to see me each day in hospital (I was an unusual case apparently). I don't live in a city. My Dr has talked about more Cyclophosphamide, but stated that this has the risk of causing cancer. He has also talked about methotrexate, but has decided to just watch and wait. In the meantime I have weekly blood tests. I was iron deficient after the bleed, so have had and IV Iron infusion only 3 weeks ago. My Hb is now up to 100 (still anaemic). I have a lot of pain in the joints, sinuses and headaches, but am not allowed to take anything other than paracetamol as other tablets are excreted by the kidneys. I just feel so down, tired and depressed all the time, I am sick of myself. I had to give up work which I loved, and was not prepared to leave, but my brain has been affected and it could be dangerous to others if I kept working. It is so wonderful to read stories from others that have gone through this and understand. You are all a ray of sunshine for me.

[Rose]

I am sort of shocked that your docotr has suggested to do another kidney biopsy. My understanding is that it is only done for diagnostic purposes. From them on monitoring the kidney function with blood and urine tests lets the doctor know if the kidneys are responding to treatment. But let others see this and see what they have to say.

Cyclophosphamide can cause cancer, especially bladder cancer and given too much of the stuff will more or less guarantee it. There are guidelines as to how much one can have in their lifetime. Dont know the numbers but most of us are given doses well within this limit. Not to say that means we will never get cancer but it reduces our chances. IV Cyclophosphamide for 3 months to me is well within the limits. Cyclophosphamide saved my life. Without it I almost certainly would not be here. I was also very nauseous on it and was given specific nausea pills (given to patients on chemotherapy) which helped.

I V Solumedrol is cortisone at very high doses and 1000mgsx 3 over 3 days is standard protocol for patients with severe organ involvement and is usually given as you commence treatment to knock the immune system into submission.

My understanding also is that methotrexate should not be used in patients kidney involvement.

Did your kidney function improve with the Cyclophosphamide? Was it stopped because you could not tolerate it or because they thought 3 months was sufficient?

You are obviously not responding to treatment. Whether this is because you did not have the Cyclophosphamide long enough or because it hasn't worked for you and wont work for you is the question. There are however other treatment options available. Have any been mentioned to you apart from methotrexate? Rituximab is one which works like cyclophosphamide to get you into remission (apparently fewer side effects) and imuran and cellcept are others used to maintain that remission. Do some research on these drugs so that when you next see your doctor you will have lots of questions and demand answers. It seems to me that your doctors are not familiar with WG but not many are. How far are you from a major city? If travel is a problem maybe you could ask your doctor to consult with the Vasculitis Centre in US. The doctors there will consult with your doctors and give guidance in the treatment and monitoring of your disease at no cost.

Rose

[Pete]

Hello Glenda,

Your case is exemplary about why you need a Vasculitis specialist overseeing your treatment. In Australia, the wegs mecca is Addenbrooke's. I hope you are close enough to get treated there. Otherwise, you should ask your doc to consult with one of the specialists there. You can also find a list of Vasculitis specialists at the Vasculitis Foundation's web site.

Hope you get the treatment you need soon.

[Rose]

Hello Glenda,

In Australia, the wegs mecca is Addenbrooke's. I hope you are close enough to get treated there. Otherwise, you should ask your doc to consult with one of the specialists there. You can also find a list of Vasculitis specialists at the Vasculitis Foundation's web site.
.

Hi Pete

I know there is an Addenbrooks hospital in England...is there one in Australia? I hope some Australians can guide Glenda as to where she can get the best help in Australia asap. Where exactly in Australia do you live Glenda?

Rose

[Pete]

Oops!! My bad. :( I hope our Aussie friends chime in soon.

[mishb]

Hi Glenda and welcome

Where in Australia are you from?
You will find many of us on here and we also have a facebook group for Australians and New Zealanders, if you are interested. It might actually help a bit with the depression, because, being Aussie, be do like to have a laugh.


Rose, we don't have an Addenbrooks in Australia or a Cleveland Centre or Mayo etc, but we do have some very good hospitals and some excellent specialists. You just have to know which ones and be able to get there for help.

Glenda, if you need any help drop me a message and I can try and point you in the right direction.

[Glenda]

Hi there again everyone, I was wondering if someone could answer my questions please. Does WG cause anaemia and low Feritin levels? I have been anaemic since my last kidney biopsy in May when I had a large internal bleed. Then my Feritin levels dropped to 4. I have had an iron infusion, and the levels have improved, but as my Hb comes up the iron levels are slowly decreasing. My Dr is talking about an endoscopy to see if I am bleeding from the bowel, but have had faecal studies x 3 all of which are negative for blood. The second question is does anyone know of a Dr that treats WG on the eastern side of Australia, preferable in New South Wales? I feel this WG may be a little out of my Drs scope of practice, although he is trying really hard to help me. He just seems to worry about the renal function, and dismisses all the other symptoms I have as if they are nothing. I have even had bouts of heart arrhythmias, missing every 3 to 5 beats, but he just says it is quite normal. Thankyou everyone

[mishb]

Hi Glenda,

Is Sydney close enough for you or are you up further?

[mishb]

Glenda,

Dr Jim Mackie works out of the Renal Clinic at Prince of Wales Hospital in Randwick.

He is probably taking new patient with a referral letter...............and has a number of patients with WG.


If this is too far away from where you live let me know and I will try and get some more names for you.

Have a great day

[Glenda]

Hi Michelle,
thanks for the reply. I could get to Sydney, but it is about a 6 hour drive from where I live. Do you know of any in Newcastle? That is only about a 4 hour drive. Thankyou, have a lovely day yourself.

[mishb]

Glenda, would Coffs be closer for you ?

An excellent/recommended doctor is a Rheumatologist by the name of Dr Hanish Bagga. (02 66529822)
He is a Private rheumy.

[Glenda]

Hi there Michelle,
Yes Coffs is closer, only about 3 1/2 hours drive. I have noted his name and phone number. Is there any Specialists around Armidale/Tamworth, as this would be closer, but Coffs is ok. I can't thank you enough.
This site has 'made my life' in that it is a life line for me. Just to know that there are others out there with the same condition, that know what I am going through, and that have continued living a fulfilling life, is really wonderful. I had almost given up hope that anything could make me feel better. I now have hope.

[mishb]

Hi will check with our facebook group and let you know.

I also have a name for Newcastle if you want that, but why travel so far if you don't have too

[mishb]

Apparently it is worth the travel to Coffs :thumbsup:

There is no Rheumy in Armidale but the doctors at the Markham Street Clinic know all about WG and there is a good Rheumy in Tamworth.

I have some other details about the City hospitals and funding for travel to get you there but I wont bore people on here with that.
If you like I can send you a PM with these details, but being a Country girl you may already be aware of this.

Good luck and I hope you can find a doctor or specialist that can help

[Glenda]

Hi there, thanks for the reply. Could I have the name of the Dr in Newcastle and in Tamworth please. I don't know about the city hospitals or travel assistance as I have never had to use it before. Other than controlled asthma, I was healthy. It is so funny, it was only mid 2013 I was thinking how lucky I was, as a lot of people I knew were coming down with conditions. How things can turn around, and so quickly. I can't tell you how much I appreciate your help. Thanks

[mishb]

Hi Glenda,
The rheumy in Tamworth is Dr Jim Croker - I don't know a number
Dr Major at the John Hopkins Hospital in Newcastle

I hope these help and you can get some answers.

Best wishes for a pain free weekend

[mishb]

Glenda, below is the link to our Australia and New Zealand facebook group. We would love for you to join us, if you are on fb

All of the people in the Group are the ones that have supplied all of the above details for you - I am just the messenger.

https://www.facebook.com/groups/516643745050360/

[Glenda]

Hello there again, thanks for all the information. Do you know if the Drs in Tamworth or Armidale have patients with WG - are they familiar with the condition, or would it be better to go to Newcastle or Sydney?

[Jaha]

Welcome to the forum Glenda. I'm wishing you all the best for finding good care. There are so many on here that can help you with various questions.

[annekat]

Welcome, Glenda. Everyone above has given you great advice. I'm glad you found us, so you won't be so alone with this disease. I was so pleasantly surprised to find this forum at the first suggestion of WG, before I was officially diagnosed. That was 3.5 years ago and this forum has been a lifesaver for me both physically and mentally. I don't think there's any other way I'd have much of an understanding of this condition that I have and how it is treated. And I've made lots of new friends on top of that. I only wish the friendships could be under different circumstances. I hope you will will stick with us, and that you will get better soon.

[miracleshappen08]

Glenda, there is hope, but it is finding the right doctors!!! I really hope and pray you can find some.
To answer your question about iron, I was anemic before but it got a lot worse after I was diagnosed. Right now my iron is at 4, I'm go in this Friday for my first iron infusion. The meds also play a big role in blood function. Last year, I had very major blood issue. I was losing blood like over night. I had to have 3 units of blood.
Today is much better thanks to the meds and doctors! It's still not easy!! But I'm still here and I'm fighting. Once you find the right doctors, you will feel better.

[kaysee]

Glenda, Welcome to the forum. You have come to the right place to help you get answers. My WG caused anemia and made me very tired. It messes with a lot of things blood related. Currently I am low on potassium and I was low on phosphorus as well. I had 25% kidney function when first diagnosed, but after rituximab IV my kidneys came back to 50%. They probably wont get much better with the damage that has already been done, but I am grateful for 50%. I wish you the best. It sounds like the wggies in Australia are looking out for you. Good luck with finding the right Dr.

Karen

[Jayne 14]

Glenda
Welcome to our gang
Hope your feeling better soon 👍


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[mrtmeo]

Hi Glenda and welcome!

My mom has an internal bleed and they did an EGD and Colonoscopy where they found a stomach ulcer and some surface blood vessels leaking blood in the colon. They fixed the blood vessels, but she still drops in her hemoglobin and needs procrit (a hormone that sends a message to the bone marrow to create more blood) because of the immune suppression and kidney function. Having a low ferritin is typical of iron deficiency anemia and could be an internal bleed.
There are many places in the body where internal bleeding can be happening with vasculitis, so check with your drs regarding tests that can find the bleeders.