Hello Everybody

[Widthofacircle]

Hello Everybody
I am glad to have found this group and hope I will add and gain some benefit from it.
I am from Dublin, Ireland and was diagnosed in April 2009.
Won,t go through all of the history but am currently on Cellcept which the Rheumatologist calls a maintenance drug.Don,t know how long I will be on this but am currently feeling well.
Any other Irish members here?
Widthofacircle

[Jack]

Hi and welcome to the forum. :biggrin1:

Glad that everything is going well for you at the moment, but we would still love to hear your story and all of the medication you use. This sort of information is invaluable to patients trying to position themselves under the new circumstances they find themselves in. Please feel free to post at any time with your experiences and advice or if things are looking bleak, just have a good moan about the situation. You will find plenty on here who can fully appreciate how you feel.

I'm sure you will soon be receiving advice from members regarding maintenance drug regimes. :wink1:

[Widthofacircle]

Hi Jack and thanks for the welcome.
My story with WG began in March 2009 when I initially had a cold I could not get rid of.This was accompanied by a general feeling of being unwell and tired. I thoiught I needed a break from work to recharge the batteries so I took some time off however during this time off my ankles and knees became badly swollen and I had soreness in the shoulder joints.
I went to my GP who detected blood in the urine and he referred me onto the local hospital casualty dept.
Eventually I was admitted and after two weeks of tests, blood ,urine etc.I was moved to another hospital which did a kidney biopsy which confirmed that I had WG.
Steroids (Deltacortril) and some other drugs unknown to me brought down the joint swelling however the doctors informed me that I had some kidney damage and some lesions on the lungs.
I spent a year on intravenous cyclophosphamide and 60 mg Deltacortril. I was also taking Septrin and Fosamac.
During this time I experienced other effects from WG such as breathing difficulty, eye problems, hearing loss and nose bleeds.
Once I kept the rheumatologist informed of all of these issues they seemed to be able to deal with them through adjustments in the medication.
After the first year they put me on oral cyclophosphamide instead of intravenous and started to taper off the dosage of Deltacortril.
In May of last year CT scans and other tests showed a good improvement in my lungs and kidneys. I stayed on the oral cyclophosphamide for 6 months following which they put me on Cellcept.
I am now on 1500mg Cellcept twice daily and 7.5mg Deltacortril. I also take Septrin and Fosamac.
I have been feeling well for the last couple of months but I would say I am still only at about 85% of what I remember "normal" to be.
I still experience some nose bleeds and temporary loss of hearing in one ear however I am in a much better place than I have been in during the first year.
I attend the rheumatology and respiratory people every couple of months where they monitor progress.
They will not confirm that I am in remission however.
I have developed cataracts due to high dosage of steroids however they will be taking care of this over the coming months.
I also experience anxiety in relation to everyday tasks and work which I put down to side effects from medication as I did not suffer from anxiety before.
I hope this information will be of some use to some members who have just been diagnosed or are somewhere along the road I have been on.
Widthofacircle

[leahrubyred]

hi, i am not Irish, but I love a Irish accent! Maintenance can be hard but this web site is very informative and the best thing anyone can do is communicate and educate themselves, you r in the right place, welcome.

[Widthofacircle]

Thanks Leahrubyred
You are right. Information is a huge help to people with this disease as it is quite rare and not too many of us about, particularly in Ireland with such a small population.
I got a lot of info over the web when diagnosed. I am sorry I did not find this site a lot earlier

[leahrubyred]

same here.

[Jack]

I think a lot of people will be frowning at the idea of Cyclophosphamide for 18 months and also wondering why you were being administered IV when oral is more effective. The recommendation for ctx is usually 6 month with a 12 month maximum. I'm wondering if they were perhaps too conservative with the dose especially considering your early diagnosis. However, that is all in the past now and it seems that things are on the right track. Remission is another thing entirely and is often discussed here. Basically, the term can mean almost anything you want it to and the way you are feeling and your own decision on the matter is probably as good as any other measure.

[pberggren1]

My great great Uncle Neddy is from Dublin. I believe Bradshaw is his last name.

[elephant]

Hi Widthofacircle, welcome. I am a quarter Irish if that helps. :) I do love a Irish accent and hung out with a guy from Dublin on New Year's eve at a friends house. Glad you found us and we love to help each other and vent!

[Widthofacircle]

I know some Bradshaws from Finglas in Dublin. Haven,t heard of a Neddy

[Widthofacircle]

Hi Elephant,
Glad to have found you guys. There is something about the Irish accent begorrah.

[Widthofacircle]

Hi Jack
I wasd 12 months on IV Cyclophosphamide.Following this I met with a Rheumatologist who had a contact with the Cleveland Clinic who recommended I go on oral cyclo. During the 12 months IV treatment I haD quite a lot of complications with breathing, eyes, ears and nose . This may have lead to them keeping me on IV for so long but I think lack of knowledge and experience may have been a factor. Thankfully this Rheumatologist I am seeing now , Dr Barry is seeking information from the right sources and things are reasonably good

[Widthofacircle]

There is something about an Irish accent begorrah, begob

[pberggren1]

Neddy passed away about 15 years ago. I think he was in his 90's.

[Sangye]

Nice to meet you, Widthofacircle. Like Jack said, I'm pretty horrified at how long you were on cytoxan continuously. Glad you're doing better now at least.

[Minneapolismark]

Although I am from Minnesota in the US, my Gran would spin in her grave if I didn't say "yes, I'm Irish."

[pberggren1]

I was talking to my mom tonight and she said we are related to the famous Golfer Harry Bradshaw.

[Minneapolismark]

I think my ancestors were criminals.

[bri]

Hello Widthofacircle,

I am 50% irish, I traced my great great great grandfather from Ireland, his name is Redmond, my grandmother's side is from Ireland as well. I went through similar experience to yours. Looks like they caught yours sooner than mine. I was on Cytoxin for a year as well and ended up with a kidney transplant, but all is well now, hasn't flared yet. Good luck to you!

[elephant]

Bri, so nice to hear you are doing well and the kidney transplant is good. What kind of medicine are you on for the kidney transplant? I had a kidney transplant in 1989.

[bri]

I am on Prograf, Myfortic, Prednisone (of course:predrage: ), Prandin, Fish oil, Bactrim, Multivitamin. I had my transplant in 2009, my prograf level is a little lower than the normal patient. My tac level is 2-3, where your normal is probably a bit higher. After my transplant they tried getting me to the "normal" range and I kept feeling worse. My nephrologist ended up doing a biopsy and found I had toxicity to prograf at those levels, so they backed me off a bit. My doc is good about that since I react so strange sometimes to the meds. I see you are a nurse, I work in healthcare as well. It's good and not good when you know what you are in for when they schedule tests. I used to do interventional radiology work.

[andrew]

Trying to fix broken thread :) Just ignore this one.

[Widthofacircle]

Can,t say I know a lot about Harry Bradshaw or where he is actually from. I think Bradshaw is actually an English name. Not too many of them in Ireland.

[pberggren1]

So we are rare then.

[Widthofacircle]

Thank you all who took the time to welcome me here. It is great to communicate with people who are experiencing WG. At the hospital I attend I am the only case of WG they are treating. Ireland has a small population and as as WG is quite rare the chances of meeting or communicating with a fellow "sufferer" (hate that description but cannot think of another appropriate word to describe) are small. so it has been quite a lonely journey to date.

[Widthofacircle]

You could say that

[Widthofacircle]

Hi Mark
We shipped most of our criminals to Australia years back. Maybe your ancestors got on the wrong boat. If they were still shipping criminals to Australia I would commit a crime right now to get out of here as the recession is starting to bite hard