New from Perth, Western Australia

[Col 23]

Hi Deanne
I too was diagnosed after nearly going blind and admitted to RPH. I also had nodules in my breast and lungs and my feet were extremely painful. I also experienced driping nose and other nodules in my legs and arms. Im down to 15 mg of Pred from 80mg and 25 mg of Methotrexate, I also take antidepresant medication. I have Rheum arthritis also with this condition that affects my joints. RPH has two cases of Wegener's me and someone else. I am also aware that there a few cases at Sir Charles Gardiner Hospital. Did your specialist try other medications before going on cyclophosphamine? Its been a tough road especially with the high dose of pred, had a lot of melt downs. I also felt very alone until I found this group.
cheers Col 23

[elephant]

Deanne, I had eye problems for years and no eye doctor could figure it out. Once I was diagnosed, I had to tell my eye doctor what it was. My left eye is the problem, I had glacoma...that is gone now, but just developed cataracts which don't go away. I have a little swelling around the eye, but the doc says...it has improved. I still have sinus issues.
Thanks for sharing!

[sharon]

Hello Deanne,
I am so glad u found us. I am on the east coast, not too far away from Natalie. I have found it so good talking to people who are in the same boat, just getting stuff out my head with others that understand has really helped me, i am sure it will you too. Welcome once again, you are among friends.

[JanW]

Welcome Deanne...I'm in the U.S., New Jersey to be precise. This is a wonderful group---you will make friends and find support here.

[Bruce]

There's some people in Perth area who know about WG. You might contact the Australian WGSG at Wegener Also you might email to [email protected] to ask about WG and similar autoimmune vasculitis patients in the Perth area. (Jack's lovely Margaret had WG but passed away due to other causes).

[elephant]

Thanks Bruce for the information. Welcome, sorry to hear about Margaret.

[Deanne Hull]

Thank you very much I will certainly email and find out.

[Deanne Hull]

HI Col, my specialist started me on cyclophosphamide and pred first and my body does respond very well to this treatment so far but a couple of months ago I had a flare up due to the both meds being reduced too fast which resulted in irisitis so i am back up again and will be seeing both the eye specialist and my wg specialist this week. He says he will reduce the meds one at a time if my results are good. fingers crossed !!!

We are allowed to have meltdowns we have a lot to cope with so take it easy on yourself.

[Col 23]

Hi Deanne
Sounds like we both have eye problems, I was like you never heard of WG before, came as a bit of a shock. Every time I have a flare feel like someone has just punched me in the eye and I have to up the steriod drops. Mostly my eye specialist has advised that it has to be treated systemicaly ( cant even spell some days). Went up another 5mg of Steriods recently but back to 15mg until the end of the month. Still on Methotrexate 25mg. Feet having like pins and needles and fatigue continues to be a real problem for me, falling asleep or extremely tired all the time. Are your bloods coming back better that they were in September? How is the cyclophosphamide side affects? My Rheumy has talk about this drug being the next one for me if needed. I dont want to go on it.
It is hard for family and friends to understand this disease, I always feel like a hyperchondriac (still cant spell today) but they will never know the effort put in some days to attend a function or visit anyone. Im a good pretender.
cheers Col 23

[Deanne Hull]

Hi I seem to have got over the flare up nearly, i can still see the inflammation in my eyes so i am off the drops now and will see the doc on Wed to see what he says, I am having a blood test tomorrow for my specialist for friday, my anca was 10 before the mediation was reduced and with the flare up it went to 26. ( when i was first diagnosed it was 65 ) I have also had a bone density test to see what is going on there so i will find out that as well.

It is hard to know what medication is doing what but the steriods are the ones that cause me to think that this is what it is like to be on speed. Those side effects are the hair growth on my body where i don't need hair to grow but my eyebrows are looking pretty fine at the moment. I hate the weight gain, the moon face, and the hair thinning. I have a horrible taste in my mouth which is more acute not long after i take all the meds. Most of all i hate the stomach swelling, which is very uncomfortable and have already had someone say are you pregnant. Charming!!! On the other hand, my skin looks fabulous.....no wrinkles, fat doesn't crack as they say!!

It is hard on the family especially my husband, this is our second marriage and he works away and we have 6 kids (ages 24, 23, 22 21, 18 & 16 ) between us and life is always challenging enough with them. I just try to get on with things , try not to do too much, learning to say no when i have to. Making myself a priority which is hard as my kids have always come first. My body does respond well to this treatment and resting a lot seems to help enormously. Lucky we have foxtel... I do have brain fog most afternoons and it is hard to get the words out sometimes..And like you i do pretend sometimes to stop people from worrying as I don't want them too...

Are you working at all and doing some exercise, my doctor recommends cardio work to keep the vascular system as healthy as you can so i have started Zumba of all things and i am going to try yoga and just walking and maybe swimming in the summer,