hello

[kulharv]

hi, i was just diagnosed oct 26, 2010 with WG after 1 yr of being treated for rheumatoid arthritis
currently on prednisone and have had 1 treatment of cyclophosphamide with another the next one on the 16th.
Can anyone let me know what to expect?
my main problem has been with my joints, hands & feet, sinus, ears and lungs

any info would help

thanks

[pberggren1]

Are you getting oral or IV cyclophosphamide? Has your doc mentioned Rituxan? What meds are you on right now and what doses? Are you seeing a Wegs specialist? If not, you should be or at least have your doc consult with one listed with the Vasculitis Foundation. Welcome to the Forum.

[kulharv]

Good Morning Phil,

Thank you for getting back to me.

I am getting gthe cyclophosphamide by IV treatment. the doctor had mentioned orally but didn't recommend it as it would stay in my body all the time whereas the infusion wouldn't. I am currently taking 50g of prednisone 2x per day, actonel 1x month, biactrim 3x per week and tecta daily.

My specialist is a rheumotologist and i am not aware of any WG specialists in the the Lower Mainlaind. Do you know of any? My area would be the Vancouver, Burnaby, New Westminster, Surrey areas in BC

The doc did mention a drug that was not covered, expensive but he didn't go into detail as he wanted to start this IV treatment first. I will be getting 3 treatments every 2 weeks and then monthly after that for how long i dont know at this time. Also my prednisone dose will start being lowered after my 3rd treatment
I have been on methatrexate but reacted to that after being on it for a few months and developed a cough that lastgd 4 months, developed phuenomia and was seeing ENT specialits, respiratory specfialts as well who took me off the methatrexae asap. Then after my diagnosis finally at the end of |Oct, the rheumy put me on Aziathoprine which caused my liver tiver to react and that was stopped as well earlier this year.
My dose of prednisose was gradually being lowered since the end of Ocgt but when | reached a dose of about 10 mg,, my joint pain appeared and gradually it was to point that I couldn't get out of bed without assitance. Also, I started coughing up blood one morning only to discover that my chest xrays showed phenumonia again and possible lung inflammation. Thats when the rheumy increased my dose of prednisone to its current dose. I have a constant stuffy nose, major night sweats and mouth sores which I don't know if that is from the WG?

Sorry for rambling on but I get confused and then just keep going.

Any guidance that can be given would be greatly appreciated. I just want to have some sort of normalcy in my life after about 1.5 years.

Once again thanks for getting back to me and I look forward to hearing from you again and anyone else that may be able to offrer my some more insight.

Thanks and good luck to everyone for their treatments!

[NicShaf]

Hi kulharv, welcome to the group.

I am on oral cyclophosphamide, so I don't have much advice for what to expect from the IV form. The risk of the oral Ctx is that it goes through the bladder, and can cause problems there, but drinking plenty of water helps this.
On a possitive note, I started feeling better about 4 weeks into my Ctx treatment. My nasal swelling started going down, and I could breath through my nose again...this is the most outstanding symptom I can recall at the moment. Actually, I think it started getting slightly better when I stared Preds, and significantly better with the Ctx treatment.
Although, while feeling better from the symptoms that Wegs had caused for months, I started getting the side effects of Preds about 6 weeks into taking it. Preds has some side effects that are not fun at all, but they do get better as you begin to taper.
I hope everything starts working for you and you can start feeling better.

[kulharv]

Thanks Nicole,

Yeah, prednisone, I've been on it for over a year and whenever I gradually reduce the dose, they have to up it again, hence this new treatment.

Did you have any side effects from the oral cyclophosphamide?

Once again thanks for the info an dhope things are going well for you!

[NicShaf]

I would say tiredness and a little nausea from the oral cyclophosphamide, but it's hard to tell if the nausea was from the Ctx or the Preds. At frist, I think it was the Preds, and it felt like acid reflux, but now that I've been tapering Preds, it feels more like nausea, and I'm assuming its more the Ctx now. I think those are really the only side effects that I've experienced.
I'm at 150mg of Ctx daily, which is an average dose based on the patients weight, I think 150mg is the middle ground.
Things are going pretty well for me, thanks I hope things start going well for you too.

[Sangye]

If you're coughing up blood along with those other symptoms, it's likely your lungs are hemorrhaging due to Wegs. I suggest you get a lung CT asap. An x-ray will often show "atypical" pneumonia but the CT will show the real thing.

[pberggren1]

I don't know of any Wegs specialists in the Vancouver area but you should at least have your doc consult with one listed with the VF Foundation.

[kulharv]

Thanks Phil & Sangye,

When I was diagnosed, my specialist, did a check of my ANCA levels and that is how he diagnosed me.
I was planning a trip to India that week and he suggestged that I still go, which I did and took my results with me. I consulted a vascular surgeon, rheumotologist and another specialist while there and they all agreed with the diagnoses. One specialist that I saw had said he used to primarily focus on just WG patients that changed as there were not that many cases that came his way.

I was to have CT scheduled by my ENT speciailist but he's an idiot and hasn't got back to me for 2 months yet. I will call to followup.

I get regular blister like things on the sides of my tongue and now have had a 'hole'/sore of some sort on the inside of my cheek. Its been there since the end of April and doesn't appear to be getting any better. I don't know if this is a result of the prednisone or WG, also if the reason for not healing is due to the IV of cyclophosphamide.

I am also short of breath but I think that is due to all the weight that I have gained since Oct . It is really getting frustrating!

I appreciate all the info that has been provided to me and look forward to hearing from anyone.

Thanks for letting me share.

[kulharv]

Hi Phil,

do you know the name of the WG specialist in Edmonton, since there isnt one in my area, I don't have problem flying to Edmonton.

thanks.