Wegener's Granulomatosis: The Treatment (Podcast 2)

[missm23]

Hey everyone!

If you haven't seen my posts before I am a young female, 23 to be precise, who has been living with WG since 2009.

Before I was diagnosed I was studying for a degree, I was diagnosed in October 2009 and was hospitalized as a result. I missed so much time off university I had to take a break for one year.

I am now approaching my graduation and have to produce a final year project. I am planning on creating a series of educational podcasts highlighting illnesses like this one. It is one that has a series lack of funding and public knowledge of the illness is minimal. (Did you know what it was before you got it?)

I have already released one episode exploring WG but in this episode, I want to look at how it's treated, it's different in so many people and so many people are prescribed different things.

I'd really like to know what your dosage/medication is, how you feel about it and how it affects your everyday life.

I myself have so far been on Cyclophosphamide, Prednisolone, Mycophenelate Mofeti and now Rituximab.

Any response is appreciated and if you wish to email me rather than post on here or inbox me, feel free.

Please note - you will not be indentified in this work but it will help shape my project!!

If you want to email me rather than posting on here, that is fine!

My uni email is: [e-mail]

Hotmail: [e-mail]

Thanks!

[SueAshdown]

I had 3 months of oral cyclophosmide, with high dose pred. Then on pred for a couple of years and a couple of further times when I had flares. Maintained on aziathioprine, relapse if I come off this. Had 2nd course of oral cyclophos with a flare 7 years after diagnosed.

Hope helpful.Sue

[missm23]

Thank you Sue!

[Essex-jill]

I have Rutiximab every 6 months and it's my 'wonder drug ' it helps with the bone pain, fatigue, and keeps me feeling reasonably well for about 5 months. I always know when it's due as the nosebleeds, joint pains, feeling of total exhaustion and bruising start to reappear.

The side effects I suffer from the Rutiximab are headaches and feeling flu like for a few days, but within a few weeks I start to feel better in myself. I previously was on cyclophosphamide, prednisolone, and methotrexate but they suppressed my immune system too much and I ended up with frequent infections and then pneumonia.

So for me Rutiximab works.I also have kidney failure,stage 4, which is unrelated to my vasculitis, but for some reason it helps maintain my kidney function at a reasonable level for the time being.

Hope this is helpful.

Jill

[Dbis22]

I emailed you a fairly lengthy summary. Hopefully you got it OK? (to Hotmail email address)

Hope it helps!

Dave

[missm23]

Hey everyone!

Thank you so much for all of your replies, I will be including as much as I can in the next episode which looks set to be done by Friday!

Thank you again

Aimee

[John_Mills Volunteer in reply to missm23]

Great!! Good luck x

[vargus57]

Hi im jerry and im 57, i was diagnosed wg in 1993.when i was ill with it at first i had a lot of joint pains and cud hardly walk. doctors thouht i had artharitis at this stage.i lost a lot of weight and got worse. after being rushed into hospital bout 10 monthes later i was diagnosed with wg. i as put on high dose of steroids which made me feel better straight away.i was in hosp for a wk and put on pred and azathiopin. ihave been on this med for 20yrs now and always worked full time with out any time off sick! i no im very lucky ido suffer from fatige and my sinuses but no joint pains. the medication has been so good to me with no side affects.i wish more people cud b as lucky as me good luck, any Q will bhappy to ansa. jerry

[robinleemcclure in reply to vargus57]

How are you today? I was diagnosed 1 yr. Ago. Age 54 . Your story is similar except can't tolerate meds. Started 60mg. The side effects were bad. Now am on 10mg. I am doing OK.my issue is w/ lungs. This is really not popular, so Dr very hard to find. I have a great lung Dr. Doing OK , after 19 mths. No work,Dr. Said YES to work. 

[robinleemcclure]

Hi I am 55 yrs. Old and was diagnosed 1yr. Ago.I am convinced that my wegeners is the results from a root camel  (from Dec. 2010) gone wrong. The sinus troubles was first starting in fall 2012. In Dec. 2013 the tooth#3 went bad. I had a retreat on that tooth in Jan. 2014. From that my life went from bad to worst. Drs. Wouldn't believe the tooth needed to be pulled. They  meaning my primary Dr. , the dentist  and every other specialist they sent me too. My sinuses were out of control. That year my body started falling apart. I found a new dentist in may and he pulled the tooth in June. He found it was full of infection. I was given so much antibiotics that year. I had to have septoplasty on my nose in sept. 2014.  In November I developed pelvic floor disorder. In January 2015 I developed horrible body aches. Started left shoulder, than thumb, than other shoulder knee. During this time I went different doctors. I sleep wrong, another said I had arthritis, by time march got here it was excruciating. Than I got a chest cold.my PCP skipped town so I had to find a new Dr. during this. The day I meet the new Dr. she sent me to hospital.,I couldn't breath. That wads march 17 2015. On march 25, they did lung biophy. Diagnosed wegeners, spent 11 days there, and was then transfered  to Detroit Henry Ford hospital  for 4 more days. In Oct of 2015 I suffered heart failure, 5 more days in hospital. Good now but have been unable to work for 19 months. I had 4 rounds of ratuximab in may 2015. Then I got a diffetrent Rheumatologists and was given azathioprine for 2 months, but it made half of my hair feel out. Raised my liver levels, and was freezing Constantly. So Dr. took me of it. I am also on 10mg. Prednosone. I am just getting over major chest infection. The Dr. Wants me to start mycophenolate which I am not sure. The side effects are similar to azathioprine and that doesn't sound good.  There is only 1 Dr. In this area , very frustrating, not giving up. Open to any ideas that might help.

[Jan22]

I have had WG for nearly 4years it was triggered by a drug called Gastrografin to which I had a severe reaction pain in joints, rashes and generally unwell . Eventually diagnosed with WG and hospitalised on pulsed steroids. Only had prednisolone and Retuximab as treatment, now in remission and only on 2mgs prednisolone daily, think I am fairly lucky compared to others. good luck with the educational podcasts JAN