New to all of this....

[staceyfitz88]

Hi everyone. I still feel relatively new to the Vasculitus world but I am hoping this group will help me understand it just that bit more.

I was diagnosed with GPA in Feb 2016 at the age of 27. I was on 60mg of Steroids in hospital and have slowly been reducing them (currently on 7.5mg). I was also given Rituximab which has been a success so far. I asked to try Azathioprine first as we hope that one day we can have another baby but unfortunately it didn't agree with me on two occasions so I started Methotrexate back in Oct 2016 and all seems well at the moment.

Generally I feel fine, I suffer from nasal crusting and tiredness but I feel lucky that I was eventually listened to at my GP's and treated in time. Also the silver lining to all of this is my "maternity" leave has been extended and I have spent 2 years with my beautiful little girl now which would never have happened if I was well.

Looking forward to using this forum for support. Xx

[Hidden]

Hi and welcome, good to read that you have received proper treatment early on and that the medicines are working for you. Can you tell us what your first symptoms were that resulted in the diagnosis? Blood tests? Biopsies?

Hope you will continue to feel well and enjoy your daughter!

[staceyfitz88 in reply to Hidden]

Hi!

I had a nose infection for a good two years that only went away when I was pregnant. I had my little girl 7 weeks early due to severe pre eclampsia (no one knows if this could be linked) then my nose infections came back. I then had ear infection again these would not go away with antibiotics. Then my joints became stiff and I was unable to walk properly. I also had a rash on my feet legs waist elbows hands and gums (it looked like blood under my skin). My feet started to swell and at this point I was unable to walk or feed myself. I thought it was arthritis at first. Tramadol didn't ease the pain. I eventually had a blood test that showed my inflammation levels at 220+. Also I had protein and blood in my urine. I think that is all

[staceyfitz88 in reply to staceyfitz88]

Oh I also lost alot or weight x

[staceyfitz88]

Forgot one last thing...towards the end before I was admitted I was coughing up large amounts of blood x

[Katie18]

Welcome Stacey - glad you're using the forum - hope it helps. Lovely meeting you on Sunday cath x

[staceyfitz88 in reply to Katie18]

Thank you Cath for telling about this group from what I've seen so far it's really good and can see it helping in many ways! Really lovely to meet you too. Take care xxx

[DevonLottie]

Welcome to the group Stacey. I've lived with gpa for 17 years. Treatment has changed in that time and rituximab has had a major positive impact for many with the disease - including me 😊

[staceyfitz88 in reply to DevonLottie]

Thank you for the warm welcome.

Already feeling better for being a member, just knowing there are others I can talk to who understand.

Hope you keep well.

Thanks.

Stacey x

[RichardE Volunteer]

Hi Stacey, sorry I didn't get the chance to chat to you at the weekend but I think you spoke to Lynne and obviously Cath.

If you've not seen it, there is a good article on the VUK website about fertility and vasculitis here :

vasculitis.org.uk/living-wi...

I think it's sensible to try to get to a good remission before thinking about having another baby and as you say, Methotrexate is an issue. But I'd have a talk with your consultant about your long term aims for pregnancy so they can come up with a treatment plan that bears this in mind for the future.

All the best,

Richard.

[staceyfitz88 in reply to RichardE]

Thank you for your reply Richard. I will make sure I say hello next time!

My consultant and nurse are both aware that we hope to have another baby in the future that's why we tried Azathioprine a few time but unfortunately it didn't agree with me. Totally agree and understand I need to be in a good place before even thinking of trying for another but worry that if I do have the opportunity that I will be without medication for potentially a long time.

Thank you for the link I will have a read this evening.

Really glad I went to the meeting on Sunday and my husband also found it very useful.

Thank you.

Stace x