Worst things about having Wegener's granulomatosis

**Jack** · 03-18-2011, 03:22 AM

I use a small pharmacy that is local to both my home and my doctor's surgery. It is run by the owner and before him his mother was the pharmacist so it is a true family business. They give a very personal service and will always have a chat or discuss drug side effects and other related stuff. They have even delivered to my house without being asked during the bad weather and when I have been particularly unwell.

**LisaMarie** · 03-18-2011, 06:48 AM

My top ten
1. Fatigue-not being the person I used to be because of it
2.Pred weight gain..UGHH
3.All The Dang old lovely side effects from drugs we take
4.Having people tell me I look great when I don't feel it at all
5.Nasal and throat crusting
6. Having health care providers not listen to you!!!!!!!!!
7.Pred rage...I have keep mine under control pretty well thanks to mediation
8.Using oxygen...even if i am slowly weaning myself off
9. Sleep apnea due to pred
10. Lossing partial hearing in my right ear....it sucks but gives me an excuse not to acknodwledge stupid comments...or mean ones

**missc** · 03-19-2011, 03:32 AM

Love this thread!

mine would have to be - Always being out of breathe and people asking do i have asthma (i just say yes) so much easier
- Not being able to breathe through my nose. So i talk like i have a cold all the time and cant smell
- Food not tasting like they should
- Hearing keeps going
- Having a very active day and feeling it for the next couple of days
- Having that worry that my second kidney transplant could fail again
- Beinging 5months pregnant and hoping WG will let me carry my baby boy fall term!!

**LisaMarie** · 03-19-2011, 03:54 AM

Originally Posted by missc

Love this thread!

mine would have to be - Always being out of breathe and people asking do i have asthma (i just say yes) so much easier
- Not being able to breathe through my nose. So i talk like i have a cold all the time and cant smell
- Food not tasting like they should
- Hearing keeps going
- Having a very active day and feeling it for the next couple of days
- Having that worry that my second kidney transplant could fail again
- Beinging 5months pregnant and hoping WG will let me carry my baby boy fall term!!

Will keep you in our prayers and let us know when your perfect baby boy arrives!!!!!!!

**missc** · 03-19-2011, 03:59 AM

Thank you so much

**NicShaf** · 03-19-2011, 05:44 AM

Originally Posted by missc

Love this thread!

mine would have to be - Always being out of breathe and people asking do i have asthma (i just say yes) so much easier
- Not being able to breathe through my nose. So i talk like i have a cold all the time and cant smell
- Food not tasting like they should
- Hearing keeps going
- Having a very active day and feeling it for the next couple of days
- Having that worry that my second kidney transplant could fail again
- Beinging 5months pregnant and hoping WG will let me carry my baby boy fall term!!

To add to LisaMarie's prayers, I will also keep you and your baby boy in mine too! Congratulations also!

**Daggar** · 03-20-2011, 06:55 AM

missc- a number of young women on this site are worried about child-bearing with WG.

Are you on any meds? Holly's gynecologist has told us that Imuran seems to be the one immune suppressant that has little to no effect on pregnancies ... is that what you've been told?

**missc** · 03-20-2011, 01:55 PM

Originally Posted by Daggar

missc- a number of young women on this site are worried about child-bearing with WG.

Are you on any meds? Holly's gynecologist has told us that Imuran seems to be the one immune suppressant that has little to no effect on pregnancies ... is that what you've been told?

Hey Daggar, I am still taking meds. Which are Prednisolone, Tacrolimus, Bisoprolol, Co-Trimoxazole and Omeprazole. I was on Mycophenolate but got took of it before i conceived because it can affect pregnancies. I was took of it 6 months before to see how i would get on with out it and was fine, so doctors give me the go ahead to get pregnant. For many years i have had so many questions about becoming pregnant with WG and no one has been able to ask my questions so i hope this helps you