And yet another newbie

[Dryhill]

For over a year I had been having problems sleeping. Which ever side I slept on the lower nostril would block up and soon I was breathing through my mouth, I would then wake up with a piece of sand-paper for a mouth. Repeated trips to my doctor did no good. Then during November 2010 I started to get strange aches in my shoulders and knees, these I tended to ignore as I had decided it would be fun to fall down an entire fleight of stairs (I have only lived in my home for 27 years, you really can not expect me to remember where the stairs are). At the start of December 2010 I got the symptoms of flu so I decided to take a few days off work. I panicked when I got earache in my left ear (I had had earache as a child but always in my right ear) and was getting nose bleeds, something I had never had before, and wasalso coughing up blood. A trip to the doctor got a very worried GP urging me to go to the local hospital asap but NOT to drive myself (something about my SATS only being 79% and I might pass out whilst driving). Six days later I was diagnosed with Wgeners and was very quickly given Cyclosphosamide and 60mg of Pred. After a failed attempt to move my fortnightly chemo sessions to a three weekly cycle I am now on Cyclophosimde every three weeks with a weekly 20mg dose of Methotrexate. The Pred is now down to 15mg so hopefully I can start to lose the weight I gained. Due to lack of money I resumed working (as a self-employed taxi driver) in mid July, slowly building my hours up to a nine hour shift. Things are a lot better, my breathing is now normal and I get a good nights sleep, but I still have the aches in both knees and shoulders. The one thing that does worry me is come the winter I will be sitting in a nice warm box with a lowered immune system just ready for all those wonderful bugs that my customers will be only to pleased to pass on to me.

[elephant]

Welcome and glad you are here, sounds like you are doing ok. Just make sure you wash your hands and keep hand sanitizer around. Let your doc know about the knees and shoulders, you could be flaring.

[Sangye]

Hi Dryhill, welcome to the group! I'm glad you got diagnosed so quickly and the treatment is working, though I'm wondering if you've been on ctx (cyclophosphamide) since Christmas?? That is way too long on that drug if so.

Your concern about being exposed to germs is valid. Make sure your doctor tests your vitamin D levels every month. Vit D is protective against flu and minimizes infections if you get them.

[Hammy8241]

Flu jab might help.

[norcalian]

Your concern about being exposed to germs is valid. Make sure your doctor tests your vitamin D levels every month. Vit D is protective against flu and minimizes infections if you get them.

I didn't know that about Vit D...luckily my rheumy has me taking a lot of it...I always thought it was just for my bones. I'm glad to hear that it has some other uses.

Do most people on here with WG get flu shots? how about the pneumovax? My ID doc wants me to get the pneumovax...but my rheumy would rather I wait until I'm below 20mg/d of pred...any thoughts?

[ArlaMo]

I just got my flu shot a week or two ago. I had the pneumovax when I was out at CC, but I haven't had another. Need to check into that.

Welcome, dryhill - hope things are going well for you!

[Sangye]

I didn't know that about Vit D...luckily my rheumy has me taking a lot of it...I always thought it was just for my bones. I'm glad to hear that it has some other uses.

Do most people on here with WG get flu shots? how about the pneumovax? My ID doc wants me to get the pneumovax...but my rheumy would rather I wait until I'm below 20mg/d of pred...any thoughts?

Make sure your doc is doing the blood test for vitamin D levels. You might need much more than you're taking. I need an unbelievable amount to stay in normal range-- 10,000 IU daily.

I don't do vaccines. I don't think the risk to benefit ratio is favorable.

[Dryhill]

Thanks for the information about vitamin D, I also thought it was just to do with my bones. I am seeing my GP this week so I will ensure that they are checking up on my levels of vitamin D.

[Dryhill]

Hi Sangye,

When my consultant tries to start easing me off ctx I started getting ill again, so he reluctantly decided to keep me on it for a bit longer (he did explain the problems and risks involved). I have one more three weekly session then I should be only having ctx once every four weeks.

I note your comments about the flu jab. As an Asthma sufferer I am entitled to receive it, but have always declined as I am also not convinced it is that beneficial. Friends of mine have the injection every winter but still seem to get flu quite badly, if anything worse than I me.

[Sangye]

If the Wegs is still so active after so many months of being on it, it may be that ctx is not the best drug for you. It should work faster than that if it's going to work. Are you seeing a doctor who specializes in Wegs? The other members from the UK can guide you to them.

BTW I love your signature quote.