Diagnosed in Decemember 2009

[Sangye]

Mandy, who told you the risk of becoming sick while immunosuppressed is not that great? That doesn't even make sense. It's not like the immune system is optional in life! Many Weggies die from infections instead of Wegs. Without a strong immune response, a cold can easily turn into pneumonia, and the pneumonia can easily become life-threatening. Whoever told you that should go back to 1st year medical school. Or junior high. Aargh.

[MCC]

Mandy, who told you the risk of becoming sick while immunosuppressed is not that great? That doesn't even make sense. It's not like the immune system is optional in life! Many Weggies die from infections instead of Wegs. Without a strong immune response, a cold can easily turn into pneumonia, and the pneumonia can easily become life-threatening. Whoever told you that should go back to 1st year medical school. Or junior high. Aargh.

Perhaps I worded it wrong! Both a nurse and my doctor have told me not to be too concerned about people with a cold, but that it is people who have a more serious illness such as measles who I should avoid. I've been told to take my temperature every day to check it does't go over 38.

They said my immune system could still deal with a cold. Is this not the case then?

Realistically it would be difficult to avoid people with minor illness anyway...am actually at the airport at the moment waiting to board a domestic flight and have been a bit worried since last night about catching something on the plane!

[Sangye]

Okay yes, your immune system could typically still deal with a cold. It depends on your current situation, though. There have been times when I was so weak that a simple cold would certainly have turned into a major illness.

Many Weggies find that a simple infection really wipes them out much more than it would have before Wegs. That's due to Wegs and the drugs. In addition to taking your temp, take note of a sudden drop in energy. That's often a sign that your body is fighting off an infection.

Flying is risky. Use hand sanitizer liberally, gargle with warm salt water as much as you can after flying, rinse out your nostrils with warm salt water, and sip warm/hot fluids during your flight. Make sure you rest a lot the next day, too.

[elephant]

Ever since I was diagnosed, I will not even get on a plane. Several reasons: my sinuses are awful, eustachian tubes clogged on/off, afraid of picking up germs ( to confined), and I pee way too much.

[MCC]

Thanks for that, I shall use the advice if I ever leave- have been delayed for three hours now.

[Sangye]

LOL-- okay, I'm sure it's not funny right now, but later?

[moyan]

Thanks, Sangye. for a month I have had no energy to do anything, and you tell me that is probably because the infection in my foot. Continued with the antibiotics and it is going down and I feel a heck of a lot better.

[elephant]

Moyan glad you are feeling better.

[Sangye]

That's great to hear, Moyan. I hope it completely clears up this time.

[onatreetop]

Speaking of feet.......... I tore my plantar whatchamcallit. Thats why my foot is giving me problems. Took another MRI to find out but I did!!!!! And welcome Lightwarrior!!! I have had little time to respond but have been trying to keep up on the reading. It took me from October til Jan. to get to a WG specialist in Balitomre at JHU. It was so nice to be able to speek to a doctor that understood what i was really talking about. And to be able to question and get a really good answer too. That was a three hour drive not bad but worth it. My RA has only seen 12 people with WG and claims that that is a lot for a private RA. I am starting to believe hes right. The JHU DR. said he had seen a few hundred so............... rare is a good word. I am on my 7th month of oral cytox and pred. up and down a few times now. Really want down again. The pred I am having a harder time with than the cytox but that is an old story.