I've noticed that Patrick (my 14-year old grandson) does it all by himself. He washes his hands very carefully frequently. I was not with him the first time he met with his rheumatologist, but she apparently had a great affect on him because he is very responsible when it comes to taking care of himself. In addition to frequent washings, he is totally responsible for determining what medications he must take: how much and when. He has it all mapped out when he will be off his medications completely. I'm crossing my fingers that it all goes according to plan.
He has just finished his football season and by the last few games he was playing offense and defense. He said he was no longer short winded after a fairly long run.
He is due in for some tests to look at his lungs. He had a sizable mass in his right lung in the summer but the doctors are hoping that since he is still growing that the new growth will repair the damage from WG.
He sounds like a great kod, Marian! Let us know how his tests go. From the sound of it they'll be positive.
Forum Administrator
Diagnosed March 2003.
Currently but not permanetly residing in Canberra, Australia.
I've just read this thread and it's really helped because although I have been told that my immune system is suppressed at the moment due to the prednisolone, cyclophosphamide and recent plasma exchanges - no one has told me exactly what to avoid. Do I have to run away from everyone with a cold? Should I stay away from public places like supermarkets? I'm currently on co-trimoxazole twice a week to prevent me catching the PCP lung infection but how much protection does this provide for other infections?
I am a little concerned as today I went to meet my 3 year twin nephews who are both suffering from conjunctivitis at the moment - should I be worried that I've come in contact with this infection?
Also, how much do I need to worry if I do catch a cold?
At the moment I'm just taking it easy, wrapping up warm and trying not to get too close to anyone outside of my immediate family.
I am due in clinic tomorrow so will express my concerns then, hopefully the renal registrar I am seeing will have some idea of just how careful I need to be.
Also from a hand washing point of view - my partner has certainly become obsessive about this since I was diagnosed and I also wash my hands far more than I used to and use the hand gel a lot too, especially after handling my animals.
I too am taking Co-Trimoxazole, but I take one every day. I started this about ten years ago now and it stopped me getting a lot of little infections - sinus, lungs, gums, the list went on...... However, I still occasionally get a lung infection that requires a change of antibiotic for a short time. I take no special precautions at all apart from a pneumonia jab and an annual flue jab. If anything, I seem to get fewer colds than most people although it is sometimes hard to tell.
Hi Luce...
It's a good idea to stay away from anyone that's obviously sick. I'm always aware of people that sneeze around me or look ill and I do my best to keep my distance but life must go on
I too have had the occasional lung infection that requires antibiotics but I must admit, not too many over the years since diagnosis.
The important thing I guess is to be alert, not alarmed. Be careful but don't let it rule your life.
As for those kids with conjunctivitis, be careful We had a friend ver here once that had it and I got it bad. It was taken care of by the usual ointment but it wasn't pleasant. It's not life threatening though and won't manifest itself as anything but conjunctivitis if that's what you're worried about.
Forum Administrator
Diagnosed March 2003.
Currently but not permanetly residing in Canberra, Australia.
Ok, so clinic appointment went well today. I start 100mg of oral cyclophosphamide twice a day on Thursday for 6 weeks and they're continuing to reduce my prednisolone dosage every 2 weeks. Also continuing with the Co-Trimoxazole whilst on the chemo and Alendronic Acid all the time I'm on the steroids.
I asked about infections etc and you're bang on Andrew - avoid anyone who's obviously sick. Would have been nice if my sister in law had told me the kids were ill before I visited but ho hum!
I know I'm going slightly off the germ topic now but can anyone explain blood test results to me? My doc mentions them but doesn't really tell me what normal levels are - for example today I was told that my ANCA level is currently 59 but was 327 when I was admitted to hospital. Last time I was at the clinic he said that the figure they use to check the inflammation of blood vessels was 134 when I was admitted but had dropped to 40 with my last blood test.
I'm sure I'll get to understanding all this in time but its still only been 6 weeks since I was diagnosed so I'd be grateful if someone could interperate the above and tell me what it really means.
Also thanks Andrew, good to know that the worst I'm in for is a nasty bout of conjunctivitis and that it wont trigger anything more sinister.
Hi Luce,
The numbers they are talking about are probably a combination of the ANCA and ESR or CRP.
ANCA is measured by 'titre'. What they do if they get a positive result is to start diluting the sample and checking again to see if the ANCA is still positive. If your ANCA is '2', it means that your blood provided a negative result after two dilutions. If it was 329, it only became negative after 329 'dilutions'. Therefore there is 'more ANCA in your blood', if you like, the higher the number. Different labs operate to slightly different rules, so it's best to ask them or your doctor the level they consider to be a 'negative' result.
The other number could either be CRP (C-reactive protein) or ESR (erythrocyte sedimentation rate). Both get higher according to the amount of 'inflamation' there is in your body. Neither are particularly accurate (CRP is thought to be more reliable), but they are both useful guides to vasculitis activity (but by no means only vasculitis). Normal level for CRP is about 5-10, and for ESR between 10 and 30, rising with age.
Hope this helps,
Sarah
Last edited by Twice; 11-26-2008 at 08:57 AM. Reason: can't type
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