Positive nasal biopsy

[Alysia]

Hi Pete,
it sounds better then before... and it is good that you have wifi
i didn't know what mrsa is, so i googled it:
Methicillin-resistant Staphylococcus aureus - Wikipedia, the free encyclopedia
i remember someone on fb making warning considering it.
i hope you don't have it ...?
anyway, it seems that you will have to be in charge of your treatment... and you have us to hold your hand all the way...

[mishb]

Good luck Pete,

I hope that this is the treatment that finally works for you

[gilders]

Quick update.
The rheumatologist has been to see me and explained that the reason they haven't jumped straight into more aggressive Wegeners treatment is because they're not sure if there is something else going on. Due to some blood results looking good, such as ANCA, they don't want to rule out anything. Obviously something like an infection would only get worse if they start Rtx.
They have done LOTS of bloods and swabs. I've been for chest xray and they've jabbed me with blood thinning drug as preventative measure due to previous blood clots. Cardiologist also came to see me. I declined beta blockers again as he reassured me the arrythmias were not dangerous and for some people they are painful.
I think I'm been taken care of well and when all results are back tomorrow there should be discussion on what treatment I'll go on.

[gilders]

Just been moved into isolation. Hopefully should have a better nights sleep now I have my own room. I think they might have moved me in preparation for rtx infusion rather than they've found an infection in me that could spread amongst the ward. Now that would be a change -me posing a risk to others!

[Debbie C]

I hope you don't have an infection and that they moved you to isolation so you won't get more sick from someone else.Hope the results are good tomorrow....Sleep well

[gilders]

Yesterday didn't go anything like I expected!
A more senior rheumatologist came to see me. He decided that due to my blood tests looking relatively good, the fact that my joint pain isn't too severe and the fact that the flare seems to be localized to my nasal/sinus area that he didn't want start more aggresive treatment for my WG flare.
He said he would get ENT to check that there is no severe inflamation/activity in ears, nose and throat. If the activity isn't too severe he wants to reduce the pred and "see what happens" He went on to say that this could cause WG to flare up more and that would confirm the current meds (Pred/aza) aren't working. I told him I thought this seemed a little risky, but I guess it's a calculated risk.

A short while later an ENT Dr came to my bed and asked me when I last had a nose bleed. I explained that everyday I have fresh blood and also crusty, bloody scabs, but I've not had a full on nose bleed that required me pinching my nose for a long period for about a week. He then said that I was not urgent and would see me as an out-patient in about a week's time.
A short while later a renal Dr who works with my usual renal Dr came to speak to me. I explained what had happened and asked if I could go home as there was no point in me waiting in hospital for a week to see ENT. He agreed, so I'm now home.

My main concern is the fact that not only am I now on less meds, but ENT haven't even checked how much activity is going on.

I've had this condition for 19 years and know my body quite well. I've had 4 relapses and can usually tell if meds are working. Reducing meds to see if they're working or not does seem risky with an illness such as WG, so I'm not too happy at the moment. It seems strange that I've seen 4 different specialists over the last 4 days, 3 had the idea of starting more aggressive treatment, but 1 wants to do the opposite and it looks like he's got his way.

[mishb]

For me, whatever the Head Rheumatologist says - goes.
I guess this is what has happened to you too.

I'm so sorry that it hasn't worked out, as was planned, Pete.

I hope that your good blood results means that something is starting to go the right way again.

[windchime]

Oh gilders I'm so sorry for the problems with the doc. It's funny how some docs will tell you to listen to your body and that you are your own best advocate and others have a GOD complex and won't listen to a thing you're saying. Who put you in the hospital originally and why didn't they bring in the senior rheumy before all the time and expense of hospitalizing you? That part makes no sense. I agree with you that reducing your meds is a poor move especially since your symptomatic. What planet are they from? Rhetorical question. Here is a hug for you........ or two.

Good luck with your ENT appt and keep us posted.

[Alysia]

Hi Pete,
I am glad you are at home again and sorry for the confusion and frustration.
I thing that if you know yourself so well and can tell exactly what is going on inside, then you shouldn't be such a "good kid" and listen to the doc. THE DOC SHOULD LISTEN TO YOU.
can you ask for second opinion ? as far as you know yourself, and if you know that reduction of pred will cause trouble, just DON'T DO IT.
trust youself. and insist that they listen and accpet your point.
not easy to fight for these. but we are with you.
besides, if there is wg activity (nose bleeding freshly is a wg activity !) and even if it is not a flare but smoldering, still it needs to stop. try again to ask for rtx. they say no because it is expensive. don't give up.
we are all with you, holding your hand. continue to update. lots of hugs to you

[gilders]

why didn't they bring in the senior rheumy before all the time and expense of hospitalizing you? That part makes no sense.

My original Dr knew I need more investigations and more than likely more aggressive treatment immediately. He explained that no matter how hard he pushed for me to get appointments with rheumatology or ENT as an outpatient, it would take at least 6 to 8 weeks (much too long), but as an inpatient he could get them to see me within 24 hours. That's one of the reasons he wanted to hospitalize me, although in the case of the ENT Dr, it didn't go to plan. I think my original Dr will e rather unhappy with ENT.