Just a cold?

[chrisTIn@]

It's been three weeks now, since I stopped taking Bactrim (Co-Trimoxazol).
Since yesterday I feel miserable.
Coughing, pain in my troat and trachea.
I don't have fever, though.

I allready emailed my Wegs-doctor. (My GP is not a very good source of information.)
I'm now waiting for the reply of the specialist...

This is the first time since my diagnosis and medicine-free remission
(allmost one year afer diagnosis) that I cached a cold.

I'm spending most of my time in bed,
and try to take care of myself as much as possible...
My hubby is away all day, and so is my student-daughter.

So I'm wondering... do you guys have any advice?
Should I try to fight this infection without antibiotics?
Or is the risk to big that my GPA/WG will flare, because of this?
(Btw... I don't have nosebleeds yet, my initial symptom). :unsure:

[Brooke]

I would see what your specialist says. Hopefully he/she will get back to you sooner than later so you know what to do. If it is Wegs, you don't want it to get too far.
Hope you get better soon!

[chrisTIn@]

Thx Brooke, for taking the time to reply.
I feel slightly better now,
have taken a painkiller [3x 500 mg Paracetamol (acetaminophen) ].

Haven't heard from the doctor yet...
(It's after nine o'clock in the evening, will have to wait till tomorrow to see if he has responded...)

If he 's not responding, I might go to my GP after all...
He can at least listen with the stethoscope... :confused1:

[delorisdoe]

This is the one part of remission that does suck. I seem to always let myself get very sick before admitting that maybe it is not a cold, alergies, pneumonia, bra stap too tight, leaned on one knee too much etc etc. symptoms become quite muddled.

[Chris G]

What you're describing sounds a little scary - throat involvement always scares me. WG presenting symptoms are not always the same with each flare. Mine have been completely different this time around. I hope that you will see your GP tomorrow, if you can not get hold of your wg specialist.

[elephant]

You did the right thing by emailing the wegs specialist. Call your GP and get in to see him soon. Go to the ER if you get short of breath or anything that doesn't seem like a cold.

[marta]

Funny that you bring this up because I'm going through a similar situation right now. I've had this 'cold' for the last week and a half (almost two). I went to my GP doctor yesterday and told her that if it wasn't for the sore throat (which is sore and scratchy and a symptom many people around me are complaining about and something I haven't experienced with WG) and the fact that my hubby and daughter are also sick as well as half our town, I'd be freaking out. My symptoms are exactly the same feeling as the beginning of my last flare - other than the sore throat. I was driving home today thinking about how a simple cold now has the power to put the fear of Hades in me. Hope all is all good ChristIN and it turns out to be just a cold and goes away as suddenly as it came.

[flana]

The first time I got cold after 2 yrs of being dx'd, it kept me busy for about 5 - 6 weeks... it is now at the trailing end... however it was scary... now wegs symptoms, some infection that could not be diagnosed... sinus CT indicated cysts and polyps, but ENT indicated he saw that two years ago as well and was nothing new. CT of lungs was alos done, but nothing conclusive. Blood report is pending...

It seems rather difficult without any wg symptoms.

When a flare occurs post-remission, do the symptoms stay pretty much the same as during the 1st occurance? Someone who went through could certainly answer this...

[pberggren1]

For me all of the flares have been slightly different symptoms and severity than the initial onset.

Marta, is that Hades comes along again just use the Bat signal! :predrage::ohmy::predrage:

[chrisTIn@]

I like the description 'the fear of Hades', Marta. This cold indeed scared the hell out of me.:scared:
Today I feel slightly better, though.

My Wegs-specialist is absent at the moment, but the medical assistant answered my email.
She consulted the other Wegs-specialist/immunologist and said it might be wise to start with antibiotics after all.
I have a prescription here for clarythromycine, so I 'll ask my hubby to go to the pharmacy for me.

Thanks a lot for all your replies guys. :smile1:

[Sangye]

When a flare occurs post-remission, do the symptoms stay pretty much the same as during the 1st occurance? Someone who went through could certainly answer this...
For me, each flare has followed the exact same pattern as the original onset of disease. 100% predictable, and it's happened many times now. I think it's not the norm though, as many people say each flare is different. I'm not lucky that the Wegs barely stays contained, but I am very lucky that it isn't very yard to tell when it's waking up.

[pberggren1]

Christine, I have been on Clarithromycin sinc last August for my Mycobacterium Abscessus lung infection at 500mg 2xd. It is a nasty antibiotic as all are but your doc must think this is the best one to use. It is a bit pricey here. It costs me 8 dollars a month but without coverage it would cost 200.

[chrisTIn@]

The dose that you use (me too, at the moment) costs here about 60 dollars a month.
And all is covered by the insurance-company,
that's why no-one has any objections to prescribe it, I think.
But my doc told me earlier that this is a suitable antibiotic, in my case.
I never had it before, though...

Do you feel any nasty side-effects, Phil?

[pberggren1]

I don't think I have any bad side effects from it but then again I am on so many meds now it is hard to tell.

[chrisTIn@]

Yeah, must be difficult to tell whatever you feel comes from wich source, so to speak.
Thanks for the info anyway. :thumbup:

[chrisTIn@]

I consulted my GP, took another week of Clarithromycin and had a chest X-ray taken, to see if there is anything left in my lungs. My family-doctor listened with his stethoscope and thought he heard someting in my left lung. I 'm going to hear the results next week. Sure hope the infection stays away.
My nose and ears are clear, but my throat still is a bit 'scratchy'. I feel the urge to cough and clear my throat every once in a while.

Also I'm still kind of tired. Don't have a lot of energy... I wonder, could this still be a side-effect from the Clarithromycin? :sad:

Something else I would like to know...
Are there any figures known about how long people with Wegs can stay in symptomfree, unmedicated remission?
Anyone? :unsure::rolleyes1:

[pberggren1]

I forget Christine, did they do a culture to determine what type of bacteria you have? And did they do susceptibility testing to see which antibiotic will work the best?

I am still on Clarithromycin and will be until September probably. Did you not get to look at your cxr? I had one done yesterday and it looks somewhat better than back in feb. I still sound really congested a lot of the time. The antibiotic for sure will play a part in your loss of energy but the infection too will play a part.

I have heard of cases of Wegs where people have been 20 years or more with non meds and no symptoms.

[chrisTIn@]

...did they do a culture to determine what type of bacteria you have?





They did not. I'll ask my doc about it.
A remission of 20 years sounds good, but I doubt if I'm ever gonna make that. :sad:

[pberggren1]

They did not. I'll ask my doc about it.
A remission of 20 years sounds good, but I doubt if I'm ever gonna make that. :sad:

Never say never Christine. I was in remission for almost 3 years and almsot med free during that time.