Throat Issues

[NikkiNicole]

I've been having a problem lately and I would like to bounce it off my fellow esteemed Weggies, if I may.

My throat hurts every day. It hurts like I'm fighting a cold but it never seems to progress from the throat pain to an actual cold. I have a scratchy voice 50% of the time to the point that people ask me "Are you sick?" and ... I can't sing anymore. My voice cracks and it feels like my throat is closing when I am singing. It's weird. Then, there's the lovely neck/jaw cramps when I am chewing even the softest of things.

This has been awhile with the throat pain and scratchy voice. I keep chalking it up to eventually getting a cold but ... with the increased joint pain that I am having I am a little worried.

There was a lapse in medication for at least a month as I switched from MTX to CellCept. I have a small dose right now until I do labs on Monday and then if everything checks out I will be going to the full dose of CellCept. Doc suggested a short taper of Prednisone but, I don't want to take that if I don't have to.

And yet, at the same time, I feel like things are slowly trickling downhill. I've never had throat issues like this before. Not to mention the joint pain is daily ... even on days where I don't walk a lot.

Seriously ... does anyone else have these throat things?

[Alysia]

Dear Nikki, I am sorry things are not getting better for you, and I apologize for not writing back to your threads here in the last months.
while I was smoldering I had constant sore throat. I checked for strep A. sometimes I had it and got antibiotics. sometimes not. you need to check it. but you should also consider that this might means wg activity together with the joints pains.. sorry. isn't it time to give you rtx, after so much suffering and useless meds ?

[NikkiNicole]

Thank you Alysia. I am waiting til my bloodwork results before I push harder. I get to raise the dose of CellCept to get to the full dose soon and I am hoping that helps. If not ... I'll be pushing for RTX again.

[drz]

Post nasal drip has affected my voice. People often asked if I had a cold or if I was sick.

[MikeG-2012]

I have a constant sore throat that is slowly going away. Mine is caused by the staff infection from my sinuses draining to the back of the throat, and accumulating there. ENT looked at it one morning and noticed a slight tonsillitis, and prescribed a 2 week course of antibiotic for the tonsillitis. Well, te major sore throat is gone, but the mild one persists.

Sounds gross, but the only thing that clears that particular crusting is to rinse my nose and let a little run out my mouth, then I sort it out the back side--trying not to snort it down too far, or else I gag, cough, throw up, etc. This is really the only sinus issue I have right now, finally!!

[im so blessed]

Hey Nikki! Missed u on here. I dont wanna be dramatic at all. But in my tracheal stenosis it was left go for about 9 months and chalked off as...pg hormones..allergy's ....dry air. When we finally thought to look for a stenosis there was so much scar tissue that balooning it was not an option and he had to just remove some scar tissue instead. We would have had a much better end result had we found it much sooner! Get to an ENT and be scoped...it will be worth it :)

[annekat]

Post nasal drip has affected my voice. People often asked if I had a cold or if I was sick. People are constantly asking me if I have a cold. That is one of the most annoying things, having to tell them I don't, that it is something else, and it is not contagious. Their next question is, "is it allergies, then?". I'm to the point of saying, "yeah, something like that", since allergies are an immune system response, and it is now allergy season where I live. I'm tired of trying to explain vasculitis or autoimmune conditions and getting a blank stare, especially to someone like a cashier in a store. What they need to know is that it's nothing contagious. Aside from that rant, I've been lucky enough not to have a sore throat through most of this. So, I'm sorry that people are dealing with that.

[NikkiNicole]

I am lucky enough now to have a raging sore throat and ... a kidney infection. The two are not related of course, unless they were both caused by my friend WG.
I did my check up labs today to see if I can bump up to the full dose of CellCept.
And ... I should have listened to the little voice and stayed home from work today.

[BookNut]

I do NOT have WEGS, but I have chronic sinusitis, which causes similar throat and nasal symptoms. As a result, I have a constant, slightly sore throat, and a hoarse voice. I too have lost my singing voice. Very frustrating, as I had looked forward to joining a choral group in my retiremwnt. Oh well...that ship has sailed. I can second the recommendations of nasal rinse. It does help. If you have a lot of post nasal drip, you might find guifenisen (Mucinex) to be helpful. If I find myself losing my sense of smell, I start taking it for a couple of weeks. If it gets especially bad, I have to take an antibiotic to combat the streptococcus aureus bacteria which also causes bronchitis. The constant post nasal drip causes my asthma to act up as well. I never had adthma till the sinusitis started up....so it is probably wise to get control of that to avoid lung involvement. Good Luck!!!

[Alysia]

I am lucky enough now to have a raging sore throat and ... a kidney infection. The two are not related of course, unless they were both caused by my friend WG.
I did my check up labs today to see if I can bump up to the full dose of CellCept.
And ... I should have listened to the little voice and stayed home from work today.

Dear Nikki, kidney infection is too serious. I am sorry. I think that you MUST rule out wg activity in the kidney. asap.

[annekat]

I do NOT have WEGS, but I have chronic sinusitis, which causes similar throat and nasal symptoms. As a result, I have a constant, slightly sore throat, and a hoarse voice. I too have lost my singing voice. Very frustrating, as I had looked forward to joining a choral group in my retiremwnt. Oh well...that ship has sailed. I can second the recommendations of nasal rinse. It does help. If you have a lot of post nasal drip, you might find guifenisen (Mucinex) to be helpful. If I find myself losing my sense of smell, I start taking it for a couple of weeks. If it gets especially bad, I have to take an antibiotic to combat the streptococcus aureus bacteria which also causes bronchitis. The constant post nasal drip causes my asthma to act up as well. I never had adthma till the sinusitis started up....so it is probably wise to get control of that to avoid lung involvement. Good Luck!!! That is interesting, Jacquie, that all of your throat and asthma problems seem to related to chronic sinusitis... if they could only deal with that, it would do you a world of good. I know you have discussed this in the past, including possible surgery, etc. I have found guaifenesin to be useful, too, took it in pill form for years to keep mucus flowing and more recently discovered how much the liquid version (not with DM) helps to loosen and eject phlegm caught in the windpipe, that has dripped down from the sinuses and collected there. I definitely could not sing for awhile, and now can at times, though not well enough to join a chorus. I still have the voice problems, sounding like I have a cold all the time, and figure it is with me for life. Oh, well, I'd rather sound low and husky than high and squeaky, I guess.

[annekat]

Dear Nikki, kidney infection is too serious. I am sorry. I think that you MUST rule out wg activity in the kidney. asap. I am wondering about this. I would think Nikki is getting regular blood work and kidney involvement from WG would be ruled out. I hope so. I haven't really heard of kidney infection on here and am wondering what the symptoms are, who else has had it, with or without WG involvement, and how it was detected, and whether or not testing for WG in that area could have happened at the same time. Guess I should do some research on the kidneys to have a clearer understanding of what can go wrong, with or without WG.

[drz]

I am wondering about this. I would think Nikki is getting regular blood work and kidney involvement from WG would be ruled out. I hope so. I haven't really heard of kidney infection on here and am wondering what the symptoms are, who else has had it, with or without WG involvement, and how it was detected, and whether or not testing for WG in that area could have happened at the same time. Guess I should do some research on the kidneys to have a clearer understanding of what can go wrong, with or without WG.

Bladder infections are pretty common so it seems a short step for it to move into the kidneys where it would be harder to treat.

[NikkiNicole]

I spoke with my regular doctor by phone today to report a little improvement in the kidney area but not much. We are staying the course on the antibiotics 4x a day right now which has presented some wonderful side effects, let me tell you. Anyway, she said being immunosuppressed makes us all highly susceptible to infection which we all know. She said what little bacteria must have been there and just went crazy because my body didn't put up the usual defense to stop it.
She is not worried about possible kidney involvement and she has a good knowledge of Wegener's herself.
I was brave and went and hiked like 4-5 miles today. I'm regretting that a little but it was nice to get outside, get some air, talk with friends and move my body.

[annekat]

Being able to hike 4-5 miles sounds like a really great thing. I haven't tried that in a long time. I'm glad you were able to do it and got the benefits you listed. Also glad to hear the kidney issue is not a Wegs involvement.

[drz]

Being able to hike 4-5 miles sounds like a really great thing. I haven't tried that in a long time. I'm glad you were able to do it and got the benefits you listed. Also glad to hear the kidney issue is not a Wegs involvement.

I enjoyed those longer hikes too years ago before the Wegs but would be fearful of trying one now. It is great though that some can still do it.

[Trucker 'E']

Watch kidney function, I just had my kidney removed a few months ago they said it was from cytoxin meds I use to take back in 06-2008. I do have sinus problems for last 3 years the neil med rinse works but still have crusting in left nasal and for my joint pain seems to get worse but I keep on blaming it on my weight roller-coaster that I have been on. Now I take Azathioprine Since my 2nd (not sure of spelling)Rytuximed injection last summer. My kidney was bleeding but other was good still.

[Debbie C]

Nikki make sure you take a probiotic while taking the antibiotic .It won't be so bad on your stomach. Glad you are out and about. When we get out from underneath all this snow,it will be hard to keep me indoors. Take care :)