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Thread: Sore Throat

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    Default Sore Throat

    Some of you who I am friends with on Facebook may already know all this information but ... here I am still with a massively sore throat almost 3 months since it began. It's getting more and more painful, and now sounds like I have something in my throat ... but ... nothing?

    I went to the ENT and he focused solely on my nose. Yes, the original reason for the referral was the reccurence of my bloody noses. But, that's not the main concern any longer and I said that from the beginning of the appointment.
    He looked in my nose, and checked my vocal cords since I said yes that I am sometimes hoarse when I speak. But, he just glanced in my throat and went about my nose again. I said "Hey, I also told the receptionist that I've been getting dizzy for several weeks as well and I wonder about my ears but he never looked in them. He said my nose is inflamed but that's common with Wegener's patients. OK, but my CRP markers were non existant on my blood work recently. So ... thanks DOC!
    Thankfully, I have an appointment with my rheumatologist on Wednesday afternoon. My throat is ... it's bright red, there's a huge hole (tonsil is actively trying to protect me from something), I struggle swallowing. I can swallow but I struggle because it hurts so damn bad. It feels like something is just hanging out back there and I try to clear my throat with no luck. I still get dizzy, feel like my ears are muffled, and generally feel awful all the time. I do go out and do stuff ... because I have been like this for weeks now and I am fearful of the days when I won't be able to. I've already started skipping workouts because of how I feel, and I gained weight because of that. So I ramped up my workouts this week ... but still, I feel myself wanting to stay home tonight instead of working out.
    The depression is creeping back in because I physically can't do things that I know I could do not that many weeks ago.
    Has anyone dealt w/ throat issues like this? Was it a bug/virus, etc? Or was it Weg's related? Because I am getting so frustrated with my throat.
    Officially Diagnosed 07/31/2013

    My blog: http://nikkinicolealison.com

    "It's no use going back to yesterday because I was a different person then" - Alice in Wonderland

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    Default Re: Sore Throat

    Sorry to hear about you situation. I can not believe how patient you have been to tolerate such a situation for so long. I learned long ago from my Wegs that when you have symptoms or know something is wrong you have to seek help till you find a doctor smart enough to tell you what is wrong or one willing to work hard enough to discover the cause of the problem and what needs to be done about it. Hearing what your symptoms aren't doesn't help much in terms of getting help to improve the situation. And some times you have to press them to tell you what is wrong or ask them to explain it again in terms you can understand and accept.

    All of my throat problems have been due to post nasal drip from damage to the sinuses or else inflammation from my GERD since the stomach acid irritates or burns my throat. Both are common problems with people with Wegs. I find frequent sinus rinses and taking generic Mucinex help with the problems caused by excess mucous from damaged sinuses but I still have excess coughing and clearing of throat from the mucous frequently which is part of the Legacy of having Wegs. I also take a double the max dose of Protonix for the GERD. The damage from GERD has resulted in two evaluations for stenosis but is was damage from GERD that caused the soreness and swelling and problems swallowing.

    I would be be actively seeking help from many other sources till I found some one to help make things better or at least give you some coherent explanation of what is wrong and what needs to be done about it. Best wishes for better help.
    Knowledge is power! Wisdom is using it to make good decisions!

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    Default Re: Sore Throat

    The ENT did say that he felt my throat could be sore from GERD. So I started taking the medication he told me to (prilosec, etc) and it isn't helping. Pain's only getting worse and feels more frontal of my throat. I would think I had Strep throat today if not for the lack of fever, etc. I feel like I am swallowing razor blades.
    My rheumatologist actually wanted to see me in person. We usually try to do most of our appointments via phone since she's far away from me. These appointments are usually for non-severe issues. If she hasn't "seen" me in awhile, I go see her in person. In this case, she's like "We need to actually be face to face". I'm just worried because RTX is usually my hero and saves me. I'm worried that she'll take that away since it may not have been so successful this time around (Thanks Nor-Cal Firestorm!). I'm worried about what other options I have. I can't take MTX as it just made me sick without any improvement, CellCept didn't make a difference, I cannot metabolize Imuran ... RTX was the next step and they still feel that Cytoxan is too "toxic" for me. They are worried about it causing more damage than good.
    I feel sort of backed into a corner with no way out right now.
    Officially Diagnosed 07/31/2013

    My blog: http://nikkinicolealison.com

    "It's no use going back to yesterday because I was a different person then" - Alice in Wonderland

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    Default Re: Sore Throat

    A single dose of Prilosec is the weakest med you can can take for GERD. I started with that years ago and worked my way up to the strongest one which is Protonix. That did not even control my GERD till I took double the recommended dosage. I had to appeal and get paperwork to get my insurance to pay for it since it is expensive. A few months after I survived my initial treatment for Wegs they rushed me back to the hospital thinking I had stenosis and was having a flare and needed RTX or some more aggressive treatment but their evaluation indicated it was inflammation caused by GERD since they had tried cutting back my Protonix to a single dose. I have to appeal each year to get approval for payment for the double dosage but it does help me control the damage from GERD most of the time. I also add Ranitidine PRN as needed to help manage the GERD.

    I tried going off Protonix again last year after I broke an ankle just walking down the hall since my Podiatrist thought my dosage of Protonix might also contribute to my fragile bones (along with my other meds for Wegs and diabetes) but despite trying every alternative again the symptoms returned so I went back to a double dosage of Protonix.

    A scoping of the throat should determine if you have GERD damage in your throat. I remember GERD inflammation was painful and did cause swelling too. Scoping was painless.

    I hope you get some good help soon so things improve quickly for you. Sorry you have so much discomfort
    Last edited by drz; 12-14-2017 at 05:21 PM. Reason: clarify post
    Knowledge is power! Wisdom is using it to make good decisions!

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    Default Re: Sore Throat

    Hi Nikki
    I also had some of the same issues with my throat whether it was sore or difficulty swallowing especially at night.
    1- I now stop eating at least 2 hours before I go to bed
    2 - I found that my food sensitivity/allergies have become worse. What I thought was a sore throat was a reaction to red grapes, plums, pomegranates. I can't remember what else but it came on overnight. my throat would bleed from re grapes and my upper lip would blister from plums ...go figure.
    3 - my biggest problem is that whenever I have a strange symptom happening it does not stick around long enough to figure out the why of what is happening so I just keep plugging along like you do knowing that if not today then tomorrow it will be something else. what to do???? Wish someone had the answer. Just keep writing and hopefully someone will

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    Default Re: Sore Throat

    I use Listerine throughout the day and at night during bathroom breaks.
    Whenever I feel that I'm coming down with a sore throat, I've often managed to stop them.

    Good luck.

    Ed.

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    Default Re: Sore Throat

    Nikki, so sorry you are getting so little help, maybe a different ENT, maybe your rheumy can suggest one, I know, all easier said than done. Gastroenterologists also deal with GERD, if that's what you have, and can do an endoscopy to see if there could be some ulcers in the esophagus from all the acid. That was the scenario with me in 2016, and the ulcers we're causing blood to show up in fecal samples. I was lucky to be referred by my PCP to the nicest gastroenterologist. He did the The endoscopy, confirmed the ulcers, and treatment for me was two 20mg. Prilosec per day, that's a double dose, indefinitely until the problem cleared up, and it did within a month or two. With GERD, the issues occur in the top of tour esophagus and spill into your throat, causing the burning sensation. Even if this isn't your problem, I hope you can find a more proactive doc who will listen and pay attention to what you are saying. Maybe even your PCP would have a better and more caring attitude to help you get to the bottom of what this is. Just my point of view and experience, and good advice was given by DRZ and others above. I really hope you can get some relief from this.

    Sent from my MotoE2(4G-LTE) using Tapatalk
    Anne, dx'ed April 2011

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    Default Re: Sore Throat

    I got to see the rheumatologist last Wednesday. She was amazing, as always. She wasn't happy with the notes the ENT put into the computer so she was confused as to his actual findings. So we talked and she wanted me to keep trying the reflux medications just so she can actively "rule that out" when moving foward.
    She then moved the computer in front of her, saying she was going to put up her "shield" while she suggested the next step: PREDNISONE. A small, taper dose. Nothing like I had to take back in the beginning. I knew it was coming, and I knew I wasn't willing to continue to suffer this way. I was miserable that day talking with her. Miserable as heck.
    She wanted me to try 20mg w/ a taper of Prednisone and Flonase. Hopefully, this will get us to infusion time for RTX because it does work. I just feel that it never had a chance to really get to working before the fires happened and my system was forced into overdrive. Long hours, a zillion days in a row, and extreme stress. She is almost certain this is a flare and my first major one ever. By "major" I mean, that I am back in the misery of the early days. I am still very lucky that I haven't had anything too terrible happen. I am on day 4 of the 20mg and the improvement is tremendous. I even got to workout on Saturday and it was a killer workout. I felt better than i had in a LONG time.
    Today? Not so much. But this is because I hardly slept last night. I am trying to just get through today and know that I will get some sleep tonight and be better. I know this.
    Hopefully, when I do my labs in the beginning of January, they will show some B-cells returning because that means I can do RTX as soon as I can get an appointment. It won't be 6 months until mid-February so I am not too optimistic that it will show B-cell activity but here's hoping, right? I want to be able to be completely back on the horse again.
    It's amazing how even the simple things in life are SO much better when you don't feel good. It really make you appreciate it.

    Officially Diagnosed 07/31/2013

    My blog: http://nikkinicolealison.com

    "It's no use going back to yesterday because I was a different person then" - Alice in Wonderland

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