Swollen Glands in Throat on Tx?

Question

Hello - I have had swollen glands in my throat now for about 5 weeks off and on.  At first they came for about three weeks and I had a minor sore throat.  I was treated for Thrush, but didn't help.  Then my GI wanted me to see an Infectious Disease doctor (b/c I'm a teacher and work w/ kids all day) to make sure I don't have an infection somewhere.  Well, he put me on Valtrex for a cold sore and said it could just be that virus acting up.  My glands got better for about a week.  

Then I finished my school year out, worked 5 days non-stop with the kids and they came back. When I lift up my chin you can see them pop out of the front of my throat (kind of like you get when you are about to get sick).  I've only had a low grade fever off and on (99.3) but I also had my shot on Thursday so could be that.  Has anyone experienced anything similar?  My doc said not to worry right now if I don't have a fever, but wants me to get back in with the infectious disease doctorn next week.  Couldn't it just be the interferon?

  Thanks for the input....this medicine feels so unpredictable and scary.  Only 14 more weeks......

Booo

booocooo · Answer

Hi Fret - No, I'm not on self-medication plan....that made me laugh :)  I decided myself that I can't do 1,000mg - actually my body decided for me - and my doctor agreed.  I'm in a funny situation b/c my doctor's wife is the Hep nurse, who practically handles all the Tx and confers with him on decisions.  She gave me her cell phone number, so we are in contact almost daily....kind of a unique situation.  I do want to give this my best shot, and I am a fighter, but I guess I just got to the point where I had to realize too much is too much, and my body weight is going against me here. :)  I admire you for learning so much prior to Tx....it's best to go into this knowing more :)

GSD - Thank you!  The dr. wants to leave my Peg. high, but if my glands are still swollen and my bloodwork hasn't come back, they might reduce it just this week to 135 (still at theraputic range for my weight).  This is all so scary, and I just hope it doesn't mess up my SVR - but who can ever really tell that?  :)  Best Wishes!

GSDgirl · Answer

The way I read it was that the doc dropped the riba to 800 and booo decided that is where she was gonna stay.  I also mentioned that I would NOT drop the peg.  I would still get the higher dose of riba in case someone on here needed it in a pinch, like I have read on a few posts (but that is just me) Hope your doc appt went well.

Denise

fretboard · Answer

Oh so sorry, I didn't even read your other post, I hope that penVK or whatever kind of antibiotic the doctor gave you has been helping you out.  I'm trying to pick up as much information as I can cause my appointment comes up soon.  To me, I don't understand the sore throat part at all.  Well I hope everything goes well for you.  God Bless

fretboard · Answer

Timeout!!  Are you just like on a self medication plan, does your doctor know that you dropped down to 800 on your Riba?  Please leave your Peg dose alone until you talk that over with your doctor, you are really starting to worry me.  It's your medication and it's your tx, but we do want this to work, right?  I hope you're feeling better, you may feel some sx's and you may feel alot of sx's.  The plan is never to lower your dose until it's comfy for you, you do actually need to talk to the doctor and you do need to be truthful with the doctor.   God Bless

GSDgirl · Answer

I was on the 180mg of pegasys the whole time and 800 riba.  Someone else on here might know more about dropping the peg dose but I wouldn't.  I think I lost weight but am up to 135 now, drats, don't want the weight.  I was UND at 12 weeks, don't know if I was sooner cause my gastro didn't check till then.  No procrit or anything else, I don't even know if I should have been on something, I was not monitered like most on this board.  It was worth it and I am just glad it is over.  

I hope it gets better for you

Denise

booocooo · Answer

Congrats on being UND post Tx.....Yay!  That makes it all worth it, doesn't it?  The doctors have had me on 1,000 Riba and 180mg Pegasys....way too much for my weight - I'm finding out by experience!  I now weigh 104 and they have been doing two days at 1,000 and one day at 800.  But after this last week - I feel like I can't even stand up I'm so dizzy, short of breath - I have dropped myself to 800 - FOR GOOD!!!!!  I was UND at week 4, so I'm crossing my fingers that 800 does the trick.  I'm even curious about reducing my Peg to 135 for the last 14 weeks of Tx.  

Being 115 pounds, did you lose more weight?  Did they have to pump you full of Procrit too?  My body is just taking this really hard!  Hopefully it gets better :)

Booo :)

GSDgirl · Answer

I hope everything went well at the docs.  How much Riba do they have you on?  Just curious because I weighed 115 and they had me on the 800mg dose.  So far so good with me that is.  I am und at 3 months post TX

Denise

booocooo · Answer

Fretboard -  Thank you for the "bump."  I'm off to see a specialist today about the glands. I agree with you that SOC is TOO HIGH for some people - like me who weigh 104 pounds.  They had to stop my Riba last night and this morning b/c I could barely stand up I was so dizzy.....so yes, it makes sense to Tx at a lower dose 800mg to avoid these ups and downs.  I know that I am not in control of all this and I truly believe that I will be healed, but just getting there is tough!

Geterdone - That's so great that you mentioned Thyroid disorder, because last week my hemotologist said the same thing since my hands and feet feel like ice blocks.  I'm third generation TSH but have never had a problem.  I will ask the infectious disease doctor today to check for that.  Hopefully we can figure this out soon!

Thanks for the posts - I can't tell you what  relief it is to have other human contact with people who UNDERSTAND!

Booo :)

geterdone · Answer

Booocooo,

You may want to ask your doc to have a Thyroid test the next time you have blood work done. The symptoms you are describing sound pretty close to what I went through from about week 10 to week 20 with the bouncing in and out of sore throats and swollen glands at the base of the throat. The Interferon is the main culprit of thyroid disorder while treating. Hope you feel better soon.

jasper

fretboard · Answer

I hope you're feeling better already, just out of curiosity has your doctor tx'ed a difficult case such as yours?  I know off the bat that I can't assist you as far as giving you any kind of advice b/c like I said I haven't tx'ed yet.  I posted a question awhile back about the current SOC being too much for some ppl.  Unfortunately I didn't take my time and it came out incorrectly and was squashed.  You resemble the kind of situation that I was thinking of when I posted that question.  I was just thinking about your pain, and your whole situation.  If nothing else, this will bump you to the top.  Hugs and prayers for you.  God Bless

fretboard · Answer

Well, I hope you start feeling better soon, "at what point does one take matters into their own hands"?  That is like the $25,000.00 question that obviously I can't touch b/c I still have alot to learn, and I am a geno 1.  However, being as tiny as you are and the sx's that you are facing I hope someone chimes in with a very good answer for you.  You do have a very tough situation especially since your insurance seems to do things in such a non-sensical matter.  I think I just made that word up, I truly pray you get some relief soon.  God Bless

booocooo · Answer

Thank you!  I woke up again today and they are still swollen.  I took two motrin and they made me able to swallow at least for the time being :)  My whites are down to 1.5 as of last week, so I wonder if I need to drop my Inf. down from 180 - 135?  I'm just so mad that they don't do weight-based b/c today I'm at 104lbs (8 pounds down in 10 weeks...YUCK!).  I know 800mg Riba would be enough for me, especially since I was UND at week 4 and Geno 3 - those are great odds!  At what point does one take matters into their own hands?  How much suffering first?  :)

Thanks!
Booo
Happy Sunday!

JennyPenny · Answer

Have you had a white count and an ANC count checked? The inf lowers those counts and if they get too low you can get an infection. The first thing "to go" when the counts are too low is the mouth. I am going through it right now. My glands are huge and my gums are red, swollen and very painful. I hope you feel better soon.

fretboard · Answer

Works for me, sure made me laugh.  My mind works by making little pictures sometimes, so I pictured all these little kids with sticky fingers and runny noses.  LOL

merryBe · Answer

hey, anyday I can gross someone out is a day not entirely wasted!!!!

fretboard · Answer

Dang!! You've been really taking your tx hard as far as fighting off those sx's. I haven't tx'ed yet, but I hope things calm down for you. Glad the valtrex helped you out and even more glad your dad is a dentist, cause I had a dentist completely freak on me when I told them I had HepC. Sounds to me like yet another sx, and please keep in mind that I haven't tx'ed yet. Good luck with your ongoing tx and controlling those sx's, your procrit/insurance situation is ridiculous. Here's something funny, "Children transfer their mucosa to everything they touch, and if you touch what they have, and then your mouth, then whatever they are carrying just got into you". Gross LOL, merryBe surely has a way with words. God Bless

booocooo · Answer

Thank you!  I've been sitting here hoping someone would respond!  I just feel so scared b/c they say that infections can creep up on you.  I've been flossing daily and brushing at least three times, so hopefully it's not a dental thing.  (Good thing my dad's a dentist!)

I will get my blood checked Monday and I'll ask about the Vitamin D.  Hopefully this "calms" down on it's own.   Thanks again!

BOOO

merryBe · Answer

could be the INF, or a host of things. Mine have also acted up. I think the dental thing is really important. I'm getting cleaned 3-4 times a year now...while on INF mouth care will keep a whole host of infections from getting going in your mouth and throat.

Have your blood checked to make sure you have enough vitamin D. Very important for throat health. Only take it if you need it, and never too much as to much can hurt the liver. If you lack this vitamin however you will be likely to get strep throat, pink eye and night blindness. Vit A and D both are protectants that keep many bacterium from overgrowth (like strep) or getting a foor hold, like pink eye.

since you are exposed to children always, your attention to good throat health will save you from many infections.
Its also important you keep your hands away from your mouth always, and wash them often. Children transfer their mucosa to everything they touch, and if you touch what they have, and then your mouth, then whatever they are carrying just got into you.
mb