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| stan1 5/9/2004 | . | has anyone else had problems with swelling, redness, inflammation, burning, itching, etc. of your lips and inner mouth lining while on peg+copeg? i had this reaction about 7 years ago while trying alpha-interferon+ribavirin. it built up steadily over a 10 day period after my first shot and grew to be so bothersome that i withdrew from treatment after the 10 days. by that time, my lips were swollen to well over twice normal size and were crimson red and extraordinarily sensitive. fissures and splits had developed and i couldn't talk normally, eat normally, yawn, brush my teeth properly, or do anything that involved stretching the mouth the slighest bit -- all flexibility had been lost. after 7 years without even attempting treatment, i'm now taking peg+copeg and started 14 days ago -- the same phenomenon is occurring, though not quite as severe (yet) -- it seems to be building gradually in intensity. i'm keeping vaseline slathered all over my lips at all times and am being very careful about moving my mouth only in a very narrow range of motion to prevent sudden worsening of splits. it's still very rough going though -- the nurse practitioner who's treating me suggested taking an antihistamine to help suppress the burning and itching sensations and that may be helping a bit but it does nothing for the extreme swelling and redness -- she said i could try a otc NSAID to try to bring down the inflammation, though she wasn't sure that it would address the root cause of this type of inflammation. years ago after i dropped the meds i went to a dermatologist who gave me powerful topical cortisteroids to apply to the lips several times daily and it helped control the problem somewhat until the drugs were flushed out of my system. they aren't the types of ointments you want to use regularly though, as they cause tissue atrophy, suppress healing, and have a rebound effect when they wear off. sorry this is kind of long, but please offer some advice if you have it -- the nurse doesn't have any more suggestions and i feel like the problem is on its way to spiraling out of control. if you have any comments about whether or not an NSAID would reduce this type of iflammation, please comment -- a pharmacist was skeptical that they would do anything and i have allergies to aspirin and *might* have had a milder reaction to an otc NSAID years ago that didn't involve the anaphalyxis (definitely spelled wrong) that i get from aspirin. i don't mind trying one if it has a shot at working, but if it's most likely going to be worthless, i'm not going to risk a reaction. speaking of allergies, the nurse doesn't think i'm allergic to the peg or copeg and she doesn't think these symptoms are the result of an allergic reaction to either of the hep meds. i don't know how she determines that, but she seems sure. thanks again, waiting for feedback -- are there any other boards like this you can link me to? this one seems to be closed to new questions most of the time. stan1 |
| cuteus 5/9/2004 C2 | . | this board allows about 6 questions daily and if someone clicks on post a question and changes his mind it still counts and the day is down to 5. I find most questions get thru after 9 am ET. You can always post a question within a thread, we all do. Just type something in comment regarding your question. I like this board the best, but there are many others. I did have the loss of lip stretchability for a while, but it did go away. the sides would crack and open, I used vit e oil all the time, There was some burning on the tongue, but mostly when I ate spicy/tangy stuff. Yogurt helped that. given the fact that some here had severe mouth sores, my experience would not be considered severe at all. Right now is swollen red eyelids, which Atarax helped. This tx will give you some discomfort, some more severe than others, in my case, it did not persist forever. GL in your decision |
| stan1 5/9/2004 C3 | . | hi -- thanks for your quick responses already -- i'm starting to understand more about the board now -- i fear that i've created a newbie "boo-boo" by posting a 2nd question under a different header -- this apparently has the potential to nose someone else out, so i'll make sure to group everything under one post next time.....hopefully i'm not compounding the error now by commenting on my own post which might push this thread toward the "comment limit".....i still have to figure that out. anyway, thanks for your kindness and sorry about the double post -- i have to run now, but i'll be back (posting conservatively of course ;-) take care, stan1 |
| cuteus 5/9/2004 C4 | stan | lol ..no one wil spank you., the forum doesnt explain these things to the newbies so we have to do it. Hey! at least you learned on a slow day... |
| debbiedo 5/9/2004 C6 | Stan | Welcome to this wonderful forum of very loving heppers......Deb |
| Showboat 5/10/2004 C7 | STAN | Welcome aboard!!! Hey, I think almost everyone of us has gone thru the "newbie posting experiment". Do not feel bad. I think it is part of the "initiation". You are now a member :>0 Seriously, I hope all is well and good luck to you. |
| Showboat 5/10/2004 C8 | STAN | Welcome aboard!!! Hey, I think almost everyone of us has gone thru the "newbie posting experiment". Do not feel bad. I think it is part of the "initiation". You are now a member :>0 Seriously, I hope all is well and good luck to you. |
| doll face 5/10/2004 C9 | Stan/ new mouth side | Stan first of all welcome to the family. Don't worry about the posting two times. There are alot of new people here lately and the basic guidelines haven't been posted in a while now. Anyways- This is my second time on tx and never had any problems with my mouth at all till about a month ago except dry mouth at night. Now the tip of my tounge is SO sensitive, I can't have any spicy foods at all and anything to sugary or salty will hurt it. I have no other problems with mouth sores or anything. Is it just your lips that are hurting or inside your mouth also. for dry mouth I have learned that "biotene dry mouth" is a big help. You can find a lot of thier products ( including toothpaste, mouth wash and all mouth care products)in the tooth paste section of most drug stores. Good luck and I hope you find relief soon. |
| stan1 5/11/2004 C10 | Everyone new issue | thanks for everyone's comments and recommendations -- to answer your question, dollface, i do have swelling and discomfort inside the mouth. the mucous membranes which line my cheeks and all around that area are puffed up and iritated, and my tongue is red and sore with cracks that run along the sides (painful!). the nurse has an rx i can get for a "magic mouthwash" which i believe has mylanta liquid, lidocaine, and benadryl liquid. she told me a cheaper alternative would be to swish with some mylanta liquid several times daily. it's an antacid preparation, and i don't know exacly what it does inside the mouth (as opposed to swallowing it), but apparently this nurse recommends it a lot. i don't know what can be done for the lips at this point, and i'm just keeping tons of vaseline on them in an attempt to enhance flexibility. the swelling seems to have a mind of its own. i'm trying to eat one enormous meal a day as opposed to the two or three i used to eat. i'm still consuming the same number of calories, and maintaining weight, it's just that eating is so irritating to the lips i particular that i only ravage them once a day. i'll admit that i'm a salty/spicy food addict and toning that down would help, but i just can't do it. breaking off to another question, which hopefully won't get buried, does everyone take their ribavirin with food? the manufacturer's insert states that bioavailibilty is increased by 66% when taken with a high fat meal, and other parameters (don't have the figures handy) indicated that much more ribavirin is made available this way. my nurse told me that just having it with a glass of milk would work fine (which is all i've been doing with the morning dose) but after reading the insert i'm wondering if i'm shortchanging myself and wasting a good portion of the ribavirin. i've even taken it on an empty stomach sometimes (gasp!). could i get some comments regarding how you guys take this stuff, and how important the food/high fat issue is? thanks again stan |
| honey15637 5/11/2004 C11 | Stan | Sorry to hear you are having so many problems with mouth/lip and know it must be awful trying to eat etc...Hope you get a much needed break soon. I try to always take my riba with something either cereal in morning and usually take other dose about 9 at night and usually with yogurt or even a few crackers. One time...I skipped the food and took and my stomach was burning and hurting all through the night so found it works better for me with food. | [Thread closed to new comments] |
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