new to community

[micheall]

I went solo the 1st 11 months of the 2 drug program and took 6 months of r+r before starting the 3 drug program before x-mas.I had no help like I have now with this blog.The side effects were scary those 11 months.My worst was the dry mouth at night.I senced a tickle inside my lips 4 times in 11 months.It would last about a week.Somehow during the night the inside of my lips would either get cut or a sore developed and because of the dry mouth,my lips would bond to my teeth.I got no help from my doctor,dentist or pharmacist.I came up with a treatment to rub candle wax on my teeth to prevent bonding.Now on the 3 drug program I will aggressively keep my teeth clean before bed and if I have to wear mouth guards on my teeth to prevent chewing at night.Has any one else experienced this?Also I have had bad anal problems.I found that eating fiber and keeping the anus clean with baby wipes and using Pramasome cream helps.The itching problem has been in my legs,so I keep them shaved.Sorry for those who experience head itch.I would think it is from dry scalp.I do find my hair is a lot more dirtier on these drugs.I have to shampoo often.I did come up with another idea to solve my night time dry mouth,I will acquire a clear plastic hose,drill a hole in the center to direct air down my throat,drill other holes for air intake,and strap this to my mouth at night.It beats taping my mouth shut at night.I tried dry mouth spray but only lasts about an hour.I was taking antibiotics for the mouth sores which helped,but I had to see another doctor.Help,I do not look forward to another outbreak of this.Thank you.

[micheall]

Thank you.I am going to purchase another.Hopefully the next one will be newer.I bought the 1st on Ebay,2nd on Amazon.

[willbb]

I have one of those chin strap type gizmos to wear at night to keep my mouth shut also..
.but my wife insists I wear it all day ...???

micheall:
what ever gets you thru tx..good luck..
Will

[micheall]

The strap has velcro adjustments which makes it comfortable.

[micheall]

I have a deviated septum.I keep a Holmes warm air humidifier in my room.I kept burning out the heater element.I called many times to Holmes and they finally told me not to use the unit on high.This can cause the element to overheat and burn out.The strap is elastic and can stretch to put the right tension so as not to restrain your mouth from opening in case you need to open your mouth at times.But the problem with elastic,it wears out.Evidently it is either old or defective.The fix is to cut it and sew in a good piece of elastic.It became comfortable after awhile.It beats having dry mouth.I looked at other chin straps on the market and they looked bulky(2 straps)and uncomfortable.Adjusting the tension of the strap so as not to have it too tight.This will allow you to breath somewhat through your mouth but enough tension to close it back up.It was worth a try for $8.

[1oftheclub222]

thx for the update, good to know..do you feel like you can breath ok with it?  I have sleep apnea, I don't use the CPAP cause I hate it with all my being, but also have bad allergies, always have a stuffy nose, wonder if it would be hard to breath only through my nose all night.

[micheall]

I did order and receive Dr Leonards cpap chin strap.It works.It keeps tension on your chin to keep your mouth closed.The down side is the elastic stretches out so I have to keep adjusting it once every night.A fix is to cut the strap and sew in a good piece of elastic.But the dry mouth at night is history.Follow this site;http://www.amazon.com/Dr-Leonards-CS004-Chin-Strap/dp/B003U76CCU/ref=sr_1_2?ie=UTF8&qid=1326737379&sr=8-2.

[nygirl7]

My mother had SJS.  She spent six months in the burn unit of a major hospital. Believe me nothing we get as side effects is as bad as that...absolutely no mouth ulcers or dry mouth is worse than that.

It still scares me to this day.

[micheall]

I looked up SJS.Causes

SJS is thought to arise from a disorder of the immune system.[3] The immune reaction can be triggered by infections, drugs, or medications. In some groups, drug reaction may be aggravated by genetic factors.
[edit]Infections
SJS can be caused by infections. It usually follows common infections such as herpes simplex virus, influenza, mumps, cat-scratch fever, histoplasmosis, Epstein-Barr virus, mycoplasma pneumoniae, or similar.
[edit]Medication/drugs
See also: List of SJS inducing substances
Although Stevens–Johnson Syndrome can be caused by viral infections, malignancies, or severe allergic reactions to medication, the leading cause appears to be the use of antibiotics and sulfa drugs.
SJS can be caused by adverse effects of drugs allopurinol (a.k.a. Aloprim), Zyloprim, Dilantin, Depakote, Levaquin, diclofenac, etravirine, isotretinoin (a.k.a. Accutane), fluconazole,[4] valdecoxib, sitagliptin, oseltamivir, penicillins, barbiturates, sulfonamides, phenytoin, azithromycin, oxcarbazepine, zonisamide, modafinil,[5] lamotrigine, nevirapine, pyrimethamine, ibuprofen,[6] ethosuximide, carbamazepine, nystatin, and gout medications.[7][8]
Medications that have traditionally been known to lead to SJS, erythema multiforme and toxic epidermal necrolysis include sulfonamides (antibiotics), penicillins (antibiotics), barbiturates (sedatives), lamotrigine, and phenytoin (e.g. Dilantin) (anticonvulsants). Combining lamotrigine with sodium valproate increases the risk of SJS.
Non-steroidal anti-inflammatory drugs are a rare cause of SJS in adults; the risk is higher for older patients, women and those initiating treatment.[2] Typically, the symptoms of drug-induced SJS arise within a week of starting the medication. People with systemic lupus erythematosus or HIV infections are more susceptible to drug-induced SJS.[3]
SJS may also be caused by cocaine use.[9]

[micheall]

You are right on the Stephens Johnson Syndrome,my hep dr stopped after the 1st time and my primary after the 2nd.But when you are suffering badly,my drs felt they had to be humane.I was told after a heated argument with hep dr that I will not get it on the 2nd treatment.That's why it is important to treat before the outbreak.And it is true that the amoxicillan did clear it up in 5 days.3 out of 3 are great odds don't you think.

[nygirl7]

I had extremely bad ulcers on treatment and wish that was the worst side effect of them all.   The interferon causes them and I just dont think that amoxicillan does anything to help except maybe psychosomatically.

I wouldn't advise people on triple to start taking antibiotics because there is always a vague small threat of Stephens Johnson Syndrome and that also can happen with antibiotics.  And that's no small 'side effect'.

and be careful of primary care doctors prescribing meds they are NOT heptologistt and most of them dont know HCV from their elbows they will not know the contraindications nor the consequences.

Just sayin'.

[micheall]

I did order the chin strap for $8.The same price of some of these sprays for dry mouth.When it arrives I will try it and let the community know of success or failure.I just need to stop breathing through my mouth at night.Dry mouth at night wakes me up and I have had 4 breakouts on the 11 month of 2 drug treatment of mouth sores or ulcers brought on by the drugs.I do not look forward to this during the new treatment.It starts out as an itch or tingling sensation in your lips that leads to lip sores or once I got severe chapped lips.On the 2 drug program,the 1st breakout my hep dr. perscribed amoxicillan.The 2nd 2 months later he refused.I went to my primary dr and got the same drug.The third time primary gave me amoxicillan again 2 months latter.All 3 times the amoxicillan cleared it up in 5 days.The 4th time I was refused.I was in so much pain especially at night I hated both drs.It is imperative that I avoid this during my new treatment.

[pooh55811]

On Incivek I was quite thirsty most of the time (even though I felt like my abdomen would explode from all of the water, lol) and I also drank water all night long. I had no problem doing this since I was up peeing every hour anyway. I had my little routine, sleep, wake up (on my own, no alarm), go to the bathrom, get a few swallows of water, go back to bed (for an hour or sometimes less), and then repeat the routine as soon as I woke up with the urge to go. I agree with Jasmine that I am less thirsty on plain SOC, but I am still drinking a lot and I am still somewhat thirsty all of the time.

I do think that one reason I felt crummier and totally exhausted on all three meds (besides the fact that Incivek has some side effects) is that I was not getting much sleep. Between the constant peeing and having to take the pills with a meal/high fat food, I was getting almost no real REM sleep. It would be one thing to take the Incivek quickly and with no fan fare, but to have to fix a high fat meal every time, well, that takes time to do so my sleep was interrupted for an hour at 6 am and then I never could get back to a decent sleep. In addition, I had to stay up until 10 pm to take the night dose. Things are much better on plain SOC.

So hang in there all of you on Incivek, it gets better after Incivek is done (at least for most, I think).

[JasmineT]

On incivek I drank water all night I was so patched, now on SOC it's a little better.  I found in the morning that a vitamin water helped, probably the electrolytes or something.

[orphanedhawk]

It isn't a problem for me because I fall back to sleep.
As long as I get my sleep I don't mind getting up, in fact I think it helps me deal with the dry mouth.
However, I don't wake every hour. That would be problematic.

BTW: I sleep best when I eat some cannabis brownie :)

[curiouslady1]

Have you considered the possibility that you have sleep apnea and are waking for other reasons than due to the medication?  Even if you do not have it, there are some cheap options like ordering chin strap to keep your mouth closed at night just like apnea patients must do.  You can also develop the habit of sleeping on your side and not on your back; preferably the left side to ease any problem with esophageal reflux at night.  The best thing to do is to get a sleep evaluation but if you cannot bring yourself to do that, these aforementioned options might help.  Good luck.

PS Thank you for posting about your contracting HepC through intercourse.  It is uncommon but possible and reinforces the need for others to practice safe sex and to consider treatment.

I am seriously concerned that, once I achieve SVR, I will have to worry about others who have a rather cavalier attitude about their communicability.  

[micheall]

Wouldn't you do anything to sleep all night?I am working on a solution to do just that.If I could just breath through my nose,I would sleep.But during the night My mouth opens,dries out and wakes me every hour.This stuff at the drug store is only good for an hour.Waste of money.I did order the chin strap.Will try it out and report my findings to the community.Thank you.MIKE

[orphanedhawk]

Hmm, well, I'm trying everything to combat dry mouth.
My dentist said the biotene gel is better to use at night.
By keeping water besides my bed, and guzzling it every time I awaken in the night, it forces me to get up, use the bathroom, and swish my mouth, again.

If you normally don't wake up during the night, how about setting an alarm?
You can change your habits. People don't like to change but we can do it.

[indy531]

Use Biotene-available at the drugstore!!!! Works!!!!

[dscj]

since i'm up most of the night, i keep a water bottle with a long straw that i actaully hold next to me (i mean directly against me) and drink as needed. its convenient.

[micheall]

These are temporary reliefs.I need something for 8 hours.

[jules2551]

".I did come up with another idea to solve my night time dry mouth,I will acquire a clear plastic hose,drill a hole in the center to direct air down my throat,drill other holes for air intake,and strap this to my mouth at night.It beats taping my mouth shut at night."

Sounds like a Hannibel Lechter contraption.  I need to be quiet there is no telling what I would try and build to relieve side effects!  I am thinking of inventing a bidet on ice for the anal fire and itching.

[micheall]

I did ask my hep c doctor,my primary care doctor,my dentist,and a couple of pharmacists.I got no solution from them.That"s when I realized i am on my own to solve the problem myself.When all else fails or there is no remedy,you will think of something to help yourself,no matter how it may appear,whatever helps can be beneficial to your comfort.

[gene53]

You just can't beat ingenuity like wolfbayne's  devise. ( although I haven't tried it myself ) maybe when the dry mouth gets real real bad!


Good Luck Micheall with tx!!!

[orphanedhawk]

Besides the biotene mouth wash, I have several products with xylitol in them~toothpaste, mints, gum, and a mouth spray.
All recommended by my dentist for dry mouth.
To find them online try searching  epic xylittol or carefree boost mouth spray.