Aa
Am I forgetting anything?
Well, I got the meds yesterday. BIG box with all kinds of stuff, they even included an ice pack, tylenol, and bandaids. I go to the doctor today to learn how to do the injection (UGH) and I guess I will start tomorrow. I feel like I am being sentenced to torture for 6 months, but I think because of all the information I have gathered from the people on this site that I am pretty well prepared.
So, I have a list of all of the things I need: Magic mouthwash, anti itch cream, nasal spray, cough drops, and lots of water. Anything else I should have on hand? I plan to make this as easy on myself as possible and am trying to convince myself that it really won't be that bad. I could be one of the lucky ones right?
I actually was hedging a bit a couple of weeks ago, my viral load dropped and blood work improved on its own, but the monster is still inside me. Since I have had it for probably 30 years, I know it is not going away on its own.
One thing I have a question about is what to eat with meds. I read some suggested high fat content?
Any additional advice is greatly appreciated.
Lauren
So, I have a list of all of the things I need: Magic mouthwash, anti itch cream, nasal spray, cough drops, and lots of water. Anything else I should have on hand? I plan to make this as easy on myself as possible and am trying to convince myself that it really won't be that bad. I could be one of the lucky ones right?
I actually was hedging a bit a couple of weeks ago, my viral load dropped and blood work improved on its own, but the monster is still inside me. Since I have had it for probably 30 years, I know it is not going away on its own.
One thing I have a question about is what to eat with meds. I read some suggested high fat content?
Any additional advice is greatly appreciated.
Lauren
xenigma - new sheets is a great idea. Didn't think of that one. I live in Hawaii so I usually have to worry about being hot instead of cold. I know, boohoo for me:)
mr liver - I'll be sure to stay under the palms:) I've got SPF 54, so good to go with that one.
whoaisme - hadn't heard about chewing gum, but that makes total sense. Cheaper than magic mouthwash too! Someone recommended triamcinolone accetonide which is a dental paste. I think the mouth sores are one of my biggest worries because they sound so yuck:(
rita- now I am a little freaked about the rash. I sooo feel for you! that must be horrible. I know I must drink lots of water, have a really good moisturizer to slather on and already have some hydrocortisone(sp?) cream. I will be on the lookout for bumps!
First shot last night. So far so good. Nothing but a little headache and minor aches. One day at a time!
Thanks everyone!
mr liver - I'll be sure to stay under the palms:) I've got SPF 54, so good to go with that one.
whoaisme - hadn't heard about chewing gum, but that makes total sense. Cheaper than magic mouthwash too! Someone recommended triamcinolone accetonide which is a dental paste. I think the mouth sores are one of my biggest worries because they sound so yuck:(
rita- now I am a little freaked about the rash. I sooo feel for you! that must be horrible. I know I must drink lots of water, have a really good moisturizer to slather on and already have some hydrocortisone(sp?) cream. I will be on the lookout for bumps!
First shot last night. So far so good. Nothing but a little headache and minor aches. One day at a time!
Thanks everyone!
Also, I'm not sure if anyone has mentioned this yet but a definite
buy for tx is some new pj's.
Something comfortable and if you live where you have a cold winter
something warm.
1000 thread count new sheets I bought also.
buy for tx is some new pj's.
Something comfortable and if you live where you have a cold winter
something warm.
1000 thread count new sheets I bought also.
It's soap for babies and even comes in lavender.
You can buy the bars or the liquid.
Johnson and Johnson
http://www.johnsonsbaby.com/index.do
makes it as does
Baby Magic
You can also buy a store brand.
I also like Yardley of London soap.
You can buy the bars or the liquid.
Johnson and Johnson
http://www.johnsonsbaby.com/index.do
makes it as does
Baby Magic
You can also buy a store brand.
I also like Yardley of London soap.
If you aren't already aware of the possible dangers of sun exposure while on tx be sure to have some SPF-35 on hand. Riba can cause photosensitive conditions such as a bad rash, blisters, sunburns, and nausea. You may have to restrict yourself to laying in the shadows of a palm while at the beach for awhile. And as always be sure to look up first and make sure it has been pruned. ;)
Mr Liver
Mr Liver
By "baby soap" do you mean Ivory or something else? I have been thinking of trying something other than our usual shower soap Caress. Thanks.
Pilgrim
Pilgrim
the treatment can, doesn't always, dry out your mouth, hence the reason for the biotene or magic mouthwash..my hubby's doctor recommended chewing a lot of Orbit gum to keep the salivia flowing.. drinking lots of water is key, you may find that drinking water also lessens the side effects that some people complain of. Yes, you may be one of the lucky ones, with little sides.. It does happen!!
Take the riba with something toleratable and with a little fat..you may find things like granola bars/ cereal bars do the trick. Good luck to you and stay in touch
Su
Take the riba with something toleratable and with a little fat..you may find things like granola bars/ cereal bars do the trick. Good luck to you and stay in touch
Su
I agree not buy too much at first, You may develope some sides but not all.
I had the mouth sore thing on and off for about three months. Magic mouth wash numbs it but doesnt really make it go away.
The rash for me is horrible, i have scabs or open sores everywhere NOTHING HAS WORKED. and i have tried everything. prescription and over the counter.
Advil is good to have on hand. and i also take 2 advil pm to sleep the night of my shot.
For me eating anything i can is what i eat. I have already lost about 25lbs so i just try and eat anything,
WATER thats the one thing I do not drink enough of and I know it would help with the dry skin and the rash, and overall feeling better.
Again those are just my sides, like i said dont buy too much all at once, and perhaps your sides will be better, Sometimes the more you know, the worse it is for you. i came in a bit blind, and then i would get a side post it here and know that it was normal.
Good luck to all of you newbies!! You can do this!!!
peace
rita
I had the mouth sore thing on and off for about three months. Magic mouth wash numbs it but doesnt really make it go away.
The rash for me is horrible, i have scabs or open sores everywhere NOTHING HAS WORKED. and i have tried everything. prescription and over the counter.
Advil is good to have on hand. and i also take 2 advil pm to sleep the night of my shot.
For me eating anything i can is what i eat. I have already lost about 25lbs so i just try and eat anything,
WATER thats the one thing I do not drink enough of and I know it would help with the dry skin and the rash, and overall feeling better.
Again those are just my sides, like i said dont buy too much all at once, and perhaps your sides will be better, Sometimes the more you know, the worse it is for you. i came in a bit blind, and then i would get a side post it here and know that it was normal.
Good luck to all of you newbies!! You can do this!!!
peace
rita
I never really had mouth sores but i used Biotene toothpaste and mouthwash from the start. Not sure, but that may of had something to do with being OK with the mouth sores
as I used it as a prophylactic before any sores/pain happened.
Personally I didn't like the Gold Bond - http://www.goldbond.com/- (Teal bottle red cap)
I found that coco-butter/shea butter was better for me and baby oil was good too.
Cetaphil -http://www.cetaphil.com/-is also good instead of soap or baby soap was good too. As tx goes on you may find you need other things but I would wait and see how it goes before running out and buying lot's of stuff.
As for eating -especially in the morn was hard for me. I ate out of the freezer -pancakes, french toast, english muffins, bagels and butter, yogurt or smoothies, sometimes ice cream or pudding. Riba never bothered my tummy. (I even took it a couple of times on an empty stomach and I was OK)
Good luck with your tx...
enigma
as I used it as a prophylactic before any sores/pain happened.
Personally I didn't like the Gold Bond - http://www.goldbond.com/- (Teal bottle red cap)
I found that coco-butter/shea butter was better for me and baby oil was good too.
Cetaphil -http://www.cetaphil.com/-is also good instead of soap or baby soap was good too. As tx goes on you may find you need other things but I would wait and see how it goes before running out and buying lot's of stuff.
As for eating -especially in the morn was hard for me. I ate out of the freezer -pancakes, french toast, english muffins, bagels and butter, yogurt or smoothies, sometimes ice cream or pudding. Riba never bothered my tummy. (I even took it a couple of times on an empty stomach and I was OK)
Good luck with your tx...
enigma
At the risk of being shouted down I'm going to tell you my recent experience with tongue sores, even I find it a bit unbelievable but here goes...
Firstly I only started getting them in my 4th month of tx and I never got on them on my 1st tx (I'm on my 2nd tx). I have tried everything, Biotene, more water, lubricating mouth sprays, anesthetizing mouth gels and so on. Nothing seemed to work so I just accepted that I had them and that I would live with the discomfort.
Last week I went to my dentist for a regular check up and clean. He has been advocating rinsing my mouth out daily with Sodium Hypochlorite as he says it's the best antibacterial, anti viral solution around. I have been somewhat dubious.
Anyway, out of curiosity I decided to try it before I went to bed. A teaspoon of Sodium Hypochlorite in a cup of warm water. I rinsed and swished for about 90seconds. It didn't taste too bad, a bit like being in a chlorinated swimming pool. I did it and forgot about it....
The next morning I was getting breakfast organized and my lovely husband asked how I was feeling and how was my mouth? Well!!! I realized that all the sore spots on my tongue were gone AND when I looked at my tongue in the mirror it was a normal colour, rather than the blotchy red patches all over it!! Wow!!
At first I didn't relate it to rinsing my mouth in Sodium Hypochlorite (I'd forgotten I'd done that) and just thought that, in the mysterious way of tx, they had just gone away!! So I carried on my day.
By the end of the day my mouth hurt like all heII again and I remembered the rinse so, I decided to try it again before I went to bed, with the same result the next morning!!
At the moment I am trying to rinse with the solution every night before bed, but I am a little inconsistent. However, the times I DO remember to do it are the times that my mouth doesn't hurt the next day.
So I don't know, is it coincidence or cause and effect? But it seems to work and I am going to continue on with this experiment. And considering you can buy 4 litres of Sodium Hypochlorite for about $2 and those fancy mouthwashes that DIDN'T work for me are about 5 x that price and more, what have I got to lose?!
I will now put my seat belt on and wait for people to tell me I'm mad!!!
Firstly I only started getting them in my 4th month of tx and I never got on them on my 1st tx (I'm on my 2nd tx). I have tried everything, Biotene, more water, lubricating mouth sprays, anesthetizing mouth gels and so on. Nothing seemed to work so I just accepted that I had them and that I would live with the discomfort.
Last week I went to my dentist for a regular check up and clean. He has been advocating rinsing my mouth out daily with Sodium Hypochlorite as he says it's the best antibacterial, anti viral solution around. I have been somewhat dubious.
Anyway, out of curiosity I decided to try it before I went to bed. A teaspoon of Sodium Hypochlorite in a cup of warm water. I rinsed and swished for about 90seconds. It didn't taste too bad, a bit like being in a chlorinated swimming pool. I did it and forgot about it....
The next morning I was getting breakfast organized and my lovely husband asked how I was feeling and how was my mouth? Well!!! I realized that all the sore spots on my tongue were gone AND when I looked at my tongue in the mirror it was a normal colour, rather than the blotchy red patches all over it!! Wow!!
At first I didn't relate it to rinsing my mouth in Sodium Hypochlorite (I'd forgotten I'd done that) and just thought that, in the mysterious way of tx, they had just gone away!! So I carried on my day.
By the end of the day my mouth hurt like all heII again and I remembered the rinse so, I decided to try it again before I went to bed, with the same result the next morning!!
At the moment I am trying to rinse with the solution every night before bed, but I am a little inconsistent. However, the times I DO remember to do it are the times that my mouth doesn't hurt the next day.
So I don't know, is it coincidence or cause and effect? But it seems to work and I am going to continue on with this experiment. And considering you can buy 4 litres of Sodium Hypochlorite for about $2 and those fancy mouthwashes that DIDN'T work for me are about 5 x that price and more, what have I got to lose?!
I will now put my seat belt on and wait for people to tell me I'm mad!!!
Ichou – Do you exercise? That's one other thing it's good to be armed with. If you do exercise, it's good to have a solid regimen in place when you start the medication. If you don't, it might be a little harder to start if you experience difficult side effects. But there no question that being active, even if it's little more than walking around the block, reduces side effects and increases energy.
Good luck
(The other thing I've needed to get through treatment is gallons of maple syrup, but everyone's food peculiarities are different. You can't know what you're going to want to eat until you get there.)
Good luck
(The other thing I've needed to get through treatment is gallons of maple syrup, but everyone's food peculiarities are different. You can't know what you're going to want to eat until you get there.)
I woke up with some bumps on my tongue and a few hours later they were mysteiously gone. Strange.
Most times when we are taught how to inject you do it right then in front of the NP in the office so I'm curious to know whether you did or not.
Anyway, I totally agree not to project. You might not need half of the things on your list so don't waste the money. And stuff like the tongue bumps don't happen to most people and they aren't urgent anyway so if they DID you could always get stuff. I had them horribly and nothing worked on them and I probably spent a fortune.
The one thing I would make sure you have is a good body lotion to moisturize with. Not only are we dying of dehydration during treatment (ice pops are GREAT for that) but our skin gets the dreadful rashes, it helps if you can proactively just try to use a moisturizer on it (and it is good for you anyway). I wish I had known to because by the time I had the rash it scarred me for life (all that itching ugh).
BEST of luck, remember drink water and get copies of all of your test results!
Anyway, I totally agree not to project. You might not need half of the things on your list so don't waste the money. And stuff like the tongue bumps don't happen to most people and they aren't urgent anyway so if they DID you could always get stuff. I had them horribly and nothing worked on them and I probably spent a fortune.
The one thing I would make sure you have is a good body lotion to moisturize with. Not only are we dying of dehydration during treatment (ice pops are GREAT for that) but our skin gets the dreadful rashes, it helps if you can proactively just try to use a moisturizer on it (and it is good for you anyway). I wish I had known to because by the time I had the rash it scarred me for life (all that itching ugh).
BEST of luck, remember drink water and get copies of all of your test results!
Hi Linda,
Yeah, mine is Pegasys too. The magic mouthwash I have heard mentioned on here many times. It seems mouth sores are a common sx and this is what is recommended. I asked my doctor about pretty much everything I could think of and he also said he would prescribe it as well.
I think I will wait until I buy some of this though as it can be pricey, and as cando said I may not need any of it. I am just trying to be ready for what ever comes.
Thanks for the encouragement, and good luck to you as well.
How was your first shot?
Lauren
Yeah, mine is Pegasys too. The magic mouthwash I have heard mentioned on here many times. It seems mouth sores are a common sx and this is what is recommended. I asked my doctor about pretty much everything I could think of and he also said he would prescribe it as well.
I think I will wait until I buy some of this though as it can be pricey, and as cando said I may not need any of it. I am just trying to be ready for what ever comes.
Thanks for the encouragement, and good luck to you as well.
How was your first shot?
Lauren
Hi Lauren,
I started treatment last Friday, I'm going on my second shot tomorrow. So far all I've needed is water and lots of it and Advil/Tylenol. By the way, what is Magic Mouth Wash?
For what it's worth, I got a similar package with my meds too, thought everyone did, maybe it's the brand, I'm taking Pegasys.
Good luck, it sounds like your pretty well prepared.
Linda
I started treatment last Friday, I'm going on my second shot tomorrow. So far all I've needed is water and lots of it and Advil/Tylenol. By the way, what is Magic Mouth Wash?
For what it's worth, I got a similar package with my meds too, thought everyone did, maybe it's the brand, I'm taking Pegasys.
Good luck, it sounds like your pretty well prepared.
Linda
My very best friend is water and my next best friend is my heating under blanket. It has saved my life many times!
Marcia
Marcia
lauren....So, I have a list of all of the things I need: Magic mouthwash, anti itch cream, nasal spray, cough drops, and lots of water.
-------------------------------
Besides the water i wouldn't spend alot on things, good chance you might not need them. tylenol and water was about all i needed. Good luck going forward
cando
-------------------------------
Besides the water i wouldn't spend alot on things, good chance you might not need them. tylenol and water was about all i needed. Good luck going forward
cando
Make sure you have the re-fill process figured out. You need to make sure that you always have an adequate supply of meds on hand (maybe 2 weeks) so that any delays or unforeseen speed bumps don't disrupt adherence to the med schedule. Get a pet rock so you're not so alone during the long weeks of treatment.
You must have some pretty good insurance to have gotten that box of assorted goodies with your meds. Sounds like your pretty well on your way.Not sure exactly what magic mouthwash is..haha.
I wouldn't limit myself to only eating foods with high fat content..but from what I gathered on here, it is best to eat high fat content when eating meds, because more of the medication gets absorbed into your body.
Some days can be hell, and others aren't so bad. I just try to focus on the long run, meaning that I am hoping that the end of 6 months will find me Hep Free.
The people on this site(for the most part) are very helpful and always glad to answer any questions.
I wouldn't limit myself to only eating foods with high fat content..but from what I gathered on here, it is best to eat high fat content when eating meds, because more of the medication gets absorbed into your body.
Some days can be hell, and others aren't so bad. I just try to focus on the long run, meaning that I am hoping that the end of 6 months will find me Hep Free.
The people on this site(for the most part) are very helpful and always glad to answer any questions.
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