Hi ..good to see you posting again. I remember when you did your first post, made decision to to tx and here you are at week 34. Good for you. If I remember right, your sx have been minimal up to this point, I will never forget waiting for your post after first shot. You did great! Hang in there and remember how far you have come.
Glad to hear you are better after that week. Things should start getting a little better as we go along. I felt pretty good yesterday. Cooked two meals and did laundry. I was amazed; not complaining, I rather enjoyed the day.
I like seeing the newest ones post. So, just jump in there as beagle has stated; your questions will be answered soon.
So glad to hear that your sides are still minimal. I don't post too much anymore but still pop in to check on how everyone is doing. Hopefully your sides will stay this way, many people do have minimal sides, but we don't usually hear too much from them as they don't need as much support, so it is important that those of you that are having a fairly easy time with sides continue to post so that the newbies can see that not everypone is going to be bad off. Good luck to you.
As dollface said it would be great to hear from those who have little or no side effects. The side effects have a tendency to worry me. I am not sure if I should hole up or go about my life. If anything would deterr me from treatment it would be the side effects. Ah, the pre treatment jitters! My treatment start date is Feb. 17th, and oh boy am I not looking forward to it.
Lat36, thanks for giving me advice on how to do the first injection. For some reason having to stick myself is causing me real concern. I am such a 'woose'. I found a video that showed how to do the injection on the pegasys site. The size of the screen is so small that it is hard to see what they are doing. I think I will have the doctor show me how to do it.
Hey where have you guys been lately too! Unless I'm whacked out (which is probable) I haven't seen either of you around~!
this is great so many people posting again!
Anise - I was PETRIFIED about having to do the shots myself. I came on here begging for advice and comfort I really didn't think I could do it. Now, 20 weeks later it's just no big deal and I'm actually PROUD that I can do it in some sick way!
After the first shot you will see that it's really not that hard to do. The best advice I can give you is close your eyes, count to three and jab! Once it's in it's no big deal...it's getting over that initial paranoia!
And don't waste time thinking about the sides - don't plan on your life being any different EXCEPT make sure now you pamper yourself MUCH MORE Than you ever did before...you DESERVE IT. Ask anybody...I've declared day after shot day "rest day" and I sit on the bed with the remote and eat ice cream and take care of MYSELF (of course while taking care of the kids) but I make a point to REST REST REST as much as I can. It makes such a huge difference!
Please don't say you didn't make it, you might be surprised. How long have you been done with tx? Is Dobbs Ferry on the NY and Pa. boarder? I have family in Milford and thought I remembered seeing Dobbs Ferry.
I think it's human nature to feel "you didn't make it" when stopping tx, especially given your long tx history plus the fact you're not feeling well. However, I don't believe I've ever heard of a correlation between viral load and end of treatment symtomology.
Everyone reacts differently to drug withdrawal -- physically and mentally -- and hopefully that's all it is. Some report feeling miserable for a year or even longer after stopping.
We may have different opinions as to the correct treatment length, but given your extension, I have really no doubt you made it.
My Dad start his first tx this friday. I don't know if this is common or not after his first shot he didn't sleep at all. I am worried could you please give me some advice. also what to expect.please
I'm so sorry your going through this, like anise and forseegood said is there a Dr. you can call that will help you, or another Dr. that you can see.
About the rash-- here's something that has helped many here with their riba rash and myself, it's GOLD BOND - TRIPLE ACTION LOTION--the yellow bottle is regular strength and then there's the green bottle which is extra strenght, that's the one I use. Put it on after you shower, when you go to bed, when ever you need it, in a few days you'll see a big differents in the rash. I hope this helps.
Nygirl, thanks for the warm welcome back and advice about the needle injection! I haven't posted much lately, but suspect I will be posting more since I will be going on treatment. By the way, did it hurt when you did your first injectiont? Did you jab fast or just push it in? Did you inject in your stomach or thigh?
Friole, I did get a package from my doctor. They gave me a video, I don't have a video player only a CD player. I asked the doctor for a CD and she said they don't have them. That is why I went on the pegasys site.
Thank you both for the comfort regarding the sides. I am thinking the worst, and by that I mean if I will go blind or get diabetes ( which runs in my family). Yes, I worry about the most complicated sides :)
Gee Ina, all I can do is hope and pray that you begin to feel relief soon...I have talked to so many that felt terrible post tx, and they were convinced that it would not go away, pain has a way of convincing you more than anything else can...and after a time, the sides did go away and they were relieved...even if you don't clear, and it's not clear to me exactly what is going on there, I know you have helped your liver...do you have access to a pain clinic? or stronger meds? please let us know what is going on with you, wish you the best....
I know a guy from Janis who had a rather severe case of mental impairment from tx...he didn't come on the boards because he could hardly think to type...this went on for 3 years, he said the only way he got through it is going to the woods and meditating among the trees, etc. He went on disability...he was pretty much convinced that he had incurred permanent brain damage...then after 3 years he started getting clearer and clearer and now he is fine...I just think that every one is different and people can get some bad post sides, but they usually clear up mostly sooner than later...I wish this for you.....
Oh boy....that doesn't sound like fun having residual side effects last that long! I have one friend who said not to go on the treatment because he still feels bad after a year. Hopefully, this will not happen to me, as that is one of my fears.
Eisbein, I am so sorry you are going through that much pain. Like Forseegood said, can you contact a doctor to have them help you out. It isn't fair that anyone should go through that much torture. You deserve much better than that.
When I started on Pegasys my doctor gave me a Pegasys Starter kit which included the video, an am/pm pill box for the Riba, a little travel kit for carrying doses,a Sharps container and some other things. You could ask your doctor if he has those.
I watched that video and felt so confident that I told the doctor's nurse I thought I could skip her lesson on injecting. Lo and behold, I had a green pharmacist who couldn't read the prescription and gave me the vials instead of the prefills. Now that was a true learning nightmare. Now I can do it during a commercial (week 29).
We all worry about the sx and which ones we will have. I cannot believe the range and difference in how this tx affects each person. Truth is, you just won't know until you start. You gearup for the worst, then perhaps you will find out it is not so bad.
for those of you out there that know tex mikel and haven't been to delphi lately I thought you may want to know that I got an email this morning saying he's in surgery, they got him a liver..I haven't heard anything else, when I know more I will post it...
You can find the lotion in any drug store, even Walmart has it that's where I bought it, cheaper. Try to get the green bottle it's stronger. This works great, NY girl got it at Christmas and before that nothing else worked.
too bad you are so far accross the land, girl, or I would drive over and give you a hug, if it didn't make you itch too much. 3-4 days to go for the negative...do go for pain meds though, maybe accupuncture? DO cold or hot compresses help? If you are close to the Pacific, maybe a ride over, on a nice day, can bring some serenity and distraction? Let me know what name you sign on with at skype, ok? I know! you need to come over and feast on canolis! that would do it!
take care, and be good to you, don't torture Ina with so many negative thoughts...
I know, that's so great about Tex Mike! I chat with him on the phone once in awhile, the absolute nicest guy, I have been hoping and praying for him to get a liver, I'm soooo happy!!!!he's suffered so much...his wife and kids are probably worried but elated at the prospect...another guy there got a liver as well, I don't know if you know Gary, he's doing much, much better...things do work out for the best sometimes....
regarding Mikel, it appears some rumors are flying and there are 3 different stories going around whether he is in the hospital or not...so, I am not sure if the email info I got is accurate, now I am hearing he is in hotel waiting for a new liver, who knows...more delphi drama maybe lol sorry bout that..
Hi, I'm sorry, looks like your post got missed.
There's a lot to say about what to expect. I'm not sure if other's here had any problem sleeping on the first shot. I know it usually makes me tired. but everyone is different. Also do you know what your Dad's genotype, grade, stage, and Viral Load are. You might want to out that in a post. There may only be a few posts left in this thread. I'm going to put paste your post in one with more room. So scroll up til you see your name.
Hang in there's a lot of help here even if specific questions don't always have a straightforward answer.
I honestly don't know what's going on with him...Silvia sent me an email saying he was in surgery having his tx, then I go to the delphi forums and there is all kinds of chatter going on there that he was still waiting and not in the hospital, like I said to cutues up above, who knows what is really going on...I guess I shouldn't listen to things unless I absolutoly know for sure what's going on...
Your grandson is adorable, you are going to have a blast with him and I agree with you, red is sexy hehehe
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