Hello my riends I find myself confused and doc closedthe last time I treated I was on Pegysus Riba and a trial drug
This time Incivek, Pegintron and Rhibasphere As most told me Pegintron seems harder. Turns out the admin person got the pegasys preauthorized but the PA wrote it for Pegintron. I feel as if I am on a trial again In fact I have been told that when a new drug comes out they cant know all of the sx as it is no longer in controlled atmosphere. Seemed controlled to me.
I had set up delivery for my medication today I am down to last shot for Friday. Sat by the door from 8 to 4:30, either I or my husband. I dozed off for an hour, dozed off for the first time since Nov 28th whoo hoo, a positive!
I called Aetna told them we were still waiting. I was told that while Pegasys had been approved the prescription was for Pegintron and they could not deliver. Ok, to the question, can I switch to Pegasys after being on Pegintron since Sept 1st. I never thought I would end up being the big whiner, I was all about learning from all of you wonderful people and providing comfort at the level I was able, I do have the knowledge that Hector has provided(shout out) Will B, willing or Cando, Ev. Eureka, Streamline 569or Ficyclist, NYGirl7 and many people I can not remember in the midst of anxiety but you know I usually send individual thank you msgs, just can't do it now, oh Hrsewspr Carolyn really apprecite emotional support. I apologize I am very anxious. Can you switch from pegintron to pegasys? I will be doing shot 15th on Friday and no one is speaking to me
Thank all of you so much, I feel 85 right now and so confused alone and afraid would appreciate any response
Dee I did a lot of searching and could not find any info on switching.
Are they talking about switching in mid stream?
I was told by my nurse that they are the same. They are just manufactured by different companies. ??? NOT SURE IF THIS IS TRUE!!!
I sure wish I could help you more and I'm am very surprised I could not find anything on switching...I did how ever read where people had switched but the was a time period in between before switching over and because of relaspe from the pegintron.
Again sorry I couldn't be of better help to you Good luck hun in this, let me know what you find out. Well wishes.
Hello, I just slept for 3 hours! I am so very very happy
I have not been able to sleep well since finishing Incivek and sleep is finally coming back I am using Melatonin to help
Ok, I assume that the people did not know what they were doing, PegIntron is weight based and Pegysys is not.
The prescription was for pegintron but the cods office asked for preauthroization for Pegasys. So, Pegintron it will stay, I am not messing around with this stuff and will just have to wait for the doctors office to get it straight. The pharmacy said they could deliver by Friday if the doc's office makes the change. I think it will be fine. I am sorry I panicked (No caps this time ha ha) I have one injection left for this Friday so things will be fine. I am upset about the fact that the docs office (not him but maybe the PA or the office person) did not understand there was a difference?
Thank you all for answering. I can see that as I start to get a little sleep the panic goes down. I am sleep deprived right now
I hope everyone else is doing well
Read this Medication Guide before you start taking PEGASYS, and each time you get a refill. There may be new information. This information does not take the place of talking with your healthcare provider about your medical condition or your treatment."
"....Do not switch to another brand of interferon without talking to your healthcare provider."
MedlinePlus Trusted Health Information for You
A service of the U.S. National Library of Medicine
From the National Institutes of Health National Institutes of Health
"Only use the brand and type of interferon that your doctor prescribed. Do not use another brand of interferon or switch between peginterferon alfa-2a in vials and prefilled syringes without talking to your doctor. If you switch to a different brand or type of interferon, your dose may need to be changed."
Sounds like you worked it out, super. Don't apologize for the 'panic.' I had similar problems with deliveries first half of tx and my anxiety levels would go straight into geosynchronous orbit for a week. With so much at stake don't call it panic, call it intensely motivated hyper focused search and destroy, I'll burn your house down, where is my gd medicine people. Ok that's a bit unwieldy. IDK maybe it's just me, you might not be so polite. Anyway glad it's straightened out.
James your post made me laugh out loud. I was so upset to find out they preauthorized pegysys which I do not take but wrote the prescription for Pegintron which I am about to take the 15th shot. I was at the panic point of no return however I like your search and destroy it made me laugh.
I bet you guys are sick of me and my panic and anxiety. Even with all the side effects of Incivek, I was better emotionally when I was on it,
Normally I try to acknowledge and thank every person who answers my post, between my husband so sick and me on tx, I am too weak
Thank you all
shout out to Hector, you are the best!!!
CEECEE thank you
orphanedhawk thanks so much
susie thank you
Hi all I just heard back from doctor's office, not doctor clinical technician when I had to explain that while they had me authorized for Pegysys they wrote the prescription for Pegintron. She asked me what I wanted?!
I said the doctor wants me on Pegintron, that is what I have been taking.
I have one injection left, do you guys want me to quit? I know it is Xmas, I know people are on leave however I really would appreciate my meds.
So, I had to explain one is peginterferon A other b (short hand here, don't know technical. Then I asked if there was a doctor or a pa or a nurse.
This stress is unbearable. Sorry just wanted to let you know that I still have no conclusion
Also while I have been here for a couple of years the idea of a forum is still new territory to me. I guess I needed to read instructions. I have been accused of picking and choosing who I help. I come here I log in I go to Hep C or social and start reading, can someone tell me what I am doing wrong?
Again thanks for all of your posts, James I think you had the right idea the first time. Give me my gd meds, no I did not do that
I just dont think they are exactly the same thing Dee - I think they are both pegs but different chemical structures somehow (which is why PegIntron is usually assosicated to be harder than Pegasys as they are not identical). I hope the smart guys wake up and come online because I could be wrong but I would not switch if I did not have to. Usually the 'switch' is after one has failed tx and then they try the other peg on a different tx (this is in the days before PIs when we had more relapses as you know!). but I never heard of switching midstream and would think a nurse would know the answer to that.
Ooops just saw hectors post........I'm always a day late and a dollar short!
I think if something like this happens again you should tell the nurse hey just shut up and write the script the doctor wants me on bozo you aint no stinkin' doctor! ;^)
Dee, I just want to say I am praying that this stressful situation gets resolved for you....the last thing we need on this tx is stress...that is sure. I would be assertive and let the nurse know that this needs to be taken care of asap.
As far as anyone accusing you of picking and choosing who you help, that is just awful that anyone would say that...I find you one of the kindest people..you reached out to me when I first came online and I so appreciated that. don't sweat the small stuff or let the petty things get to you...number one is your health and your family. And you are a very special person that is a joy to hear from. Just hope you can get this all taken care of so you can truly enjoy this holiday that is creeping up sooo quickly...yikes! :-) Hugs to you, Anita
Thank you all so much you are too kind and orphaned hawk if your hair is like mine don't you dare touch it
I am at a loss speaking to admin people who think Pegintron and Pegysys are interchangeable and they are not. One is weight based, one is not, they have different molecules and work differently.l I only asked that dumb question because I did not understand what was going on. I do not get what is happening, I went to a Hepatologist and I think the admin people are running the office
I just called Aetna begged for help and they said they will call the nurse again, yeah except the "nurse" is a clinical technician.
Ok OH I am going to breathe deep and focus on kindness
I am going to "calm" down and simmer and cool
I am going to be like HCVJames above
@NYGirl7 thanks for having my back
Starshine, you are so sweet, I am exhausted, feel like I ran a marathon. Good thing I am not working, this tx is turning into a job
"I have been accused of picking and choosing who I help."
WHAT??? There are hundreds, if not thousands of posts. None of us are paid by MedHelp. In the beginning, you see a question that catches your eye, either because you have an answer that may be helpful, or because it is a question you may have yourself. As one accumulates "friends", it's only normal that we look out for those screen names, BUT does not mean we are not looking at other posts. Sometimes we have something to offer, sometimes we have something to learn, and other times, we might not have any interest -- based on the nature of the question -- not the person who wrote it. .......unless of course, they are a proven troublemaker.
Bless you Dee!! I am so sorry for what you are dealing with. I have nothing to add on that note. But you being accused of being too selective, can happen to any of us and really burns my britches!!
Hi Dee. I'm so sorry you're going thru this. I admire your ability to evern deal with this situation. I don't think I could right now. And I want to say, you've been very kind to me and I appreciate it. Treatment is a time to look after yourself first, and if you can help someone else fine, but, we have to be a little selfish when we go thru this. Some people click and some not so much. Maybe whoever accused you was having their own bad day.
Bless you beeblessed, I thought that was what I was supposed to do, exactly as you have said, I do the same
If I thought there was someone out there reaching out in pain needing help I would feel awful
I am here because I am sick going through my second tx. If ican, I help where I think I can, mainly just support and my experience
Thank you again, I find that typing is making me tired so I will have to stop my long winded detail oriented post (sigh of relief from the crowd) lol
Finally, late this afternoon after more than 10 phone calls today I am expecting delivery tomorrow of my meds
The pharmacy where I go is shutting down on Wed the 22nd so that was why I was panicking. I am unhappy with the doctors office as I feel I am managing my own care in the middle of an interferon haze
Again, thanks to all for your suggestions and support
Orphan Hawk, I have now pulled all my hair out, please save yours for your crises LOL
Hello, today UPS delivered my meds to my neighbor 4 buildings away.
Thank Goodness my neighbors all know me and they brought me my meds
In the tracking it said that it had been delivered to me and I signed
When neighbor came to door, I hugged her about 5 times.
Took my shot, feels like the first time, perhaps this pegintron is fresher?..kept on ice?
Thank you all very much, I am hoping this is my last crises
I've always wondered about the 'freshness' issue with PegIntron. Mine had to be flown from the specialty pharmacy in Florida to El Paso, then all day in the FedEx truck until I finally would get it around 5 in the afternoon. In the beginning I remember it being packed with BlueIce type chill packs, but later it came without and I was told it wasn't necessary.
I wonder too, first tow months picked up and they did not feel cold though they told me to refrigerate as soon as I got hom
This months came packed in ice. Thank you for your reply
I really appreciate everyone's support
Still very anxious after finishing Incivek however I slept last night!!!! maybe melatonin helped a little.
You are right to be unhappy with your doctor office. Tell them or at least don't miss an opportunity indicate your displeasure by asking how a similar situation could be avoided in the future, or use some other tact describing this near tx ending malf. Bring it up with your doctor, cuz the office staff has incentive to play down or not brief you doc on it.
Follow up with the shipping company. After all if the address is correct what are they doing delivering so far away and if the signature is your name someone forged it. I mean it could have been the driver. You don't have to burn the house down but you should make sure the complaint is registered on the off chance it does some good.
This is heavy stress stuff. It's not something we need to be going through but YOU did fight through the interferon fog, figure it all out, make the calls, and get the delivery in time. Job number one = done. Congrats.
I can't even imagine how anyone could complain about you picking and choosing - doesn't everyone? I never have enough energy to make it through all the posts, in fact, some days I don't even manage to get logged on at all. When I am on I read whatever grabs my attention before I run out of attention altogether. Sometimes it is a plaintive plea, other times it's a post by someone who I've particularly enjoyed reading in the past, other times it is entirely random.
I think your panic was a perfectly reasonable response to the drug situation! I really hope the docs work it out quickly for you. Curse the insurance company for not having authorized the entire course of tx when you were first started on it - that's really mean-spirited of them to require a new authorization in the first place. I'd be freaking out if mine was requiring that extra step. I'll keep my fingers crossed for you. Let us know how it works out.
You said "this tx is turning into a job" and yes, I completely agree and it is!! One of the most important jobs we will ever have...I made up my mind at the beginning of this treatment to dedicate all the power I have to getting this job done...and the pay is the ultimate goal...a life HCV free! Thank GOD that they finally got you your meds, Dee....stress is the last thing any of us need through this...Sure hope sleep comes easier to you now...sending you big hugs, Anita
Hello, it has been awhile however wanted to say that everything worked out. Thank you to everyone who responded to me, I have learned quite a bit since starting tx. I realized that this medication (Pegintron Riba) makes me more anxious than I ever thought possible and I have to try not to have this "knee jerk" reaction every time something goes wrong with the Doctors office. In my mind I keep thinking I did this in 2008, well I didn't it was a different combo of drugs.
I have to let it go and...... "BREATHE" These things are going to happen and all I can control is my reaction to it.
dee sure hope you are doing better- it was hell when i went thru it both times! i pray that by now the infrastructure is settled, and you can focus on fighting the battle.
God bless you and keep you calm. I had to take lots of pills for the anxiety, but it did help.
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