Hi I am a RN that works for a pharmacy. My job is to go into pt homes and teach them how to self-inject Pegasys and review side effects of the Hep C meds they will be taking. Most of my patients are on triple therapy. My job is supposed to end there, but I just can't do that. I would like to know from the people that are on therapy some info you wish you would have known prior to starting therapy and how you deal with your side effects. I want to provide my patients with as much information as I possibly can and I figure the real experts are current or past patients. I know how difficult it is to get through to a Dr's office to ask simple questions so I give all of my patients my home and cell numbers to reach me 24/7. I started this job in January and I follow-up every two weeks with all of my patients. The majority do not have internet access so I was wanting to put together something like a pamphlet with helpful information, especially for the few that are too afraid to ask or think that their question is "stupid". I would truly appreciate any information you provide.
Wow, all my literature came from the manufacturers (Incivek & Riba). I got the coolest case, disposal box for the syringes, pill box, journal and a bunch of other stuff. There was a handout of the body to show where all you do the shots and a place next to it to keep track. It encourages site rotation so you don't administer the shots the same place.
Honestly, the majority of my literature that came with my meds contains the info I discover when I post questions or research the Internet. I get you are a nurse but putting together your own pamphlet independent of all the customary literature and documentation that comes with the meds seems dicey. Oy. Think I will leave this one alone since I am not sure what to say.
Having said that, as an RN you could offer lots of support that's not in the literature. If I could call someone with your knowledge base I probably would be stalking you.
This is a sweet thought. I will be interested to know what you come up with.
my nurse came to the house to show me how to inject, she called a couple of times and I called her a couple of times, but she knew nothing about the side effects and she is a rep for incevik as well. Havent heard from her since.
I would like to have known what kinds of things I should have on hand, should I need them.
It has been suggested by others here to shop for heavy items prior to starting treatment. Things like big bags of dog food and kitty litter, because nobody wants to carry heavy stuff after starting treatment. :)
Then the things to help with side effects. Gold Bond, Biotene, cases of water, etc.
But I think you may already be providing the one thing most seem to need. Your PHONE NUMBER! Many have posted at midnight on the Friday of a long weekend with a question that needs to be answered right away. Sometimes just "should I go to the ER?", people aren't sure. The answer is usually "YES!" but sometimes we need permission to do something like visit the ER, for some reason...
It's nurses like her that P*ss me off!! Actually the reason I am so supportive is the nurse in the doctor's office is a horrible person and treats all hep C patients in a way that no one deserves to be treated. Come to think of it she is rude and mean to everyone.
Well thank God for this forum. I've been around for about 8 months now and if I hadn't read all of these posts about sx I would have no clue. So I am getting ready to start tx and my bathroom cabinets are full of stuff just in case. I don't want to be caught in the act without the appropriate rescue drug. Maybe it would be a good idea for these pharmacies to take a survey on side effects in which would help the RN's just doing their job...showing us how to give ourselves shots. It's not the RN's fault, it's the drug maker and the pharmacies. I am sure when the Hep C numbers balloon through the roof things will change. Time is change and I am sorry for your experiences.
Thank you. There is so much information that I think a patient needs provided that sometimes slips through the cracks. The nurses in the doctors offices don't have time (they should though) to answer all questions or even offer emotional support. I am hoping to fill that gap somehow.
I have spent hours on the telephone with various patients. I just received my telephone bill and was on the phone 157 minutes with one lady. I knew she needed someone to talk to. I think that is a lot of what is wrong with healthcare today. You have the nurses that truly care but have 70 patients a day and doesn't have the time to provide patients with info needed or you have the nurses that could care less about anyone except the person that signs the paycheck.
I actually keep a log of all of my telephone calls and what side effects or other problems they are having. I have only been doing this for a few months so I have no patients that have completed therapy yet. The tips about going shopping for heavy items now and stocking up on is exactly what I am looking for, the simple things that I may forget to tell them. I would say 90% of my patients do not have internet access so they can't research this on their own. I already have tried to provide them with terms and terminology they may encounter while at the Dr office. A lot of my patients are uneducated and are too embarrassed to ask the doctor to use terms they understand.
Migranes / light sensitivity- Used Maxalt as it did not interact with the Boceprevir, Interfuron and Ribivirin. I also used a cold compress over my eyes, or wore sunglasses all the time to block out light. I even worked full time during TX, and I just wore sunglasses in my office.
Rash - Aveno Oatmeal baths did wonders!
Dry skin - Vitamin E oil & heavy - frangrance free creams helped my skin.
Nausea - Prescription Zofran as needed, also gingerale helped, and a lot of water, and I made sure to eat enough with each dose of pills, that really helped too.
Abnoraml CBC - My doctor had me injecting neupogen to boost my neutrophil count, but I wish I would have been able to avoid that drug too. I also tried to eat an iron rich diet, although my hemoglobin and iron saturation levels were still extremely low. I tried to juic a lot to get vitamins through fruits and veggies. I alos stayed away from too many public places filled with germs, and steared clear of anyone with cold or flu.
Anxiety - I walked a lot, and took it easy when I wasn't working. I also asked for support from loved ones.
Anger - It was only from thr meds, I kept reminding myself that.
Hair loss- I swear Nioxin brand shampoo and Conditioner helped keep my hair from shedding too much, it still shedded a lot in the end and after, but it seemed to help.
Fever - Tylenol, ibu profin & rest
Insomnia - I took 1 tylenol or motrin PM tablet each night. Most nights, here was no need to taker 2, as directed on the bottle.
Well, bless your heart for doing this. I had the great support of the forum, my doctor and her nurse but someone coming to see me, now that is precious. You can search this forum for past post relating to certain side effects, concerns or just ask and we will jump on and help. Take them water if they can not get out, it helps. Lots.
Actually, I had an RN call me once a week or so courtesy of the special order Pharmacy I used the first time I treated. It was a little awkward and at first but I was only taking Peg/Riba back then and had no where near the serious side effects I had with the Incivek. Plus, I had Internet access. The PI's are a real game changer and I would have taken advantage of that feature had it been available with the pharmacy I use now.
From what I have seen, the potential for skin problems and the bowel movement problems are a real risk patients need to be prepared for but the anemia seems to throw everyone off their game. I have two large animal livestock herding dogs and I stocked up on dog food thanks to a post I read. I can manage carrying it now but I thank Heaven I was covered the first 12-weeks.
I think what you are doing is great. You have no idea how much of a difference you are making in these people's lives. Well, maybe you do but Good for you♫
Would definitely provide this site, for those with Internet access
Stock up if you can and be prepared, when a symptom like nausea or insomnia hits, its hard to get to the store at odd hours
As permitted by your doctor Benedryl, Hydrocortisone cream, Tylenol, Imodium, Melatonin to help with sleep if it becomes a problem, makes you really tired the next day though, also hear it's better to take the RIBA earlier as it impairs sleep ( I take at 5am and 5pm)
Omega 3 supplements, helps with brain fog, Vitamin D
Ginger ale or better, ginger chews which are easier to carry with you, help with the nausea, used the ginger chews often the first few weeks and occasionally throughout, easy to carry some in your purse
Genteel eye drops, mild to moderate, my eyes dried up so fast, get 2, I was so glad I had this the first weekend
Some vitamin water or Gateraide to upt some electrolytes back in now and then
Nioxin shampoo and conditioner and biotin supplements for hair, not sure any of these work but they didn't hurt
tp, paper towels, green cleaning supplies (fumes too much for me), non perishable food or other staples so you dont need to run to the store often
Pill cases if they don't come with the meds from the pharmacy, morning, afternoon, and evening or whatever fits your pill schedule, it's hard to remember if you took your pills without this
If you are on incivek, you need fats with the pills and you must take the pills on time so:
Individual packs of nuts you can carry with you. South beach diet NUT-rition by planters are sold in boxes at the grocery store. Good for a quick snack when you need your meds and easy to carry some with you. 22 grams of fat.
Almond or peanut butter
Bagel and cream cheese
Cheese, hard salami, and multigrain bread make a good fat lunch
Ice cream bars, the rich stuff has more fat
It's hard to eat 20 grams of fat so suggest looking for what works for you at the grocery. Your tastes will change on tx. Go to the grocery store before you start, don't plan on going anywhere for a couple days if possible. At least avoid unnecessary trips.
Gold bond, i used ultimate soothing but i hear others swear by the green medicated, started slapping this on a month before tx and during, twice a day, in hopes to avoid rash, did well
I saw someone posted on this site that vertex has a new recommendation for lotion pre tx, you should look for it
Tucks, you know it when you need it, sold by the hemorrhoid section
All free and clear laundry detergent, dove soap,
Coconut oil for scalp if you start itching there, olive oil for dry hair
Set timers for the pill feedings
Stress that the virus can adapt if you do not take the incivek on time and there is no do over
Think it's great you are trying to help. Wishing you the best.
when you start getting chapped lips with little cuts, i use tinactin and aquaphor. my study nurse said it's a fungus so treat it with tinactin. it really works. also try to at least walk, it helps with sx. if you lay around you'll get achy. believe me it works. it's really kind of you to do what you're doing for the patients. bless you. belle
Thank you for being so conscientious. Your idea and commitment are awesome and I really loved the way many of the replies just put out all that terrific practical information. It is true-you can learn so much from the people who are going or have been through it.
Bless you for taking your job to the highest standard and level of care.
Your more challenged patients actually have a shot at getting through this thanks to you!
Thank you for your wonderful responses. I'm just doing what I feel is right. As most of you all know, people with Hep dx are treated like second class citizens by the majority of healthcare workers they encounter. I don't see how they sleep at night and wish they would get out and get a job not working with people. To me this is no different than educating a pt on diabetes or any disease. This disease is also personal to me, after I started this job my daughter was diagnosed with Hep C, she also has Crohns disease.
Okay, well...I would say, for the ones on triple tx with Teleprivir, to be careful about anal problems, and wash with a mild soap, after a bowel movement, if they have burning/itching....I rly think Ivory soap, and warm water works better then a Tucks medicated pad, or baby-wipe.
For people on Triple tx, with Boceprivir, the annoying side effect is dysgeusia....a horribly bitter taste in ones' mouth, after taking the 4 big red and yellow pills. So what I do is: eat a thick yogurt before I pop it, and then have a meal with it, and also, to combat the nausea, I eat small meals thru-out the day, to avoid ever having an empty stomach (full of Boceprivir and Ribavirin) So I use bananas, and I heat a tortilla, and put peanut-butter on it, sliiced apple, etc.
I also had anxiety when I first started out, and night-mares...then the occasional RAGE, and as I became more anemic, I cried alot. So, I really try to eat healthy foods, like eggs for breakfast, to pump up my nutrition.
I had to take a "rescue med" for my early onset hemolytic anemia, which is a shot called Procrit. It is causing me joint pain and sore muscles.....I havent taken any analgesics for this, because they also cause me to cramp up.
All these sx tend to rove around, come and go, and then new ones start up. It's a long road, and not an easy one. Having a nice RN makes all the difference, believe me!
Oh, whoops...I forgot one more thing: some people find a special mouth-wash called "Biotene" soothing, for mouth and tongue sores. Patients should brush their teeth after every meal, because Interferon is hard on the teeth,and I think the bitter tast in my mouth also made things worse. I finally had to go to a Health-Food Store, and purchase an ounce of Golden-Seal Powder, for my teeth, which tasted of decay. I add a bit of warm water to the Golden-Seal powder, and brush it on my painful gums, and use that as a natural antibiotic. This works well, but tastes terrible also! I had originally tried using Pennicillin VK for the sore tooth/gum (a crown) but it didn't seem to work at all~
My treatment nurse, when I went through TX, and my wife's present treatment nurse, who are one and the same, has you come to his office to do your first shot. He walks you through the procedure and then you do your first shot there yourself, in front of him. He sends you away after with a kit containing reading materials, a water bottle, an ice pack to keep your interferon cold if you're travelling, and a sharps container to dispose of used syringes. You come back to discuss your TX every other week at first and then once a month later on during TX. The TX nurse is part of my hepatologist's team. My side effects back then were really mild. My wife is just starting her TX. Her appointment with the TX nurse is tomorrow. Wish her luck.
....I rly think Ivory soap, and warm water works better then a Tucks medicated pad, or baby-wipe.
From someone who did incivek for 12 wks, I tried soap and showering right after each bowel movement, it was impractical and seemed to dry out the area and make the itching worse, name brand baby wipes with aloe and tucks pads is what got me through it, just my personal expirience
Well, soap can be harsh and dry out the skin, that's true. I'm actually not sure what to use, to moisturize that perineum, front and back....I have noticed alot of skin products have goats milk in them, so I went out and bought some plain whole goats milk...was gonna apply "down there" before bed, if I continue to have irritation. Ahhh, the fun never ends...of course, I'm Bocep, which is a little easier on the skin, then the Incivek
Joke: Why is California like a cereal? Becuz it's full of fruits, flakes and nuts....(and plain goats' milk yogurt : D)
In dealing with sensitive skin, oatmeal based products are good. I also found labels inside my shirts were very annoying. Cut them out or wear them inside out.
Silk and soft cotton are easiest on sensitive skin.
Because of tx is so hard on our bones, Vitamin D supplements and calcium, especially for women of a certain age, are helpful.
There's the dry mouth remedies, biotene and xylitol products as well.
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