The doctor's indifference

[disengof]

I received a Pegasys and Ribovirin yesterday from special pharmacy. I tried to schedule an appointment with my clinic’s pharmacist in advance to make sure to start the treatment as soon as I can. But the doctor told me that time to wait until I factually receive the medicine. OK. So, I called yesterday to let her know that I got the medications. She scheduled an appointment to next Thursday even though I asked her last time to schedule at least to next Monday. I called her back to remind about my wish, but she remained adamant. I called to my insurance company to advice whether or not should a doctor to benefit a patient in the first turn in such case. They agreed with me that there is no reason now to delay the start of treatment for one more week. Generally, I don't feel any care about me from my doctor. I have not received any medication to support my liver although I have cirrhosis (I didn't feel anything before). The doctor and his clinic's stuff seem just indifferent to my health condition and I don't have any suggestions from them about a diet and so on. Now I feel some kind of swelling in the liver area on the right hand but they told me it is because of Hepatitis C. I don't like this doctor, but probably, it is not a proper time to find another one just because I have to start treating. I have a PPO Blue Cross Blue Shield Plan. It might be someone have suggestion what should I do with this issue or is able to suggest me some better doctor in Chicago, IL.
Thanks

[alagirl]

It's not a good idea to just start taking a lot of herbs and supplements during treatment without first checking them all out with your treating physician.

[dalmat]

There are loads of herbal medicines that are liver supportive. Whether you take conventional treatment or not its a good idea to find a good herbologist and get those herbs.You need someone who can tell you what to take and how much so don't just buy something without proffessional advice.  Diet is also important so look for advice on that and watch what you eat.

[IMstacie]

I waited a few wks before starting, using the advice from this forum.  I was sure glad I did.  I receive "one-month" supplies and the first 4 months were difficult because of insurance authorizations and prescriptions.  A couple times I almost ran out.   I now order my meds when I have 3 injections left andI tell them I have one injection left.

[disengof]

Thanks to all of you guys. I really worry about treatment especially after I read the instructions to Pegasys and Rybovirin - it's scary. However, it is not good time to "change the horse on the crossing," so I had better wait to see how it will be. Thanks again. I let you know about my perceptions in a couple weeks.

[Marcia2202]

In my experience the real low after taking my injection was a few days later. I would actually get a kick from the injection. I did my injections on Tuesdays and was actually feeling worst on the weekend. I was also on Pegasys. It seems that people on Pegintron would feel the worst on injection days and a few days following. So maybe it IS a good idea to do it on a Thursday, as you would feel worse on Sat/Sunday.

We had some long discussions about this a few months ago and if I remember correctly we came to this conclusion. So that might be a good thing too.

[FlGuy]

Several insurers use 'specialty pharmacies', that are more likely phone/mail order situations. It's more economical for them.  I used Aetna's Specialty Pharmacy.  Generally speaking, they have processes for refills; either automatic or phone-initiated.  Having received your initial supply, they probably sent refill instructions with the meds.  As you proceed it's a good idea to 'play along' with the process to make sure that you never have a med gap. Some insurance companies may also want a progress report (in terms of lab results) from the doc along the way.  Make sure you know all the silly hoops that you need to jump through.

[Joey_M]

I waited 2 weeks before starting so as to have a cushion on my meds and it was a relief to always be well stocked and not worry about running out.

As far as timing of injection, I rarely had any problems when I did them (Tuesdays) or the day after. The worst of the side effects often hit Friday, Saturday and Sunday. From what i have read, the pegalation causes a second peak 72 - 96 hours after the injection. But timing and intensity was random for me and seems to be for most on treatment.

Also, you can change your injections by a day if need be - I would do it gradually and maybe do it at bedtime on Thursday then the following week, early morning Friday, etc.

[disengof]

Thanks, Now I have more time ti refill the medication. On the other hand, they scheduled an appointment with me on Thursday since that I have to do  injections every Thursday at the same time. I heard that it is important to do pegasys' injections and take a pils of Riboviryn at the same time every week, day and so on. However, to be able to work (as I hope), I'm planning to do injections every Friday's evenings. So, how can I explain that to the doctor? I tried to tell her about that, but she just ironicaly refused my quess. However, I read about that someone's successful experience here in the forum.

[disengof]

Thanks. As I see you gave me a really good advise which is proved by Justme53 reply. Sure, I have to considered this issue as time to start to call about refill, not as delay. Can you tell me what should I do to make sure I will have the refill on-time? There is really lack of this knowledge I have.
Regarding to cirrhosis... I didn't fill anything before the life insuarance co. refused my application telling me that I have a Hep C. Unfortunatly it is life, my life. I'm not able to change anithing in such case.
However, is it really possible to do a transplantation one day? Or it is just a gold dream?
Thanks.

[justme53]

Good advice about taking the time to find a doctor you feel comfortable with now rather than later. Especially with cirrhosis (me too), you be glad to have a Dr. that really knows his stuff and is aggressive if need be.

I ended up waiting a month after I received the meds to start, but that gave me a good cush as a backup in case of pharmacy or clinic snafus. Great peace of mind.

Good luck to you.........Pam

[newleaf09]

There is very little you can do for cirrhosis except start treatment.  Of course, don't drink, avoid things that can put stress on your liver like most of the over-the-counter pain relievers and working with chemicals.  That's really all you can do for cirrhosis.  Once you start the treatment you will need to remember to eat something every time you take the ribivirin pills and avoid grapefruit because it can interact with the drugs and make therapy less effective.  

Doctors usually want you to take the first shot in their office so they can be sure you know how to do it.  There are doctors who go into medicine because they have a genuine wish to care for the ill and improve the lives of others.  A large percentage of physicians go into medicine because it can be a high-earning, well respected profession.  They receive almost no training in how to ACT caring and concerned, just the technical part of medicine and a seminar or 2 on business management.  You could change to a more caring doctor, but I agree with FlGuy that technical proficiency is more important.

[FlGuy]

I don't see it as an issue. Since you say you have cirrhosis and if it's due to hcv then you've had hcv for maybe 20 or 30 years. So, what's the rush now and why would a few days make a difference?  Many people think it's a good idea to wait a couple of weeks after the meds arrive.  That way, you can begin the refill process and make sure that you always have a couple of week's of meds on hand as Marcia said.  Caring by you doc and his staff is overrated.  It's the medical advice you pay for.  

[Marcia2202]

I'm very sorry to hear about your situation. It would be good if you could find a better doctor. As to not starting right away, maybe it is not a bad idea. Every now and then one hears about people not receiving their meds refill in time and thus big panic occurs. I have heard that some start their meds ca 2 weeks after they get them, so that they always have more meds in reserve.

Hope someone will chime in with a good doctor for you.