mistreatment of hep c 6

[galemarie]

6 weeks ago I received my training to inject 135 mcg of interferon.  When the meds arrived it was autoinjectors @180mcg.  I call Doc's assist. who is in charge of my treatment to let him know  the difference.  He said there is no way for me to drain the syringe a he train me.  I took the shots for 2 weeks, plus the Incivek and Riba-Pak.  I called Doc's assist to tall him of severe side effects; headache from back of ear to ear, pressure at temples, mind in a fog, hearing in a tunnel, light headed, dizzy, nausia, hazy eyesight, extreme fatique, tired sleeping 10-12hrs at night plus 3-4 naps during day, rash with blisters backs of hands, forearms, ankles, backs of legs, sides of upper leg area, white tongue/pimples at tip,cemical leaching in throat, taste of chemical in mouth, pressure on heart, shortness of breath.  He had me come in 2 weeks earlier then scheduled follow-up with lab work, which was a week away.  He made no changes so I continued meds.  At Follow-up all side effects stayed the same, except rash was gone and I wasn't as nausiated.  He told me my red blood cell count had dropped to 10.2.  He would submit Prokrit to my insurance company for approval.  He also told me he did not know Interferon was available in 135 mcg/autoclick, he would submit that.  After mistakes on his part I did not receive it for 1 1/2 weeks, which I missed a weeks treatment. I could of had the smaller dose, maybe my side effect would of been less. In the meantime I asked when I was there, I called a few times asking for something, anything to help with side effects.  I was told to hang in there.  I was given nothing, was not given any prescription for anything, the only suggestion mad to me was hydrocortisone cream (which rash was already gone), and alternate tylenol and ibuprfen for headache (it might of help to keep from getting severe, but still had headache).  I wasn't told how many mil, or how often.  Once I received new dose, I decided not to take it till I had something for the side effects.  I did continue other meds that made me just as sick.  So then I decided not to continue those meds either till I got something for the side effects.  It's been 5 days now, I'm doing a lot better, but still sick enough that I can't work, or do hardly anything, without extreme fatique and tiredness, heart pounding and shortness of breath.  Still a headache sometimes, but not as bad.  Other side effect are still there, just not as bad  6 weeks since the start of my treatment, I still have not recieved anything or been told what to take.  II was only told, now that I stopped treatment, insurance was not going to approve Prokrit.  As much time that has gone by, they should of already gotten some kind of notice as to the statis.  My complaint is that I did not receive the medical attention I desparately needed.  What recourse do I have?

[Advocate1955]

We just don't have enough information to be able to advise you.  We don't know what Genotype you have, and we don't know if you were only on Interferon and Ribavirin, or if you were also taking a third medication (either Incivek or Victrellis).  If you were only on Interferon and Ribavirin, it may be possible for you to re-start your treatment, but I would agree with others that you should try to find a new doctor who will be better able to manage your side effects.  If you were on three medications, it is very likely that you will not be able to re-start your treatment due to resistance concerns, and you may need to wait either for a clinical trial or new medications to become available in the future.
Please post again and provide us with your genotype, the specific medications that you were on, and the stage of your liver disease if you know it.
Advocate1955

[ceanothus]

I just re-read your post and it makes more sense now. Initially I thought your primary complaint was about being given the higher dose of interferon rather than the reduced dose, but now I am seeing more focus on the terrible side effects of the meds. It is really horrible that some doctors prescribe these meds without thoroughly preparing the patient for what side effects are likely to arise. These are very potent drugs, they have to be because this virus is very hard to eliminate, and potent drugs can have a lot of unwanted sx (side effects).. Some people, mostly those who are younger and in pretty good health, breeze through tx (treatment) with few sx, but many of us have a large number of serious sx. A few end up hospitalized as a result. I wish your doctor had prepared you better or that you had found this site earlier. Unfortunately, we rather frequently hear from people who weren't well-informed before starting tx – it is unfortunately fairly common. The lesson I've learned is that with any serious illness, it is critical to learn all you can on your own, from reliable sources, so you can really know the treatment options and possible problems and can then ask for things when they aren't offered and otherwise keep watch over your own care.

At this point I would worry that you've been off the drugs too long to restart them, and that your sporadic use may have allowed some resistance. We don't know how urgent it is for you to treat right away and it might not be an option right now anyway, but any info you could provide about tests you had prior to starting tx would help at least in determining whether you were on the correct tx and whether you can comfortably wait for tx until the new, currently studied, drugs are on the market. They will be the first new tx that doesn't require any interferon and the side effects will be much less. We expect them to be out in a couple of years. At any rate, I would recommend that you find a highly experienced hepatologist to go over the options with you. There is a thread on this site where people have listed doctors they feel are very good, it is at: http://www.medhelp.org/posts/Hepatitis-C/Who-is-your-good-doctor-/show/1715783

Good luck!

[crossroadsec]

I had to measure my own from a vial, but it was hard. Especially when they were tweaking the doses due to anemia. Keep pressuring your doc for more information. Ask them to write it down. When you are on tx, it is not easy to understand or to remember what to do from dose to dose. Please post and let us know how it worked out.. Karen:)

[ActingBrandNew]

"My complaint is that I did not receive the medical attention I desparately needed.  What recourse do I have? "

I don't know where you live but every state has a medical board.....and every medical board has a complaint form ...I'm not saying a complaint will do anything...I'm just answering the question about recourse. Ive seen a few states complaint forms and they had the same sections:

Nature of Complaint

X-Substandard Care,Misdiagnoses, Negligent Treatment, Delay in Treatment
X-Prescribing issues, under/excessive prescribing
X-Sexual Misconduct
X-Unprofessional Conduct
X-Office Practice
X-Other
_________________________________________________________
I'm sorry you were having such a hard time on treatment and that it was stopped. A lot of us go into treatment not really understanding all the aspects of it. Had I known what I know now....Id have gone with a different doctor...Id have interviewed him/her for the job to treat me. It also sounds like your insurance company dropped the ball or at least they didn't approve the Procrit...Id find out why that happened.

I wish you the best of luck

[Idyllic]

I am not sure what you mean about recourse. If your treatment is not being managed then it helps to learn all the things that are supposed to happen and insist that they do or transfer your care. Stopping meds until the doctor notices or receives notification harms you more than anything. It hate that it is like this with some doctor s but sometimes you have to be a nuisance. Some people have transferred their care to another doctor after treatment when they discover their doctor is not managing their care. I was thinking you could ask your PCP for a referral or maybe even your insurance company. (My PCP and insurance company referred  me to the same doctor)


Stopping your meds could jeopardize your chance to clear the virus especially since most of what you said happens to all of us when we treat. Many people are not prepared what to expect with treatment and it sounds like you were not prepared. The thing is it would help if you post again since other medical conditions might be a factor here.

180 is the right dose for the Interferon shots. It sounds like the mistake was with your training. This is all unless there is a specific medical reason you are supposed to take a low Interferon dose? If so it would help to know that reason since it could influence the advise people give you.

On triple therapy when hemoglobin drops 10 the protocol is to reduce your Riba pills by 200. Having CBC (labs) weekly helps guage your response.

It would help to know about your other medical conditions and the state of fibrosis you have.

How long have you been off all meds? What was your start date and what was your viral load at week four.

I am sorry all this happened and not really on my laptop to address every aspect of your post. Other people who know way more than me will post and might be able to explain Triple therapy protocol and what is and is not possible based on what you said. You really need to post again with the facts I asked about above.

So far this sounds like an unfortunate case of miscommunication with little patient oversight and side effect management. I am not sure what all can be fixed or where to go from here since the timeline and your medical circumstances is unclear.

[ceanothus]

It sounds like you need a doctor who is a better communicator, but you also need to educate yourself more about the virus and the treatments. It is usual to prescribe 180 mcg interferon and less common to reduce the dosage to 135. The higher dose is associated with better results so most doctors try to stick with that dose. I've treated 3 times and my dosage was never reduced to the lower level in spite of pretty bad side effects. Usually when the dosage is reduced, it is done on a temporary basis with the hopes of getting the dose back up in a few weeks time. Was there some special reason why you should have been started at only 135?

What genotype virus do you have, and what other meds were you given? It is not recommended to stop and start any of the meds unnecessarily, but it is absolutely forbidden to do this with any protease inhibitors, if you we're on those. The P.I.'s are Telapevir (Incivek) or Victrelis (Boceprivir). It is a very bad idea to take those without taking the interferon and ribarivin at the same time, and it is equally bad to skip any doses of the  P.I.'s as this will increase the risk of your virus mutating into a drug-resistant form.

Try to respond with more details on your genotype and the condition of your liver (biopsy results) and we can try to offer more guidance. You can also learn a lot on your own by reading different threads here and at http://www.hcvadvocate.org.