lack of meds, and bad docs

[nikkihorseluvr]

My current doc is a hepatologist.  I am HepC1b, taking 1200 riba, and pegysus. (week 19).  The symptoms have been awful.  The doc tells me that nausea, trouble breathing, vomiting, RE NOT SYMPTOMS OF HEPC MEDS.  Since I assumed that this small town might be a problem, I simply read the insert on my medication.  Yes, he is an idiot.  I hav e tried taking notes,asking questions, and the result is one very irritated doctor.  He will simply not treat the side effects, and sends me to another doc.  The insurance companies play ball with these docs who do not perscribe.  If I demand , the standard procedure around here is to "fire" the patient".  I am paying for my riba and Pegysys, and know that at some point I will go nuts if the other sx are not treated.  Any suggestions??????

[Paris47]

I feel my tx could have been so much better had
I found the dr that I have now found for my follow up
don't be like me, switch now....!!
the results are your health...physical and mental....
I have to have multiple extra test now, due to dr #1 being
a 'butt' and now I might have long term side affects that I
wouldn't need to have if the dr would have noticed the 'alerts'
to the certain # on my blood labs.
sheesh...I feel stupid for waiting, don't be like me...
go for the new dr.
good luck.!!

[jmjm530]

Just want to add that keeping the patient on full meds, or as close as possible, for the full course of treatment, is half the battle plan. Any doctor who abdicates this responsiblity seriously jepordizes your chances of SVR.

[Tater-ToT]

Bite the bullet or find another DR....

I had the same problem & wound up being Dismissed at a very critical time during my TX.... not leaving me enough time midstream to correct it....

I feel for you & seriously IF It were me....
(Knowing Now what I wish I had of known then).....
Then I would have done things differently... If you are already feeling this way now... chances are the situation is not going to improve on it's own....

My Doc wouldn't even prescribe boosters when my Hemo's averaged around 9.3... just no sence suffering thru this when there are helper drugs available for a variety of SX...

I had to do the same as you & bring pkg inserts ect... & he still wouldn't read them, & everytime I took notes or would ask or suggest him anything (even valuable info I found in this forum) he would get insulted & feel as if I was questioning his authority... I spent a grand total of just over 100 weeks & 2&1/2 years dealing with him... & I just can't see you having to further subject yourself to it, unless you just absolutely have too!!!

Good Luck on your decision... & Maybe pray for him in Church on Sundays....It's not easy to know WHAT to do in a bad situation like that!
:(

[Alady1620]

I hope you are able to find another doc.  Yours sounds like a real piece of work.  I feel sorry for his patients that are not educated like you are and put up with that kind of thing.  

[jmjm530]

I HAD a derm like that. He actually called me "stupid" when I suggested some blood tests which my hep doctor later ordered unprompted. Another time I asked him about medication "X" which I read about. His response: "Don't you think I would have prescribed that if I thought it would work". Guess what?  My next derm did prescribe same medicine it and it did work. This guy is considered a world-class dermatologist. I consider him a world-class a*sshole. All of the symptons you describe can be associated with combination treatment. The fact he won't even acknowledge them as treatment related side effects says more than my stomach could handle. I also think a good hepatologist should take care of side effects himself, except when beyond his scope. My hepatologist did everything in house from prescribing antibiotics to Procrit to Flu shots. I sometimes deferred on my own and saw a specialist, but it was comforting that as far as he was concerned the buck stopped at his desk.

-- Jim

[NYgirl]

Well first I'd ask you this - what IS It that you want him to treat that he isn't?

Most of the sides...not much you can really do about them, you just have to live with them and do crackers for the nausea...you know just common sense junk.

On the other hand you have real time sides like anemia from the Riba - and of course you know the docs won't prescribe until it's so bad you're half dead from it...but that is just how it is.

Aside from the fact that he's not giving you sympathy or understanding about how much the sides DO suck - is there really anything you have asked him straight out to DO that he hasn't?

[sfbaygirl]

I think there are many, many sx that can be treated with different things. I know because I have a growing draw full of meds for my sx. Nausea can be awful. I had it and my dr. gave me nexium which worked. I couldn't keep anything down before, now few problems with it. There are other nausea meds that others have mentioned, like compazine, a suppository so you don't have to worry about throwing it up.

Depending on the other sx you have, you may be able to get some help. I am on 20/48 and know that without some of these sx meds, I don't know if I could continue tx.

Just be sure you check that the meds you get are okay to take with our tx.

Sounds like you need to go to a new dr. even if it is a PCP or GI. I would find another. I know that is easy to say, because I have thought I would, but didn't/don't have the energy. Since I am getting what I need mostly, I will stick with mine until (God forbid) I relapse or have some other serious tx problem.

Best to you!

[DragonSlayer45]

Wow, I would not tolerate a doctor who you could not talk to . I guess I am lucky my doctor likes the fact that I know about this disease and encourages me to "Do my Homework".

[cuteus]

the hepatologists will treat some symptoms, but others are left for the GP or other specialties.  My GI would prescribe the tx meds, the Procrit and ADS if I needed them, but not pain killers! my GP or PCP did that! the dermatologist took care of skin problems and cardiologist problems with chest pains due to anemia.  Ask him what he will prescribe or treat while you are on Tx, simple as that.  What he does not do, the PCP should.  My PCP/GP worked in conjunction with the GI during my Tx.

You should not suffer more than you need to! Period. Get to your primary with the inserts and ask him/her for help!

[Pdilly]

Ditto for my doctor.  I think it may be an insurance thing.  He said if I needed Ad's I would have to see my regular Dr.

[jmjm530]

I found it easier to reason with a rock than with docs like you describe. Personally, I'd switch to another hepatologist even it it involves travel. An alternative is to find a good GP or GI who will work with a non-local hepatologist. Just don't let go of the one you have until you are fixed with the new one as you want to be covered at all points in your treatment cycle.