some new issues, maintenance/ actos

Giddyup went to see his new doc at theCenter for Hep C in NYC.  His old doc moved..Giddyup has been on maintenance for the last 15 months  (prior to that for you newbies,he did a year of daily infergen with riba and  before that a  short course of Pegasus)
OK. new doctor isn't sure about the mainentance wants to see what the Nov conference has to say about it..she is not convinced it does any good She is also questioning his daily Actos for the insulin resistance, and said that Actos may actually limit  a number reduction (of the Hep C) while on interferon treatment. (would like to see dietary changes and daily exercise).she would like to stop his prescriptions of ativam and ambien (like him to see a psychiatrist for the anxiety)and a different rheumologist to deal with the cryo and pain issues (rather than the doctor he saw and his pain management doctors) Giddy and I had conflicting views about how it went..obviously he is livid and distressed. I think she was more honest and unfront with him than he is used to. Dr. L-B had fabulous bedside manners, and had a way of sugar coating the worse case scenerios, she was a bit more blunt and really said lets stop putting band aids on things and find out what is going on. She did leave him on nalodol for his (beginning) varices
I know that Giddy was terribly distressed and is not happy about having to make more changes in his life but I really felt that she made some hard to hear honest comments, I sometimes feel that Giddy thinks "hey I don't drink, I make all my doctors appts,-sonos, MRIs, endos,colonoscopy..he was really compliant with all is treatment regimens ...why can't they just let me be????
I don't know what to say, we are really at odds about this..I will say nothing has changed yet, we are to call after the Nov conference to find out about the maintenance, and renewed his meds this month (for the last time). Thanks for listening to me vent ..any thoughts???

[jmjm530]

Yes, I've heard there may be some important data on the efficacy of maintenance at the November conference.

Right now, your husband is treating in a very good group. Sometimes if progress is not being made, shaking things up a bit with a fresh approach is not a bad idea. Her suggestions regarding replacing some anxiety drugs with talk therapy and exercise also seems positive.

Maybe see how it goes with the new doc. Of course, "bedside manner" should not be dismissed entierly, and if it turns out that she and your husband don't connect at all -- then seeing someone else in the group is always a possiblity.

I do know you two have been through a lot. I truly hope that the new docto -- as well as what appears to be a wave of new HCV developments and drugs -- will soon make a big difference in your lives.

All the best,

-- Jim

[whoaisme]

Thanks for your response. The problem as you can tell is that I liked her. Giddy would agree that although he did not like what she had to say, she was still human and kind and really in my opinion knew her stuff. We'll see

[jmjm530]

Sounds all good to me, just may take some time for the new advice/changes to sink in. Please let us know what is decided re Mainteance after the November conference.

Hope both of you the very best.

-- Jim

[pigeonca]

As far as I know, which - because I'm not a doctor isn't that much, but I am a diabetic - Actos isn't the most highly recommended medication for insulin resistance.  It can cause fluid buildup, weight gain and heart disease.  For insulin resistance, which isn't full-fledged diabetes, if you're going to take any meds at all, metformin is probably the mildest and sometimes can even cause a slight weight loss.  Stay away from sulfonylureas if all possible, as they eventually destroy your islets of langerhans.

I have early diabetes and treat with insulin - after using peg and procrit, I have no problem giving myself a shot.  But your new doc is correct:  Diet and exercise are the best thing you can do, and then use whatever meds you need on top of that.  I find that a 15 to 20 minute walk after each meal does a lot for me.

[FrontRangeMom]

There is an abstract already available on the AASLD website on the final results of the HALT-C trial using maintanance therapy with low dose Pegasys that will be presented at the Nov meeting.  The conclusion is that there is no measureable benefit from long term low dose maintenance.  I was concerned about this because I am also on maintenance.  There has been no detectable changes in my viral load or ALT since starting.  HOWEVER, I can tell that there are some benefits to me.  My night sweats are gone, and the incessant itching has decreased incredibly.  I talked with my doctor and we agreed that I would finish off the 10 doses I have in my fridge, then revisit what to do next, if anything is different.

There are other studies that hint at benefits, most notably the interim results from the COPILOT study,  I'm supposing that the therapy helps some, and not others.  Since I have cirrhosis and no other choices, I don't have any other current options.

"Mom"