Yes, profound indeed, like dragging around a ball and chain.

Now we can reimagine our futures…

Hi Chejai,

Okay, based on what happened at that meeting you had above I think you have one of the supportive Brisbane specialists on your side. The problem I suspect is that a great deal of pressure is being applied on the public clinics and as a result the helpful people are wary about putting their heads above the barricades in case they get shot at.

You may have read here that my specialist agreed to write me a private script and then monitor me through a public clinic. What I haven’t related till now is what has happened over the last couple of weeks. I didn’t say anything until now because I was waiting to see what would happen before going public on here.

So, a couple of weeks ago my meds arrived and I tried to contact the nurse at the clinic via email and phone msgs to let her know I was ready to start treatment and monitoring. No response! Well, I thought about it overnight and the next morning decided “Stuff this, I’m starting treatment now! She’s busy and will ring me when she has time.” Nothing!!! So knowing that I had a CT scan at the hospital in two weeks I decided that if I hadn’t heard anything by then I would go to the clinic at the same time and front them about whether I would be monitored or not. If not then I would contact GP2U and see about arranging at least minimal monitoring tests etc. in tandem with my GP who is now coming round to the idea of generics.

Anyway I heard nothing until the start of this week when the nurse returned my call. As we talked it became increasingly clear that she was reluctant to mention generics or offer anything to me…….BUT if I suggested something she would readily agree to it. Now, I have had regular specialist/clinic contact over the last 3.5 years including 6 months as part of a clinical trial plus have read extensively about the generics and monitoring required so I have a pretty good idea of what is required including Riba effects from last time, so we were able to negotiate my monitoring and clinic visits in a satisfactory manner so that I get what I want/need. It seems very obvious to me that pressure has been applied for clinic staff not to offer support to patients using generics.

As I understand it you are not in the position to become a private patient of the specialist who just happened to show you his phone that at the time just happened to be showing the URL for this site? In that situation I think I would probably make sure I had an appointment booked with the clinic to see him as soon as possible in the new year. Don’t mention generics till you get in his consulting room and the door is shut.

Further to that (if I tread on any corns here pm me for an edit) in the mean time see if you are in the position to make an appt with GP2U to investigate your fibrosis status and where you go from there regarding treatment. If that works for you and you are confident to go ahead then you can turn up to see that specialist at next years appt and say “My current list of medications that I take includes this and that, oh! and Sof and Led and I need the public clinic to continue to monitor my hepatitis taking this into account”.

Hope those thoughts help.

G

Hi zhuk,

Good luck tomorrow at the blood place.

Exciting, not long now before you slaughter that dragon
x

Cheers for the well wishes, Cindi

Have started to count off the days already lol

Hear you on that, Chejai!

Also interesting how your GP got cold feet because of the “risk” of an unfamiliar product – today I saw the nurse & specialist at RPA for my pre-treatment check/bloods, and found out that because the meds have been TGA-approved, they are in the MIMS book already (just not on the PBS). This was in relation to the thyroid op which has to be done in the new year, and I will be on tx by then…so the hospital can look up the book to check for contraindications with antibiotics etc. I’m pretty sure they would be “unfamiliar” too but no one is freaking out about the prospect in the least.

Many thanks GAJ, I should have provided the explanation, my bad

https://en.wikipedia.org/wiki/Monthly_Index_of_Medical_Specialities