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Re: [IP] Humalog - TOO FREQUENT SITE CHANGES ?
I just want to add to this that the first 10 years or so of pumping with
regular/velosulin was fraught with similarly confusing and frustrating problems.
To be honest, the lack of stability of the humalog is frustrating but our (this
groups) and some medical pros understanding of cause and effect is much better
than it was 15-17 years ago when I started pumping with regular as a teenager.
My stomach had reached the point of hideousness and beyond long before anyone
figured out velosulin worked better than regular and it wasn't until they
invented sof sets and revamped the needles in the infusion sets significantly
that I walked around more than half an ocassional day at a time without my
stomach hurting perpetually. It's taken five years for it to heal. Humalog is
frustrating. The mysteries about how to improve it and the slowness of Lily is
frustrating. But it's not moving any slower though than past developments. They
will get it right in time. At least at this point, you have kids like Lily who
have been pumping for more than a year or two and can stand to touch and look at
their stomachs! Things are improving.
Bob Burnett wrote:
> Ellen wrote:
> >Recently many parents have complained to me about the fact that on the
> >Humalog, site changes have to be much more frequent then they were while
> >Velosulin or Humulin R. We haven't figured out if it's due to lower basal
> >rates that cause the clogs in the Tender/ComfortDisconnect/Silouettes.
> I'm not certain there is a clear "villain" to focus on here. Some of us
> have had problems with all types of infusion sets. There have been widely
> varying reports on "temperature fragility" of Humalog, no clear consensus
> on how long a pumper can use this insulin before developing problems with
> it (total time of usage, as in months / years), and differing opinions on
> whether many of the problems are clearly related to basal rates. It seems
> like a big part of the problem for Lilly, Disetronic, MiniMed and Maersk
> (manufacturer of the Tender / Comforts / Silhouettes) seems to be the
> inability to clearly identify the issues. This list has certainly
> experienced the difficulties in trying to summarize Humalog issues and
> tricks for dealing with them. It's virtually impossible to write a FAQ on
> Humalog, since there are more questions than answers.
> >This IP list is 500 strong. We have a voice. I for one will call Eli Lilly
> >today and voice a request that some buffering agent be investigated to make
> >the Humalog not clog at low basal rates and to last longer even in the
> heat of
> >warm weather. Will you join me in this calling campaign? 1-888-88Lilly.
> We are 500 strong, but we are still a small portion of the total pumping
> population. I see some additional challenges in this fact - How can we get
> these companies to focus on *us*, recognizing the fact that we have a high
> level of motivation, experience and first hand knowledge of the challenges
> presented here, perhaps to a higher degree than the general pumping
> population? How do we get the companies to cooperate with each other in
> solving this particular dilemma? (that's probably not possible, but
> necessary, and therefore worth asking). How do we invite the companies to
> join us on our list, listen to what we have to say, yet *compel* them to
> give back some of what they've learned here? We don't need them sucking us
> dry for information, then not giving back anything of real use (if any
> vendors are listening, please make note of this comment, thank you ;-))
> I've called Lilly's pharmacists close to a dozen times. They sound like
> they take good notes, but we never hear back from them. I think we are
> going to have to "demand" that they tell *us* what they need to know to
> solve the issues, rather than the typical "uh huh, then what happened
> next?" type of conversation. We might be surprised by how much they don't
> yet know ...
> I'll call again, but how I wish they would open up some ...
> Bob Burnett
> mailto:email @ redacted
> Insulin-Pumpers website http://www.bizsystems.com/Diabetes/
Insulin-Pumpers website http://www.bizsystems.com/Diabetes/