denabob Posted January 2, 2004 Report Share Posted January 2, 2004 I've been ill for two years now and through many doctors and testing. I found my current doctor at WVU physicians office center in Morgantown WV. His name is Dr. Robert Hoeldtke ( pronounced holdkey) he is researching the benefits of Octreotide either alone or in combo with Midrodine. I have completed testing and found it very helpful to me! I know ful-well the frustration that comes with this illness. I'm a single mom of 2 and before my illness I was a letter carrier for the US Postal Service. Of course as many of you know that's no longer possible! I went from walking 10 miles a day 5 days a week to being lucky to grocery shop without help! Finally thanks to my doctor's dedication and this new med. I have at least 2 good weeks a month. I'm still considered disable by the gov. but if I can take care of my children without as much difficulty then I'll take what I can get! I hope this info is helpful to others who like me have prayed for some relief for a long time. My doctor gave me the o.k to give his name because he needs the drug company to see the benefits of this drug on this condition. For me it's nice to have the ability to feel normal (not just o.k) some of the time. Even though there is no cure , some relief from symptoms makes it easier to cope with this illness. Quote Link to comment Share on other sites More sharing options...
genie Posted January 2, 2004 Report Share Posted January 2, 2004 Hello, I have been on Midrodine for a year and 1/2 and my doctor is wanting to add something to it. I am curious to know more about the octreotide if you have any.Thanks!! Quote Link to comment Share on other sites More sharing options...
goldicedance Posted January 3, 2004 Report Share Posted January 3, 2004 I too have experienced benefits of WVU, the talent of Dr. Hoeldtke, and octreocide. Hopefully, the beneficial effects will continue. Only through the research efforts of doctors such as Dr. Hoeldtke can we expect to make any progress in returning to a semi-productive/productive life. Quote Link to comment Share on other sites More sharing options...
futurehope Posted January 3, 2004 Report Share Posted January 3, 2004 Denabob, I'm so happy for you! What specialty is Dr. Hoeldtke? What test results did you bring with you to show him? How far did you have to travel, and how did you get there? Was this an experimental drug, the Ocreotide? Thanks for the information. Quote Link to comment Share on other sites More sharing options...
ethansmom Posted January 3, 2004 Report Share Posted January 3, 2004 That is very interesting information!! I live in WV and had looked into going to see Dr. Hoeldtke, but when I called his office to ask some questions, I found the staff to be rude and unhelpful- what has your experience been with him other than the treatment? How is his bedside manner? It's nice to hear from someone who has had a good experience at WVU- I've talked to a few who weren't too impressed. I'm so glad for you that you are feeling better, though!! I am also a mom, although not a single mom, I am home with the baby 24/7 and his dad works long hours and goes to school, so I take a lot of the burden on myself in caring for him- and there are days when it is just so hard!! I commend you for hanging in there!! Best of luck to you Quote Link to comment Share on other sites More sharing options...
Timbo Posted January 4, 2004 Report Share Posted January 4, 2004 Do you have this guys phone number? I live next to WV. Quote Link to comment Share on other sites More sharing options...
goldicedance Posted January 5, 2004 Report Share Posted January 5, 2004 Re: OctreotideNot to put the downers on this medication but it is more than extremely expensive. A 3-month supply is about $5,500. It is more expensive than gold!Goldicedance Quote Link to comment Share on other sites More sharing options...
futurehope Posted January 5, 2004 Report Share Posted January 5, 2004 Goldicedance, Are you taking the drug Ocretide? How much and how often? I know nothing about it. Is it helping you? Quote Link to comment Share on other sites More sharing options...
goldicedance Posted January 6, 2004 Report Share Posted January 6, 2004 I have recently started taking this drug and it seems to be of some help. It is difficult to give you dosages, etc, because the dose must be titrated to your needs and reactions. I was flabbergasted when I picked up the 3-month supply and the price was about $6,000. And, that is for doses in varying strenghts. The stronger the dose, the more costly. This process involves monthly injections done at a doctor's office and injections you can do at home on a daily basis.I hope that this information is useful to you all. Quote Link to comment Share on other sites More sharing options...
denabob Posted January 10, 2004 Author Report Share Posted January 10, 2004 I'm sorry it has taken me so long to respond! I'll answer as many questions as I can. Dr. Hoeldtke (in my experience) has a fabulous bedside manner, he understands the frustration of our illness. In order to contact him you can call his office at (304)598-4800 if the receptionist is rude make sure to mention it to him directly She answers for more than one Dr.! You can also call his secretary directly to ask about research at (304) 293-4125 ( tell them Deanna sent you )I agree that octreotide is more expensive than gold but to me it is more valuable than gold will ever be and I'm one of the lucky ones whose insurance actually pays for it! It is not an experimental drug but it is not linked to our condition yet ( that's the objective of the research) I traveled 270 miles round trip and the research reimbursed me for my mileage and hotel costs were paid as long as I was under research protocol.Dr Hoeldtke is an endodronolgy/ metabolism expert.The cardiologist that I was seeing refered me to him when it became obvious that I was "refractory to therapy" I provided him with my tilt table test results and the rest was done by him.I have benefited greatly from this treatment and hope this info helps someone else to also!!! Thank you for your interest and kind words! Quote Link to comment Share on other sites More sharing options...
Timbo Posted January 16, 2004 Report Share Posted January 16, 2004 (edited) I can't afford that drug. That is ridiculous. Drug companies sicken me. I am stunned that insurance would even consider paying for it. Edited January 16, 2004 by Timbo Quote Link to comment Share on other sites More sharing options...
goldicedance Posted January 19, 2004 Report Share Posted January 19, 2004 Why are you stunned that insurance companies would consider paying for octreotide? Is there a $ limit at which insurance companies should no longer pay? I don't think so. There would indeed be some very difficult ethical questions to ask and be answered.goldicedance Quote Link to comment Share on other sites More sharing options...
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