Are Doctors Reluctant to Prescribe the Tx for CIDP?

    • Anonymous
      April 5, 2008 at 4:38 pm

      Are doctors reluctant to prescribe the Treatment for CIDP due to the expense and the complication of the processures?

      Eoin

    • Anonymous
      April 5, 2008 at 6:59 pm

      Hi,
      In our experience (which is only being in the loop of CIDP since July 2007), we haven’t found my husband’s neurologist reluctant to provide treatment. BUT we are learning that cost is a huge factor. My husband is responding extremely well to his monthly one gram per kilo of weight IVIG, but the neuro. wants to add Cellcept with the view to decreasing the IVIG. This is in respond to guidelines from an IVIG committee that oversees the use of IVIG in our Province. The guidelines dictate that the neuro. must attempt the use of lower cost meds. such as steroids, Imuran, and Cellcept. Hubby just had his appt. yesterday with the neuro. He refused the Cellcept, and now we have to present our reasons why to the head of the IVIG committee and plead for continuance of the IVIG.

      I think there are a few issues surfacing in this scenario. 1) can a government managed health system dictate treatment protocols based on cost? 2) is it ethical to push a patient to accept a drug that has potentially dangerous side effects? 3) can the government managed health care program deny IVIG to a patient who refuses immunosuppressants?

      I’ll keep you posted as to what happens with our case. I’m busy getting my ducks in a row in preparation to take on the head of the IVIG committee. I’m prepared for this to be the hill I die on i.e. bringing in the media, Provincial health critics, etc. I don’t think we are being unreasonable, but if others think differently please give me your input and rationale.
      Laurel

    • Anonymous
      April 5, 2008 at 7:46 pm

      Laurel call the Canadian GBS/CIDP foundation they might be able to help you. Also I had IVIG 2gram per 1kg of weight. I had 25mg a day for 5 days once last summer and this past January. I live in Ontario and there were no problems for me.
      I hope you you win your fight. I know it cost OHIP $2500. a day for my IVIG ($100 a gram). So keep us posted.

      Sue

    • Anonymous
      April 5, 2008 at 7:48 pm

      Thanks and the best of luck!

    • Anonymous
      April 5, 2008 at 8:35 pm

      [QUOTE=suewatters1]Laurel call the Canadian GBS/CIDP foundation they might be able to help you. Also I had IVIG 2gram per 1kg of weight. I had 25mg a day for 5 days once last summer and this past January. I live in Ontario and there were no problems for me.
      I hope you you win your fight. I know it cost OHIP $2500. a day for my IVIG ($100 a gram). So keep us posted.

      Sue[/QUOTE]
      Hi Sue,
      Good advice. After reading your posting, I sent an email to Susan Keast.
      Where I get perplexed is over the issue of the government deciding treatment versus the treating physician/specialist. I can see if the patient isn’t responding to IVIG then something else needs to be tried, but is it ethical to push a patient into going on another drug that can cause major side effects based on the fact that his current medication regime is too costly? I don’t think this is right.
      Laurel