IVIG, Pie & Creutzfeldt-Jakob disease (CJD)

    • Anonymous
      April 17, 2011 at 4:47 pm

      Well, emily’s_mom, let’s unhijack the travel-pie thread and start a new one.

      I would say, without exception, every doctor (think specialist) that I’ve talked to following the MDA neurologist’s claim ‘scoffed’ at the notion that anybody would likely die or get a deadly infection from IVIG.

      OK, OK all you out there that wanna say, ‘WELL READ THE PRESCRIBING LITERATURE, it’s true!’

      Well, for the wanna sayers- Yes, I know, IVIG is a human blood derived product. Am I gonna quit driving because, statistically I could get injured or killed? Are you?

      Am I gonna quit flying because the plane might crash? If you live anywhere near tornado alley are you going to move? How about San Andreas fault folks, ditto moving?

      Likely the answer is heck, no. So, why would I stop taking one of the only meds proven to have an effect on my condition?

      As for MDA, I’d still use the services. If I have to. I will go another city’s clinic though. Those two doctors have merely joined the list of the other 65 doctors I’ve seen and then moved on to somebody else.

      edit to add MDA = Muscular Dystrophy Association

    • Anonymous
      April 17, 2011 at 9:29 pm

      Yuehan -Good idea to unhijack the pie thread. I think pies deserve their own thread anyway 🙂

      I have spoken with other neuros, an immunologist & an infectious disease dr that were all extremely surprised by the dr at the MDA clinic claims. Like you said there is risk but there is risk with ANYTHING these days.

      I think what surprised me most was the fact that a panel of drs, 6-7 of them, all looked at Emily’s file & supposedly all came to the same conclusion…that she should be taken off of IVIG & put on steroids. And then when the steroids were making her worse they all wanted to increase them.

      When I read about Mayo clinic & Dr. Dyck’s research & usage of IVIG it just makes me feel like MDA is getting behind on the times. I honestly don’t know if I could recommend them again until I know they are becoming more updated.

      I think they have been a great asset, for many years, for quite a few people & it’s a shame to not feel that way about them any more.


    • Anonymous
      April 18, 2011 at 12:02 pm


      The issue that pops up in my own great mind (another joke, ok!) is that, at least in my area, the MDA Clinics seem to be staffed by your every day run-of-the-mill neurologists.

      And, yes, they are probably still using the knowledge they gleaned from med school. Also, in my case, they had absolutely zero interest in communicating with me about what I learned at Mayo Clinic.

      No need to say more….

      Pie, forget pie. My wife just made some biscuit donuts- yummy. Yep, same fluffy biscuit recipe, I think. Deep fry ’em don’t bake ’em. We learned it on the Food Channel.

    • Anonymous
      April 18, 2011 at 3:56 pm

      I have CIDP dx in Oct. 09. Have been only on IVIG since. I am going to a neuromuscular specialized neurologist. But he referred me to the MDA clinic in California in Sept. 2010; so they can manage my IVIG therapy. The MDA doctor examined me, took down history & physical & did another Nerve conduction/EMG test.The clinic really haven’t done anything different than my regular neurologist. In fact, the MDA doctor wanted to lower my IVIG from 0.4g/kg to 0.3 gm/kg. I was doing pretty good strength wise. I was getting 25 grams (am getting a little more than the 0.4 gms/kg) every 10 days. She wanted to decrease me to 16 gms (0.3gm/kg) every 10 days. I thought about it and called the clinic back stating that was too much of a drop in dosage!! They never called me back to discuss my lowered dosage & I don’t think they even called my regular neuro doctor to discuss my clinic visit. In the meantime, my regular neurologist had decided to change my IVIG to 25 gms every 2 weeks.
      So, I’m thinking, why am I going to this MDA clinic for? They’re not doing anything different. I don’t think they have “specialized powers” compared to my regular MD. I am not impressed with them.

    • Anonymous
      April 18, 2011 at 6:39 pm

      IVIG is only as good as how it’s prepared and given…it does NOT affect weight, bone strength & growth, or other systems as do some steroids…
      And, yes, it can be poorly ‘kept’ and administered? But I believe most folks here know of the warning signs or have experienced some adverse affects of infusion, be they too fast or wrong brand or reactions of some types. I think that the odds of any reaction let alone ‘dying’? Are one in well over 4,000? Likely the odds are even higher to NOT die from an infusion than many other things in life.
      As for safety? Mad cow is an old and very dead issue…gone in the very earlly 2000’s! Just go and look up any blood bank’s application form these days… Then check out the FDA’s rules and regs for ‘blood products’. They are extensive and VERY controlled.
      Most infusions ‘clinics’ in my region are either thru doctors offices or hospitals. And I’ve also read MY STATES’ rules and regs as to how they are licensed to run the administration of our ‘blood products’ into US.
      To be honest? I’d likely rather go and get an infusion at an outpatient dialysis clinic than a MDA clinic? An MS clinic? Maybe, tho they no longer ‘experiment’ using IVIG, other products are infused in such places… But, that is one person’s opinion.
      Good luck one and all! It’s such a cloudy fish-bowl out there.

    • Anonymous
      April 18, 2011 at 9:06 pm

      I think IvIg is wonderful for many or most. Unfortunately, it did not work for me and I got multiple blood clots from it. It included 3 in my left leg and multiple in both lungs. I would never tell some not to try it- just like flu shots—they’re good for some and terrible for others. But I believe that it is certainly “unlikely” for most to have reactions.