Ever asked ‘how long for ivig to be effective?’ and, how to measure results?
AnonymousApril 20, 2011 at 8:25 pm
In an NIH Public Access article entitled Dynametric Assessment in CIDP (by)
Peter J. Dyck, M.D.
Note- there are two Dr. Dyck as far as I know. One is P.J. Dyck and the other P.J. B. Dyck. Be careful to avoid confusion.
“[I]They found that muscle force decreased by about 15 percent when treatment was withheld, and it improved by approximately 6 and 12 percent by days 5 and 10 after restarting IVIg treatment.[/I]”
He goes on to say “[I]Although our study was designed to test for difference in response between PE and IVIg, the study clearly shows that manual muscle testing and composite motor amplitude measurements can be used to track severity of CIDP and responsiveness to treatment[/I]” and then,
“[I]In adjusting immunotherapy to response, it is therefore helpful to have a record of a single sum-score value of muscle weakness or neurologic signs and symptoms which can be compared to the same score assessed at previous occasions.4[/I]”
Sounds to me like, when you read the whole article, your Dr. should measure your ‘strength’ in some way without first asking if you are stronger or weaker. And, whatever measurements are used should be consistent in order to track and adjust your treatment.
April 21, 2011 at 8:25 am
We get a pt eval yearly. The hand is measured with a dymometer (the squeeze test) measures pounds of pressure. We do it three times on each hand. The legs, ankles are a little less scientific, a series of bending stretching measured by distance and a step that we go up/down. Regarding the imunosuppressants and measuring weakness compared to ivig or overall benefit of the drug. I think any of that data would be skewed, in that imunosuppressants have a labeled side effect of muscle weakness, so how can one measure if the cidp is the culprit or the drug. Thank you Yeuhan for the research. Kelly and I were just talking yesterday about people sharing data/info, or not. In the begining I used to be on here daily doing that, because of catastophic evnts that just keep happening in my family and the tension and change that happened on the site some time ago I have stopped contributing. I feel bad about that for the new people that come on, however, I am sure there are plenty of people who are glad I have left in an “active” capacity. Keep up the good work Yeuhan, the research and sharing and formulating thoughts takes so much time!!! I really miss With Hopes input and data/research as well! Oh well!
April 21, 2011 at 8:04 pm
yes i agree Yuehan–you do excellent research—thank you. as well as dawn and emilys mom—i always learn from the 3 of your posts : ) I never knew that muscle weakness was a side effect of the ivig—isnt that sort of contradictive since we are having ivig to stop nerve attack and increase strength??? learn something new here every day; ) lori
AnonymousApril 22, 2011 at 5:03 pm
[QUOTE=Dawn Kevies mom]… Regarding the imunosuppressants and measuring weakness compared to ivig or overall benefit of the drug. I think any of that data would be skewed, in that imunosuppressants have a labeled side effect of muscle weakness, …[/QUOTE]
[QUOTE=Lori222]… I never knew that muscle weakness was a side effect of the ivig—…[/QUOTE]
I understand the meaning, as used above, to be that immunosuppressants, things like prednisolone, ciclosporin (cyclosporine), tacrolimus, and cytotoxic agents (azathioprine, chlorambucil, cyclophosphamide, methotrexate) [B][U]not IVIG[/U][/B] may cause muscle weakness.
On the other hand, I believe Dr. Dyck’s comment ([I]”In adjusting immunotherapy to response…”)[/I] in this case, at least, refers only to his comparison of Plasmapheresis (PE) to IVIG, both of which are immune system therapies.
Oh, shucks, I better go read it again.
Thanks everyone for your kind words. I’m blessed to have the time for this new hobby!
April 23, 2011 at 3:04 pm
makes sense to me yuehen—i noticed a drastic weakness from the prednisone on the 4th dose—-have never felt like that from the ivig.
I too believe strongly in adjusting the ivig as per personal response. i have been trying to explain that to my neurologist since starting ivig. that is what im hoping will come of my visit to mayo to see dr dyck—that he will give her recommendations to do just that. We all metabolize at different rates which only makes sense that we would need different amount of ivig per response—not just a standard amount for everyone. If we could only just set up our own treatment plans–lol—we’d all be better by now!! Lori
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