Update 18 - Survey Results Part 5

This is a very long posting, but hopefully the information on the comparison between GBS and CIDP for each treatment is worth it. The first two graphs are on the effect of treatments:

It is clear that IVIG is by far the most recommended treatment for either condition (118 for GBS & 143 for CIDP).  Yet Steroids are recommended much more for CIDP & Plasma for GBS.  The percent details for each are shown below:

The above do show the difference in the treatments more clearly than the first graphs.

Below are graphs for the effectiveness of each treatment:

These again show the definite leaning towards IVIG as the recommended treatment and how much more steroids are used for CIDP.  The point of showing the information is this way is that the actual numbers for certain treatments (e.g. GBS & Steroids - 20 & Immuno-suppressants - 10) is very low so the following pie charts may be skewed and not properly representative:

This chart shows that IVIG clearly has a significant benefit to the majority of people with GBS.  So it is not surprising that this is the most recommended treatment too.

Steroids do have some benefit, but the ration of major to none is very similar and the sample size is small, so can be affected by a few results.

Plasma has a slightly better success rate than IVIG, but I understand it is more expensive and difficult to administer (please note as I never had or was offered this treatment I do not know, so apologies if I have got this wrong).  It is clear that this is a good treatment against GBS.

Immuno-Suppressants have some effect, but as the sample size is small, this really has been impacted by one or two results.

Now we move onto the same chats for CIDP:

Again IVIG has a significant effect on CIDP as with GBS, with almost exactly the same percentage scores (spooky!).  This is proof why it is the most recommended and used treatment.

Steroids have a pretty good effect on CIDP, much better than for GBS, but there are still a significant number of people it has no effect on.

Plasma is much less effective against CIDP than GBS, but it obviously still works for a fair number of people (18 out of 33, just over half).

Immuno-suppressants again have much less effect against CIDP than GBS. though the number it is proscribed for are much higher for CIDP (47) against GBS (10)?

Obviously before deciding on a treatment other factors have to be taken into consideration e.g. potential side effects, ease of administering or availability of the treatments, other health issues..... Which I have not explored and these may have a significant bearing on the results/recommendations above.

From the above data it is easy to see patterns.  What I wonder about is why certain treatments do not work for some patients?  I guess we will never know..... or not from me!  More in a couple of weeks.

Update 17 - Survey Results Part 4

Again thanks to all those who filled in the survey I have over 410 responses now.  for those who haven't it is:

GBS-CIDP Survey.

The results below are about what was recommended and a start of the different effectiveness of treatments:

What these show is that IVIG is the most recommended treatment, Steroids are recommended to far more to people with CIDP and Immuno-Suppresants far more to people with GBS.  What I find interesting is the number of people who were recommended no treatments, as surely something should be recommended (or is that because like me after my initial attack treatments were discussed, but none recommended, so I didn't have any, but after my relapse either IVIG or Steroids were)?

The average treatments per person is also good indicator, it says to me with GBS at just over 1 once it was diagnosed the treatment recommended was deemed correct (whether it was or not is another discussion).  For CIDP at 2, the doctors were much more uncertain about what to recommend.

Below I look at the treatments generally and what impact they had on the condition:

This graph is of all treatments recommended and their effectiveness.  As you can see the majority were given IVIG and of those most saw a major improvement (I have the individual charts lower down).

The chart relates specifically to the level of improvement seen in having one of the recommended treatments. The was based on a sample of 350 people, as you can see some people must have had more than one treatment.  If I have the capability I may try and graph the number who have had more than one which was the more effective, though I don't think I have enough to sample from yet.

 The next five show the relative effectiveness of each specific treatment:

This clearly shows that IVIG as an overall treatment has been effective for the majority of people and as it was the major treatment recommended I suppose this is justified.Total treated 269 - 49% of sample.

 

What this shows is a complete uncertainty of whether they are good or not, just about all four quadrants are even, so are steroids worth it (especially given the side effects)? Total treated 121 - 22% of sample

Plasma also appears to have significant benefit as a treatment, though not quite as high as for IVIG.  Total treated 75 - 13% of sample.

Immuno-Suppresants, like Steroids, seems to be totally variable in effect.  In fact they appear worse than Steroids for no effect whatsoever. Total treated 59 - 11% of sample.

Other treatments make up the rest (30 people & just 5% of the sample) so the actual results can be swayed by just a few answers.  However some of these other treatments may be beneficial (they range from Pain Killers, to Cancer fighting drugs).

Please remember these are results from a survey aimed to assist people to make a better informed decision, rather than facts about what is advised for the individual.

Next time (in 2 weeks) I will be examining the treatments relating specifically GBS/CIDP and comparing how different treatments are effective or not......