Treatments for CIDP
In lots of people's opinion the current treatments are not cures, they just try and stop it getting worse. Yes by prohibiting the progress what caused CIDP may stop and things return to normal, but as it is not known how it starts, how is it known when/if it will stop?
HSCT - is viewed as a potential cure for CIDP |
There are a number of different traditional treatments "recommended" for CIDP, bearing in mind there does is an opinion among medical experts that there is no cure. The two main ones (that I either have real knowledge of or know people who have been through) are below, side by side for people to try and compare:
Prednisone (Steroids)
This is an orally taken anti-inflammatory drug that, boosts energy levels, but suppresses the immune system. So patients are more likely to catch other diseases. Also the side effects can be serious especially for longer term usage:
If you are on Prednisone for any amount of time getting off the drug is an increasingly serious issue and depression is regarded as being the most likely. The fact is that you can end up being on multiple other drugs to counteract the side effects and I was on four different medications on top of the steroids taking over 10 pills a day! The other issue for me was as I am diabetic my blood-sugar levels went haywire and this was very concerning (mind you I was not told of the potential side-effects when given the choice of treatments) The big advantage of Prednisone is that you can lead a "normal" life and just take pills, but you mustn't be on them for the medium-long term! |
IVIG (Intravenous Immunoglobulin)
This is an evasive treatment where for a certain period you are attached to a machine and antibodies are pumped into your system, that has been extracted from thousands of blood donors. The treatment usually requires a hospital visit every 2 to 4 weeks and lying attached to a machine for 4 to 6 hours, this can require multiple visits per treatment (e.g. over 3 days per 3 weeks). The dosage and time required depends on the individual patient and their ability to cope with the process. The actual impact of IVIG is that it provides the immune system with other targets to attack so your myelin sheath can recover. This seems to work for a certain amount of time, both in the 2 to 4 week cycle (whereby near the end the fatigue etc returns) and after the treatment has been administered whereby the improvements seem slower and the side effects more, e.g.:
IVIG is far more expensive and can cost up to £200,000 per year |
Conclusion
For CIDP that is stated to be a on-going illness, with relapses and remissions. Yes a number of people do recover and a very few get back to a normal life (see my survey results elsewhere in this web-site). Both the main treatments are not aimed at curing or even attempting to cure the root cause (statements are made that they do not know what causes it), they are simply hoping it stops and reducing the impact. What this leads to is that neither are actually any good in the long term and that the longer you are on them the worse the side effects will become.
What is required is a long term solution and in my opinion HSCT is the best option there is. However this is not the solution for everyone.
A more contentious conclusion is that through the GBS/CIDP Foundation (and others) does good work and so do Doctors, however they are funded by medical establishments who make billions out of repeatable revenues so they have no real reason to cure CIDP or MS or other chronic disorders.
For CIDP that is stated to be a on-going illness, with relapses and remissions. Yes a number of people do recover and a very few get back to a normal life (see my survey results elsewhere in this web-site). Both the main treatments are not aimed at curing or even attempting to cure the root cause (statements are made that they do not know what causes it), they are simply hoping it stops and reducing the impact. What this leads to is that neither are actually any good in the long term and that the longer you are on them the worse the side effects will become.
What is required is a long term solution and in my opinion HSCT is the best option there is. However this is not the solution for everyone.
A more contentious conclusion is that through the GBS/CIDP Foundation (and others) does good work and so do Doctors, however they are funded by medical establishments who make billions out of repeatable revenues so they have no real reason to cure CIDP or MS or other chronic disorders.