Sunday, March 8, 2015

GoodPastures Question answered

Today I received this comment to the blog:

Hi Emma, i've just had the first set of Lemtrada infusions and now in second month of recovering immune cells....i've just started reading your blog (thank you!) and was confused about Goodpastures.

You mention that it needs to be detected and treated within 3 days of onset, and that we are obviously tested for bloods and urine only once a month...so your suggestion to test urine at home makes sense.

However i can't find online where it says this about Goodpastures, only that it may occur over weeks or months. Can you post your reference for this, i'm keen to send it to my neurologist so that i can request details for how to test my urine and what to look for. Many thanks!


Here is the reply:
I am traveling but will get you a good link when I return. My internet is slow today and web surfing difficult.

In the meantime this is a good overview of Goodpastures: http://www.kidney.niddk.nih.gov/kudiseases/pubs/goodpasture/

Are you in the US? You can buy urine testing strips to test yourself- look for a test that tells you the protein and glucose in your urine. Usually this is on a 10 test strip. I can get 100 tests for about $10-15 USD.

Note that Goodpastures is extremely rare but also the most serious of the possible adverse effects (AE). Also science is currently working on several ways to de-risk this AE. One is a med that you take at the time of Lem administration (too late for you and me) another is low dose Rituximab which I did for another issue. Bring this possibility up to your neuro. Most are not doing it but some are more adventurous than others.

Also note that the earliest onset of GP is at least 4 months after your second dose, but more like 1-2 years after your second dose. So you are not in the risk zone for GP now.

Testing urine twice a week is a cheap and easy habit to get into. You can do it from home and might provide peace of mind. If you do go ahead with it you should make a chart for yourself and log your testing so if something does go awry (testing strip is also useful in detecting a bladder or urinary tract infection, common in MS) you have a chart to show your doc.

Most docs will be aware of the testing time frame for GP. So you probably don't need to have a reference for them. If you want to test yourself it should be something they would support.

If you cannot get testing strips in your country they are available in the US as over the counter products- if you can ship them from an online source. I know a patient in Russia that was able to acquire them locally.