A diagnosis

[Clsmith]

Just back from the doctor. After all the blood work and the ultra sound, he says I have ITP. Has given me dexamethasone to take. And will see me again in a month. Is this diagnosis anything that should be discussed here, or do I need to find another group?

Thanks for everyone's concern and advice in the past.

[Peggy4]

Hmm. Have read about this while researching CLL. I only THINK that it is something that can happen as a secondary thing to CLL, caused by the disease, an auto immune response. I know that it is somehow linked so I think this is just the place to ask

Peggy

[AussieNeil Administrator]

I take it this is good news and you don't have CLL? You may still find some useful information here as we do have some members who have been treated for autoimmune complications such as ITP and many of us have learnt to live with low platelet levels, but be aware that most of the discussions won't be relevant to you.

'Patients with B-chronic lymphocytic leukemia/small lymphocytic lymphoma (CLL) have a 5–10% risk of developing autoimmune complications which primarily cause cytopenia. These autoimmune cytopenias can occur at any stage of CLL and do not have independent prognostic significance. The most common autoimmune complication is autoimmune hemolytic anemia (AIHA) with a lower frequency of immune thrombocytopenia (ITP) and pure red blood cell aplasia and only rare patients with autoimmune granulocytopenia.': ncbi.nlm.nih.gov/pmc/articl...

You might find this post useful in helping you differentiate ITP caused by CLL and other causes: mutated-unmuated.blogspot.c...

After reading the above, you can appreciate that it can be very difficult to work out to what extent lowered blood counts in people with CLL are due to the impact of CLL on the body (the CLL enlarged spleen filtering out more platelets and red blood cells and bone marrow infiltration reducing blood cell production) and auto-immune complications from CLL. Many of us find our autoimmune complications improve after treatment for CLL, but you won't be interested in going to that extent!

Given you'll be interested in tracking the effectiveness of your prescribed dexamethasone treatment, you might find these sites helpful, both of which contain spreadsheets so you can track your blood counts:

cllsociety.org/toolbox/keep...

cllsupport.org.uk/cll-sll/s...

All the best,

Neil

[Clsmith in reply to AussieNeil]

Thank you. I will check out the sites.

[Cllcanada Top Poster CURE Hero]

You might request a test for h.pylori...a gut bacteria... there is some thought that it has a relationship to ITP in CLL patients...

There was research on this perhaps 5 years ago.

~chris

[Clsmith]

Does that mean that ITP is in some way related to CLL? I still have so much to learn.

[Cllcanada Top Poster CURE Hero]

ITP is an autoimmune disorder associated with CLL in some patients... it is considered a complication... the gut bacteria h.pylori, may be a factor and is worth testing for...simple breath or blood test,

More here on ITP

nlm.nih.gov/medlineplus/enc...

More on autoimmune cytopenias, and ITP discussing screening for h.pylori bacteria

onlinelibrary.wiley.com/doi...

[AussieNeil Administrator in reply to Cllcanada]

Chris, I also have a problem with the Wiley reference (yes I know this is a common problem with Wiley), even when editing your reply to get the full URL. I get the error: 'Forbidden You don't have permission to access /store/10.1111/j.1365-2141.2011.08707.x/asset/j.1365-2141.2011.08707.x.pdf on this server.'

Hope you can fix it thanks,

Neil

[Cllcanada Top Poster CURE Hero in reply to AussieNeil]

The work around is to use the doi number... sorry about that...this link works...

onlinelibrary.wiley.com/doi...

[Clsmith]

Thanks for this help. I couldn't open the online library site.

[Cllcanada Top Poster CURE Hero in reply to Clsmith]

Try this link... this is an important paper by the Spanish CLL researchers..

onlinelibrary.wiley.com/doi...