thal minor and autoimmune diseases

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thal minor and autoimmune diseases
« on: August 03, 2014, 07:26:07 PM »
My husband (DH), mother-in-law (MIL) and her sister, as well as my 2 daughters are all thal minor, although MIL has been dx'd as intermedia within the last few years as she has difficulty maintaining HgB above 7 consistently.  The girls are only 6yo so we give a multi without iron (genetic testing indicates Beta zero). DH was dx'd 6 mo. ago with ankylosing spondylitis about 6 mo. ago via fused sacroiliac joint on x-ray. MIL has myasthenia gravis and MIL's sister has Crohn's. MIL was on steroids but now in remission. DH is on etanercept (Enbrel) injections weekly. He has low T (injections for that), low B (injections for that), vitamin D, magnesium, folic acid. He has had some side effects from the Enbrel that caused congestive heart failure type symptoms (swelling and heart palpitations, etc.), so he takes Lasix intermittently to get rid of the swelling and when that occurs he takes potassium too.  Last set of bloodwork indicated his HgB is falling (around 13.7 a year ago and 10 now). I want to suggest wheatgrass but don't want it to counteract the effects of the Enbrel which according to DH causes at least a 25% reduction in his pain levels. He had encephalitis as a child, which resulted in some damage from the swelling, a coma and having to learn to walk again, so not sure on memory issues whether it is tied to that or thal minor. Anyhow, my question for Andy (or others) is, do you see or have you seen many cases or studies on thal minor (particularly beta zero) and auto immune diseases?

TIA

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Offline CatherineM

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Re: thal minor and autoimmune diseases
« Reply #1 on: August 08, 2014, 02:33:30 AM »
As your husband has ankylosing spondylitis and there is family history of Crohn's.  Have the rule out Crohn's Disease as the possible cause of the falling HgB.

Ankylosing spondylitis can occur on its own and it also occurred as a EIM of Crohn's Disease.

Regards

Catherine

Re: thal minor and autoimmune diseases
« Reply #2 on: August 10, 2014, 01:49:01 AM »
Thanks Catherine. Already scoped up and down multiple times.  No Crohn's. He did have an ulcer, but that was healed 4 months ago. I'm hoping dropping HgB is either side effect of meds or due to chronic disease (the AK).

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Offline CatherineM

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Re: thal minor and autoimmune diseases
« Reply #3 on: August 23, 2014, 07:35:03 AM »
Have done a MRI to check the small bowel?  Maybe a faecal calprotectin test?

My daughter has Crohn's which is not visible in scopes as it starts 20 cm above where a colonscopy can reach.

 

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