Hey All! Sorry I left you hanging in regards to all that blood work with the Hematologist. It all came back inconclusive regarding the reasoning for my continuing low ANC/WBC counts. At this point, since we cannot pinpoint a reason for this issue, it is being coined a Rituxan side effect. My team is split on this explanation, however. Half of my physicians think it is an underlying issue we haven't found yet and the other half believe Rituxan can have this effect for up to six months. Considering my last dose was 7 months ago, I have a difficult time feeling that this is in fact a Rituxan side effect as well. Truth be told we may never know. At the moment the low ANC/WBC count isn't harming me so I am not really that concerned. I'm technically not neutropenic, though I am hovering right above it. If I do dip into neutropenia my team decided they want to do a bone marrow biopsy - so let's just hope it doesn't dip. lol
In other news, things have actually been going really well lately! I started noticing fewer GI symptoms a couple weeks ago. I was taking my nausea meds less and staying better hydrated via mouth. I was wracking my brain for what could have caused this improvement and the only thing I could come up with is my weekly SCIG dosing. So, naturally, I started reading medical journals and clinical trial reports to back up my findings. Low and behold, Immunoglobulin treatments have been successfully used in patients with Gastroparesis and Chronic Intestinal Pseudo-Obstruction! (Why had this never been brought up before!?) I was only able to find a handful of reports (probably why it was never brought up) and one ongoing clinical trial, but the results were all overwhelmingly positive. WHAT A HAPPY SURPRISE! While none of the studies necessarily cured the small subset of patients, almost all found that their quality of life was improved and their ability to take food by mouth was more prevalent.
Here were the studies and one trial I found if you're interested:
So treatment for a completely separate issue, my Immunodeficiency, has lead to an improvement in my GI symptoms. I think that is pretty awesome! So far here is what I have noticed, my nausea is insanely reduced and I can take more by mouth. It is not always constant, and I am still not absorbing much if any of what I eat, but it sure is enjoyable! I started with soft things like cream of wheat and bananas and then moved to things like small bits of bread and mashed potatoes. I still have trouble swallowing, so things have to be relatively small/soft; I also haven't noticed any improvement in the GERD, so things cant be too spicey. However, anything is exciting at this point! I did notice that I am not gaining weight at all with the extra oral intake and (TMI warning) that my stool is very fatty stained and often has undigested food. So, while I don't think I'll be sustaining life without a tube anytime soon, I can now eat a bit "recreationally." Woohoo! I still require nausea meds most days, but haven't thrown up (not counting brief regurgitation) in almost a week! That's a record in my household. lol The only downside of being able to tolerate more orally is the risk of aspiration. *sigh* I woke up Sunday morning, after having some ice cream a bit too late in the afternoon, to horrible coughing fits and shortness of breath all day. So, I will need to be safe and limit my oral intake times and amounts to protect my lungs.
All and all, I think things are looking up! So are my SED rates, unfortunately... see what I did there? hehe But that is fine, while my inflammation levels may be up my quality of life still feels loads improved. Right now we are still iffy on what treatment, if any, to pursue. We have few options since almost all of them are immunosuppressants which is the last thing we want to be doing in my current state. It will likely all hinge on the results of my most recent PFTs. If they show a large decline in scores we will really have no choice but to return to immunosuppressants. We are also looking at TPE, Therapeutic Plasma Exchange, as an option which, while unconventional, has shown some promising results in Scleroderma patients. Let's just hope the PFTs are stable.
Once I get my results I will be sure to give an update. Hugs!
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