Saw a new MPN doc couple weeks ago who found I have a very high ACA IgM, 104 was my value and reference range is 0 to 12. Also have an elevated LDH. Suspected that I may have APS syndrome (some form if it) but I have to retest in 12 weeks to see if it’s still high. In the meantime he advised that I try two baby aspirin daily to break up any micro vascular clots. Since then I learned ACA IgM is related anemia more than clotting.
Ended up switching back to HU daily also and stopping Rux after about 2 months as the Rux was making my legs feel very hot. So it seemed the Rux May have been making my neuropathy worse than HU. Also wondering if Rux made ACA IgM rise. My value for it a year ago was 25.
Hoping the ACA IgM and LDH findings lead to a diagnosis and possible treatment for my neurological issues.
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George1976
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I see your prior posts in neuro troubles with PEG. Sorry to hear it was even more with Rux.
APS is an autoimmune disorder from what I can find. Your prior comment "since my last (IFN) dose caused extreme burning in my lower legs" could be me although my specific symptoms were different (blacked out banged my head and misc badness) I had warnings before that last fateful dose. I've now got Sjogren's which includes lots of neuro issues. (the flu vax was the proximate trigger for all)
Rux can theoretically help with autoimmunes, and is being studied for that. But it's not yet known which ones it will be best for. Is your leg pain discomfort better now?
We're starting to see on the forum enough anecdotal stories of these troubles that suggests much closer monitoring of symptoms while on IFN may be indicated. The label does not provide much guidance there.
My experience with Neuro and Rheum Drs is these are often black arts without the clear sign posts we have with MPNs. But many conditions do have treatments.
Some improvement in legs back on HU but it’s not night and day better. Could just be progression of neuro issues is unavoidable now. Maybe the biggest difference being off Rux is return of libido. Also have gotten some improvement in flu like feeling going back to Hu. Platelets were not controlled on Rux for me and I didn’t want to keep increasing my dose as it was also making me anemic at 15 mg x 2 daily.
Black arts is right especially neuros. Ivig was strongly recommended by one I saw who called what I have immune mediated. Another neuro said ivig could damage my brain. Another neuro said it’s not immune. Seeing another neuro in July hoping for some diagnosis which is next best thing to an effective treatment. It’s the weakness that’s causing me the biggest grief. Early on I had basically normal sensory activity while weakness was coming on.
Agree there are potential treatments. Id like to try something if it’s safe. Continuing progression without doing anything is beyond frustrating.
I feel kind of stupid to admit it but I've had 9 EMG's. One or two is enough. My problem is I saw a few different neuro's and they like to do their own. They say I have axonal damage, not CIDP which supposedly responds better to IVIG. Now that its more likely my immune system is playing a major role I'm going to push for treating it and not my nerve damage. If I get lucky the nerves will begin to heal.
That CDIP is familiar. I asked for a 2nd EMG because I suspected it changed in a few weeks. In fact my demyelination seen on 1st one was not there on the 2nd (same Dr) 3rd one also showed none.
do you think the Rux is hurting you? One other reason I stopped it is because there was no practical reason for me to take it since I’m CALR positive. It was a guess. And I see research showing bodily interferons and jak-stat pathways share some common mechanisms. So my hunch is Rux may be wrong for me since I had a bad reaction to peg.
My troubles started with IFN and the flu vaccine, and I now have Sjogren's from these, a nasty autoimmume. Rux is usually the fix when IFN makes trouble, and is being considered as a therapy for Sjogren's. So far Rux is working on my Jak2. Doesn't mean Rux can't make trouble, but I'm hoping it's not.
Elevated IFN-a is implicated in many autoimmunes, so it could follow that taking it as a drug can add to existing auto immune risks. Some autoimmune therapies specifically target reducing IFN-a.
it’s interesting to note that for about a year after neuropathic issues started in 2020 I had dark red to purple toes. My feet are very pale now since taking baby aspirin twice a day.
It sounds as though you have a competent MPN Specialist on board there. There is definitely some type of inflammatory process going on, hopefully, it’s just transient in relation to an infection or medication. However, if it persists it would be wise to consult with a rheumatologist. There are so many autoimmune conditions, and in many cases it takes time for them to reveal themselves.
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