IV Therapy safe with APS?

[prj789]

I am having trouble getting help with the next phase of my disease. I have been in a 5 month funk with micro clots which has caused fatigue and all the symptoms that tag along with APS. I can't find a doctor who understands APS very much beyond the name. It feels like I am going backwards 22 years trying to my beginning symptoms with very little help. I take 15 mgs. of warfarin, 600 mgs of plaquinel and 81 mgs aspirin daily. I am looking into functional medicine and wondered if anyone has used IV therapy with this blood clotting disorder with any success?

[GinaD]

there is a relationship between gluten sensitivity and APS that was noticed by the physician who first described our ailment – Graham Hughes. You might try gluten-free diet for a while and see what happens in my case after going gluten-free all my APS blood markers became normal.

[prj789 in reply to GinaD]

Thank you! I totally agree and have found that so helpful. I am mostly gf but I really need go to Entirely gf.

[GinaD in reply to prj789]

And or consult with a dietician as there are other common but undiagnosed allergens. And some not so common— I recently found out why I react to a lot of injectable meds and lots of skin treatments. I’m allergic to polyethylene glycol aka PEG.

[prj789]

Thanks for your help.

[Skyllark]

What IV Therapy are you thinking of? There are a few, PLEX, IVIG, Rituxan?

[prj789]

I should have been more detailed about the type. It is vitamin therapy.

[Jumper99 in reply to prj789]

I would be concerned that vitamin therapy would boost your immune system. Good for most people but not for people with an autoimmune disease. It’s our immune system causing our illness and therefore our symptoms so strengthening the immune system doesn’t sound like a good idea. This is pure guesswork on my part as I have never heard of anyone trying it.

[prj789 in reply to prj789]

Thanks for your imput.

[MaryF Administrator]

Hi whereabouts are you located as it is best to have a specialist that can help you, who has up to date knowledge, it would also help your GP look after you. Don't start on any diet change or supplement without checking in with your professionals. I went the functional medicine route due to extreme allergies and lack of help. I thoroughly checked out my Thyroid and B12 as I was not prepared to be given a chronic fatigue label or the dreaded Fibromyalgia... when I tested privately with a reputable company it showed up both of these, plus low vitamin D and low Iron. did not cure the conditions but made me manage things feeling considerably better all round. MaryF

[prj789 in reply to MaryF]

Thank you so much for your guidance Mary. I live in Austin, Texas and am trying to find a doctor who has some knowledge in APS. I will also do what you suggested and have my thyroid checked as well as vitamin D and iron.

[MaryF Administrator in reply to prj789]

Also detailed B12 profile, KellyInTexas can you advise on consultants? MaryF

[KellyInTexas Administrator in reply to MaryF]

Thank you- I reached out to her a couple of months ago- not sure she saw it. I recommend a specialist.

[MaryF Administrator in reply to KellyInTexas]

Great, I guessed you might have done. MaryF

[KellyInTexas Administrator in reply to MaryF]

I advise any internist who liaises well with a rheumatologist.

[MaryF Administrator in reply to prj789]

I will also add that in some cases as well as small doses of steriods also progesterone has been used, but you have to have a Obstetrician with full up to date working knowledge of Hughes Syndrome/APS. MaryF

[prj789 in reply to MaryF]

Thank you for the information Mary.

[prj789]

Thank you Kelly for providing me with the name of a Hematologist near me. My brain was in a real scramble with all the events and I did miss that but found it after you posted you sent it to me. We are away from home but as soon as I return I will be making an appointment Thank you so much!!

[KellyInTexas Administrator in reply to prj789]

No need to apologise (❤️) - just glad you’ve now seen that I responded. This APS does scramble the brain.

I always say, “I hear our brain require properly oxygenated blood to work right…but I’m not sure, I can’t remember right now, my blood’s too thick.”

I hope it’s a match, Daron Kock ( spelling?) In round rock. If not, I’ve got a very good one now in Kerrville. ( he also goes to Fredericksburg and Uvalde- once a week.) with Texas oncology. Dr Anil Singh

[prj789]

Yes, thank you!

[user666]

A high fiber diet and daily exercise is what I credit my better health to. Since starting this regiment my positive ANA and Apla panel have become negative and I have felt great for the last five years.

[prj789 in reply to user666]

Thank you for your response. I love the imput. Does your fiber come from mainly fruits and vegetables?

[user666]

fruits, veggies, lots of legumes and bran too. I have no issues with glutton so eat all bran daily

[prj789 in reply to user666]

Ok thanks. Gluten is a problem for me but I will do more research to get ideas for high fiber. I already each fruit and veggies. I will add in legumes. Thanks!