Study of Allergy drugs for DVT’s

[dogtail]

Saw this today concerning DVT’s and thought I would post it.

medicalnewstoday.com/articl...

[KellyInTexas Administrator]

Thank you very much. This will be big news I believe in the world of APS. It is already being looked at in the UK ( neurology and hematology) and in the USA.

Dr Afrin ( NYC based Hematologist) told me that mast cell activation syndrome can cause direct changes to the clotting cascade resulting in clotting. It can even Activate APS antibodies.

Dr Jill Schofield of Denver Colorado has a specialized focus on APS and MCAS . She does highly specific testing for it and reminds patients it’s early days, but the tests are targeted. This is not hit or miss science, but can be trial and error , patient by patient tailored and disease “combo” driven treated. Sometimes Ehlers-Danlos comes to play, and often times dysautonomia, APS, Sjogrins, all the players are at the table. Again, it’s not a one size fits all- like APS is not a one size fits all, because of the different co morbidities involved. ( two or more organ systems have to be involved to meet criteria for MCAD.) But I do believe that far more of us have MCAD than previously considered- I think this is possibly going to be a very big deal- and very easy to deal with. I’m very hopeful!

# themissinglink?

[dogtail in reply to KellyInTexas]

We can only keep our fingers crossed ! You mention Dr Jill Schofield from Colorado-I thought I read where she took a leave of absence-. Maybe she wanted to spend more time on research.

[KellyInTexas Administrator in reply to dogtail]

She’s open again.

[dogtail in reply to KellyInTexas]

Thanks Kelly!

[KellyInTexas Administrator in reply to dogtail]

Center for multi system disease on Lowrey streeet in Denver, Colorado.

Her clinic manager is Patricia Cameron.

She does not accept insurance , so you will have to sell your kidneys on eBay to finance. Too bad we have crap kidneys😂

[Yllek]

I find this article very interesting as I myself have seen a Dr this week who specialises in mast cell and APS.

I have had tests to see if I have it and have been told ‘it’s very possible’ by both my specialists who I have seen this past week.

Interestingly, I developed asthma this year and my Drs think this is a big clue in a mast cell disorder. I was started on an asthma drug which is also a mast cell stabiliser and the results have so far been quite dramatic. I feel the best I’ve felt in a long while. A second mast cell drug has now also been added and we will watch and wait to see if my improved state remains or whether I’m just going through a good spell!

My INR has slipped this week and I would usually be very symptomatic and so far I am not. However, caution needs to be had here and it may just be due to low APS antibodies in me at the minute. It’s very early days with my mast cell ‘probable’ diagnosis and the treatment I’m on but I am optimistic I’m on the right path and have excellent Drs who know how to treat me.

Thanks for posting this.

Kelly

[KellyInTexas Administrator in reply to Yllek]

However, Kelly... I have always had the following question, ( and I posted it here on the forum very early on):

“Do APS antibody levels directly corolate with how the patient feels over all?”

I’ve read mixed articles. Most say no correlation and for your particular situation right now on the mast cell stabelizer ( inhibitor?) I hope this is true.

I myself find absolutely no correlation between my numbers / antibody activity and clotting propensity. Just the INR, and even that has its own conversation regarding immune modulation- ( which we’ve had😉)

[Lauren2121 in reply to KellyInTexas]

Personally I’ve noticed that my antibodies go up if I have an active infection. But I don’t have a ton of data to back this up.

Yllek - would you be open to sharing who your APS/MCAD specialist is?

Thank you!

[KellyInTexas Administrator]

That IS an interesting question. Or even for those of us on warfarin who bridge on the odd occasion.

[Wittycjt in reply to KellyInTexas]

Are you not doing lovenox every twelve hours now?

[KellyInTexas Administrator in reply to Wittycjt]

My Hematologist did not agree to Hanna Cohens recommendation. He felt it was not tried and true as the main stay of care in severe APS cases. ( I did mention this to you in a thread a few days ago.)

Possible modulation of immune system- but best left to Rheumatoligist he said.

Every doctor is ,” interested in the possibility” but all point the finger to the other diciplines to actually do it. ( they are worried to tank the immune system.)

He would rather run the INR a little higher if needed- up to 4.5

[Wittycjt in reply to KellyInTexas]

I must of missed it. As you know the lovenox every twelve hours is what I have been doing successfully. As long as what your doing is successful that’s all that matters, good luck🤗

[KellyInTexas Administrator in reply to Wittycjt]

Easy to miss- no worries. I’ll post about my appointment with Hannah one day soon.

My Austin heme said yes- he would have dosed me at every 12 hours as well. Plus added aspirin.

Hanna wanted me 60ml every 12 hours plus a little aspirin. I’m 112 lbs.

( she said 40/ 60 but then said... probably it will go up to 60 / 60 because at 50.8 kg you are right on that weight threshold of bumping up to 60/60.)

She sent me to Toby Richards vascular surgeon- it was determined all cots were indeed new- which my scans in Texas had shown. So she said warfarin was a fail.

[Wittycjt in reply to KellyInTexas]

If warfarin was a fail? What do they have you taking?

[JessicAZ]

I wonder if allergy shots tie into this at all?