Update and a big thank you!

I realized I haven't posted in a while and thought it was time for an update and a big thank you! I am in a much better place both mentally and physically than when I made my very first post here, and a lot of the mental stability is because of the support and information I gained from reading through the forums here! Thank you all for that!

As for how I'm doing these days. I am a lot better, not 100% but improving. I ended up having to change primary care doctors due to insurance issues but that turned out to be a blessing in disguise. My new doctor has been phenomenal at getting my care switched over to his office. Even better he knows a good deal about APS and is working with my Hematologist to make sure I'm getting proper care. I also changed Hematologists as the first Hematologist was not a proper fit, so I sought out one that has experience treating APS. He recommended my INR be raised to 2.5-3.5. At my last appointment he tested my Cortisol levels and I should know those results later this week. He also filled out the paperwork to get me set up for self testing yesterday and I faxed that back to the company, now I'm waiting to hear back from them on what my insurance will cover and what I will have to pay out of pocket.

I started Plaquenil in January before switching PCPs and the new doctor supports this treatment and is continuing me on this as well.

My branch retinal vein occlusion is healing well and my Ophthalmologist said the monthly monitoring can stop so I do not have to see him again until June unless something new comes up.

All in all things are starting to calm down, and with less anxiety, and stress, life I think is going to start becoming more normal again, at least somewhat!

I will be adding a Rheumatologist to my team in March as well. My Hematologist wants me reevaluated by him fully given I have a family history full of lupus and RA and other autoimmune conditions. I was tested back in Dec. but came back negative and my old Primary said that was enough for him to declare my APS Primary at that point. Not to mention I think he will be a beneficial member of my team given I have an autoimmune issue that is causing me joint pain and other issues.

12 Replies

  • Great to hear your news, and thank you for taking the trouble to give us feedback, is is good for us to hear that, lots of people contribute on this forum and as administrators, (all unpaid) volunteers we strive to help people achieve the best outcome with the peer support on here. MaryF x

  • Mary, you are welcome, and Thank you for answering my first post, it really did help. You guys do an amazing job I hope you all know that! :)

  • Thank you, nice to know that you think that, we do our best to get it right and also strive to raise issues that concern people who write to us, all the best to you. MaryF

  • Hi

    I agree with Mary, we like to hear how people are getting on and your story is very heartening.

    Dave x

  • Dave, Thanks, I am happy to be in a place to be able to share something positive. :)

  • Great to hear you are doing so much better - sounds as if your team is coming together and working well as a team should -- where in the states are you-- i may have asked before but thats my brain ???????? JET here in N.H.

  • Jet, I am in Charlotte, NC. I have a pretty amazing medical team that I am very thankful for! They have helped a lot in getting me to where I am today.

  • Dr. Ortell @ Duke University -- is an outstanding Dc. with APS - there is also a woman Dc. there that is considered one of the best with woman.I can find her name i have it some where ???? It's so good to hear positives . So happy for you.

  • I am familiar with Dr. Ortell, and should I need an APS specialist he is the one I am keeping in mind, but would love the name of the woman Dr if you happen to think of it! Duke is about a 3-4 hours drive from where I am, but you do what you have to do in some cases. Right now my doctors seem to have a good handle on my care though so hopefully I won't have to make a trek to Duke any time soon. :)

  • Dot have you tried going on line to Duke -aps - i have 5 appointments today so won't be back till late - and if you haven't found it by then,i will start my search for you -- -- jet

  • Jet, I was able to find a list of several doctors out of Duke. There were a few female doctors that were listed. So should I ever need to go to Duke I will have no trouble finding a specialist that knows about APS! But for the time being I am comfortable with the level of knowledge my PCP and specialists have on it. They have all been pretty amazing and very helpful at helping me understand my condition.

  • And you have us at your beckoning call !!!!! There is one woman in particular that i did some research on and i do have her name and i will find it because i need to do alot of searching for myself now for a few reasons. will tell you later when things are more secure and definite.-----jet

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