Professor Graham Hughes' Blog August 2018

[MaryF]

Here is the link to the blog on the GHIC website: ghic.world/self-help/blog/a...

Mary F

[lupus-support1 Administrator]

Thanks Mary, I will repost LUpus Patients Understanding & Support (LUPUS)!

[MaryF Administrator in reply to lupus-support1]

Thank you very much. MaryF x

[Wittycjt]

A lot will be going on!

[JessicAZ]

Very interesting. The patient's story could be my own except that in the midst of ramping up of symptoms, I had a micro preemie - 1lb, 14oz - at 29 weeks. I was in the hospital for 29 days (starting at 25 weeks) and he was in the NICU for 69 days, so it was a very stressful time for obvious reasons. I know stress can bring on more symptoms and figured they would ease up once I got home. I'm eight months postpartum today and am still having trouble, particularly with visual disturbances, blurry vision, and dizziness.

I was on Lovenox and baby aspirin until a few days before my little one was born, then was switched to heparin injections. I stayed on Lovenox (though a lower dose) for six weeks postpartum. From about 26 weeks pregnant on, I started having very frequent ocular migraines and dizzy spells... but those symptoms plus a DVT in 2015 still isn't enough for my hem to approve a trial. He asked if it helped the symptoms in 2015 when I was on for six months post-DVT but that's not a fair comparison because I didn't really have other symptoms back then - and I expressed that to him.

Despite major pregnancy complications (I saw an OB, high-risk OB, and hematologist the entire time) my DVT, my hematologist - who is the only game in town that gets all the APS patient referrals - has also decided to keep me on low dose aspirin (one per day). I've had 4+ triple positive tests for LA and other antibodies and their presence has been consistent. I also recently had an MRI that came back clear.

Hem sent me to a neurologist to treat the migraines and just last week, she put me on beta blockers. I had a severe adverse reaction and am now on nortriptyline. It's too soon to tell what that'll do, but I feel more like my hem resists putting me on lifelong warfarin because of the risk and my age (32) than because I don't need it. I asked about a trial last time and he wanted me to see a neurologist before we discuss anything further. I'll the hem again in January.

I sure wish more doctors knew this disease as well as professor Hughes and his medical advisory team, do. It's frustrating because I already know I tolerate warfarin well and I understand the dietary limitations and the risks. But for the time being, I'm going with what my hem said to do, which is giving the migraine RX prescribed by the neurologist a chance to work. Hope I'm making the right call.

PS - anyone know the easiest way to get in touch with Dr. Hughes? Would love to share my experience and get his opinion.

[JessicAZ]

Thank you for your reply - definitely feels like an uphill battle and it’s difficult to know who’s opinion to trust.

I vetted the advisor list and found a couple doctors in the LA area in California that would be feasible for me to try and get an appointment with. Will see if any are covered by insurance and will keep you all posted. Will certainly try to get referrals from them to another well versed hematologist out here as well.

Thanks as always for the information and for your reply! Certainly helps to read about others experiences.