APS Plus another autoimmune disorder!... - Hughes Syndrome -...

Hughes Syndrome - APS Support

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APS Plus another autoimmune disorder! Plaquinil???


Well Mary now I have no choice, I must see eye doctor! Dr.Erkan just cald me and told me I also have Rheumatoid Arthritis! I had JRA, but thought I grew out of it! He wants to see my sisters bloodwork also! He says Olaquinil will help my Rheumatoid Arthritis also! Says since I have macular degeneration in one eye I must get approval to go on Plaquinil! What does Plaquinl do to ur eyes! I'm a bit afraid! I refuse to go blind too??? I'll check it out too, but I just can't understand this! He also WANs me to go and get genetic testing! Said I have a lot of genetic things going on! I must see 3 mor docs! Vascular, heart, Hemotologist, and of course Eye! I'm about to just call all this stuff off! I don't wana know anymore! It's too much to swallow! Sorry I'll perk up anytime now! I'm just way too overwhelmed! Do I go to a genenecist??? He said go to my Hemotologist and after I see all them we will get together and try to help me! I just don't know anymore! Bless you all! In need of advice???

8 Replies

Lots of us have many conditions, I collect mine as a hobby. MaryF

Debbweb01 in reply to MaryF

Thx Mary I know I'm just overwhelmed! Thought I grew out of it!!!

Awe thx so much as usual you and Mary are great for my mind! Thank you! Godspeed


My Rheumatologists tests me every 90 days....and I go for an eye exam every year...6 years/Plaquenil and so far so good.....It is important for your Rheumatologist to get a

"base line" reading for all of the "factors"/inflammation/indicators of all Autoimmune Disorders (if we have one we are prone to others....Autoimmune DIsorders are basically "one condition"....the way I look at it ..if "normal" is our immune system running a 30 miles per hr our runs at 60.....and the Immune Process can "decide" to attack our blood or any other part of our body)

Once your MD has a baseline ...he can monitor for fluctuations...up or down or the same


re: tests.....by observing changes your Rheumaologist can treat(or not..just watch) a condition before it become serious....in my case.....aspirin + plaquenil has prevented clots and/or possible stroke....and

Been to a geneticist sister too. It's only bloods. Surely you must be used to giving blood by now?? It's interesting lots of problems come from our parents. My sis and I have a different dad. So were blaming our mum God bless her. We can't tell if it started with her cos she's not with us anymore and granny not here either. My aunt refuses to be tested but my uncle has gone. So if he has it we find out if it came from granny or grandad. Only 50 per cent get bhd. But me and sis have it. Don't worry like I say it's really interesting stuff x

Yes it is, but Dr. ERKAN suggested I get genetically tested cuz I have lots of inheritable diseases going in! Ok so I have APS, maybe Sojerns, and now confirmed Rheumatoid Arthritis! He wants me to go to 3 more docs then go bak to him with results and figure me out! Right now I won't do or have any of it! I've been to NYC a few times now! I looked up Geneticists! All in NYC! Not ready to deal with it all right now! It's enuf my sister has it and now wen I thought I grew out of JRA, I have RA! I shouldn't be surprised! I wanted to go to Rheumotologist cuz my hands were giving me lots of troubl! Pain and swelling lately! They wana put me on Plaquinil for APS&RA! Ok so I'll go to eye doc and c if he'll let me due to Macular Degeneration! Plus be tested for Sojerns! Right now I can't afford all these doctors cuz I must meet my $5500 deductable! Obama really messed me up! I'm one of those that got lost in the debacle He Caused! So I must wait anyway! My mind is too OVERWHELMED NOW! Been upset all morning! I'll get bak to me cuz I always shake it off and fight again, but too much now! I'll hibernate for rest of winter! In April I'll come back and go and run and do!!! Thx for you great reply! Yes it's just bloodwork and maybe I'll do it wen I can! I thank you so much for your input! You put it into perspective for me! Godspeed!

Debbweb01 in reply to Debbweb01

Yes I've always found genetics very interesting! I've always thought it all comes from ur genes! Good, bad, the ugly! Very interesting! I'm not so sure I want to know anymore tho! But like Luisa said it give the doctors a baseline and it is only bloods!!! Lol... I've already calmed down! Thx for all of ur inputs! It's so greatly appreciated!!! GODSPEED!

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