After a few trips to the urgent care only to have the doctors say they could not touch me and sent me to ER instead, my GP insisted I go to a Rheumatologist. Considering the lack of knowledge here in Oregon US, I felt it was useless yet I woke up with hope for some reason of the day of the appointment. Maybe it was because the let down of all the lack of support, felt maybe my odds would increase finally. They did!
I felt it was important to add this doctor into this message in case there was anyone in the Oregon US area that needed a Rheumatologist that seems to have a good grip on APLS. I sat for two hours and received the most knowledge of the disease that carries through my body. It was refreshing to have a doctor explain in detail as I am a "nerd" and thrive on knowing and research. Also because we should understand so we can navigate our lives accordingly and embrace health not give up or move forward blind. All this to say his name is Dr. Carr in BMC in Redmond OR. He is a new doctor to our area and he immediately put me on Plaquinil knowing that my joint pain was an obvious struggle. My INR level is better in the mid 3.5 to 4.2 range. Better movement and less fatigue.
He also stated that no one has addressed the Auto Immune side of this disease and will be further assisting me with doing what we can to build the immune system as I have chronic sinus and always catch whatever anyone around me has. I own a non profit and am surrounded by thousands of people a year that come in sick and struggling so the exposure is intense and I do not see myself stopping my lifes call to bask away in order to not catch the next yucky that walked in the door. I work diligently to keep all sanitized and I am self aware of what and whom I am around as best as I can. Three times this year on antibiotics and in need of one again but hoping to give my body a shot at fighting it if possible.
This new Rheumatologist took much blood and did all thorough scans from my feet to my head and hands. I have arthritis in my, neck and jaw and hands from the last visit and last bought of scans. He was so kind and also asked me of the pain that I have chronically. I asked about edibles verses "pain meds" there is a science behind the medical grade and he explained that side of that specific choice and stated there was little effect if taken correctly from a medicinal grade once found the right one. A bit complicated but an alternative when the pain gets ahead of me. Results will be in next week, I am hopeful
He explained APLS gets stuck sometimes between Hematology and Rheumatology and if you do not have a doctor on both sides that understands both sides, so much is left untreated, unidentified and sent away without proper support. I have to agree after the years and years of blank looks on so many "specialists" faces when its clear things are going on but no one can help or understand. Currently I have a friend that lives here where I do and she also has APLS and is very young and has deep, long scar from a heart attack a few years ago. They put her on Xaltro (sp?) and she is in bed awaiting help due to them turning her away at ER after they found a clot going into her kidney. They do not watch over her diet and told her she can eat as she pleases and has not educated her properly to be proactive with what is happening to her. Her pain is intense and she has been sick for months and hardly moving from fatigue, she does not go to the doctors I go to and so I encouraged her to get onto this forum and to talk to the doctors that have helped me so well.
On the flipside of life...overall I trudge on each day and keep moving. Its good to be active no matter how hard it can be sometimes. I'm happy to have this day and to know I can eat right to keep INR's stable, hydration is key key key key key.
Hope this helps someone today...
Becca
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As usual I will say what I say to everybody, if you have the attention of a decent physician regarding the anticoagulation which is more stable diet wise regarding non Warfarin, then of course still a full Thyroid panel needs to be done, plus D B12 and Iron, (Ferritin). Plaquenil if tolerated is good also. It is all about joining up the dots and if the doctor is prepared to to that, better for them as well as the patient. Best wishes to you. Keep keeping us posted. Plus of course a lot of patients do better gluten free! MaryF x
Thanks to all, yes I am also on Warfarin 7.5 ml daily, I do mostly gluten free, yet I slip with my ever love of bread, but I am working on this daily. I keep a food log
Thanks again for he support...so good to be on here with all of you.
Hi Becca! I am also in the Oregon area (Vancouver, WA) and have struggled with doctors understanding APS. I have Kaiser insurance, so it has been especially challenging as the doctors recommended are non Kaiser. I'm glad to hear that you found a doctor that is so helpful. I hope you get good information from the tests!
About bread ...... have you tried crisp hard oats bread (wonder if you understand my Swedish translation of it). I eat it every day because my stomach does not like the usual bread I have found. A wellknown Rheumatologist in Stockholm told me to eat crisp hard bread several years ago and so I have done. Actually I did not know why he said so.
When you take so much antibiotics I guess you also take youghurt with the good bacterias.
So sorry for your friend. How terrible when you are not having a doctor and the right treatment.
We have a wonderful weather now in Sweden. It rained a lot in July.
I take my daily walks up to 1 hour every day and then I have no elevator for 4 weeks as they are changing them to new ones with automatic doors. I live on the 7th floor so that is an extra excercise for me which is good. The house was built in 1950 so the old elevator was 65 years and it is a very nice house to live in.
When I was diagnosed back in 2001, the hematologist who explained my condition to me advised me to " not rely on your thirst, but drink by the clock." Which I do. Usually. If I forget to follow my water regimen for even half a day I get fleeting back pains to remind me.
( in hindsight, the successive array of UTIs from my teens and twenties --pain, decreased function, but no discernible infection --may well have been APS clots.. I would finally be given this or that antibiodics which I was told to take with a lot of fluid and I would recover. Now I wonder: was it the antibiodics or the extra water that was helping?)
Good advise, good input thank you. I live by water, I wake up in the night just to drink sometime when I realize I did not drink enough. I count my glasses throughout the day and drink with a straw so I drink more this way.
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