Hi again from the great and sadly specialist empty state of Tennessee. I have my first appointment with a rheumatologist this coming Monday and I have a question on Hughes that hopefully the group can provide some insight on before I see him.
In October I started to develop mild pain in one of my joints. Nothing major at all, and it did come and go. It ramped up in December when I began suffering with a sinus infection that refused to leave. My doctor weighed the risks when I saw her at the end of January and put me on antibiotics and made the consult to the rheumatologist at the same time.
I finished the script, (the infection went away) but I realized that my pain had as well. I've never had a Hughes flare as far as I know (I have had periods of severe migraines and random pain before my diagnosis) which also went away with a round of antibiotics. Is it possible I was experiencing a flare due to my immune system trying to fight off a secondary infection?
I apologize if the question is out of left field and a completely inaccurate assumption but there are so few resources here that my current doctor and I are both assuming everything that happens to me is due to the Hughes because "It's better to be safe than sorry"
If that's the case, since I'm not in pain right now, is there anything a Rheumatolgist can do?
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Morganslone
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Hi there an infection, an insect bite, a virus you name it we all have our triggers for flares, so yes that could have triggered a flare. When you have your appointment make sure they don't just look at your Hughes Syndrome/APS, also D, B12, Ferritin etc and a Thyroid panel beyond just the TSH test, as if any of this is not quite right it will make you feel worse. I know I did! MaryF
Is there anything else I can or need to have checked or monitored? I think I've said in another post, I'm very lucky with my GP in the fact she takes Hughes very seriously and listens to me as well as admits this is a learning curve for us both.
I have had Thyroid tests my entire life (due to a thick neck and weight issues) and they always come back normal. Is there a specific range they should look for?
Is this Rheumatologist one you have picked up from your post last month? I mean did you have any luck in finding a Doctor specialized in these autoimmun illnesses not too far from your home? Probably you have heard from us that we find it very important.
I wonder what therapeutic level of INR with your Coumadin you are on and if Coumadin is your drug for anticoagulation or if you have oral drugs?
If I were you I would forget about antibiotica. You should not fight this illness with antibiotica but what you need is to thin your blood, take the right bloodtests and get the appropriate drugs for it afterwards. A Doctor who knows Hughes Syndrome knows what tests and drugs you need.
Of course you should see this Doctor as you have had DVTs and PEs and probably need to be on anticoagulation and eventuelly also on a higher level. I am on Coumadin with an INR around 4.0 to be without symptoms.
Good Luck on Monday and please let us hear how it goes for you!
Sadly no. My GP and I took my list and reviewed each of the names and picked one that I felt good with, and that she thought would take me seriously and accept there would be times I was going to question what I was told until the collective "we" involved in my care agreed something was the best course of action. From the responses here, and from research I've done with my doctor as well, we have not been able to find any true specialists. My GP saw a case of CAPS when she was doing her residency, which I think helps a great deal in having her take my diagnosis seriously. Until I worked with her, none of my previous doctors did anything to even research the condition.
I am on Coumadin and am thankfully very steady between 2.5 and 3. I can tell when I go lower because the headache is nearly instantaneous now. After several months of presenting information to my hematologist I was able to get a prescription for an at home monitor. I do know that there is debate about the home test kits being appropriate but we are using it for supplemental twice weekly testing in addition to a true venous draw in her office once a month. Due to having PCOS we are working on slowly reintroducing my previous meds (metforin, supplements, and diets) and having the twice weekly check is good for my piece of mind as well as theirs.
The antibiotic wasn't for my Hughes but the sinus infection that I developed and my body just couldn't shake for 5 months. My GP and I are both very hesitant to put me on antibiotics.
Currently I take
7.5 mg of Coumadin
Allegra d (an effort to prevent more sinus infections and it does not seem to react with the Coumadin)
Prior to my diagnosis (the same month as it happened due to the hemorrhaging incident that proceeded my clots) I have a Mirena IUD which all of my doctors have agreed is necessary at the moment. (I was scheduled for a hysterectomy which did not happen due to the doctors disagreeing about my age being appropriate to make that personal choice)
Due to the mass clotting two years ago have a Inferior Vena Cava (IVC) filter placed above my kidneys to prevent future PEs. The doctors and I agreed this was the best course of action since with my incident I was the 20th member of my family to present with PE's with only 3 or 4 of us having survived.
I can't thank all of you enough for the advice I read on here, the tips, and the understanding and knowledge I am not alone.
If you print off stuff from the charity website to take with you to appt, you can argue your case a bit better. Also maybe one of the first questions you can ask him/her is if they are familiar with APS. My Rheumy is not an APS specialist but does understand the disease, which makes a huge difference to your consultation when they actually listen!!
Why are you not going to see your Rheumatologist on Monday?
Warfarin and an INR between 2.5 - 3.0 is too low. A venous dray each month when you start to selftest is too seldom.
As to your family-history I think you should take this illness seriously enough to look for a Specialist. I understand you feel sorry for your kind GP who tries to help but that is not enough I can assure you. I am sure you will regret that you did not do your utmost to find an Expert who could understand and treat you properly.
I think I may have misstated somewhere, for that I apologize profusely. I'm desperate for help and there are so few resources in the USA for this.
I didn't mean to imply I wouldn't be going to the appointment, just that I don't know what good it will do with no present flare. I need to know what to ask him to look for, and what to MAKE him look for in my results and body. Because I've lost faith in most doctors listening to me other than the few I have established some trust with.
I am in the United States where the number of APS specialists is, I believe at this point essentially non existent. At least within 600 miles of my current location. Difficult to believe when you realize I live in the shadow of Vanderbilt and St Thomas. I have lost count of the number of physicians I have called, reached out to, and questioned about Hughes Syndrome/APS to determine my GP is the best option. That isn't counting the number my GP has contacted attempting to find others who are knowledgeable in my condition. She was one of a handful who was even willing work with me and take my illness seriously. I can assure you I am taking my illness very seriously. The issue is finding physicians who do as well. Again I have tried, and called, and pounded on doors. I have been in ERs crying as I was hemorrhaging out from blood loss from a secondary complication when the Doppler Ultrasound done on my legs showed a DVT from ankle to groin in both legs and the hospital refused to admit be because it was a "female concern" (that is an exact quote) And my OB would see me on Monday. (the start of this adventure for me)
My hematologist has scheduled a monthly draw because after one every two weeks I held steady for over a year and my veins in the other arm are so damaged from another DVT. My left arm is unusable due to the DVT that damaged that vein and both legs are also too damaged to use. With my INR stable she met with her phlebotomist who had real concern over scarring of my one existing good IV or draw site and determined my regularly scheduled appointment would be a venous draw once a month when I was on my standard medication and switch to a weekly draw only when new medications are introduced. I am the person who insisted on my at home INR monitor because insurance in the states, or at least mine, isn't willing to pay for the type of monitoring I require, the fear of damaging my veins, and the fact that if I notice a variation in my INR I call her and am tested same day. What information can I give her to change my target INR? I havent' seen a solid recommendation while she isn't perfect, right now she is the only one willing to monitor me personally without sending me to the warfrin clinic where a lab tech would draw my labs and then a nurse would call me for any adjustments with no contact with a physician (common practice state side)
My vascular surgeon has a standing note on my chart that I am to be assessed when I arrive in his office with a Doppler of the area of concern (where I feel stiffness, pain, or that horrible feeling of fullness a vein gets when it clots quickly).
The pulmonologist I see has tested my lung capacity and continues to do so during yearly appointments or after any infection involving my lungs looking for damage that was missed after the PEs. (I don't know if that's necessary but I am grasping at straws on that one)
We don't have the support system for Hughes in our country that many of you have in Europe. I wish we did. I am blessed I found this page. I am listed as a high risk and high priority patient for her and the other physicians in her practice. Out of all of those I called she was the only one who even knew what Hughes/APS was, and has worked to help me since that day to try to become healthy.
The things I said above or why I am so grateful to this board and all of you. I can come here and get the information that my physicians needs to help treat me to get her to that level of understanding. And to arm me better to demand what I need. When my other physicians wont' listen to me, she helps me find new ones or she calls and has the hard conversations with them to make sure they understand that when I say I'm sick I mean it and it needs to be taken seriously. If there is anything else I can do I hope I can learn it here with this group because I do take this condition very seriously. I'm terrified of dying or suffering something like I did before because a doctor missed something.
I have edited my post to give you guys more information because I am desperate, for advice. I've applied to studies to see if that would help, I've called. I work in the health care industry here and I've polled our hospitals to see if anyone can direct me. I hope my post doesn't sound harsh, it isn't meant that way. I'm just lost and really afraid. There isn't support for this here, and even finding a doctor who understands my fear that something as simple as a flu shot could cause me to clot has been a battle that I never thought I'd have to fight.
I have five aunts. All five have symptoms of APS, all of them have been diagnosed with different auto immune condition after auto immune condition, my cousins have had mulitple miscarriages and due to my diagnosis are now going through the process of their own. I look back over my community where I grew up and my mom knew of three incidents of CAPS in a year in a community of 2400 people. And no one is willing to treat it or learn about it.
Hi Morganslone! I agree with you on the state of APS treatment in the US. I am actually fairly close to you in West Virginia. I have been to Cleveland multiple times (about 250 miles away) and did not have real good luck on diagnoses or treatment. I also worked in health care industry as registered dietitian with MS in clinical nutrition. My method of treatment currently is reading the Hughes website and the Sticky Blood forum and telling my GP what I have found and we cobble something together. Certainly not ideal situation but best we can do at this point.
I am currently working at getting my INR between 3.5-4.0. All these years(21) and I didn't know my INR should be higher than 2.5-3.0. No one locally told me that, nor did Cleveland.
I also have a huge problem with blood draws. My hematology nurses want me to get a 'port' for blood draws and infusions of gamma globulin every 4 weeks due to additional diagnosis of immune deficiency CVID. Have had multiple PICC lines and been told by radiologist I have smallest blood vessels he has ever seen in an adult. I think the small vessels compound the clotting issue. Also 20 years ago developed frequent episodes angina which were due to vasosospasms of coronary arteries (printzmetals angina). This is also probably related to raynauds and vasculitis and livedo somehow.
All we can do at this point, I think, is the best we can. Nancy
I was speaking to someone else about this the other day and we were discussing how sad it is that APS/Clotting disorders are so common place in the mountains that heparin and other medicines of that type are commonly used for infertility as a first treatment by local doctors because it works so frequently and how odd it was to have such a cluster of the disease.
I purchased my monitor with the script from a medical supply company and am currently fighting with insurance for some reimbursement. Explaining to them that yes, someone in their 30s can require this level of care as preventative and necessary has become nearly as time consuming as my actual job.
What SHOULD my INR be? I keep reading but I think that at this point my mind has become fuzzy to all of it, it's information overload.
Thank you for your help Hughes-Comrade. I have actually called and spoken to them as well and none of their doctors specialize in APS/Hughes
vanderbilthealth.com/hemato... Lists there physicians and their different specialties and focus areas and none of them mention Hughes or APS and when I spoke with one of their nurses she was not able to confirm they had any specialists. My GP and OBGYN are both associated with Vandy and have also looked there for someone they might be able to recommend. If someone here can look at the different specialties that are listed and see one that might be close enough to Hughes that they would have a greater understanding I can contact them again. I was forced to have the discussion with my current hematologist again on why I am against moving to Plavix this week and of the team I do see, though her staff is extremely responsive (an amazing thing) I am holding out hope I can find a hematologist who is willing to dive into this information with me.
I hadn't thought of doing that. Thank you! I will reach out to them Monday. I have my list of blood tests printed out to take with me to see the Rheumatologist on Monday. For better or worse the pain in my joints started again last night so I've switched from checking my INR every three days to checking it everyday to see if I can find a dip in it while I'm in pain to use it as proof to them that higher is better.
I do have a random question about the difference between the UK and the US with doctors, especially when dealing with larger scale organizations such as Vandy. Here to reach a physician or even a nurse if you call one of the larger organizations you are routed to a call center that takes your information (they do not have clinical backgrounds) and they rank the importance of your call when they send it to your physician's office or nurse. With my OB she had put a note in the public part of my chart stating I am to be treated as high risk and forwarded directly to her office. My GP is a smaller office so it isn't an issue, all of the people there know me an send me to a nurse right away, and my hematologist, despite our disagreement over how seriously I should be treating this illness is available constantly and has a nurse answering her phones (It could be due to the level of care many cancer patients need and her office is oncology and hematology)
Is that a struggle that people in other countries have as well? How important should I rank being able to reach out and speak to a clinician vs an answering service when considering potential doctor changes?
My husband and I have even been researching the possibility of (we will if we can find a Hughes specialist willing to do so) paying out of pocket (since insurance probably wont' cover it) a phone or web consultation with all my current lab work and medical records to review my current treatment and make suggestions
Oh, I should mention, I have had an INR meter for self testing since 2007. In process of getting CoaguChek since old meter recalled. In the past my health insurance paid for part of meter cost and for part of the strips. Have different insurance now so don't know yet how much will be covered. My GP ordered old meter and will order new meter. If you are interested I will send you name and number of company providing meter. Nancy
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Could I have Hughes Syndrome?
NZ Rheumatologist
