I've written before, trying to find answers. I've had years of strange symptoms following a bout with Myocarditis and CHF. After successful treatment and a discharge by the cardiologist, I developed grotesque feet/hand swelling (increased several sizes within weeks). Sought out a rheumatologist who gave me Lasix and Vasotec while running tests. All tests were negative. The next symptoms were lesions on finger tips and toes. A few months later, right index finger ulcerated, followed by the rest of my fingers/toes cracking, bleeding. Spent close to a year using Neosporin on wounds, followed by wrapping fingers/toes each day and night. Next, the tip of index finger's ulcerations got so bad, formed a scab and eventually fell off. No Explanation could be found for anything I experienced. Six months following the loss of my finger tip, and in the midst of many tests, my hands from finger tips up to my wrists turned deep purple; tips of toes purple, tip of nose the same. The Rheum. put me on Procardia 60 mg, while keeping me on Vasotec 40 mg for a suspected connective tissue disease. All digits began healing and eventually within the following year, I was able to stop wrapping them. Procardia XL reduced to 30 mg, Vasotec reduced to 20 mg daily. Continued having problems with blanching of hands. Dr. at last determined I do have Raynaud's. The time span was approximately four years with cold weather being the time when I would have the worst of the flare ups. January 1998, had stroke to the brain ( a BLOOD CLOT) affected my field of vision, visual impairment was 75% loss. Placed on Coumadin (warfarin) while continuing to take Procardia XL and Vasotec. Hypertension was one of the culprits. Can not take any statins because I have severe reactions to 5 of the types (brand name and generic). My former retired Rheum. told me during a recent phone consultation that with the addition of Coumadin to my treatment plan, I "got better." Now, in winter, fingers will occasionally still ulcerate and the tip of my nose turns blue (always exposed to the elements). BUT, the key component, according to him seems to be the use of Coumadin because it seemed to stabilize everything. However, there was never a single positive component to any of the dozens of tests he ran on me. All that information regarding tests and his notes are gone because hospital records of tests, admission and hospital stays, MRI, CT scans have all been destroyed. Hospitals and physicians offices only keep patient records for 7 years; then they are destroyed. Nothing on microfilm. NOTHING at all. So the only record I have is that of the Rheumatologist's recollections. He surprised me by remembering so much about my history. I have not seen him in close to 4 years. Replacement Rheum. wouldn't take treat me with Coumadin therapy and won't give me the Vasotec for hypertension. Primary Care dr. gives me Vasotec (but only because the Statin drugs have landed me in the hospital on a couple of occasions...can't tolerate any of them). But PC does NOT like giving me so much Vasotec (20 mg daily). I also take Menest (a mild 3.0 mg dose of estrogen which I've taken following a radical hysterectomy in 2001. I had many, many fibroids, cysts in my reproductive organs. The former Rheum. told me that the combinations of medications (also including Metformin for type 2 diabetes) worked together to make me well. He told me he would talk to the Neurologist that my terrible PC referred me to. But, the Rheum. told me that because I have not been his patient for close to 4 years, he couldn't promise the neurologist will agree to continue Warfarin therapy. He said the antiphospholipid tests were negative when he tested me long ago, just as they were during my most recent tests. However, the Rheum. also said that just because no tests have been conclusive, the treatment plan he placed me on DOES WORK. I see the neuro. next week and I fear he insist I stop the Coumadin. I've been in the best of health since beginning Coumadin following stroke. My family history of blood clots is extensive: grandparents, father, uncle, aunt, 3 cousins, 1 sister and 1 brother all had blood clot related strokes and my daughter has something called a Pseudo-Tumor-Cerebri. But the neurologist dismissed the family history. Strokes came from father and mother's sides of the family. I just can't buy into his reasoning. I asked for genomic testing to see if something else could explain it all. However, I've been so WELL for almost 20 years now, since taking Coumadin in addition to the other medications. As the former Rheum. stated, whenever any changes were made to my medication therapy, I would have problems. So, though he CANNOT EXPLAIN why the therapy using Coumadin to control clots, Menest for miniscule dose of estrogen, Vasotec and Procardia XL worked in tandem, but they DO work. Does anyone know of a case like mine? I can't find anything; I've conducted extensive searches over the years and now feel like the clock is running out for me. I've tried to contact an ADministator but I don't seem able to get far. Also, I do have a slight brain damage component and while my writing skills are intact, my VERBAL skills are not. I know what I want to say, but I am NOT always able to verbally articulate what is rolling around my brain. So, trying to find an administrator is frustrating, just as is trying to explain to this neurologist ends up with me being tongue-tied. My husband cannot come with me to this next appointment and I'm very frightened by what the neuro. will say. He dismissed everything I told him at our first and only meeting. I typed up my extensive family history of blood clots but he just shoved the history in his folder, stating he really did not need that but took it upon our (my husband and mine) insistence. Thank you to anyone who can help.
No Answers; clock running out before ... - Hughes Syndrome A...
No Answers; clock running out before I see latest doctor regarding prolonged, successful 18-year Coumadin use for clot to brain
Sorry to be a bit late in answering your question/post, you have been given a clear and sensible response here, that I agree with, we and others on this forum can help further if we know your location.
ps you are not the only one to have been in this particular situation. MaryF
Thank you MaryF. It is some comfort to know that I'm not alone and that perhaps there is an answer for me. I live in Augusta, Maine, USA. I tend to head to Portland, ME, almost 2 hours south by car. The tests that were recently done are identical to what my former Rheumatologist ran but found "inconclusive" more than 20 years ago. Tests are:
1 -- Beta 2 Glycoprotein AB IGG; Cardiolipin Antibodies IGA IGG IGM; MR 2 -- Brain without contrast. He also asked if a previous test. ONE TEST NOT DONE: "Benign Cerebral Vasospasm syndrome --- FORMER Rheumatologist did not have a record or recollection about that test. I don't know what these tests are, though. In any case, all tests run by former Rheumatologist came back negative every time and they were run more than once. He said he thought everything, was interconnected: 1- Irritable Bowel syndrome, 2 - hypothroidism, 3 - Raynaud's, 4 - ischemic fingers; 5 - weird rashes on my back. He also felt that my - childhood 2 -- illnesses and allergies, 3 -- fibroid tumors, childhood illness; 4th that required twice yearly shots of Gamma Globulin plus twice weekly allergy shots (2 per each arm), were all interconnected. All I know is that I've spent a lifetime of being sick and no one ever knows exactly why.
I would encourage you to find a good Hemotologist. They will understand all the tests needed, as well as have a better understanding of the results and willing to treat as needed with Coumadin/ Warfarin. Rheumatologist, refused to give me warfarin after getting all labs back confirming APS, said she didn't want it on her head if I were to bleed to death!
Oh my goodness! That is my primary care doctor's reasoning for stopping my Coumadin therapy. "NOT on his watch!!" were his words. I will look into a hemotologist although the doctor told me it would be better to see an Internist. What type of doctor do you recommend--hemotologist or internist?
Thanks Patatie
APsnotFab Thank you so much for your reply. I am in Augusta, Maine, USA. Last INR levels were 2.5 which is in the prescribed therapeutic range of 2.0--3.0. It was rather erratic earlier in the summer. My PC ran routine wellness tests; decided I had narrowing of the esophagus, indicating possible narrowing and cancer. He arranged for a Esophageal probe, put me on high dosage of Lovinox bridge PLUS kept me on 8 mg Warfarin at the same time. My INR shot up to 12. Meantime, Esophageal probe showed NO narrowing. The Specialist who ran the test said my esophagus is just just "beautiful, NO narrowing, Nothing wrong with it. He said it appeared my PC did not know how to read the Probe results, because that very first test showed no reason for ordering the more invasive Probe Test. So, I was fine, but it really messed up my INR levels. After months it is now back to normal, just in time for the neuro. to take me off of it. Unfortunately, I have no other place to turn. The neurologist is my only choice, apparently. I can't find a reputable Internist in my area. I usually have to travel 2 hours south to Portland, which is where my Rheumatologist practiced and where the Neurologist is also located. My husband wants me to keep the appointment with the Neurologist. I don't want to go back. I will call Neurologist's office this week and ask what, if any experience he has had with APS although I don't know how one determines whether or not a patient has that condition. If nNeurologist has NO experience with people with APS or clotting disorders, than I won't go back. Will still have the problem of having NO ONE to prescribe my medication and no one to write the order for continued Coumadin Therapy treatment. My Prescription is due to expire along with the Rx for visits to the Coumadin clinic so I don't know what to do. One more thing: should I look into Genomic DNA testing? And if so, Where would I have that done? Thank you for listening and for your suggestions. I will ask the doctor about them. Thank you so much.
Hi Patatie50, I'm on Warfarin for life, after surviving a Pulmonary Embolism and then a DVT in my knee. I've been on Warfarin since early 2012 and can only say that it has changed my life for the better. To me, it's a wonderful treatment as it cleared my head, whereas I always felt depressed previously. It vastly reduced my multiple headaches including migraines, and even suppressed my occasional Trigeminal Neuralgia. I think this is because the thinner blood flow circulates the blood, and therefore oxygen, much more efficiently around the brain, as well as preventing clots (DVTs). All tests carried out by Haematology proved negative and they said that it wasn't Hugh's Syndrome, though I know from this site that it still could be. I was discharged as they said they could test forever and never find the cause, BUT, that whatever it was, the best treatment was Warfarin. I can certainly endorse that particular statement!
It just so happens that I saw my GP this week about alternatives and we concluded that Apixaban 'could' be a suitable alternative. She left me the choice of staying with my quite stable INR with Warfarin or trying the NOAC alternative. I've yet to fully read up on it and decide. The advantage of the NOAC is that you only have a checkup once a year, instead of frequent INRs. We are all different, so what suits one person can be opposite for others.
In conclusion, Warfarin works very well for me, and my major concern is that switching to Apixaban could remove some of the knock-on benefits I've got from Warfarin. I will probably opt to remain on Warfarin, as it can also be reversed quickly with Vitamin K, if required.
Hi,
When I read through your post here, I noticed that I in my mind, wished you would raimain on Warfarin. You say it has helped you so much and you are also stable on it (not everyone is).
I hope you also have a Specialist to talk to as your GP is perhaps not the best Doctor to advice you on bloodthinners.
Best wishes from Kerstin in Stockholm
Thank you Kerstin. My GP is the doctor insisting that I stop Coumadin for no other reason except that he says he does not want to be the one responsible when I have a stroke that kills me BECAUSE I am on Coumadin. I didn't know how to respond to him. His illogical reasoning is way out there. He has referred to himself as a Mechanic and the speialist he sent me to is a Neurologist. Neuro doc said that since I do not have Atrial Fibrilation it means I don't need Coumadin. However, I had a blood clot that caused the stoke. I'm still searching, still hoping a reputable doctor will emerge who will treat me. In my locale, there is no one. The neuro is so arrogant that he won't accept anything my husband and I had to say. He said he is the doctor, not me. He wouldn't look at the extensive family history I compiled. He shoved it into a folder and stated "I won't need this, but I'll take it to make YOU happy." I have no other doctor to turn to. But, I thank you so much for reaching out to me.
Hi again,
I am so happy that APsnotFab and MaryF have answered your post! They know so much and I do hope it will be possible for you to follow their advice.
The Neurologist usually do not "get" what APS is about - too thick blood that has to be properly and steadily thinned to make us feel good again and have no more clots, PEs or DVTs etc.
I also have had very high bloodpressure and now i have Pulmonary Hypertension and 2 leaking heartvalves. This high bloodpressure was before I had an INR high enough to get rid of the very high attacks (also with chestpain). I have all the three antibodies in high titres and selftest with an INR up to 4.0.
Please take also help from your husband (you mention him also) as it can be difficuilt to be alone with this illness sometimes.
I wonder if you have read "Sticky Blood Explained" by Kay Thackray. Good also for relatives but it says nothing about the new oral drugs as it is not a new book but explains very good how it it so live with this illness and she talkes about different symptoms she has. Neurological and also heart-issues.
Kerstin
Hi Kerstin, thank you for your reply. I've been without internet for a few days so now explaining why my response has been delayed. Is the book by Kay Thackray found in a bookstore or is it an online publication? I would like very much to read it but haven't found it yet. Thank you for the title of the book.
I a sorry to learn about your hypertension, heart disease.
Again, thank you for the book title. Most appreciated!
Hi again,
Fantastic the Wittycjt knows the book-market as I do not here in Sweden.
I am fine as long as I keep my INR in place which is difficult. I have good backup from my hospital with the selftesting and everything.
As long as my bloodpressure and INR is ok I live a good life.
Hope you like her book. Many of our members have done that. There are actually two books. The other is "More sticky blood - Hughes Syndrome". The first book is perhaps more informative.
Kerstin
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