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James

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  1. Last year I started to get problems with loss of sensation in my feet. I thought it was best to get it checked out because of concerns about reduced circulation with my DVT history and post thrombotic syndrome. I had a CT scan and saw an MSK consultant (musculoskeletal), a physio, and then a neurologist. I was subsequently diagnosed with mild peripheral neuropathy. It isn't related to Protein S Deficiency. And there isn't much they can do about it. Just to be sure, the neurologist then requested a wide range of blood tests, and one of the results came back with an odd result. There are three main antibody tests - IgM, IgG, IgA - and my Immunoglobulin M level came back as zero. The tests were repeated several months apart and still zero. Another test showed I had the building blocks for making it (free light chains) and that eliminated the possibility of other related health issues. So I have been waiting for many months to speak to an immunologist to find out how this affects me, and any precautions I need to take. As you can imagine the doctors dealing with immunology are kind of busy right now. Yesterday I was fortunate to have my telephone appointment with an immunologist. They said they don't have previous results to compare with but it appears to be 'normal' for me. Some people without IgM have a tough time dealing with recurrent infections. In my case I am asymptomatic. I don't have IgM but my body still has IgG to fend off infections. This condition is called Selective IgM deficiency (SIgMD). There is nothing to suggest this has anything to do with Protein S Deficiency, we all have other health issues, but hopefully it may inspire some of you to go and see a doctor if a relatively minor ailment is troubling you.
  2. If you are wearing Sigvaris compression stockings please be aware of a product name change. The type known as "Cotton" is now known as "Essential Thermoregulating". This change affects UK prescription re-ordering. Unfortunately the NHS system does not include the article number (which has not changed) so when re-ordering "Cotton" it will appear to be unavailable. Instead your GP needs to search for "Ess Thermo". If they need any assistance they can call Sigvaris UK on +44 1264 326 666
  3. Press release from Bristol-Myers Squibb https://www.bms.com/assets/bms/ca/documents/productmonograph/CANADA-Coumadin-deletion_D-HCP-Communication_FINAL_EN_04.23.2020.pdf Date: April 23, 2020 RE: Discontinuation of Sale and Distribution of Coumadin® (warfarin sodium) Tablets, for oral use. Dear Healthcare Professional, Bristol-Myers Squibb Canada would like to inform you that the sale and distribution of all strengths of Coumadin® (warfarin sodium) tablets will be discontinued in the United States, Canada, Latin America, and Saudi Arabia, due to an unexpected manufacturing issue that could not be resolved expeditiously. Based on stock availability and expiration dates, we anticipate discontinuation of Coumadin® strengths to begin on June 1, 2020. Full discontinuation of all strengths is expected by August 31, 2020. This voluntary action is the result of an unexpected manufacturing issue that cannot be resolved and is not the result of any quality, safety or efficacy issue regarding the product. Indication: COUMADIN (warfarin sodium) is indicated for the prophylaxis and/or treatment of venous thrombosis and its extension, pulmonary embolism, atrial fibrillation with embolization, and as an adjunct in the prophylaxis of systemic embolism after myocardial infarction, including stroke and reinfarction. For your patients currently using Coumadin® (warfarin sodium) tablets,healthcare providers will be required to consider alternatives. BMS cannot recommend a specific product. Prescribing an alternate product is the clinical decision of the healthcare professional in consultation with the patient. In Canada, therapeutic alternatives, including generics, are available. If you have questions or require additional information regarding the discontinuation of Coumadin®Tablets, please contact Bristol-Myers Squibb Canada at 1-800-267-0005 or via e-mail at otc.canada@bms.com. For medical information requests, please contact our Medical Information Services at 1-866-463-6267 or at medical.canada@bms.com. Sincerely, Joseph Atallah Head, Medical Affairs BristolMyers Squibb Canada
  4. Yes you can fly wearing compression stockings. When you are seated you can also do heel-toe exercises to improve circulation. Start with feet on the floor, flat and level, keep the heal on the ground and lift your toes. These also help... https://www.livestrong.com/article/462835-exercises-for-swollen-feet/ Be aware of symptoms after flying for up to six weeks, and act on any concerns by getting checked as soon as possible.
  5. Tumour-Secreted Protein S (ProS1) Activates a Tyro3-Erk Signalling Axis and Protects Cancer Cells from Apoptosis by Nour Al Kafri and Sassan Hafizi https://www.mdpi.com/2072-6694/11/12/1843/htm Abstract The TAM subfamily (Tyro3, Axl, MerTK) of receptor tyrosine kinases are implicated in several cancers, where they have been shown to support primary tumorigenesis as well as secondary resistance to cancer therapies. Relatively little is known about the oncogenic role of Tyro3, including its ligand selectivity and signalling in cancer cells. Tyro3 showed widespread protein and mRNA expression in a variety of human cancer cell lines. In SCC-25 head and neck cancer cells expressing both Tyro3 and Axl, Western blotting showed that both natural TAM ligands ProS1 and Gas6 rapidly stimulated Tyro3 and Erk kinase phosphorylation, with ProS1 eliciting a greater effect. In contrast, Gas6 was the sole stimulator of Axl and Akt kinase phosphorylation. In MGH-U3 bladder cancer cells, which express Tyro3 alone, ProS1 was again the stronger stimulator of Tyro3 and Erk stimulation but additionally stimulated Akt phosphorylation. Conditioned medium from ProS1-secreting 786-0 kidney cancer cells replicated the kinase activation effects of recombinant ProS1 in SCC-25 cells, with specificity confirmed by ProS1 ligand traps and warfarin. In addition, ProS1 protected cancer cells from acute apoptosis induced by staurosporine, as well as additionally, long-term serum starvation-induced apoptosis in MGH-U3 cells (Tyro3 only), which reflects its additional coupling to Akt signalling in these cells. In conclusion, we have shown that ProS1 is a tumour-derived functional ligand for Tyro3 that supports cancer cell survival. Furthermore, the ProS1-Tyro3 interaction is primarily coupled to Erk signalling although it displays signalling diversity dependent upon its representative expression as a TAM receptor in tumour cells. Extracts from the full text Our data also reveal a greater significance for the role of ProS1 as a TAM ligand than had previously been known in extra-hepatic tissues and beyond its well-established role in regulation of blood coagulation Therefore, our data demonstrate that cancer cells can be a major source of functional ProS1, expressed and modified post-translationally in a vitamin K-dependent process exactly as that which exists for several vitamin K-dependent proteins in the liver
  6. Q: Can you donate blood when you have Protein S Deficiency? A: Yes, but there are restrictions. If you have had any thrombosis then you must not donate. If you are taking anticoagulants then you must not donate. *** Protein S Deficiency : Thrombosis You may give blood provided you have never had an episode of clotting and do not require anticoagulant medication to prevent clotting. Source: https://my.blood.co.uk/knowledgebase/Index/P *** Note: This is the general advice for Thrombosis. Thrombosis can be caused by other health conditions besides Protein S Deficiency. However if you have Protein S Deficiency then follow the advice shown above. Deep Vein Thrombosis : Thrombosis Pulmonary Embolism : Thrombosis You must not donate if you have been told you have atherosclerosis, if you have been told you have axillary vein thrombosis, you have had two or more episodes of thrombosis (blood clot) or you will be taking anticoagulant treatment (medication/injections to thin you blood) for life. If the cause of your thrombosis was one of the following, you may donate 7 days after completing any anti coagulant therapy to thin the blood as long as you have had a single episode only of thrombosis (blood clot): Contraceptive pill Long haul flight Plaster cast Immobility Smoking Following surgery Pregnancy Source: https://my.blood.co.uk/knowledgebase/Index/D Source: https://my.blood.co.uk/knowledgebase/Index/P
  7. Protein C and protein S deficiencies may be related to survival among hemodialysis patients Mayuri Ichinose, Naru Sasagawa, Tetsuo Chiba, Katsuhide Toyama, Yuzo Kayamori and Dongchon Kang BMC Nephrology 2019 20:191 Background: Thrombophilia due to protein C (PC) and protein S (PS) deficiencies is highly prevalent among patients with stage 5 chronic kidney disease and is reported to arise due to extracorporeal circulation during hemodialysis (HD). This study aimed to evaluate the relationship between HD treatment and thrombophilia. https://bmcnephrol.biomedcentral.com/articles/10.1186/s12882-019-1344-8 This study suggests that some patients undergoing dialysis treatment for kidney disease are more susceptible to thrombosis. The researchers confirmed that the patients in the study did not have a hereditary cause of protein deficiency. However those that had acquired a protein deficiency also had reduced survival rates.
  8. When you are travelling on anticoagulants you are in a better position than other passengers. They may have an undiagnosed risk and they have no protection at all. Whereas you have medication to protect you, and you are aware of possible symptoms, and can take additional precautions seriously. https://www.proteinsdeficiency.com/lifestyle/air-travel.php I have flown from UK to Australia on my standard dosage of Warfarin... there is no need for anything more than usual however if you a doing any long distance travel it helps if you can visit your doctor beforehand to confirm you are fit to fly. Let the doctor do their job and advise you what is best for you based on your medical history.
  9. Full article available at https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2752078/
  10. As an update to my previous post we took out a joint policy with LV (Liverpool Victoria). I declared my health history and PSD and was given cover with an extra premium to pay. A ten year policy for £80k costs us £25.51 per month. This doesn’t pay off the mortgage but it ensures that after debts and funeral costs the amount left for the other person to pay would be affordable.
  11. Early Identification of Protein S K196E Mutation in a Patient With Cerebral Venous Thrombosis: A Case Report https://www.sciencedirect.com/science/article/pii/S1052305718305627 Background Mutation of protein S K196E (PS K196E) is a genetic risk factor for venous thromboembolism; however, there are few reports on cerebral venous thrombosis (CVT) with this mutation. We report a case of CVT that was diagnosed as having PS K196E mutation at the initial thrombotic event. Methods A 54-year-old man suddenly developed generalized seizures after headache and nausea. Brain magnetic resonance imaging showed cerebral edema, and angiography revealed CVT. Blood examination revealed that protein S activity was low (44%) despite normal free protein S antigen levels (81%). Sequence analysis revealed a heterozygous PS K196E mutation. We treated him with warfarin with the international normalized ratio maintained at 2.0-3.0. After 1 month, he was discharged without any neurological sequelae. Results Early identification of the causes of thrombophilia is important for the long-term management of CVT. However, detection of PS K196E mutation is difficult because its only feature is a moderate decrease in the activity of protein S, which is influenced by environmental factors. Conclusions The possibility of PS K196E mutation should be considered if other causes of CVT are ruled out and if protein S activity is decreased.
  12. I thought your concern was about his sporting career? Protein S Deficiency is either hereditary or acquired. Identifying the finer details of what type of PSD your son may have doesn’t change anything relating to his sports activities. Doctors will roll all causes under the blanket heading of thrombosis and treat him the same as any other person with thrombosis, so you don’t need specialists. The focus should now be on prevention and adjusting that to his lifestyle (sports activities).
  13. It is unusual for protein s deficiency to trigger a thrombosis event at his age, so there may be other risk factors. Without the familial testing to confirm the diagnosis it may help to run the screening process again. For example protein s levels are naturally reduced after a clotting event, and warfarin reduces them too, so you need to be clear of both to get a reliable natural reading. Factor V Leiden is often misdiagnosed as Protein S Deficiency. Regardless of the cause, if he has only had one clot then normal procedure is for warfarin for 3 months, then to come off anticoagulants. This would allow him to play contact sports as normal. However if he has an injury, is laid up, has a broken bone etc, then there is a higher risk of another clot unless he receives anticoagulants. A second clot would put him on anticoagulants for life. Apart from checking the screening I would suggest contacting a trade body for rugby and asking for support from their medical advisors. There may be professional players dealing with the same issue already.
  14. There is not much point in determining the type of PSD. Doctors prescribe anticoagulants to reduce the risk of thrombosis. They don’t do anything to treat the PSD. Unless you are facing a situation which significantly increases the risk of clotting it is unlikely they will prescribe anything unless you have previously suffered from thrombosis. There was no history of DVT in my family apart from myself. However my mother, sister and niece all have PSD like me. Only blood tests of family members will tell you for sure.
  15. Anticoagulants are normally only prescribed if you have a history of thrombosis. Many people have low Protein S levels and do not get a clot. I do not know about microangiopathy but I can see it relates to the endolethium. The endolethium is known to play a role in production of Protein S. So maybe it is the other way around, the problem with the endolethium is causing a reduction in your Protein S levels. Family testing would probably be helpful in understanding whether anyone else in your family has low Protein S levels like yourself. If anyone does then it would indicate a hereditary cause, rather than caused by a health condition.
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