Hi Happy New Year! Hi Kelly in Texas! It’s been a while! Just want to let everyone know if you’re on Lovenox/Enexoparin , it can give you osteoporosis! My hemotologist never told me, nor did he order a decascan! In June I was opening a window and I hear a crack and fell into my sink Lol… glad it was my sink! They waited 6 weeks to do kyphoplasty and my pain management doc told me I don’t know why ur so happy about kyphoplasty… it won’t work it shud have been done right away! A couple of weeks later I broke the bone just underneath the original T12, L1. I found another great doctor and went in for another kyphoplasty, I thought they were coming to operate and they told me they can’t operate on me and they said I broke another bone L3! That was September! In October my T12 bone compressed even more and is sitting on the nerve route! Needless to say I’ve been in excruciating pain since June with no let up! Make sure if you’re on this side you ask for a dexascan and get proper treatment before you break any bones! All this could have been avoided had my doctor did the right thing by me, but I’m the rare case and they tend not to believe women! I also have high protein in my urine and they don’t know why! I looked it up and it says if you have APS you can get Something called Protienurea and it can be treated! But they’re just not doing that for me because they don’t know any better! They needed to do the research not me! I pray 🙏 my friends are all doing well and have a Happy and Healthy New Year! Love ❤️ and Hugs 🫂 sent your way! GODSPEED
Lovenox/Enexoparin: Hi Happy New Year... - Hughes Syndrome A...
Lovenox/Enexoparin
Hi, what an awful trauma you've gone through. Here in UK we are advised of the risk of long term heparin, I have been on clexane now for over 20 years. I have a dexta scan every 3-5 years to check my bones - so far I'm OK. Also on calcium and vit d for extra help.
We are grateful for you letting everyone know the risks, especially if US doctor's are not advising their patients.
I wish you a better 2024 and hope you can control the pain and APS more. xx
Awe so great to hear from you! I went to fancy NYCity doctors and hospitals too! My next stop is the Mayo Clinic if they don’t do the right thing! I and my sister Lynn have been doing our Homework on the Protiens and on My bones! Unfortunately my doctor never told me to get a dexascan! He said he told me I cud get osteoporosis, but if he told me then WHY didn’t he tell me of send me for a dexascan! It’s too late to complain now but was important for me to tell all of you! Much happiness and Good health in the Mew Year! Godspeed
I am so sorry Deb that this happened to you. I have learned to be my own advocate. I don’t trust Drs, especially with meds. I do a lot of digging before I take anything. I went to the Mayo Clinic. They missed my APS diagnosis, that was in my chart( I found it). They missed my skin cancer- I asked they to look at it, barely looked up from dictation. Ugh. And they missed my muscular dystrophy diagnosis.
I was in the medical field. I finally found a doctors to listen and I got answers. Deb, please don’t ever give up. When you go to Mayo, make sure they truly listen and look at you. It is an amazing place, but some drs there-well a lot- take the power to their head and become blind. Make sure you don’t go in to appointments alone. Bring someone to help speak up Mayo can be a very good place
I will be praying for you Deb
It’s interesting that a world wide ultra famous Clonic such as Mayo , can’t pick APS up easily. To be fair it’s hard . I had an unprevoked clot in lung . Thr fantastic young Specialost I had as sent to yo dianose it, did every test imaginable . APS was last and she got it . So grateful at her tenacity . Would be so hard for a G P with the huge array of APS symptoms and bumps on the journey to diagnosis .
Thank you for warning , Good luck with your health 🙏🏻
I'm also on LMWH and my Rheumy keeps an eye on it and gives me a bone scan every 2years or so. So far I've been fortunate to not have too much deterioration despite a few falls (tripping over the dog!) haven't broken anything lately. Hope you get sorted soon and Happy New Year.
What is LMWH , I cannot keep up with abbreviations 😂. Not always in google .
Low Weight Molecular Heparin. I'm in Australia so can also have different generic names. Here it's called Clexane, but can be Enoxaparin, Deltaparin or other names in different countries.
I foster Guide Dogs so they can be anything from fully trained or (very 
) partially trained. The good thing is they get me up and walking every day otherwise I might just be a blob sitting on a chair at home!
That’s great that you walk! I was told walking best thing for me! Unfortunately I have a prosthetic leg due to unknown APS at the time! We have bad weather here and I can’t go out to walk, but I walk back n forth in my house! Thanks for the reply! Nice to hear from you!
All respect 🙏🏻🙏🏻
Thank you so much! Happy and healthy New Year to you too!
I am so sorry to read your journey! I'm a fan of The People's Pharmacy show. Nearly all drugs have side effects but, in part to the control exercised by Big Pharma, many doctors remain ignorant of those side effects. Thanks for sharing your story! We all hope that your story can help others.
To be fair to docs and pharma, at least in the states , every script a patient receives comes with a pamphlet stating all known side effects of a drug. Patients have the info they need to decide if the benefits outweigh the risks literally in their hands with or without the doctor’s explicit direction. All med’s come with many risks and the doctors know this but deem the benefits to be greater than those risks. Clots today or osteoporosis in ten years?
My, sister and mother, never on any anticoagulant treatment, both have been regularly scanned for osteoporosis and both have it. Here it is common after menopause to check for it but socialized medicine, which I agree with, needs to do a cost to benefit analysis and just like standard early colonoscopies and mammograms some testings considered standard here are deemed unneeded there because the costs out weighed the overall benefits.
I hope you feel better soon.
Osteoporosis and o arthritis , common in humans . Archaeologists on XRAYS of bones of medieval Britons have found it And no medication back then .
Kelly- This is super scary news. As a, twice. Lovenox user this concerns me greatly. I had a bone scan recently due a post partial nephrectomy to remove a 2 inch tumor which turned out to be Clear Cell Renal Cell Carcinoma. The scan revealed bone islands on my spine. The doctor is not concerned about bone cancer, but I wonder if the bone islands are related to the side effects of Lovenox. I have pretty constant bone pane. Not sure what to do. There seems to be very limited knowledge about APS, let alone all the treatments they put us on, like Lovenox.
Yes make sure you get Dexascan! Had my hemotologist told me he would have sent me for a dexascan and I’d have taken precautions to try to prevent this! He’s the one who put me on it he shud have told me! Yes it’s very scary! They don’t know enough about APS cuz if they did they tell me that’s y I have protein in my urine! Oh and yes have tendency to get kidney disease! Y just schloff it off for me to investigate! I’m paying them to treat me! The medical in the USA is getting very bad now! Hope you stay well! Sorry to hear about your kidney issues! Stay well and safe in the new year! Godspeed
Thank you. I hope you recover. I too have learned that we have to constantly advocate for ourselves. I do so much research I feel like I have earned a medical degree! US healthcare has declined, unfortunately, but I have found a few great doctors luckily.
also make sure you take vitamin D everyday and get a good source of calcium in your diet! Ask to be tested for vitamin D levels and your calcium levels! This is very important for people on Lovenox! Be well
Beware of calcium dosing , I did the calcium supplementing and Vit D , my Haematologist told me to stop as blood tests too high in calcium ( I eat cheese yoghurt skim milk ) Vit D has a role in that. I go by the results of the 6 monthly blood tests done because se of APS and on Rivaroxaban . If Calcium’s and D normal, no additional needed .
Actually, this is Deb’s news. I’m about to respond very soon. ( trying to find my quiet moment to do it justice.)
Myatabella YES YES quoting you from your reply ‘here seems to be very limited knowledge about APS, let alone all the treatments they put us on, like Lovenox.’
TRUE . My Haematologist in charge of my APS care believes me , but is amazed at the conditions and symptoms APS kindly gives me . I always mention. IT SUCKS 😂
YES I've known about the side effect, bone loss for a long time. My friend was on shots and she lost her bones too! I've shrunk too.Aps can also effect kidney's! So watch the kidney's. I'm in dialysis now.
Hi there, sorry you have been in the wars again, hope you had a bit of Christmas cheer??? Sending you a huge hug across the pond. MaryF
Hello Deb! Happy new year, and I sure hope you assemble a better , more comprehensive team.
I was switched from warfarin to enoxaparin ( every 12 hours) about 14 months ago.
My dexascan base line was done just after ApS diagnosis end of 2016 and was fine.
2022 I was in osteoporosis ( -2.5 in a hip) and osteopenia in several other places. I was started on prolia injections every 6 months with improved dexascans!
It’s important that the dexascans are done on the same machine by same provider if possible for best possible accuracy.
Usually LMWH does not cause drastic osteoporosis. ( as I understand it.)
What other factors do you have that could cause this?
I, for example, found out through genetic testing that I have a rare genetic connective tissue disease called Loeys-Dietz Syndrome that has many complications. Osteoporosis is often a complication of loeys Dietz .
I need to remember to ask about a calcium/ plus ? Supplement. My blood work panel that my rheumatologist draws yearly did show ok, so I haven’t thought much about it.
I would ask your rheumatologist if any other issue could be exacerbating the bone density loss in addition to LMWH, and how you might address those other issues, if any.
Kidneys… it’s important to never let anyone biopsy the kidney in an APS patient. It can cause clotting complications within the kidney , believe it or not.
Anecdotal evidence indicates that some patients do well with rituximab. ( I’m one of them.)
We tried 1000 mg every 6 months, then every 4. Then 500 mg. That was not enough. Last dose was 750. It seems to suite me.
We dose it according to rheumatoid arthritis protocol, but every 4 months instead of every 6.
The antibodies come back up about at the three month mark and I can feel it’s time again.
I’ve been on Lovenox now for 18 years, and was told that it leaches calcium out of your bones and causes osteoporosis. I have osteoporosis in my hip, and osteopenia in other areas. a number years ago I tried to pick up a pot in our backyard with soil in it to move it to another part of the yard and when I picked it up, i heard something go crack!! and I was an instant pain. Like you, that was my T12.
I have constant back pain. Sometimes low pain that I ignore other times at a level 10 at requires pain management. I’m alive, and in my scenario, I don’t have the luxury of being able to choose other blood thinners..
I was on Fosamax for five years to help strengthen my bones and I do believe it mitigated some of the bone loss, but studies indicate there’s no value value and taking it more than five years.
That’s hard to swallow, not believe women . ? Ouch, are we not trying hard enough ?
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