need help I’m back

[Debbweb01]

hi it’s Debbie is Mary stlll posting! I have APS for over 8 years that I know about! Could never be regulated on warfarin! I was put on Lovenox/Enexoparin 8 years ago! I was opening a difficult window and broke my back! Needless to say my hemotologist NEVER told me I cud get osteoporosis from Lovenox! Hence I’d have taken precautions to try to stop it! Most people who Break t12 vertebrae Rest and wear brace and heal on their own I warned them I’m their worst nightmare! Needless to say I’m the 4out of 100 that don’t heal! I had surgery Aug 6th and was supposed to get up and walk out without pain! Meanwhile I broke my back June 6th! These are big NYC doctors I go to! I walked out still on anesthesia and he numbed my back I was so happy till I woke up in excruciating pain, I already lost my left leg to APS b4 I knew I had it! That went on past weekend! Pain in my hips my kidneys my right leg going numb! My kidney function test not good got cyst on kidney left one! My doc told me to call an ambulance and don’t move a stitch till the hat there! He orders the appropriate tests and the surgery perfect a success! He admitted to me he has no idea y the pain! I’m surprised he admitted it and greatly appreciated it! Love him so he recommended me to pain management doctor whom I like! I went and he had no ideas y So I’m having MRI of hip and pelvis next week! Does APS cause early stage kidney disease???ot what’s causing these pains in abdomen, groin hip numbness and tingling in hip? They said my broken vertebrae was so severe I can have those pains I’m healed fro that but can’t walk sit or stand without severe pain! I need help! I’m seeing Nephrologist on Sept 6th and that’s with calling doctor’s personal secretary! Otherwise Oct 26 and I called 17 nephrologist!! Any ideas it’s been too lon with this pain and miss u guys! Hope Y’all are doing well

[lupus-support1 Administrator]

Dear Debbie,

I am so very sorry to read your post. Yes, Mary is around & will get back to you as soon as she can!

With good wishes,

Ros

[Nanny23]

Hope you get some good answers. Some very helpful people on here. ❤️

[Dot69]

Oh dear Debbie your pains sound unbearable, hope you get the help that's required

[Debbweb01]

yes thx for asking it’s nice to be back! Hope you’re well! Godspeed

[GinaD]

I'm so sorry you're going through this. As I understand it, Vitamin K helps build bone. Fortunately, my APS has been managed well with warfarin. But, on the advice of a doctor back in the 80s, I find my INR stays most stable when I continue to eat high K veggies and take a scheduled, but fluctuating warfarin doseage. Of course, ever since going gluten free in 2004 all my APS blood tests show no markers of the disease. So I stay on warfarin, but maybe my decades long remission is permanent. Again I am so sorry to read about your pain. This disease has so many variables! I do hope and pray that an effective treatment lies in your near future. Keep us informed!

[Debbweb01 in reply to GinaD]

Hi Gina Glad to hear of your good news! I realized what happened! I warned my doctor that I’d be his worst nightmare! Well I am! He admitted he doesn’t know what happened to me! Unfortunately I do! I was told by my pain management doctor, that my surgeon recommended that I shud not expect the results I wanted due to I’m 8 weeks past having surgery! He said in order to have the surgery work I needed it by 6 weeks, I was already 8 weeks out! I have a spinal cord injury! The bone compression kept on getting worse with time and the inflammation caused it to lean on spinal cord! I live in NY so it’s been difficult to get scheduled for surgery! I had it pushed up by begging secretary by a month, but still too late! I’m now stuck with this! Unfortunately I’ll need physical therapy for the rest of my life! Meanwhile I’m waiting for appointment with Nephrologist! My bone specialist won’t put me on any meds Golgotha the osteoporosis till I get results from my kidney function tests! I’m glad to hear from Y’all! I pray you’re all doing well! Godspeed

[KellyInTexas Administrator]

hey Debb,

How awful!!

1. I take it you are still on lovenox? ( have been for some time?)

2. What is your age? Did you have a hysterectomy early, and if so were your ovaries left? In other words, how long has it been since your ovaries have been providing you with your own functional hormones?

3. It could be the lovenox ( enoxaparin) is not fully to blame. All factors must be looked at. For example, what other autoimmune diseases you you have? Osteoporosis can be part of the autoimmune profile for a few of these autoimmune diseases. ( we can be low on many vitamins and minerals .)

4. Has anyone discussed Prolia with you? It’s a once every 6 months injection to help build your bones . ( “shore up your shabby scaffolding.” I’m on these injections. No problem at all with it.

5. I’m having a lot of hip problems. Multiple problems can happen with hips, I’m learning the hard way. Labrum tears, impingement, arthritis wearing away at the femoral head, to name a few.

Of course, we as APS queens, have to watch for a vascular necrosis of the bone. ( head of femoral bone.)

6. Kidneys- microclotting is one problem. Others can be portal vein, renal vein, … I do remember on a patients day video of Dr Hughes, a specialist said never biopsy an APS patient’s kidney. ( I’m sorry I don’t remember more… I believe it could trigger a bleeding complication. )

These are my thoughts. I wish you the very best and my very warms wishes are with you for pain management and healing. Please let us know how you are, and how things progress.

[myarabella]

Hi Debb- Your situation is hughly concerming and my heart breaks for you. I would like to share a few things. I ha e APS too, but only 2 of 3 markers. I take low dose aspirin (81mg) daily. When I was pregnant I was on Lovenox for 8 months, then Heparin. This was over 15 years ago. I recently was diagnosed with a kidney tumor, had a partial nephrectomy and they found Clear Cell Renal Cell Carcinoma. I took Lovenox for 60 days post operatively to reduce the risk of blood clots. The surgeon thinks he got the cancer out I needs cans for several years., 3 months post op, my CT showed bone islands on my spine. Also. I have horrendous pain in one shoulder and down arm. They think it may be frozen shoulder. I am awaiting MRI results, and I am having a full body bone scan to find out what is happening. One comcern is that there is a chance the ca cer could have moved to my bones, unlikely, but a possibility. I want to warn you that those of us with APS should never have a kidney biopsy because the risk for throwing a clot is very high. My surgeon told me he would not do a biopsy for this reason and he had enough info with my MRI, CT scan and Ultrasound to know the 2 inch mass had to come out no matter what. I would like to learn more about this bone situation you have. I got the early COVID back in early 2020 and they found my first lower leg DVT. It resolved, luckily. While I was sick with COVID, and every time I get sick, I experience horrific bone pain. There seems to be a correlation. I pray we are both able to get to the bottom of it and heal.

[MaryF Administrator]

Hi there, yes, just for a change I have been away camping, back home one hour ago. Once again it seems that you have had a really bad time and the condition has been leading you on a merry dance. I hope all the doctors/consultants can put their heads together and come up with a plan for you. Make sure they check your B12, D, Ferritin, Folate and Thyroid function to make sure nothing is out of kilter to be making your situation worse, sending you best wishes from the UK xx Mary F

[Thick_Blood]

I have been on Lovenox/Enexoparin 18 years. A number of years ago I went to pick up a big flower pot in the back yard, it was full of dirt, heavy and when I lifted it, something went CRACK. It was my t12 vertebrae. I took phosomax for 5 years to stabilize my Osteoporosis. I live with daily pain due to my collapsed T12. I don’t pain meds every day but I do often.