Anyone treated with Lovenox shots for DVT and PE?

[Lilly]

Hi friends, I have not written in awhile. So much has happened to me in the last 2 years, I have to refer to my calendar (which I kind of use as a daily journal) just to keep up with my health issues and the order they came in and which Dr. to call about what I am going through now. I will just try to be direct and not explain everything......OK, I have been in a semi-remission for many years, and stay on 5mg. prednisone to keep my "Limited Wegeners" at bay. Then, about 2 yrs ago, I began to have lung problems. So this is what happened......went to PCP.....CXR was normal, but put on breathing treatments and diagnosed with "Asthma"....Nothing really got better, so I went to Pulmonary Dr. He ran every test....the ones that test the lungs, he did Xrays and CTscans.....My lungs looked cloudy, but nothing positive....small granulomas or spiculated areas of tree branch looking unknown what they are. But Follow up to see if there are changes. My coughing, lung burning, etc. not getting better.....So now...I basically did all of the above over a few times, lung tests, xrays, no change.....Then Cardiologist did a Bronchoscopy.....WaLa!! I have MRSA of lungs. :-O A month of (or 2 mo) of putting 2 super strong antiobiotics in a picc line I had inserted at the hospital. So I "poisioned" myself twice a day. Now, after this process, it is basically "assumed" that the MRSA is either gone, or at bay....they cannot test unless I have another Bronchoscopy. But the meds are so strong, there is no reason to go through that again. Now, Jan.2016.....throat hoarseness, wheezing, a new CT scan done. No noticeable changes, and at the same time, I am getting ready to hopefully get my Rituxan infusion, because I am thinking that all the lung issues, (plus other issues I have not mentioned) are Wegener Flare Up....my typical rash I get at flare ups....etc. I am hoping that will take care of it all! By March, my Rheumy had me on 40mgs of prednisone, (to see if it would help before doing infusion) and then I broke my left foot. And I am having hematuria....blood when I wipe when I urinate....I do not menstruate because of Cytoxan. I already had menopause at age 26. So, took 2 rounds of oral antiobiotics....no help. Then went to urologist, had Ultrasound and CT scan of bladder, uterus, etc...nothing abnormal...so he did a cystogram. No problems....So went to Gynocologist for poss answer.....Ultrasound internal and external.....nothing....pelvic exam, nothing.....she could not see anything that could be causing the light bleeding after urinating. And believe me, between the urologist, the gynecologist and me, we could not figure it out. So while that was put on the back burner, in April, 2016, I went to my Orthopedic Dr. because I had to stay off my feet and ice my broken foot, but I was in terrible pain up that leg, and something told me that something was not right. So she did xrays, and on a gut feeling, did a Doppler ultrasound in my leg, where I was having pain, behind my knee, and up my inside thigh, and my calf was red and swollen. So I was given the news I had a DVT....Ok, freaking out.....went to PCP, left his office with a bag of Xralto samples, feeling very uncertain, scared, and terrified.....but I took the pills. I was still trying to work, but had not been able to go very much. But May 18, I was at work, and was SOB. I called my Cardio Dr. and they said go to ER. And I did not leave the hospital for 5 days, They found a PE. So, not knowing if it was an old clot, or one that broke off while I was on Xralto, My Cardio Dr. put me on Lovenox shots. I am on them now. I finally got my Rituxan Infusion July 6, 2016. Many things began getting better that I had been suffering from, severe sinus pain, inflammation, etc. It was great, but then, the tubes in my ears became clogged, and the Jtubes in eyes were shifting and stopped working. Well, this is all normal, its like a maintenance thing......But now, I am on blood thinner, so EENT does not want to remove my ear tubes because if he takes it out and it is somehow attached to my eardrum, I could lose my hearing. So, I am putting the ear and eye issues aside for now, along with the hematuria, and just keep taking the lovenox shots twice a day. The Cardio Dr is going to run tests after Christmas and see if I can come off the Lovenox. So, right now, I am having a terrible daily existence! I don't want to complain, and I am thankful for having all these great doctors......But my issues now are.....My left ear has loud white noise constantly, I cannot hear through it. At night, my pounding heart is so loud in that ear, I don't know why. Also, If I do a couple of light household chores, I begin to sweat profusely, and get nauseated, I cannot get a deep breath, and I have to sit down and wait until I cool off. I am nauseated almost all the time. I wonder if I am nauseaus because of my ear, or the lovenox shots? Also, I cannot take heat, even a shower has to be cool, or I will become very short of breath, dizzy and nauseaus. Today, I took a shower, and by the time I dried off, got dressed, etc....I actually had dry heaves, and would have thrown up if I had anything on my stomach....Just from a little exertion! I am wondering if it is possible to get lung blood clots while on lovenox shots. My Cardio Dr. assures me that the chances of that are very very unlikely. And also, each Dr. I go to, they always to the finger thing that tests your oxygen level somehow. And I am always OK. My lungs always sound fine to any Dr I go to. So now, I have no energy, I am short of breath when I do anything for more than 5 minutes, I cant hear well, and feel dizzy and sick all the time. I still have blood on the tissue when I wipe. So, I just don't know what to do. Am I crazy? I would go get a urine test and kidney work up, but the last time I did that, all was normal, so why go through it again? And should I go through the tests to look for blood clot in my lung? Or is it a waste of time, because it has all been tested, and I'm on blood thinner. I am so confused. If anyone can relate and help me with any one of the problems I am having, please , I would love to hear from you....... I always write so much, but you would not believe how much I left out! Blessings and Love......Lilly

[mishb]

Oh honey this is a report I didn't want to read from you.
I was hoping that you were off having an amazing time and enjoying life.

I'm sorry that you have gone through such troubles.
I can't relate to the blood clots or the thinners but I'm sure there are others that can.

A lady that I work with, her husband has had quite a few blood clots in his lungs and is on different kinds of thinners, and only the other day had a test done and they found out today that he has some sort of genetic marker that makes him prone to clotting. He now has to get his siblings to be tested as well. I have never heard of such thing, but there you go.

I know that I am not qualified to say, but I think you should get your lungs tested to rule out any further clots.

Take care lovely lady. I hope everything works itself out, very quickly

[blu4runner]

I have to deal with DVT in my legs so I am on coumadin on a daily basis. Whenever I need a surgical procedure we stop the coumadin and I take the lovenox shots 2 times a day. Both seem to do the same thing. Personally I hate the injections because the bruise and sting when I give to myself. I was told by my dr to plan to be on the coumadin for life so I get my INR checked to keep it all in balance. I really did not seem to have any adverse effect from wither the lovenox or coumadin.

Best of luck in thew continued treatment.

[Lilly]

Thank you sweet friend.....I am terribly afraid of the beginning of lung issues. The doctors don't have any straight answers for me, but I think that I am suffering from scarring and damage of my lungs from just having wg for years, and its just like the sinus, nose and ears, the dz never stops,,,,,it may slow down, but it never reverses, it only does more damage. I just want to stay on top of things, but it seems like there is so much going on right now, I am just, for the first time, a bit afraid. I just feel kinda out of control of my body right now. But I realize now that I need to stay plugged in to the forum. I have already read things that are answering some questions for me. Thank you for you friendship, and your advice. I feel the same way, and will prob. go ahead and get an appt. with my Lung dr. ASAP He is amazing, and we have a good Pt/Dr relationship. I have always listened to my body, and I'm not going to stop now. Take care.....Blessings and Love

[Lilly]

Hi there blu4runner, it is nice to meet you. Thank you for the information. I'm sorry you have the DVT and have to take the thinners for life. Me and my Dr. are hoping that I only got this DVT because of the foot break, and being sedentary for so long. But then finding the one in the lung a month later, while on Xralto, kind of shook me up. Being a Wegeners Patient makes me a "Wild Card" my Drs say.....they cant always rely on the tests and meds they use on "normal" patients! Ha....I also peeked at your profile and noticed you are having the tubes in your ears also....my last visit to my EENT, he told me that I should start thinking about getting a hearing aid in my left ear also....So, I have that to look forward to. Take care, and Thank you again for sharing your experience. (my tummy looks like someone beat it up with a hammer! It is so many beautiful shades of purple, green and yellow!) Take Care! Blessings....Lilly

[Alysia]

Dear Lilly, I am so sorry for all those tough issues you have to deal with... how I wish I knew something that can help you... get an oximeter for home use and try to check your sats after the shower and in all the other events of shortness of breath. Maybe it will give some info... hang in there... sending my love & keeping you in my prayers ♡♡♡

[darl-p]

Lilly, I was looking through some of these threads for others who might have had a problem with DVT and come across yours. I had a situation last week where my feet did not look like identical twins and my leg felt tired. I also was short of breath. A photo through email to my Rheumatologist got me an appointment with my PCP. It took her about 30 seconds to order an ultrasound on the leg, which showed the clot. She then ordered a CT of the lungs which showed multiple clots in both sides of the lungs. This got me an "all inclusive" stay in the hospital for observation. I was put on 5 days of Lovenox shots twice a day. Then I graduate to Pradaxa. I would only have to be on Pradaxa for 3 months if it were not for a recent diagnosis of A-fib which means that I will have a lifetime of use. My restrictions now are that I need to take life a little slower and also no air travel for 6 weeks. My "team" has been very responsive due to the Wegeners of anything out of the ordinary . Why the DVT? It could be Wegeners related or just life related BUT several months ago my Rheumatologist had taken me off Imuran as he felt that I no longer needed it. This was against the wishes of the other team doctors. A change of rheumatologist got me back on Imuran right away. Was the DVT due to Wegeners? Some discussions say maybe. Pradaxa versus Coumadin? No dietary restriction nor any blood tests with Pradaxa. Anything to help simplify my life. I would strongly suggest that you push for a CT of the lungs. Good luck

[Arleta]

So sorry for all that you are going through! I had many blood clots when I was first diagnosed. I was at Cleveland Clinic for an appointment with my rheumatologist. They also did an ultrasound of my legs and did not want to let me go home---I live about 4 hours away. I had to sign a paper releasing them of any responsibility and promise to go straight to my local hospital, which I did. I had the shots in the hospital, and also had them at home. It is really difficult to get the level of blood thinner at the correct level, so I experienced blood in urine, bloody nose, etc. I was also on coumudin for quite awhile. I had a filter put in to keep clots fron traveling upward. I still have that in. I have permanent damage to the valves in my legs, so I need to keep my feet elevated when sitting whenever possible. I wear compression stockings when travelling any distance.

I also experience hoarseness whenever I do too much, hearing issues, etc. It is all related to Wegener's. It has been almost 8 years since I was diagnosed, and I am still on Imuran. I have not had a real flare, but always have symptoms that are fairly minor....but do affect lifestyle---fatigue, etc.

Stay in touch with your doctors, and I think keeping a health journal is worthwhile. Hang in there!! You are in my prayers! Arleta

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[Lilly]

Hi darl-p, so glad to get your message. It has been challenging dealing with the blood clot issues and having wegeners. You read my story, so you know that I only had 1 blood clot in my lung, but it was not discovered until I already had the one in my leg treated with Xralto. My Lung Dr was trying to find out if the lung clot was old or new, after Xralto treatment. Then he decided that it was just best to put me on a medication that he felt would be the best for me. He told me that he chose Lovenox because it was short acting (in case I needed to have a surgery, we would not have to wait a long time for it to get out of my system) and, like you said, no labs needed, and no restrictions. My problem with Lovenox is the price. I have Medicare A,B, and D. I am in the Medicare D. Gap. So my cost for the shots went from $8. a month, to $400. a month. So, thanks to your message, and other friends here on the forum, I believe I am going to have my lungs looked at for new clots, and see if I can change my treatment to a less expensive medication. Thank you again.....Blessings and Love