posted
Caught between a hematologist (a duck but a very nice one) and LLMD and have to make a decision quickly.
Daughter has had several picc lines; when she began having clotting problems, tests showed a protein S deficiency. Went to the mediport, and following the advice of the hematologist put her on warfarin ( against wishes of LLMD who wanted lovenox). INR levels fluctuate from 1.2 to 3 - not stable. Then, to add to the mix, she developed a white patch in throat - possible fungal infection or mono. While waiting for test results, doc put her on diflucan which sent the INR to 6.4! To add further complication, platelets dropped to 49.
We once again asked hema. to switch to lovenox. He won't because of the risk of bone loss, but says that with platelet count she shouldn't be on either one until it comes back up. He recommends taking out mediport.
LLMD says switch to lovenox and keep mediport in.
I have read information on Dr C's website and Hemex Lab's site; but still don't find answers to all my questions. So I am asking the true experts - YOU:
If both warfarin and lovenox thin the blood, and you add other meds with blood-thinning properties, then don't you get further thinning - too much thinning? Case in point - diflucan. LLMD wants to add even more meds that may thin. Since INR isn't impacted by lovenox, how do we know whether blood is too thin?
Have any of you done the lovenox while on IV?
Have any of you continued to get benefit from IV ABX after three years of periodic IV treatment?
It seems to me, from reading many threads, that the trend may be changing direction AWAY from IV's after initial therapy, especially as alternative therapies are incorporated. What do you think?
I really need imput from you, based on your experiences and knowledge. We have made an appointment to take the port out next week. I feel that we are closing the book on IV therapy, but given the instability of her blood, I feel it is the safest course. I also feel in my gut that we have gotten all we can from hard-core abx - 8 weeks rocephin; another 12 weeks rocephin; two rounds of doxy- one to two months each.
What do you think? I'm sorry this is so rambling and fragmented. My head is spinning!
Posts: 422 | From Herndon, Virginia | Registered: Oct 2005
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Jellybelly
Frequent Contributor (1K+ posts)
Member # 7142
posted
I have had a lot of experience with heparin, but sorry none on the IV ABX. My feeling here is not whether you use IV but rather whether or not you herx significantly while on ABX at any dose. When first starting ABX, I herxed severly on 3mgs, so an IV would probably kill me.
When I herx my coagulation gets worse and I always needed to increase the heparin a bit to accomadate the change. When the herx stopped for whatever reason, I would be able to drop back down to my original dose and finally have been able to get off the heparin altogether after 3 years. I use NattoK now for maintenance.
What I have read about heparin versus warfarin is that heparin if by far more stable and easier to control. Warfarin can stay in your system for weeks. That makes it difficult if your blood should get to thin to reverse. Heparin has a very short half life, and that is why it must be taken 2-3 times a day. So if blood gets to thin, it can be reversed quickly and your blood will quickly return to whatever is normal for you at that time, good or bad.
As far as the bone lose, that was a major concern several years ago, but I don't think the concern is that great any more. Orignianlly they wanted you on heparin no more then a few months. That wasn't enough so doctors started pushing the walls of the box a little at a time and bone thinning doesn't seem to be the major problem that they had anticipated. I think the reason is that the dose we take is so miniscual compared to the dose that cause osteoporosis.
I was on the regular heparin for 3 years, and the lovenox or low molecular weight heparin has an even lessor chance of causing bone thinning.
My daughter also used the heparin for nearly 3 years, and has a beautiful little girl thanks to it. She continued on the heparin right up until hours before the birth and started back on immediately after, no problems. I have had a couple of minor surgeries while on the heparin and docs didn't even bat an eye when I told them I was on it.
So I would talk to your LLMD and read all you can on the subject. Here is a place where there is a lot of info on the subject.
posted
Troup and Jellybelly, Thanks for the info. It did answer some of my questions. I'm going to go over it carefully this weekend before making a final decision. Doctors have their textbooks, double-blind studies and their own patient case histories; but the people in this group have the 'down in the trenches' experience in addition to the research!
Posts: 422 | From Herndon, Virginia | Registered: Oct 2005
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posted
What about blood becoming too thin, or low platelet count. So many of the meds, e.g. diflucan, levaquin, and even supplements such as the omegas already thin the blood. When you add heparain or lovenox to that, don't you run the risk of thinning the blood too much? And I have read that heparin can lower platelet count. I am convinced that we need to try this, but I need to reassurance on these two concerns. Her LLMD is sick and not available to answer. At the moment, she is 7 days off warfarin and is on no blood thinner at all. I don't feel comfortable going more than another week without either trying the loveox or getting that port out.
Posts: 422 | From Herndon, Virginia | Registered: Oct 2005
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