Please let me know if Boniva infusions are lowering my blood platelets as I have Lupus SLE and ever since I started the Boniva my blood levels and liver levels are very low. I have also developed many many black and blues which do not hurt all over my body. I developed lock jaw, and get very bad tigntening in my throat and chest by the end of the night. Also very gassy
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Q: Have Lupus and started taking boniva infusions have side effects
Answers (1)
6/16/09 2:57pm
Hi PMonte, welcome and thanks for your question. All of the symptoms you've mentioned, except for the lock jaw, are symptoms of systemic lupus. Have you explained all of these problems to the Dr. that is treating the lupus? I would talk to that Dr. and see if you can confirm this. I'm so sorry you are having so many problems, but the things you've mentioned are not uncommon with SLE.
Low platelets and liver counts are associated with SLE. When your platelet counts drop it can cause bruising like you mentioned. Are you seeing a Dr. that specializes in blood problems (hematologist)? You should have this checked out by a Dr. that knows how to treat these problems, if your regular Dr. isn't addressing this.
Gass can be caused by Boniva, but I've never heard of any of the other problems associated with that medication. Lock jaw isn't seen much if you are up to date on your tetanus shots since that vaccine will prevent it. Could you possibly have some other type of joint problem in your jaw, like TMJ? This issue would be something to discuss with your primary care Dr. or an oral surgeon.
Here's a list of side effects for Boniva, from HealthCentral that you can read. Good luck with the treatment for SLE, and osteoporosis that's a lot to deal with so I wish you the best.
6/16/09 4:52pm
Hi PMonte, you're very welcome. Do you happen to know what your platelet/liver counts are? You don't want your platelet count to drop too low because it will cause the bruising and some possibly bleeding, from cuts, nose bleeds etc. I've had problems with this and if it gets too low you need to have it treated to prevent any further bleeding that you may not be aware of. A Hemalologist is a good Dr to see if your Rheumatologist isn't thoroughly versed in thrombocytopenia (low patelet count) or abnormal liver counts.
I do hope you aren't having all the other symptoms all at once. Usually all the symptoms you mentioned are things that can occur with SLE, but generally during a lupus *flare* and hopefully that isn't happening non stop. I would imagine that your Rheumy is treating the SLE with some medication so I hope that helps to ease some of these other problems.
Just be sure that your Dr. is aware of all of this, and if you can, start getting regular copies of your labs, so you can keep track of your various blood counts and other tests. This also gives you the option of having copies to give to another Dr. when they need documentation of your latest blood work. I get copies of all my test results/surgeries etc., so I have my own set of records which makes it so much easier to pass along to other Drs who may need them, plus it's a good way to begin to advocate for yourself by staying abreast of your medical test results.
Good Luck and keep us posted on how your doing.
6/16/09 5:42pm
My symptoms do all come at once which is very frustrating. I don't know what my blood platelets are just know that Dr. said they were dropping very low. Do you know what types of treatments there are for the platelets? My Dr. has mentioned IV Kimo, and quite frankly I can't put myself through this. My hair is just growing back from the Lupus and I can barely get up now. I don't want to throw up, and feel weak also. I will get copies, never thought of asking Thank you.
6/16/09 6:09pm
Hi again, there are several treatments for low platelets, but first they have to confirm the cause and if indeed it is thrombocytopenia. There are several simple blood tests to determine this type of blood disorder, but since you've mentioned the IV treatment, it sounds like there are other medical factors involved since I've never heard of giving chemo for a platelet disorder. After the Dr runs various blood tests, to determine the cause, then they would go from there with whatever treatment would be best factoring in all your differing problems.
Since you have several medical problems going on at once, it would be impossible to say how they would treat this. If it was just a blood clotting problem, there are meds to treat that, but it would depend on how these would react with the SLE. It sounds like your on the right track, but I would ask about a second opinion with a hematologist just to be sure they know what's going on and if it can be solely blamed on a platelet malfunction or if something else is causing that and the other problems.
I'm sorry you lost your hair, but that's great it's coming back in!!
Hang in there, and keep up your strength!
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By PMonte— Last Modified: 12/02/10, First Published: 06/15/09
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Thank you so much for the information. I am currently seeing a Rheumotoligist for my Lupus and Boniva IV. I will ask about a Hemotoligist. Thanks again.