View Full Version : thrombocytopenia
05-15-2006, 11:31 AM
Hello everyone...I am new to this forum and am excited to be here. I am 19 years old and was diagnosed last summer with SLE lupus. My major symptom is low platelets (thrombocytopenia), but I also have fatigue, easy bruising, hair loss, weight loss, and other symptoms that may be side effects to medications I am on. Almost a year later, my condition is not yet under control, but this is expectable. I am on several medications, including prednisone, plaquenil, mycophenolate motefil (cellcept), prevacid (for my stomach), and fosamax (for my bones). When my symptoms worsen, these medication dosages change accordingly, and I find this to be the most frustrating part, as I start to lose hope. I get my blood drawn nearly every week to check my platelet count, which tends to fluctuate very easily. The lowest platelet count I have had is 42,000 and I assume they would have kept dropping had we not caught it. The highest I had is 186,000 but that was because I was on 60mg prednisone for almost 2 weeks, and I don't want to do that again! I was hoping to meet people who have lupus-related blood diseases, particularly thrombocytopenia. My rheumatologist has had patients like me, yet it seems we can't get this under control very easily. So I was hoping to see what others have done for treatment, to see what works and what doesn't. I am hoping to be able to beat this lupus without all the medications! Thanks for reading.
06-15-2006, 02:20 PM
We are here for you and I hope that you will find something that works well for you.
06-15-2006, 03:14 PM
Just wanted to say hello and welcome to our family. I, too, hope that you and your doctor are able to find a treatment that works for you and that you are able to level out your meds.
Just know that you are not alone and you will find that everyone here is understanding, comforting, informative and supportive.
Peace and Blessings
06-15-2006, 05:40 PM
Hi Jordan: good luck finding a treatment that works best for the thrombocytopenia. We're here for you in any way! :lol:
07-26-2006, 01:41 AM
I am having the same problem with platelets. I am newly diagnosed, though I suspect I have had lupus for yrs. I also have severe degernerative arthritis, with joint repalcements, and DX of fibromyalgia (by a great neurologist) about 10 or 12 yrs. ago. I cannot take prednisone, unfortunately, because of severe allergic reaction, so I am stuck on Decadron, another steroid, not the drug of choice. Every time I start to cut back on the steroid, my counts plummet. I have been as low as 36,000. The last 3 weeks I went from 166,000 to 126,000 to 56,000, when I started to experience bad nosebleeds, so I am back up on the dosage of decadron. This drug gives me SEVERE muscle cramps, so I take a muscle relaxer at night that is a spinal cord injury drug - I think it is Balfor. I also have bad muscle weakness and confusion from steroid, so I usually cannot drive, walk with out a cane, or stay upright for any period of time. I have missed just about everything the last month and a half, and feel like I will be stuck on this crap forever. The terrible thing about it is, I felt fine when my platelets were 36,000, even though I was not fine, it's the old cure will kill you syndrome. I had tests to see if I have the correct enzymes to take Imuran, which is a chemo drug. Have they spoken to you about this? I don't know much about it; I do know one person with Crohn's disease who has been on it long term with few side effects and good results, so I have high hopes I will get off the decadron. The test results take two weeks to come through, and I have another week to wait. Did they take you off Plaquenil as a test for the platelets? Plaquenil can cause platelet drops. For myself, it turned out to not be Plaquenil, but lupus. I have had two other flares, both of which were vasculitis, and one time I had some heart involvement with fluid around my heart. They are now talking about sending me to hematologist. That is what drives me so nuts about this stuff; the rheumatologist "manages" everything, but there are so many other docs involved - I now have a dermatologist, cadiologist, allergist, and soon a hematologist. Well, thanks for the chance to vent, and glad to meet someone who lives by the weekly count.
07-31-2006, 02:08 PM
I also have thrombocytopenia, and lupus, I wish that I could give you some good news on my prognosis, but I can not, Just hang in there and they will most likeley find something that will work for you, I have also had my spleen taken out because of the TCP, which did no good for me, at any given time my platelet count is at 24 and below, some times it will raise considerabley but not often, I hope that they find something that works for you. Hang in there It sucks but you have made it this far. :roll:
07-31-2006, 04:25 PM
Thanks for the words of encouragement! It sounds like you have really been through the mill, as my Mom used to say. My counts were up today to 124,000, so they will try once again to wean me off the decadron, but a bit more slowly this time. Meanwhile I am looking for a new rheumatologist, as I do not feel this one has a good handle on my case. He is a bit too clinical, and did not even pick up on the low counts - my primary care got copied on the blood work, and he initiated treatment. There are not a lot of them, like a GYN or a dermatologist, even in a big city, and I want to stay in my hospital system. I don't really care about stepping on toes, I just want the best doc for me; lupus is a complex disease, and I need someone more on my side. Best of luck with the platelets, it is just a crazy disease, with so many aspects to it. Thanks for writing, it is nice to be heard, and I appreciate it.
08-01-2006, 07:21 AM
If you are looking for a good rheumy, try calling the Mayo Clinic in Rochester, MN They may be able to help you find one in your area, they are considered the best hospital in the world, My rheumy is a mayo doctor and he is wonderful. Word of advise though, if you are not satisfied with your doctor then find a new one, I don't care if you have to go through a hundred of them to find a good one. I have had twelve total and I am very satisfied with mine, He knows me so well it is scary, He even cals me to make sure that I am taking my medications and to see how I am doing at least once a week, and it is him calling, not his assistant. I wish you luck, Hang in there!!!!!!!