View Full Version : Anyone with ITP? aka low platelets??
03-01-2009, 04:49 PM
Hey there guys...i posted a thread a few days ago and introduced myself but wanted to see if anyone on the forum has ITP? which is low platelets..i am currently on steroids and been getting Rituxan treatments ..of which i respond the first week then it stops working and my platelets drop again..back down to 15,000 this past friday. I was diagnosed with Lupus about a month and 1/2 ago by my pcp but my rheumy hasn't labeled it as Lupus yet. Said he doesn't like doing it until he knows for sure but yet i have almost every one out of the 11 criteria. But anyways...They are wanting to remove my spleen next, i am by all means trying to prevent this because i feel like they are missing something...i understand my immune system could be the cause of the destruction of the platelets but i feel like blood work alone could not determine some underlying cause. I feel if they remove my spleen the same thing will happen and it will only be a temp fix as well and all the meds and treatments they are putting me thru. Also sucking my insurance to the tilt! Anyways..would very much like to hear from someone else that maybe has the same issues as me..or anyone that knows anything that might be of some help!
Wishing everyone better days
Hugz and prayers
03-01-2009, 06:18 PM
glad to hear from you again. I am sorry, but I can't give you guidance on removing the spleen or even low platelets. I am sure that someone will be along who can help you. Your questions about surgery certainly sound valid to me.....you are very strong....keep up the good work.
03-02-2009, 06:22 AM
Just sending you hugs and to let you know im thinking of you. Somebody will be along soon to help you with this question.
03-02-2009, 02:22 PM
For many issues in Lupus, the underlying cause is usually due to antibodies. Low platelets are usually due to antibodies and not often due to the result of drug side-effects. When the count is very low, there is an increased risk of bruising and bleeding.
Idiopathic Thrombocytopenic Purpura (ITP) is the term used when the platelet count is low enough to cause very easy bruising. ITP has two basic origins: an autoimmune attack against platelets (primary or autoimmune ITP) and a bone marrow disorder (secondary ITP).
Primary = The bone marrow produces platelets as fast as usual (at least in the early stages of the disease), but even before they have a chance to mature, they are taken out of circulation. An IgG antibody attaches to the platelets and marks them to be removed from circulation. It is likely that individuals who suffer this disease have a genetic propensity to autoimmunity and that a viral disease triggers it. Many autoimmune disorders, such as Lupus, have this characteristic. Many times, ITP manifests as an acute disease, lasting a few weeks and then clearing up completely. It might recur again later after another viral infection or with reactivation of a chronic virus, but eventually it ceases to be a problem in the majority of children who experience it.
Secondary ITP. Some chronic diseases that affect the immune system - such as Lupus, HIV, or hepatitis C, may yield a combination of inhibited platelet production and shortened time that platelets persist in the blood, resulting in ITP. Because in this case it is some other factor (disease process or medical treatment) that is causing the clinical result, this type of platelet deficiency is termed secondary ITP and may be resolved by stopping this other factor. This condition involves a defect in the production of platelets by the bone marrow that can occur as part of a general bone marrow dysfunction, in which both red and white blood cells are also produced insufficiently. It can occur secondary to leukemia, in which the stem cells that yield white blood cells proliferate and crowd out the stem cells that produce platelets and red blood cells (yielding high white cell count and low RBC and platelet counts). Secondary ITP can also occur as the result of chemotherapy treatments.
However, there is another type of antibody that can reduce the platelet count and these antibodies can interfere with platelet function, causing increased clotting of the blood. This is known as thrombosis. This is a painful condition due to the fact that not enough blood can get through a blood vessel containing a clot. This causes damage to that part of the body. This can occur, for example, in the calf (deep vein thrombosis), and the clot can spread from a leg vein through the circulation to the lungs (pulmonary embolism). The underlying cause of this thrombotic condition is known as antiphospholipid syndrome because there is a group of antibodies present which interferes with phospholipids in platelets and other cells and proteins involved in clotting.
A diagnosis of APS requires the presence of both clinical and laboratory criteria. The clinical criteria includes thrombotic conditions as described above.
Many laboratory tests have been used to detect antiphospholipid antibodies. These fall in two general categories: 1) coagulation assays and 2) antibody binding assays.
1) Lupus anticoagulants: An antibody that interferes with a phospholipid-dependent coagulation test is referred to as a 'lupus anticoagulant' (LA).
2) Anticardiolipin antibodies (aCL): Antibodies identified in assays of this type may bind directly to phospholipids or, more commonly, to other proteins bound to phospholipids, of which b2-glycoprotein I appears to be the most important.
Idiopathic Thrombocytopenic Purpura (ITP) is the term used when the platelet count is low enough to cause very easy bruising. IDP has two basic origins: an autoimmune attack against platelets (primary or autoimmune ITP) and a bone marrow disorder (secondary ITP).
Thrombosis can be primary or secondary:
Primary = The bone marrow produces platelets as fast as usual (at least in the early stages of the disease), but even before they have a chance to mature, they are taken out of circulation. An IgG antibody attaches to the platelets and marks them to be removed from circulation. It is likely that individuals who suffer this disease have a genetic propensity to autoimmunity and that a viral disease triggers it. Many autoimmune disorders have this characteristic.
Primary (or 'autoimmune') thrombocytopenia occurs mostly in children and young adults (typically before age 30), though it can rarely occur later in life. Many times, it manifests as an acute disease, lasting a few weeks and then clearing up completely. It might recur again later after another viral infection or with reactivation of a chronic virus, but eventually it ceases to be a problem in the majority of children who experience it.
I've given you a lot of information regarding low platelets. I hope that I have not confused you. However, this information should help you to better understand what is going on with your ITP and how to have a dialogue with your doctor about the condition. Please let me know if you need anything further.
Peace and Blessings
03-04-2009, 06:13 PM
Thank you for all the information...right now I'm in a stage of the "unknown" with the ITP...i'm trying to prevent the removal of my spleen because I feel that if it IS my immune system depleting my platelets then i feel that it will not cure the problem..but i'm not a dr either. I'm trying to do as the dr says ..they seem to get frustrated with me when i try to take charge of any kind..i ask for cat scan and possibly an mri before they do surgery and they said insurance wouldn't cover it! But yet they are covering chemo?? so anyways...i will keep in touch and thanks so much for your replies!!
Hugz and prayers
03-05-2009, 11:50 AM
This was actually one of the main problems I had with my Lupus. My doctors used to just kind of scratch their heads and send me to others who all would say the same thing "I've never seen this before". I was a medical marvel, lol. They were just treating me with weekly iron injections, iron supplements and high steriods to try to get my Lupus under control so it would stop attacking my platelets. It's been awhile for me and I don't really remember what all they gave me, but I wasn't on chemo and I still have my spleen. I just remember one doctor looking at my platelet counts and asking me how I was still alive, much less standing. I would get another opinion before I had my spleen removed.
03-07-2009, 02:22 PM
Hi Kim, Thanks for your info...do you still have a platelet problem? They pretty much say i am a rare case too cause they are just going down the line of what to do "next". I went in for my last Rituxan treatment yesterday but it's not over as far as treatment...she went ahead and gave me the vaccinations needed prior to the spleenectomy cause that is what is next or i can choose to have IVIG treatments which is an infusion given like chemo..she looks at me with this look like "its not good for you" when i see her..i just came out and ask her yesterday is this life threatening and i do 'have" to do this right? she said yes because i could start bleeding internally or by chance if i was in an accident or any injury i could bleed to death before someone could get to me..scary stuff! Im calling my ins co on monday to see if they will cover a second opinion..i'm just so scared of surgery because of the bleeding issue as well..i mean come on...thats the problem and you guys are going to cut on me?! but she said she would get them up with high dose of steroids prior to surgery and i would have to be in the hospital for a few days for close monitoring...i get so depressed sometimes..yesterday i was real bad cause of my appointment and today i'm feeling better. She said last resort if removing my spleen doesn't work is heavy chemo where i will lose my hair any everything! I"m like OMG! I can't believe all of this is happening! Anywho..sorry to bore you guys to death...would like to talk to you some more..seems not many have this same problem so i guess i am a little rare!
hugz and prayers
03-07-2009, 11:43 PM
My name is Deb and I was dignoised in June 2008 with lupus. The only reason I went to the doctor is that I had some red and white spots and unexplained brusing. They did labs on a Thursday night and I was called first thing the next morning to tell me my platelets were down to 5,000 by the time I made to the Methodist Hospital in Rochester they were down to 4,000. They put me on high doses of IV steriods and 2 rounds of IVIG. Which this did bring my platelets up BUT only for a few days (it is suppose last at least 21 days). So a week and half later they did it again. Again, it only stayed up for a few days and then they were right back down. Then is when they started talking about taking out my spleen and gave me the shots. During this whole time I have been on 110 mg of predisone. Then two weeks after the last IVIG treatment they placed me back into the hospital and did a round of IVIG and a platelet transfusion. This is finally when they started staying up. They finally started to have consistent levels starting about August. Knock on wood they have not been down since. For medication I am currently taking plaquenil. cellcept, predisone, calcium, vitamins, ambien, vitronC, antibotic.
I hope everything turns out very well for you! If you need anything please let me know. It is what I had to deal with from June to September. My doctor now is trying to tamper me off the predisone but he is sorta nervous that my platelets might start to drop.
Take Care, Deb
03-08-2009, 10:59 AM
Hi Deb...thanks for your reply...so did you have your spleen removed? or did they do the platelet transfusion and the ivig and got them up before they had to remove your spleen? I'm just scared that removing my spleen is not going to help and then i will be more susceptible to infections and illness without my spleen and my immune system is already jacked up from the Lupus. I have read from another forum that is specifically for blood disorders that sometimes the spleenectomy helps and sometimes it doesn't just as with anything else everyone is different so who knows if it will help and "cure" me or not. I guess it would be too easy for us if they could just say yes this will help and we know it will huh? And I understand that they can't promise me anything. Deb do you have an email addy where we could email each other?..I don't want to bug you to death but I would like to know more and it helps to know someone else with the same issue. Thanks so much!
Hugz and prayers
03-12-2009, 06:26 PM
I am a newbie to the forum as well. I also have itp and auto immune hemolytic anemia. I was treated with rituxan for itp as predisone did nothing for that disorder. I had no problems with infusions and my platelets rose over a 6 month period and it's been 2 yrs this month with no treatment. Please don't let them take your spleen. My hemo wanted to take mine also and almost had me talked into it as he wasn't keen on long term effects on the body as the drug is relatively new.
I refused the removal and went for the rituxan with no regrets. My hemo says he thinks I have lupus as i have alot of criteria but negative ANA. Do you have antiphospholipid antibodies? It's frustrating to feel lousy and the labs don't reflect how your body is "really feeling". Mine gives me the impression that he thinks i'm a hypochondriac.
Keep us posted.
03-12-2009, 06:41 PM
I think I need to say this. I know it's your body but I reread your post and there are many more treatments to be tried before removing the spleen. Do not agree to chemo treatments unless all other treatments fail. That is old school protocol, a new TPO have just been approved called N Plate. The old chemo treatments have been tried and not with alot of success and with really bad side effects. No infusion treatments are benign and all come with risks. They use imuran, cellcept and of course these meds have risks also.
My advice give the Rituxan time to work. I did not see an immediate result. It took me 6 mnths to a year to see a slow safe increase that has remained stable. It's your body and your decision to make. Don't let any Dr. rush you into anything unless you have a severe bleed or platelets fall below 20k. Every one with ITP is different and should be treated by symptoms not just counts. Hope this helps.
03-12-2009, 09:40 PM
I have APS aka Hughes Syndrome (sticky blood that is too thick) although I don't have low platlets. I would definately get a 2nd opinion before having the spleen removed. That's pretty scarry.
I would start checking with doctors in the area that could possibly refer you out to a larger city with specialists.
I wish you the best and keep us updated.
03-15-2009, 11:13 AM
Sorry it took me a few days to get back on this forum..i found another forum especially for platelet disorders and been posting there as well..thanks for the advice Faith and mayflower! I went in on friday for my weekly hemo visit and blood draw and my counts fell again to 24,000...my hemo dr told me that she doesn't believe i am going to respond to the rituxan or I would have by now but yet she wanted me to go for another treatment on friday and I couldn't because my daughter was out of school and i thought last week was my final treatment...and i cant drive after treatment and i drove myself to this appt...anyways..i then ask her "well, if you don't think i am responding or going to respond to treatment why are you wanting me to have more treatments then??" she responds and said good question! but maybe you are one of those people that it will take a while ....keep in mind the treatments are $5000 a pop and i have good ins!!.....so i scheduled for tues...then said she would get my my rhuemy and discuss what he thought they should do next ...she did mention Nplate and i had read about this treatment as well, it's new and she said could try it but she is not comfortable with possible long term side effects since it is so new...i definitely don't want the heavy chemo treatment and go thru losing my hair and those very toxic meds in my system and plus putting my daughter thru more of a scare..she is already scared to death...i think i will try the Ivig treatment and give the rituxan time to work...i'm not scared of surgery i just want to see if other treatments might work.
03-15-2009, 04:31 PM
First of all Christie, I am so sorry that you are going through this much... I have never been treated with IVIG but I heard alot of people have had a good increased immediatley after, its just that is usually a short term increase. It may give you time for the Rituxan to work. Mine didn't immediatley increase. They slowly increased over 6 months and keeped climbing slowly for 1 year.
Best of luck to you in whatever you choose. Please let us know how you are doing.