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.
Most people with lupus who have mild to moderate thrombocytopenia do not need treatment. When necessary, prednisone and intravenous gammaglobulin (called IV Ig) are generally used. Other drugs, such as azathioprine or rituximab, also can help. Sometimes, due to antibodies, thrombocytopenia can sometimes be relieved by splenectomy. NSAIDs are only prescribed if your doctor feels that they can be used safely with thrombocytopenia. Thrombocytopenia, if stable, and if the platelet count remains above 50,000 3 103 per mm3 (50 3 109 per L), should not be associated with bleeding unless you have an additional coagulation defect. Severe, life-threatening thrombocytopenia is treated with high-dose intravenous methylprednisolone but may also require intravenous immunoglobulin therapy. The long-term management of patients with severe thrombocytopenia may also include danazol (Danocrine), vincristine (Oncovin), immunosuppressive drugs and, in rare instances, splenectomy. I will continue to research your question.
Hey, I appreciate your reply and your concern with my issue.
I have been very confused throughout all this...I have done so much research in books, online, by talking with my rheumatologist. One book I read gave me the impression that my situation is not serious/life threatening and that no treatment is necessary, and any treatment if any should be mild. So why is my doctor putting me on all these medications that have high risks associated with them? Is there something she's not telling me? Does she think that this is going to get worse, so she's trying to prevent it? I am not sure how low my platelets would drop, because every time they have gotten low, we've caught it by blood tests, and then upped my meds. But trust me, there's times I wish I could just stop the meds and see if I even need treatment. I just don't want things to get any worse, or have other lupus symptoms arise by doing so. But if lower platelets is all I have to worry about, plus the typical fatigue, then I'd rather do that than be on cellcept, which increases your risk for cancers, etc. or any other scary drugs.
I forgot to mention that I was on azathioprine (imuran) for a little while, and at first, it worked--my platelets started to increase steadily. But, one of the side effects of azathioprine is it can lower your blood counts, including platelets! Sure enough, after it did its job for awhile, my platelets started to drop, because of the azathioprine. Now why would my doctor put me on this drug when she knew that it can cause platelets to drop?
Also, I know my rhem. has had concerns about lupus someday affecting my kidneys as well, because I had a slightly elevated amount of protein in my urine. Nothing serious, and it's been normal ever since.
At the end of May, I have two appointments on the same day--with a kidney specialist, and a hematologist. I'm hoping the hematologist may know something or suspect something. I probably should have seen a hematologist by now, considering my platelets are affected.
ITP or immune thrombocytopenic purpura is an autoimmune disease. In autoimmune diseases the body mounts an immune attack toward one or more seemingly normal organ systems. In ITP, platelets are the target. They are marked as foreign and eliminated in the spleen or sometimes, the liver. Because this process removes platelets from circulation, people with ITP have a low platelet count or thrombocytopenia.
Normal platelet counts range from 150,000 to 400,000 platelets per microliter. People with severe cases of ITP have platelet counts under 10,000. About 30,000 platelets per microliter of blood is considered a ‘safe count,’ one that is high enough to protect against bleeding in the brain in most cases.
The specific cause of ITP is unknown. Some cases appear after a viral or bacterial infection, after immunizations, after exposure to a toxin, or in association with another illness such as lupus or HIV. It is important to recall what was happening in your life before you began having symptoms of low platelets. This information may be useful to your physician in diagnosing and treating your low platelet count.
ITP is not usually considered a disease that can be passed from one generation to another. However, there are some rare cases where several family members are diagnosed with ITP. Most researchers consider these cases a misdiagnosis and not ITP.
The symptoms vary greatly from person to person. Most people with ITP experience spontaneous bruising. Some find they have petechiae (pe-TEEK-ee-ay), tiny red dots on the skin caused by broken blood vessels or leaks in a capillary wall. If your platelet count is very low you may have other bleeding symptoms including blood blisters on the inside of your cheeks or blood in your urine or stool. In general, the more bleeding symptoms you have, the lower your platelet count.
TP is a diagnosis of elimination. Your doctor will do tests that rule out other causes of low platelets. If no other cause is found, then the diagnosis is often ITP. There is no accurate, definitive test for ITP. Commonly doctors will test for the presence of anti-platelet antibodies, perform tests for other diseases such as lupus and do a bone marrow aspiration.
Platelets are produced in your bone marrow. This test is done to confirm that the platelet production process is working properly. The test is typically done at the hip bone. First a shot of novocaine or other numbing agent is given. Then a needle is pushed through the bone and into the marrow. Some of the marrow is then suctioned out and examined. While some people experience little or no pain, others find this test very painful.
While there is no cure for ITP, many patients find their platelet count improves with one or more of the treatments. Some patients report that changing their diet or life-style helps them feel better and improves their platelet counts. ITP can be acute and improve in less than six months. ITP can also be chronic and linger for many years. The disease can go into remission for a long time, perhaps for the remainder of a person’s life. ITP can also recur. There is currently no way to predict the course of the disease.
There are many treatments for ITP. They all have different risks and benefits and some are very toxic. It is important to understand both the success rate and potential side effects before beginning the treatments. Hematologists may use these treatments in combination to increase their success rate. Additional treatments are in clinical trials.
The treatments include (in alphabetical order) anti-D antibody (WinRho SDF®), azathioprine (Imuran®), corticosteroids (prednisone), cyclophosphomide (Cytoxan®), cyclosporine (Sandimmune®), danazol (Danocrine), gamma globulin (IVIg, IgG), protein A column (Prosorba®), rituximab (Rituxan®), splenectomy, and vinca alkaloids (vincristine).
ITP treatments vary with the severity of the disease, age of the patient, the experience of the hematologist and other factors. Both the American Society of Hematology and the British Society of Haematology have published guidelines for treating ITP. These are very helpful in understanding the current thinking about ITP. However, there is no consensus on a treatment protocol. ITP treatment is evolving as additional treatments become available and researchers learn more about the disease.
An initial course of prednisone is often given to newly diagnosed patients. Prednisone suppresses your immune system. It is hoped that suppressing your immune system will cause your platelet count to increase and remain elevated after you are no longer taking prednisone.
While prednisone helps many people with ITP, it has side effects that many patients find difficult to deal with. Most people experience bloating, weight gain, loss of muscle tone, joint aches, gastritis, and irritability. Long term or high doses can contribute to osteoporosis, high blood pressure, diabetes, muscle wasting (including heart muscle) and many other conditions. Your doctor may prescribe medications to counteract some of the anticipated side effects.
Because most people find their platelet count drops as they discontinue prednisone and the side effects cause problems, some hematologists recommend other initial treatments or only prescribe prednisone for a short time.
One of the treatments your hematologist may recommend is a splenectomy, removing your spleen. In ITP, your antibody coated platelets are destroyed in your spleen or sometimes, your liver. By removing the spleen, your platelets may stay in circulation and raise your platelet count. However, if your platelets are being destroyed in your liver, this operation will not be helpful. Splenectomies have a long-term success rate of about 60%. In general, the initial response rate is high and decreases with time.
IVIg is a solution containing a particular type of antibody extracted and purified from the blood of thousands of donors. The rapid rise in count that usually follows an infusion is often temporary. When the platelet count declines, additional IVIg treatments may be given or a different type of treatment recommended.
Anti-D is also a blood product that usually causes a rapid but often temporary rise in platelet count. It is easier to administer than IVIg. However, it is not recommended for people who are Rh negative, have had a splenectomy, or have antibodies to their red blood cells. Like IVIg, anti-D may be repeated to help sustain a safe count. The most frequently reported side effects for IVIg and anti-D are those usually associated with infusions such as headache, chills, fever, and body aches. There have been reports of remission with repeated doses of anti-D or IVIg.
Other treatments include chemotherapy drugs or other agents used in cancer treatment, drugs used to suppress reactions to organ transplants, or drugs used to alter your hormonal balance.
Some patients learn as much as they can about ITP and the treatments and decide to live with a low, but safe count, continuing to closely monitor their situation with their hematologist. Others decide to combine the treatments recommended by their hematologist with alternative approaches.
Some people report success with herbs, supplements, energy work, diet changes, and other alternative treatments. There are many reported cases of their success but few formal studies. Many of the alternative treatments attempt to correct the underlying problem rather than treat the symptoms of the disease. They tend to take a longer time to be effective and have fewer unwanted side effects. Like the more traditional treatments, the alternative treatments do not have the same results in all who try them.
Many people with ITP find they have a problem with fatigue. However, the cause of this fatigue is not well understood. In addition to general fatigue that may be associated with being ill, the treatments for ITP can contribute to fatigue by disrupting the sleep cycle and placing other types of stress on the body.
Many people with ITP report being depressed. Again there are several possible explanations. One factor might be serotonin, a neurotransmitter that is carried by platelets and delivered to the brain and other parts of the body. Since serotonin helps regulate moods a disruption in serotonin processing could contribute to depression. Another factor is simply that you are dealing with a difficult and potentially chronic illness. This can lead to feelings of isolation, fear, and anger that your body has “turned against you”. A third factor is the treatments. Many of them list depression as a potential side effect.
Some patients report these symptoms along with their ITP. Some patients report that eating a healthier diet, exercising, meditating, avoiding toxins, etc. have a positive effect on their platelet count and how they feel. It is also important to avoid those substances, such as alcohol, that can harm the bone marrow or substances such as aspirin that interfere with platelet function. This is an individual decision based on your platelet count, your symptoms, your current life-style and the amount of risk with which you are comfortable. Your doctor can provide guidelines for you. Some people with ITP use the opportunity to enjoy new activities that do not place them at risk of bleeding.
You should learn as much as you can about the disease. Do your homework, learn the benefits and the side effects of the recommended medications, decide how you want to approach the disease and your life, now that it has changed. Keep a copy of every lab report and copies of all blood work. Maintain a log of the medications used, dosages, your platelet count, and how they made you feel. Pay attention to your life-style and see if there is any correlation between your platelet count and the food you eat, the places you visit, noxious chemicals in your environment, etc. Often you are the person paying the most attention to these things. Truly, it is up to you to learn and heal yourself.
The Platelet Disorder Support Association (PDSA) has more information on all of the topics in this pamphlet. There are hundreds of pages of information on the PDSA web site, www.pdsa.org. The organization publishes a monthly e-news update, a quarterly newsletter and makes available other publications and articles. Each year, PDSA holds an annual conference and regional meetings. PDSA continues to expand their programs to offer more services and reach more people.
I hope this information has been helpful. Let me know if you need more.
Peace and Blessings
Thanks for all the information! It's hard to know whether what I have is ITP or more lupus related. It's also hard to know what course of action I should take, besides the obvious (such as a healthier lifestyle). I thought the paragraph on depression was helpful, as I didn't know that platelets carry serotonin to the brain. And I didn't realize there was a Platelet Disorder Support Association. I'll have to look into them. There's a lot I need to take into consideration with taking all these medications. Should I even be worried about taking these medications, if I'm not even sure my platelets would ever drop too low?
I am new to the site and came across your question from May'06 and feel compelled to tell you my story due to the similarities. I'm not sure if it will help you but here it is. I have the exact same lupus symptoms as you with my lowest platelet count as 32,000. I am also extremely sun sensitivity. I could not tolerate Plaquenel and refused to take Prednisone. For a while I was only on Vioxx (before the recall). As I got sicker, my rheumatologist said that he is willing to give me Arava experimently (the medication is used for RA). It turned out to be the miracle drug for me. Within a month my platelets were in the normal range and I am still on the med. However I have also went on a campaign to discover and eliminate all sources of triggers to my Lupus. They turn out to be sunlight, hair dye, MSG, all soy products, mushroom, seafood. I think there are more; I am currently trying to figure out if I am bothered by wheat. Each of these triggers bring on different symptoms and the one that plummets my platelets is MSG.
I am not totally Lupus free but good enough to work and travel. On bad days I still need a NSAID in addition to the Arava.
Hi! My Thrombocytopenia (ITP) is what triggered my diagnosis as well with a hospital stay when I went in for side pain that turned out to be an engorged spleen and a platelet count of 18K. I was on prednisone and plaquenil for about six months. They tapered off the prednisone and I have not had any platelet problems since. (last tests were 264K) I was treated for the ITP by a hematologist though, not my rheumatologist. They initially tried me on a much stronger steroid/four day dose, which actually kicked me up into the 60Ks pretty quickly, but they didn't stay that way. I've been off the prednisone for about six months now and all is well.
I did want to write about NSAIDS, however. My Hematologist, Rheumatologist and GP all said no NSAIDS. NONE. They ALL told me it could be extremely dangerous for me to take and NSAID, because of my ITP. I haven't had an aspirin, ibuprofen, naproxen or any other NSAID in over a year. I'm just wondering if this is what has kept my platelet count up? Just a thought.