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Frequently Asked Questions 9 years 1 month ago #118

  • Sandi
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Q: I’ve just been diagnosed with ITP. What can I expect when I visit the doctor?

A: Although not all doctors do exactly the same things, usually the first step is to prescribe Prednisone if your platelet count is at treatment level. Prednisone is a type of glucocorticoid steroid used to treat many autoimmune diseases and other conditions.

A global committee of 22 ITP clinicians and researchers published an article in the journal Blood summarizing the best information on treating ITP:
bloodjournal.hematologylibrary.org/cgi/content/full/115/2/168

Q: When should I begin treatment?

A: The answer to this question depends on several factors; age, lifestyle, symptoms and platelet count. A platelet count above 50,000 is considered to be a safe count, and treatment will not usually be recommended unless symptoms are present. Careful monitoring is generally all that is necessary with a count above 50,000. Below 50,000, the decision to treat depends on the comfort level of both the doctor and the patient.


Q: Why start with Prednisone?

A: Prednisone suppresses your immune system. It is hoped that by suppressing your immune system and then gradually weaning you off the Prednisone your immune system will reset itself and in the process will decide that your platelets aren’t the enemy anymore. This is like re-booting your computer.

Q: What can I expect from Prednisone?

A: While Prednisone helps many people with ITP, it has some significant side-effects that some patients find difficult to deal with. Most people experience bloating, weight gain, loss of muscle and tone, joint aches and irritability. Long term or high doses can contribute to osteoporosis, high blood pressure, diabetes, muscle wasting (including heart muscle) and many other conditions. Be sure to read the Physicians Desk Reference or other helpful web sites for more information.

Prednisone can promote personality changes. The syndrome is called 'steroid psychosis'. The changes can range from irritability to more severe mood swings. It is important to be aware of the emotional side effects while taking Prednisone because it’s probably not a good time to make important decisions. Unfortunately, if Prednisone doesn’t bring a sustained rise in your platelet counts, you will be asked to make some very important decisions regarding the next steps of your treatment. If possible, it is wise to begin your research of all available treatments as soon as you are diagnosed.

A good book on the subject is 'Coping with Prednisone' by Eugenia Zuckerman and Julie Ingelfinger, MD. Many have found this book to be very helpful.

Q: What other treatments are available after Prednisone?

A: Failing Prednisone, many doctors will recommend splenectomy, removing your spleen. There are other treatments to try, but many doctors will wait and see if the splenectomy works and will only suggest other treatments if it does not.

One of the ITP treatments, win-rho (anti-D) is not effective for people who have had splenectomies. Given this and the less than assured response rate for splenectomies, some noted ITP physicians now recommend other ITP treatments before removing your spleen.

Other treatments include (in no particular order): Anti-D antibody (WinRho), Gamma Globulin (IVIg, IgG), Rituxan (Rituximab), Danazol (Danocrine), Vinca Alkaloids (Vincristine), Protein A Column (Prosorba A), Azathioprine (Imuran), Cyclophosphomide (Cytoxan), and Cyclosporine (Sandimmune). There are also seberal new treatments that boost platelet production called TPO's, NPlate (Romiplostim) and Promacta (Eltrombopag). Of these treatments, some can cause partial or complete remission and some are maintenance therapies. You can find treatment information at
www.pdsa.org/treatments/conventional.html
Some patients have success with alternative treatments.
www.pdsa.org/treatments/complementary.html

Q: Should I have a splenectomy?

A: There is no easy answer to this one. The long term splenectomy response rate is about 60%. In general, the initial response rate is high and decreases with time. Some people with splenectomies have had their ITP reappear after a few weeks, months or years. The statistics vary and there are few good long-term studies on which to base your decision.

There are no good predictive tests or indicators that will tell you whether your spenectomy will raise your counts or how long that elevation will last. Although doctors in the USA don’t typically recommend this test, nor do many of them consider it reliable, in Europe it is not uncommon to have an Iridium Screening Test. This test will irradiate your platelets and then track them to their site of destruction.

In some people, most of their platelets are destroyed in the spleen and splenectomy may be a reasonable option for them. However in others more platelets are destroyed in the liver. If yours are destroyed primarily in your liver, removing your spleen is less likely to result in remission. Note that after your spleen is removed and your platelets are elevated your liver can take over the removal function and your platelet count can drop once more.

Recent research to consider regarding ITP and splenectomy:

bloodjournal.hematologylibrary.org/cgi/content/full/114/14/2861

Q: What is the reasoning behind splenectomy?

A: The spleen is a portion of your immune system that acts as a filter, among other things. When your blood flows through it, the spleen removes particles, including platelets, that have antibodies attached to them. In theory the antibody encrusted platelets would still function if they were not filtered out by the spleen. Therefore, by removing the spleen, the antibody coated platelets will continue to circulate and more platelets will be available.

The spleen is also a site for manufacturing antibodies, potentially including anti-platelet antibodies. If this is the case for you, removing the spleen could raise your count by reducing the number of anti-platelet antibodies.

Q: What purpose does the spleen serve?

A: Your spleen is a complex organ that serves many purposes. It is a part of your lymph system. In fact, it can be thought of as one big, fist-sized lymph node. Removing your spleen removes some of your body's antibody production capabilities including some of the antibodies required to respond to pneumonia and other types of infections. To compensate for this most physicians recommend a series of vaccinations before your splenectomy to protect you against additional infection.

Children are more susceptible to the immune consequences of a splenectomy. Often, they are given a long-term course of antibiotics to assist their immune system.

Q: Am I eligible to go on disability?

A: This varies from one case to the next. Some people with ITP have been successful in getting assistance while others have found it a challenge. The severity of this disease and the impact on life varies greatly. Your success depends on how your case is presented and on the specific difficulties you are experiencing as a result of the ITP. Contact the Social Security Administration for more information.

www.disability-benefits-help.org/disabling-conditions/chronic-thrombocytopenia-and-social-security-disability

Q: Is fatigue a normal part of the disease?

A: Most people with ITP find that they have a problem with fatigue. There are a number of reasons for this. One factor is serotonin. Serotonin is a brain chemical that helps us relax, have stable moods and restful sleep. Most of the serotonin in our body is carried by platelets and delivered to the brain and other parts of our body that use it. A decrease in platelets means a disruption to the body’s serotonin transport system and a disruption in our restful sleep. Another factor is that the body is struggling with the disease. This can cause fatigue.

Q: Is depression a normal part of the disease?

A: Possibly. Again there are several factors. One factor is serotonin, as discussed above. Since serotonin helps regulate moods a disruption in serotonin processing can contribute to depression. Another factor is simply that you are dealing with a difficult and potentially chronic illness. That 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 have depression listed as a potential side-effect.

Q: Are aches and pains a normal part of the disease?

A: This varies from patient to patient. Some people have aches and pains, others do not. This can also be a side effect of some of the treatments.

Q: Do any of the alternative treatments work?

A: Some people report success with these treatments. There is much case evidence 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 those who try them.

Q: What causes ITP?

A: There are no definitive answers for this question. Some doctors speculate that it is a combination of a hereditary predisposition and an environmental trigger. Some drugs, vaccinations, viruses, bacteria, and pollutants are suspected to either cause or activate the disease. See www.pdsa.org/about-itp/causes.html

Q: What are petechiae and what do they mean?

A: Petechiae are tiny red dots on the skin caused by broken blood vessels or leaks in a capillary wall. They appear on the skin alone or in patches like a rash. They are not dangerous, but usually indicate a low platelet count.

Q: Can I still do the things I love?

A: You have to learn to judge. Your activities should be based on your platelet count and your symptoms. Your doctor can provide general guidelines. Some people with ITP use the opportunity to learn new sports requiring less contact or enjoy different hobbies. Most people are able to maintain a sense of normalcy and balance in their lives one they adjust to the diagnosis.

Q: What tests should I expect?

A: ITP 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, do blood tests for other diseases such as Lupus and do a bone marrow biopsy. Please note that a bone marrow biopsy is not necessary to diagnose ITP.

Q: My medical reports mention large platelets, what does this mean?

A: Platelets are very large when they are first made. The presence of many large platelets usually means that your bone marrow is producing platelets in large numbers and the older ones have been killed off by the antibodies leaving only the younger ones.

Q: How is the platelet count determined?

A: A sample of blood is drawn from a vein into a tube that contains an anticoagulant. The platelet count will be run on an automated blood cell machine that determines most of the results seen on the CBC (complete blood count). If the platelet count is very low the test may be done manually.

Q: Can you inherit ITP?

A: ITP is not usually considered a communicable disease. However, there are some rare cases where several family members are diagnosed with ITP. Researchers are currently looking at the familial patterns to determine if there was a misdiagnosis or a genetic component of certain cases of ITP. You can read about inherited platelet disorders here: www.pdsa.org/about-itp/and-families.html

Q: What will happen if I have ITP and want to have a baby?

A: Many women with ITP deliver fine, healthy babies, although this is not without risk. Your decision and your treatment depend on your count an your symptoms. Go to www.pdsa.org/about-itp/in-pregnancy.html for more information.

Q: Can you give it to your children?

A: If you are a woman who has ITP and become pregnant, some of the anti-platelet antibodies may cross the placenta and your baby may develop low counts. If this happens, the baby is treated to prevent a problem. When the baby’s own immune system matures, the platelet problem usually disappears within a few weeks after birth.

Q: Why do some people say 'idiopathic" and some say "immune" for the I in ITP?

A: "Idiopathic" means there is no known origin. "Immune" means that the disorder is characterized as an autoimmune disease. The name was changed when it was confirmed that ITP was a type of autoimmune disorder.

Q: Should I see a hematologist? Or can my internist handle my treatment?

A: Most patients see hematologists. Since they specialize in blood disorders, they are generally more knowledgeable about the disorder and the latest treatments. If you need to be hospitalized for any reason, you will be assigned a hematologist if you don't already have one. If your ITP doesn’t respond to the usual treatments, your platelets continue to be very low, or you have other complicating diseases you may want to consider seeing a hematologist that specializes in ITP. Go to www.pdsa.org/treatments/treatment-resources.html for more information.
Although most hematologists are familiar with the treatments for ITP, their philosophies differ concerning the timing and dosages. If you are uncomfortable with your hematologist’s suggestions, you should get a second opinion.

Q: Can an ITP patient donate blood?

A: No, the American Red Cross will not accept a blood donation from a person with ITP.

Q: What can family and friends do to help?

A: The patient and his loved ones are usually quite shocked to get this diagnosis, usually because they have no idea what it is. First reactions often include fear, confusion, and stress. It's difficult to assimilate all these new terms and understand the options in a crisis situation. Try to be extra patient with the ITPer. They've got so much on their minds, learning as fast as possible and dealing with the side effects of some very potent drugs. Try to understand that when the counts are low, the ITPer feels pretty awful, tired, and often sad. They may look just fine, but their bodies are waging an incredible war on the inside and this is exhausting work, even if you are not conscious of it.

Q: What else should I as the patient do or know?

A: You should know everything you can. Do your research, learn 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 lifestyle and see if there is any correlation between your platelet count and the food you eat, the places you visit, the chemicals used to clean, etc. Often you are the person paying the most attention to these things. Truly, it is up to you to learn and heal yourself in many ways. It's important to be your own advocate and speak up for yourself if you feel something isn't right.

The PDSA newsletter is an important source of ITP information. It is a quarterly publication sent to our members. Go to www.pdsa.org/products-a-publications/newsletters.html?layout=item for more information. You can join PDSA at www.pdsa.org/contribute/individual-memberships.html

If you have other questions or answers to suggest send them to pdsa@pdsa.org


The following user(s) said Thank You: gkilianek, cloyd915, EvansMom, Lady Elly, Destiny, alex2isaiah, Anikat, Larry, reboot, Mikka, Daveeda, Fervenz, jen, nknaithani, Charlottelaughs, Antsonparade

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Frequently Asked Questions 6 years 7 months ago #26973

  • Destiny
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Thank YOU this was very helpfull

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Frequently Asked Questions 6 years 6 months ago #27189

  • alex2isaiah
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Thank you

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Frequently Asked Questions 6 years 6 months ago #27195

  • april
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Very nice!

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Frequently Asked Questions 5 years 5 months ago #37258

  • dolores
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This site is very helpful! Thank you

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Frequently Asked Questions 4 years 1 month ago #46491

  • Daveeda
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That was very helpful. I still feel like I have no idea about ITP. I just know there is not cure, if my levels are low it will be hard to stop the bleeding and that steroids work wonders and fast but I can't stand to take medication. I just need to learn more about diagnosis still can't believe I am labeled with a diagnosis.

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Frequently Asked Questions 4 years 1 month ago #46493

  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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Daveeda:

No one likes to take medication. You're not alone there. Prednisone is a horrible way to start off; there are too many side effects to count. The good news is that meds for ITP are usually temporary. Very few people have to take meds long-term. There are many other illnesses that require lifetime medications that can be even worse than these meds. Just giving you a different perspective.

ITP is a diagnosis. That's true. But it has an extremely high survival rate and although fatigue can be a factor, it is not a debilitating illness. There are things to be relieved about here. For some people, ITP disappears within a year and they never see it again. You could be one of them.
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Frequently Asked Questions 4 years 1 month ago #46497

  • Daveeda
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I never thought about it like that and that gives me hope. I always wanted to move my family from Baltimore, Md but I keep using being close to my doctors as an excuse. I don't want this diagnosis to take over my life so I decided to push forward. Although I don't have a set destination in mind I have a realtor coming Friday to weigh out my options. I want warm weather, great schools and a safer and better environment for my babies. So if anyone have any suggestions where to relocate I am open to suggestions.

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Frequently Asked Questions 4 years 1 month ago #46499

  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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Hmmm....the PDSA home office was in Baltimore until just recently. You were very close!

Don't change your life plans because of ITP. There are doctors in every city in the US.

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Frequently Asked Questions 4 years 1 month ago #46500

  • EmilyK
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Sandi
Your generosity to all of us is amazing. Thank you for caring and always well researched responses. I am so thankful for your input.
Diagnosed Jan 2015 at age 50 with 13,000.

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Frequently Asked Questions 4 years 1 month ago #46502

  • Sandi
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Emily:

I'm glad you feel that way. I honestly don't feel like I'm all that nice; I tend to tell it like it is and there isn't much sugar coating. Past occupational hazard. ;)

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Frequently Asked Questions 3 years 1 month ago #52876

  • Ayhen26
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thanks for all of this..

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Frequently Asked Questions 3 years 1 month ago #52877

  • Ayhen26
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I'm just really hoping that there's a group also here in the Philippines to whom I can share all of this things also. . . all about my illness, and how i can really handle this.

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Frequently Asked Questions 3 years 1 month ago #52878

  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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I'm not sure about a group in the Philippines, but we're here.

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Frequently Asked Questions 3 years 1 month ago #52885

  • Ayhen26
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Thanks a lot Ms. Sandi :)

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Frequently Asked Questions 3 years 1 month ago #53054

  • gulzaibch@gmail.com
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Hello, My mother has recently been diagnosed with ITP and i am looking for some experts/doctors for a second opinion. The biggest question that pops up in my mind "is it permanently curable?" if once occurred can there be greater risks of it happening again??

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Frequently Asked Questions 3 years 1 month ago #53055

  • Sandi
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ITP isn't curable, but it is treatable. There are several treatment options and it's trial and error to find one that works. When counts are maintained without treatment, ITP is said to be 'in remission'. That can end at any time, so yes, ITP can always come back.

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Frequently Asked Questions 3 years 1 month ago #53068

  • gulzaibch@gmail.com
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Thanks Sandi, I am struggling hard to get in touch with an ITP doctor to discuss my mum's reports and have an advice. My mom has a long history of diabetes, hypertension and other illness in between. Can you help get in touch with a doctor?

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Frequently Asked Questions 3 years 1 month ago #53070

  • Sandi
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If you ask in the General Section and tell us your area, someone here will probably have a recommendation for you.

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Frequently Asked Questions 3 years 1 month ago #53073

  • Melinda
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so yes, ITP can always come back.

My understanding is we always have the antibodies in our system - so it doesn't come back it's always there, so platelets can drop again.

You have Pak in the country section of your profile - is that Pakistan?

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Frequently Asked Questions 3 years 1 month ago #53092

  • gulzaibch@gmail.com
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Yes Melinda, I am based in Pakistan. I am looking for a recommendation for a second opinion. Because my mother has a long history of diabetes, hypertension, sarcoidosis etc. I am looking for an expert with who i can discuss her case in details.

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Frequently Asked Questions 3 years 1 month ago #53093

  • Melinda
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At the top of the page is a tab: Resources
One of the headings under that is: Find An ITP Doctor

If you scroll down to the bottom of the Find An ITP Doctor page there is:

•PDSA maintains a list of specialists that may be able to help:
Contact Us


"Contact Us" is a box to click on - maybe they have a doctor you can contact. And if they don't have one in Pakistan possibly one of the doctors on their list may know of one there.

Good luck in your search - and I wish your mother well!

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Frequently Asked Questions 3 years 3 weeks ago #53136

  • gulzaibch@gmail.com
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Thank you Melinda. I am trying there. I am looking for a remote connection maybe on skype. We have doctors in Pakistan on ITP but the challenge i am facing is communication. They do not communicate with patients or care givers as much as they should. A silent doctor is of no use.

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Frequently Asked Questions 3 years 3 weeks ago #53144

  • Melinda
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I understand - and being such a different culture I can see where communication would be the challenge. I hope those at the other end of "Contact Us" can help you locate a doctor who can help.

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Frequently Asked Questions 2 years 6 months ago #55506

  • Gaynellw83
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Umm I'm new to this group. My name is gaynell everyone calls me Nelly but I had my spleen taken out when I was 4 something about my platelets and I would bruise really easy my mom said people thought she was beating me because of all the bruising I almost got taken away I also had nose bleeds just about every night as a child then would take so long to stop bleeding. I tried to ask my mom why I had my spleen taken out all she could tell me is it Begin's with a t and is a very big word she could never say once she said it was It I'm pretty sure it was ITP but it was so bad I'm guessing the only thing the doctors could do is do emergency splenectomy. I'm 32 years old now and I know nothing about this I do know I get sick a lot sleepy all the time lost a couple good jobs due to being sick or having some kinda of bacterial infection. Please help me understand if what I had was ITP does it ever go away I have so many questions about this

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Frequently Asked Questions 2 years 6 months ago #55507

  • Rob16
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This certainly sounds like ITP, and back then splenectomy was pretty standard. ITP can return at any time after a splenectomy, so if you get any symptoms like heavy bruising, blood blisters in your mouth, lots of tiny red dots (called "petechiae"), nosebleeds or bleeding gums that won't stop, then you should get your platelets checked. Over 100k is considered normal. Above 30k treatment is not required except in anticipation of surgery or dental work, and many people go well below 20k without treating. It is a good idea for you and your doctor to work out a treatment plan ahead of time.

You should have a hematologist, or at least a regular physician, who is familiar with your history, so that if you develop symptoms you can get treatment without going to the emergency room. You should also receive vaccinations to certain illness that you are more susceptible to, and be given antibiotics to take at the first sign of illness:

www.medscape.com/viewarticle/705255
Pneumococcal, meningococcal, and Haemophilus influenzae (Hib) vaccinations are indicated for patients after splenectomy...The benefit of lifelong antibiotic prophylaxis for post-splenectomy patients is still under investigation. However, there is considerable peer-reviewed evidence suggesting that lifelong penicillin prophylaxis is indicated for these patients, with recommendations ranging from 250 mg to 500 mg daily. Although the jury on lifelong antibiotic therapy may still be out, there is a general consensus that all post-splenectomy patients be educated regarding the need to promptly treat any possible infection to preempt a more serious sepsis. Patients should also be advised to have a supply of antibiotics on hand when traveling in case an infection occurs.

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Frequently Asked Questions 2 years 1 month ago #57957

  • Viju1983
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Hi Everyone,

I had a question regarding ANA. My Titer was 1:80(+4) weak positive with Fine Speckled cytoplasmic pattern, as I was initially diagnosed for immune thrombocytopenia and had some complications during my prednisolone treatment I am not able to classify whether it's an sideeffect or symptom as I am having tingling sensation, jaw pain and also one of my knees is swollen from back and I feel some liquid running within my bones at times. So my friend asked to go for SLE profile. Is it relevant should I go for it. My Anti-ds DNA antibodies were Negative.

As fatigue is common no malar rash but have some small round pink spots and on my back which are on rise. My present platelet count is 9K.

Thanks

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Frequently Asked Questions 2 years 1 month ago #57960

  • Sandi
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Your ANA titer is low and would be considered borderline. That number is not concerning and is common for people with autoimmune disorders. Having a negative dsDNA would probably exclude a Lupus diagnosis right now. However, autoimmune disorders can take time to develop, sometimes years. How long were you on steroids and when did you stop? sometimes it is hard to know if you are having side effects or symptoms.

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