Dear Friends my Dad is 66 years old and is recently diagnosed with Acute I T P recently . He was initially admitted with Platelet count of 15000 after which he was thrice given platelet transfusion during this period his platelet count got reduced to 2000 only. He is administered with IV IG injection on 15 h of this month how ever his condition has not improved. Currently he is administered with Revolade 25mg and his platelet count is still 3000.Please help and guide how I can help my father.He is a vegetarian ,Non Alcoholic,
he is non diabetic and has no blood pressure problem.
Any thing and every thing which can help is welcome
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I am the same age as your father and I have ITP. My platelets have been as low as 10,000 but last test 90,000 which I am delighted with. In the number of years I have had ITP my platelets have been 10,000 (lowest) and 185,000 (highest) in other words very up and down. You say your father has been diagnosed with ITP. Has he had the bone marrow test? Usually the doctors start people on prednisolone and there is no mention of that in your post. Possibly the platelet transfusion was to try and get platelets up quickly as I was never offered transfusion as I was told the platelets wouldn't last long in my body (obviously as my immune system is killing them off!)
When I was first diagnosed I was mortified (I already have type 1 diabetes, under-active thyroid) and I thought OMG what next.
Obviously the doctors will try to get your father's platelets up to an acceptable level and when they are tell him not to worry too much (and you too). I was given terrible medication with terrible side effects. Now I take nothing at all and as I said above my platelets are 90,000.
I don't think there will be many on this site who can guide/help - we have all been there - where your father is right not.
I don't know where in the world you live??
I spoke to an amazing doctor in London named Drew Proven who is a specialist ITP doctor. His words - which I will always remember - "treat the patient, not the illness".
I will keep thinking of you and dad until you let us know how he is progressing.
Dear Maggie thanks for giving me hope yes he has been through Bone Marrow Biopsy and it says features are consistent with Megakaryocytic thrombocytopenia.
I am not familiar with most of those tablets - but that doesn't mean anything! The platelets can be destroyed in the liver as well as the spleen and there has been much on this site in the past about people having their spleens removed and YET STILL HAVE ITP. If the doctor is talking about a splenectomy - there is a test called Indium labelled platelet test - which will show where the platelets are being destroyed but this is not done at many hospitals.
From what I have read over the years a splenectomy is not a great success with most people and if done, your father will probably have to take antibiotics for the rest of his life. Think carefully.
In the U.K. I think they don't remove the spleen now. PLEASE ADVISE WHERE YOU ARE FROM.
I am thinking you may be from India - just because of the medications you mention. I looked back at the site and found the following info............
I finally found a sensible doctor who agrees with whatever you and others are saying. his name is Dr.sunil J parekh and he practises in Mumbai... if anyone has ITP in India they should consult him as he is a haemotologist who has expertise in ITP cases. he agreed that the ITP pateint above the age of 60 should not get splenectomy and that if my dad has not had any bleeding episodes and only has bruising then he should not take any steroids or medicines. pretty much like derek. I cant thank you guys enough for being a great support during this time.
I wish I had this information you provided about not having my spleen removed. I was 68 when mine was removed and in very good physical condition. My hematologist in Tampa, Florida, USA is greatly respected by other hematologists. The operation was major surgery and they accidentally cut my intestine while doing the operation. That extended my stay in the hospital a few days. They knew they made the error and stitched it up quickly. I do not like not having my spleen but taking pregnezone continually was also not good for me. The operation did help my platelet count.
I controlled my ITP with drugs for two years and tried everything the docs knew about. I had my spleen out. My platelet count improved to something I can live with. Not a good count but and OK count. 30K to 55K and sometimes dipping as low as 14K if I get sick. I do not take antibiotics continually as a result of having my spleen out. However, at the first sign of a lung infection or fever I have in my possession antibiotics to take immediately. Then I go to the doctor and get even more treatment. That has never happened. It has been three years since my spleen was removed. I also fear a stoke, brain bleed, as a result of the low platelets. I carry in my wallet a medical alert not to give me a blood thinner like aspirin.
I am 71 years old and I live in the US. My platelets have gone to 32,000, and that's when I feel really sick. The only time they rose to 100 was when I was given a massive dose of steroids which hurt m y stomach. They fell again within 4 weeks. I take nothing for the ITP or the Lupus. The side effects can be worse than the sickness. I asked my doctor (hematologist) repeatedly how I can raise them. His response was there is no way. I've read articles where green vegetables and cruciferous veggies can raise them. However, I take Coumadin, and cannot eat any of those. After 4 years, I have no answers. Why do I get Lupus flares and sickness? No answers as to why and when - they just happen. I have SLE and so many other issues that I stopped asking questions because there are no answers. No medicines really "cure." If you can deal with the pain and bruising, and bleeding for days, you ar eprobably better off than taking all those meds that can cause more discomfort in other ways.
I am 69 and have itp. My platelet count was only 5,000 when I was diagnosed.a I have had qa course of steroid (prednisolone) followed by 4 weeks of retuximabq but both failed to solve the problem I am now on ivig which temporarily raises my count to around 100,000 but this falls back over the next few weeks. With regular blood tests,when the count is below 10 ivig is given. I am told that the only way forward could be a splenectomy ,but at my age and following a liver transplant 2 years ago I am reluctant to go down this path. I also understand that the success rate for this is only around 50% with persons much younger than I. As you can see there is a possible way forward with some form of treatment and I wish you the very best of good fortune.
They certainly used to be but I believe the NICE guidelines have changed again to the effect that the two treatments are only available if you have had your spleen out.
Try and get yourself referred to Dr. Drew Provan at the London Hospital. He will be up to date with what is possible within the guidelines.
I had a splenectomy and it did not work for me. I would strongly advise against having one. I was not offered the indium test and did not know anything about it until my spleen had been taken out. I now take penicillin twice a day to try to reduce the chance of getting infections. ITP is unpredictable and for that reason causes a lot of stress in the patients. Your father has a healthy lifestyle and should continue with that. I wish him all the best. Nicky
Helping your father. No sulfur or tin ingested in any way. Sulfur is used to prevent mold on grapes as they turn into raisins. They try to wash it all up but washing it all off is not possible. Tiny amounts of sulfur can reduce platelets. A friend used some eye drops with sulfur and had a platelet reduction for two weeks. Red wine can also contain sulfur.
As for Tin, it was used long ago in the canning process and could get into food. Some super old canned goods could have tin in the food. Consider cooking utensils that might contain tin. Tooth paste made in China maybe could have some. Our food sources are not analyzed much so as to prevent being partially poisoned as we eat.
I eat lots of red meat, Chicken and Fish. I mean a lot. I think it might help. I am taking a food supplement call Athletic Green. You can buy it on line. It is great stuff.
It is sad that the medical profession knows so little about ITP. Not many people have it. One day we will find out exactly what causes it and that will be the end of ITP.
Could your father have been exposed to nuke radiation during his life that could have effected the bone marrow. I was exposed when I checked timers on nuke bombs. It might have had an effect. However, am only grabbing as straws trying to find answers. How about chlorinated drinking water. Yep, maybe.
My mother age is 51 . Doctor suggested to take Eltrombopag or splenectomy . We take eltrombopag 25 mg Bt no use its cause severe side effects.so we totaly stop the tablet. Atlast my mother count is 17000 now we take homeopathy treatment..is quite good now my mother count is 136000.
i am suffering from itp since nov 14. Now i am on prednisolon 5 mg and my platlet count are at 43000.Pl tell which homeopathy medicine u r taking. or tell the doctors address or contact no. pl help thanks.
i from Madurai city...where u from?. I will mention the address. Dr. Premkumar, near by suguna store, annanagar. Madurai 20...all the best go and suggest the doctor.
Dear santh I m from Bangalore and retired fm air force. Can u give the contact no of Dr . he can dispatch the medicine through courier. How is his medicine . is it costly . my mob no is 0 9449321600. I can contact u pl give miss call or send SMS thanks. With regards.
Dear santh please reply.Today my platlets have come down to 28000.Please help me your one information wil help me to live in better way.Please help and send the e mail or contact no of doctor. Thanks.
hi!my 6yrs daughter was diagnosed with ITP for 7mths now.We did npt allow to have her injected with those autoimmune supressants.like steroids,ivig&etc.b'coz of the lifetime side effects of that medicines.instead we settled with HOMEOPATHIC treatment and it helps my daughter a lot.no side effects at all it boosts her immune system and shes becoming very active.amd her platelet from 36-58-98 it went up to 120.its a fter 3wks of taking homeo meds.
But we are very strict in her food intakes no process foods.just green keafy vegetables&freshly juiced fruits.What were giving her and i hope it will help tou also is we juiced the BEETROOTS,We put an organic honey.we juiced it with applr celery&carrots.at least shes taking 3 glasses a day.and bruises were gone platelet went stable far from danger of bleeding.
Hope you will try this and try to research about HOMEOPATHIC treatment.its a big help/relief to us. goodluck☺
I was on prednisolon 5mg. Today my platlets have come down to 28000.Can you pl tell me the name and potency of homeopathy medicine.It will be a great help.Thanks with regards
Thanks guys tomorrow i am again going to consult the doctor and have his blood tested also.The last time his count was 2000 the Revolade dose has been increased to 50 mg.I am just hoping his platelets count start showing some improvement. I will definitely start trying the beet root juice.People have also suggested Goat Milk and papaya leave extract i am not sure if these are also effective or not.
No good news the platelets are 3000, a diff of 1000 from previous time i believe it is just a measurement difference. The doctor is suggesting to go for Rituximab injection for 4 weeks i am not sure how effective it is and what are its side effect.
Greetings from India to all ITP supporters in this group.
I am Manish Sanghavi from Mumbai, India. My wife - Sweety Sanghavi, has recently been affected by a blood disorder called Thrombotic Thrombocytopenic Purpura (TTP).
Brief background - My wife was pregnant 2 yrs back. She had developted Thyrod durring pregnancy and thyrod was normal after pregency. However, since last 45 days , she was feeling very weak. On 28th Jan 15 morning, she felt stiffness on her left hand , around her mouth and head for 1 minute. Same day evening, she got similar feeling on her right hand and head. We immediately rushed to our family doctor. He adviced blood tests. In the tests,we saw her hemoglobin was 5.80 and Platelete were around 30,000 only.
Our doctor informed us to consult a Hemotologist asap and we went to Dr M B Agarwal - Best Hemotologist in Mumbai. The doctor did the born marrow test and informed us that she is affected by TTP and she will have to be admitted immediately.
She compeleted 5 cycles of plasma exchange and 4 doses of reditux injections (by Doctor Reddy) and got discharged on 3rd Feb. However, she got a re-attack in 10 days after discharge from hospital. She underwent further 5 cycles of plasma exchange. The last plasma exchange was done on 28th Feb 2015.
Sweety is a t home since last one month taking bedrest. She is taking steriods on alternate days and other medicines. He platelets are under normal range currently.
Request your help in getting the following information:
1) Is TTP and ITP same or there are different treatements for these 2 diseases.
2) It will be great to get contact details of any person who was by affected by TTP and is currently out of it. We can get suggession from such persons...to prevent a re-attack.
I can also do a concall with you to discuss further, if required. In case of any further information required from my end , please feel free to call me at 98193 57778.
Greetings from India to all the ITP supporters in this group ! This is Manish Sanghavi from Mumbai , India. My wife recently got affected with TTP. Pls find below a brief background:
Brief background - My wife was pregnant 2 yrs back. She had developted Thyrod durring pregnancy and thyrod was normal after pregency. However, since last 45 days , she was feeling very weak. On 28th Jan 15 morning, she felt stiffness on her left hand and around her lips for 1 minute. Same day evening, she got similar feeling on her right hand and head. This was something like paralytic attack. We immediately rushed to our family doctor. He adviced blood tests. In the tests,we saw her hemoglobin was 5.80 and Platelete were around 30,000 only.
Our doctor informed us to consult a Hemotologist asap and we went to Dr M B Agarwal. The Doctor did the bone marrow test and informed us that she is affected by TTP and she will have to be admitted to hospital asap.
She compeleted 5 cycles of plasma exchange and 4 doses of reditux injections (by Doctor Reddy) and got discharged on 3rd Feb. However, she got a re-attack in 10 days after discharge from hospital. She underwent further 5 cycles of plasma exchange. The last plasma exchange was done on 28th Feb 2015.
Sweety is at home taking bedrest. She is having steriods on alternate days. Her platelets are in normal range currently (crossing figures).
Request your help in getting the following information :
1) Is the treatement for TTP and ITP is same ?
2) Pls advice on any alternate treatment possible for treating TTP / precautions to be taken etc.
It will be great to get contact details of any person who was by affected by TTP and is currently out of it. We can get suggession from such persons...to prevent a re-attack.
I can also do a concall / skype chat etc with you to discuss further, if required. In case of any further information required from my end , please feel free to write to me at manish.sanghavi@gmail.com
Each time I read posts here saying they were given IV-IG, my impression is that they were administered as just a one-dose kind of treatment. I don't know if I'm reading right, because in my case the total dose was computed based on my body weight. And if I remember right, it was like a dose of 2 to 2.5 mg per kilogram of body weight. In my case, I have it divided in 4 days dosage of 16 vials (10 mg per vial) per day and usually completed in a 10-hour drip period. The daily improvement in my count was impressive starting from my very low count of 6 (it was 3 before platelet transfusion and steroid injection). In 4-days period i was brought back to my normal count.
I have had a zero platelet count. I've had ITP for 18 years and I am 70. I get Rituxin infusions that keep my count in the normal range for two to three years.
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