ITP : I have had low platelets for... - ITP Support Assoc...

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skipster
skipster

I have had low platelets for over a year now. This past feb. my count was 31 so I was put on a 4 day stint of steroids and my count went back up to 90. In late sept. my platelet count had dropped to 29 so Mayo put on the steroids again for 4 days and the count at the end of the week had risen to 91. I am diabetic type 2 and use lantus and Humalog as needed.

did another cbc this morning and count is down to 21. what are my options.

going back to mayo in nov for a check up.

last year they checked my bone marrow and spleen and found no cancer.

18 Replies
oldestnewest

Gluten free diet might help. Look into it.

My count averaged about 42 unless I went on holiday which I do every other month to Thailand, where I have a weekly blood CBC I found whenever I am away my count was always 62-86. I started taking Vitamin D 2,000 iu a day for the last 4 months and even when I am in UK now it has stayed at 66. I’m not saying it is definitely this but it seems like it is to me. My Vitamin D was checked and was in normal range so I checked with my consultant if was ok to take and he said it was. Always check before taking anything in case it affects any medicines ect you are taking. I also drink pomegranate juice as heard this was also good

skipster
skipster in reply to Lynwoodley

Thank you , Mayo Clinic has me starting ivig this coming week, will report after a few weeks.

bruiser2017
bruiser2017 in reply to skipster

Hi skipster, I've been through the IVig route several times, please be aware the usual effective time for IVig to have a lasting effect on platelet levels is only a matter of a few weeks. My experience was numbers rose quickly after the IVig infusion and then tailed away so that by the end of 4 weeks platelet counts were back in single figures.

skipster
skipster in reply to bruiser2017

Thankyou, Just did 2nd CBC and it dropped from 130 to 109 So Enjoying the numbers for now.

heather99
heather99 in reply to Lynwoodley

I also started taking vitamin D 2000 and my count has also climbed from 30 to 80. My thought is that is has to have something to do with sunlight ,vit D because many people on this forum are from the UK where there is not a lot of natural sunlight and write that their numbers change when on holiday somewhere sunny. Someone needs to research this.

Hi, I have had similar counts for almost 30 years. It is possible to live with such a thing. The side effects of the steroids were worse for me than the low counts. High for me these days is 40.

Robert

I was doing IVig every year or so for a few years . My counts went down to 5. Now I have changed to almost totally organically sources food and moved to the west coast and my counts have stalized around 40. So no more IVig for about the last 10 years. Bobert

isbong29
isbong29 in reply to RobertSp

Hi RobertSp ,Oh after starting organic foods your counts increase without medicine help? You don't eat meat and bread? My counts below 10K so I always do IVIG and steorids but i cannn't do more because of side effects..

Hi, I literally had every side effect in the book from Steroids. So I can really sympathize. Then I had a splenectomy. that put my counts up for a few years. Then they would oscillate between 5 and 60. At 5 I would get IVIG and some steroids for very short term. But with organic sourced foods it stabilized around 40. That was 10 years ago. I do eat meat on a regular schedule, but good quality meat organically grown if possible. And I supplement that with various organic nuts cashews almonds walnuts. Also salmon oil helps. This is for me and may not work for anyone else.

In discussion with my specialist and with searching the net for ideas, we have come to the conclusion that there are several diseases that are diagnosed as ITP. Each one reacts to different foods in different ways. For example flax seed makes my count drop. I suggest trying different foods (or not eating certain foods), keep track in a journal, and look for small changes in the count. Then put together all the foods that make small changes and try that as a diet. If it works for you, great. If not try other foods. I am a great believer in " we are what we eat."

Robert

sharroN42
sharroN42 in reply to RobertSp

Me too. I’ll now on 20 mg of dexamethasone every 2 weeks which seems to work. Recently had ivig prior to surgery. Don’t know what my platelets were but the surgery went well.

Also....a low maintenence dose of steroids can work...5 MG prednisone a day or every other day.

For me side effects of those beat punchier drugs which oftenale me feel ill or don't work...

Papaya leavessel or extract have been talked about now x

well I did 60 (3 bottles) units of ivig yesterday infused.. After it was all over and I had gone home I broke out in hives and had to go back to the ER where I was hooked up on iv again and given steroid, pepsin and Benadryl and allergenic syptoms went away. went to bed at 10 with a bg reading of 150. woke up at 3 am and the reading was close to 400. Took a shot of Humalog and it is slowly going back down.. steroids really affect blood sugars. anyway going back this Friday for a cbc platelet count and see what the doctors says next.

the doctors talk about a splenectomy next if this does not work but from reading posts in this forum I do not think I want that. Promacta seems to be the best working drug on this forum.

after having ivig my platelet count has risen to 135 . hope it lasts awhile

Please try gluten free diet taking all natural foods high in vit c, iron.. for meat pls try goat spleen, liver and chicken/ fish. For fruits - papaya, orange, grapefruit , kiwi, pomegranate.. veggies- cabbage , broccoli and grains - kidney beans, chick peas, etc.. avoid caffeine, Alcohol. Instead try camomile tea .. additional supplements / vit c supplements with right medication .. for me low dosage of corticosteroids and danogen worked over period of 2 months

My count has been about 32 for the last 5 years, having dropped from 85 over the last 19. It spikes to mid 60s if I have an infection or virus.

It stops me doing contact sports, and drinking too much, but at 53, I don't really want to do either anyway.

Concentrate on how you feel and not on the numbers.

AnthonyHeard
AnthonyHeardAdministrator

Welcome to the group skipster.

I have had ITP since July 2006 and at the beginning of my ITP journey I found the following sites the best places to start with finding out about ITP ...

itpsupport.org.uk/index.php...

pdsa.org

globalitp.org

Hope that helps.

There are many other social media forums on Facebook which you may wish to check out...here are just 3 of them.

facebook.com/Idiopathic-Thr...

facebook.com/groups/1540922...

facebook.com/groups/itp.mul...

thank you. this forum has really helped me to get an understanding if itp and what treatments there are and how folks relate to how the treatments have worked or not

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