Low Platelets..Help PLS!!! only 22 years old

Hi Jwest.. I was diagnosed with ITP on Feb 10, 2012 and mine was kinda simular to what happen to u.. I thought i had a kidney infection because I had back pain.. went to doc said had blood in urine but said I didnt have a infection????? ran blood test and found nothing.. (count was 170,000) that was in January.. well one day I woke up with lots of bruises on my legs and arms and freaked out.feb 8. doc sent me to ER.. my count was 70,000.. they didnt even say anything about it.. they only found a UTI.. gave me antoibotics and sent me home.. 2 days later I woke up with extreme left leg pain( where most of my bruising was) so another ER trip I made.. my count was 25,000(lowest count I have had).. they diagnosed me with ITP,, gave me 140mg of prednisone and sent me home. 2 days later my count was 143,000.. (highest its gotten since ITP) well i seen a hemotolgist 3 days later.. my count dropped to 100,000.. he started tapering me down because I have had such horrible side effects.. well Im now at 50 mg and my count has been at 50,000 to 58,000 for the past 2 weeks.. I told my doc I have to get off this med..(side effects or horrible.. I now have high blood pressure, high blood sugar, anxiety, heart races so fast, my fingers or starting to cramp up, acne, have gained 14pnds, getting round face,cant sleep at night,acid reflux,and I could keep going..) so he is wanting to do the NPLATE injection.. which I am hesitating because if I stay at 50,000 I feel I should be ok with out treatment.. but who knows?? im new to all this... I dont know what to do... should I go ahead and do the NPLATE or wait till Im off the pred and just see if I drop... clueless about this..

Mothergoo, the idea of Nplate is to get a count of 50 or a bit more so as you already have such a count they really ought not give it to you just yet. Who knows, maybe you'll stay up when you come off the steroids. Even your lowest count of 25 is not bad. If it were me I'd watch and wait for a while off the steroids to see what happens.

I also came across a page that suggested massaging castor oil into my spleen area to help with platelet production.

Okay, I give up.....how would 'massaging castor oil into my spleen area' affect platelets?
Did the website give any reasoning to go along with this advice? I'm quite curious.

.

as your skin is considered to be your 3rd kidney it absorbs the oil and so is in your blood stream. The properties in the castor oil should hopefully have benefits for the spleen and also in turn the platelet count. If you want you could google it just as I did. If the castor oil is not really doing anything then atleast I will have nice smooth skin around my spleen area hehehe.

On a lighter note...my platelets are now at 80,000 (woot woot) which is a vast improvement from the measley 9000 from the other day. I am off for another blood test today but will probably not get the results until monday. I am not yet 'normal' but am well on the path to clear skin with no spots or black bruises

The properties in the castor oil should hopefully have benefits for the spleen and also in turn the platelet count.

Ahhh....it's a 'should hopefully' thing. Good luck.

.

Ok, so last tuesday my platelets were at 9000, just one week later they are at 268,000. I have been taking the prednisone 100mg per day. I have also been dosing myself up on alternative therapies, Colloidal silver, swedish bitters, executive B stress multi vit, vitC, vitD,and calcium along with massaging castor oil into my spleen area. I have also been drinking herbal teas such as peppermint, chamomile and dandelion. I have yarrow on order but perhaps won't need it.

I am tapering off the prednisone from tomorrow and will see if my levels drop or wether they are stabilised. I am very encouraged at the speed my platelets have increased and will let you know if they stay the same once I am off the prednisone.

Hey weirdjack, I believe hope is all I have when faced with the unknown

You need a nephrologist - a kidney specialist. The ER is not going to find out what in the kidney (?) caused this. You must find a good center to prevent long term problems. In addition, you need to increase you platelets, but this is just until you deal with the kidney. Steroids, for example, might help the platelets but harm the kidney or some infections.

Krsnana- thats great that your counts are way up in the BIG numbers! I hope they stay up there after the prednisone taper. You have a lot of enthusiasm and thats a good thing.

But I do want to mention that colloidal silver has no known benefits plus irreversible side effects. This is what the Mayo Clinic says about it:

www.mayoclinic.com/health/colloidal-silver/AN01682

Yes, I would prefer to have something to massage on the skin instead of taking all these freakin' pills and infusions. I think something that would make my spleen spit the platelets back out would be good. ha - good luck and keep us posted

posey yesterday in the natural section I asked krsnanandini why colloidal silver was being taken - and also gave the Mayo Clinic site on it. Ann posted there was a video on youtube of a man who had taken it - so I found it and posted it in that thread.

This is the thread in the natural section:

www.pdsa.org/forum/8-natural-treatment-methods/22565-re-research-based-natural-productsa-succesful-story.html?limit=10&start=10#23072

Thanks Melinda! I don't usually follow the natural treatments section. Good posts, the video is powerful. A picture is truly worth a thousand words. Its sad to see that kind of denial.

A few years back, I went to a Naturopathic doctor in the San Francisco area who came highly recommended- the best in the area people said. I didn't like my hemotologist and just had to try something. The doctor visit was $285. She prescribed colloidal silver and vitamins that cost $50. a bottle. I didn't buy any of it. Esp. the idea of drinking silver solution, it lacked so much common sense to me. I regretted wasting the money on that doctor visit but hey, live and learn.

Soon after I was able to find a new hemotologist, someone that I really liked who was a good guy and a real healer.

I try to stay out of there too posey but sometimes get curious. And whether that man in the video got discolored because of silver or colloidal silver it doesn't matter - both can cause that problem he has.

I'm one who questions everything - from a PT exercise to an antibiotic to a supplement. I read about something. My MD will prescribe something and then tells me to go home and read about it to see if I want to take it

I am glad you now have a hematologist you like and trust! [me too - hadn't seen one since we had to switch medical Jan 1, 2004 - then last Dec needed oral surgery and the endodontist wouldn't but into me until a specialist said ok - so now I have a hematologist again and this man is super!]

Update: ITP is finally getting some what under control for me and my last found thursday was 131,000 and it has consecutively went up 12,000 every week for 2 weeks now on the prednisone tapper which is at 10mg a day now currently...But I believe or should say hoping that I am having withdrawal symptoms maybe some people out there who took prednisone in high doses and for a long time can help me out? My kidneys hurt? the best way to describe it is that it feels like i have sunburn on them..which is not fun I went to the ER twice and both time I've have blood and protein in my urine just a little though..But my Hematologist which is an idiot informed me it could be from the prednisone but I asked for a second opinion from a Nephrologist and he said any time there is protein in the urine that it means the kidneys are being damaged..FML:pinch: so basically my question is too anyone who ever did a prednisone tapper from a high dose ever have blood or protein in your urine and sever kidney pain??? and no i don't have a kidney infection I have been checked twiceB)

I had something like that after prednisolone. By the time I got checked out at the hospital it had gone but I suppose it lasted for about 6 months in all. I had a lot of bladder pain but kidneys too. My GP was moving towards it being interstitial cystitis but as I say, it cleared up on its own. I have also had something that appears to be kidney stones twice more that I am convinced is related to the steroids. I read that somewhere too but a lot of doctors just dismiss it as they do a lot of things.

My sisters platelets have been as low as 1. She has been in and out of the hospital since December. Typically, a normal platelet level is anywhere frm 150 - 450. When they get below 10 is when you should be in the hospital. Bleeds can occur and could be life threatening.
If you have other things going on also, it is probably more than ITP. I would get another opinion.
Also, I had itp as a teenager and I outgrew it. If you get it as an adult, it becomes a chronic condition and is considered an autoimmune disorder.

no need to worry about counts over 100, figure out your kidneys before everything. some doctors make 100 sound bad and when i first got on here people said they would kill to get 50, well thats true i would kill to get 100, im almost 3 months without anything and staying about 50 give or take 10. my advice, get off pred. 100 plus counts are fine, focus on your kidneys.

new update I have been on a tapper dose of prednisone @ 10mg for 7 days and 7 days later my platelets fell from 131,00 to just 33,000.. Im still very confused everything was going good when i was on a 20mg pred daily and platelets levels were going up now there crashing again and my hematologist doesn't care...(i know some of you have lower but seriously I use to workout everyday and can't remember the last time I have been seriously ill) and I'm not buying the whole sponanteous development of a auto immune disorder.. I don't know if anyone agrees with me but as a full time student I don't have the time or energy to messing around with prednisone..feeling as though its time to try a new hematologist..and new treatment

well doctor just dropped a bomb on me this week apparently my platelets have been "low" since 2008 when I had my ACL surgery..The report said my platelets were at 112 so this just opens up a new can of worms for me does anyone know of any diseases that would cause a low platelet count? i understand 112 is not low but its not normal as well..

There are plenty of diseases that can cause low platelets. Primary ITP is the main one. I will let your hematologist speculate on other causes. If he has not tested you for anything else and you have other symptoms, get a second opinion. Of the three hematologists I've seen, they have all had differing opinions on what to test for besides platelet count. The ITP expert is the one who ordered the most tests, and I trust her the most. I have no other symptoms, and all testing came back negative. If you have other symptoms, find a doctor that wants to find the cause.

Jwest- why did you stop working out? D you feel really bad on the meds?

I ask because exercise can actually help the side effects of the prednisone, and shouldn't affect the platelets in any direction.

So if you are up to it, work out!

Jwest:

There isn't anything necessarily wrong with having platelet counts below normal. It can happen to people without ITP if they have a virus or take a medication. Usually though, they don't know about it because counts recover and they were not tested when counts were down. It happened to my hemo once when he was sick. He went into the 70's. You could have also had mild ITP going on back then, which is nothing to worry about and needs no treatment.

You might not want to buy the autoimmune theory, but it's the best one there is. There are about 88 autoimmune disorders and ITP is just one of them. I know a lot of people who have at least one, including my daughter (Graves). The same thing happened to most of us - hit out of the blue - healthy before that. Believe me, I don't think anyone has the time for it. But it is what it is.

Kittie is right; exercise is fine with ITP as long as you aren't lifting weights with low counts. You can adjust your activities to be safe but still active. There are always ways to fit normal life in somehow.

Believe me, I don't think anyone has the time for it. But it is what it is.

Yep...I don't have time for ITP either. Can I return it for a refund?

I am very excited, I had a blood test yesterday and my platelets are now a fantastic 217,000

I am so very pleased. I am currently on 10mg of prednisone and droping by 2mg per week now. I am also taking the Maharishi Amrit Kalash nectar and Ambrosia tablets (Ayurvedic medicine) If anyone wants to know the website I am going to for my products please email me (I was buying from Ebay but have found a proper site now)

I have another blood test in a month so hopefully I am able to report the same count or even higher

been awhile thought its time for a post finished rituxin and my platelet count did not budge in fact it went down and is falling even faster.. soo..Idk I have recently started seeing a renal specialist and still have trace amounts of protein and blood in urine and chronic pain in my kidneys..I see my hemo tomorrow to see what she has to say this should be interesting..just started working out again ....I have on the other hand have been reading and i hate to diagnose my self but I'm looking into vasculitis because of protein and blood in urine...so who knows once again anyone with any ideas feel free to comment looking for any suggestions on the next line of treatment

Double post, won't delete.

I doubt it's vasculitis. You'd have other symptoms with any form of that. I'd rather see the kidney specialist than the haematologist. What does the kidney guy say?

Yeah, there are a few reasons for protein in the urine. I'd talk to the nephrologist about that.

Dave, among the 3 hemotologists you've seen, did anyone order CT scan to rule out enlarged lymph node and enlarged spleen (A CT scan for upper chest and abdominal)?

I am only 28 and going through the same things you are. I went to the doctor today and they are at 16,000, wierd thing for me is I have had no rash and/or bleading other than my monthy period. I am new to this as well and would love to keep in touch with you thoughout this process.

yeah prob not vasculitis...but still reason for concern something is going on here and I'm not quite sure i have elevated bilirubin(liver enzymes) levels along with blood and and protein in my urine...I have intermittent back pain sometimes in my kidneys too and feel drained and tired 24/7 which is very unlike me..ive been googling i know its not the best thing to do but I'm running out of options with school on the horizon i don't have time for this and i need to get this figured out

I'm seeing a nephrologist currently dr.freidman of UPMC..he believe my proteinuria to be orthostatic meaning when i lay down i secrete is but then why the blood too my platelets are above 100k so i should be fine on that end...I have a lot of bloating and stomach pain as well and when i work out hard or strain i spit brightly colored blood now..