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Diagnosed with ITP and need help with tapering my prednisolone

Harshankolekar profile image
27 Replies

Hello everyone

So I was diagnosed with ITP a month back

I just did a random CBC test and my platelets were low so the doctor immediately admitted me in the hospital and I was there for a week, they did my bone marrow aspiration which turned out Normal also all my Ana tests were negative hence the doctor came to conclusion that it was just ITP and there is no underlying autoimmune disorder

So I was put on 40mg prednisolone my platelet count went up to 80000

it's been a month now and doctor has started off taper the dose right now I'm on 20mg and have to again get tested on Friday to see if my platelets are still stable

My question is how long before I can be completely off prednisolone and how long does it take to completely recover from the side effects

Are there any precautions I need to take whole coming off?

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Harshankolekar profile image
Harshankolekar
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27 Replies
crissy22a profile image
crissy22a

Please look at the connection between ,TIP and depression. It's massive . You do not havecto suffer. When you dont have platelets your body can not back seratonin . Good luck Cx

Harshankolekar profile image
Harshankolekar in reply tocrissy22a

Yes suffering is there without doubt but let's work on how to minimise it

If you can shed light on that it will be great

Asimkumar profile image
Asimkumar

Hello, Homeopathy will help.

Regards

Harshankolekar profile image
Harshankolekar in reply toAsimkumar

Thanks fog replying Asim kumar

Have you tried homeopathy treatment if yes how effective it was and the duration

sharroN42 profile image
sharroN42

Hi Harshankolekar,

I swear by papaya leaf juice and try to take it on a daily basis. (It is very expensive for Canadians and I occasionally run out .) Whenever I have large (and small) bruises it seems to clear them up much more quickly than when I don't/can't take it. I have taken it in greater amounts recently and it seems to be working. My platelets went from 19 to 55 in spite of Christmas indulgences.

Good luck

Harshankolekar profile image
Harshankolekar in reply tosharroN42

Wow that's so good to hear Sharon

Papaya leaf juice is really very cheap back here in India and easily available.

I will surely try and consume it on a regular basis

Thanks for taking time out to reply

Prathyusha profile image
Prathyusha in reply tosharroN42

But papaya leaf juice is not scientifically proven to improve the plaletlets count as per my knowledge

Asimkumar profile image
Asimkumar

I am on homeopathy treatment from 20dec18. My platelets count was 34000.

On 25dec18.. Platelets rose to 65000.

No PREDNISOLONE since 17DEC18.

Currently on ELTROMBOPAG 25mg every alternate day.

Platelets as of yesterday 65000.

Homeopathy is working for me.

Harshankolekar profile image
Harshankolekar in reply toAsimkumar

Wow that is really good news Asimkumar

I will surely look for homeopathy doctors who can help me out with it

Wishing you a super recovery

Prathyusha profile image
Prathyusha in reply toAsimkumar

Hi Asim ..

Good to hear that treatment is working for you .. can you please inbox ur mobile no ? My daughter is recently been diagnosed . I would like to know some info regarding this

Asimkumar profile image
Asimkumar in reply toPrathyusha

9449564070

Harshankolekar profile image
Harshankolekar in reply toAsimkumar

Thank you Asim kumar

Georgiagirl61 profile image
Georgiagirl61 in reply toAsimkumar

Hi. Eltrombopag is Promacta. I can't speak to the papaya, but Promacta shot my platelets up. I am still on it, so I don't know if it will hold. It is not homeopathic.

RobertSp profile image
RobertSp

Hi,

My story is very much like yours. Through a random blood test in the military I was diagnosed with ITP. A platelet count of 5,000. I did the prednisone treatment. It is very important to come off of the prednisone slowly. Side affects from coming off too fast can be a significant problem. Please take the time and let the doctors manage the lowering of the dosage. The side affects last for some time. The major side affects like weight gain will go away fairly quickly but to truly get your energy back will take longer.

Harshankolekar profile image
Harshankolekar in reply toRobertSp

Thank you so much for replying robert

Yes I'm doing exactly what the doctor has suggested and tapering slowly and gradually, major sides are muscle weakness and a lot of acne yes and the sleep also gets affected

But I'm trying to naturally boost my adrenal function so that side effects are minimised and recovery is quick

lillaa profile image
lillaa

I'd recommend checking out the pdsa.org/discussion-group site, it has more useful topics than this site

Harshankolekar profile image
Harshankolekar in reply tolillaa

Yes I did have a look the the site you mentioned

Thank you

lsued profile image
lsued

In my case, and depending on how well the platelets level hold, they reduce 5 mg of prednisone weekly. You have to be careful not to taper it to fast because platelets may drop and your renal glands need time for the adjustment. The time it takes to recover from the side effects depends on how long you were on the drugs and the dosage. Also, not everyone gets the same side effects. In your case I would think that in a couple of months you should be back to normal, because you didn't take it for too long and the dosage was relatively low. Take care of what you eat and avoid salt.

Harshankolekar profile image
Harshankolekar in reply tolsued

Thank you so much

I have been on it for a month now

40mg is what I took and now I'm already on 20mg since past 5 days and feeling OK

Getting a CBC done tomorrow to check how are the platelets responding

Also any other specific diet advice which would be helpful?

vernmary profile image
vernmary in reply toHarshankolekar

I was put on 100mg daily, prednisone, and now taken down to 80 for 2 weeks then down 20mg at a time until I'm off. I see a hemotologist and he is managing my problem. I had only 3 platelets and was rushed to the ER, given massive dose of steroids and a platelet transfusion. Now, platelets are up to 112. Hoping to hold when I finish the prednisone. My history includes Lupus in the 70s, Hashimoto thyroiditis in the 80s and now this in this. ITP. So, I guess they are all connected...autoimmune disorders. It just showed up at my door and now I must deal with it. My doc is great!. Good luck.

CDmom profile image
CDmom

Hi,

I tapered the prdnisone VERY slowly! 2.5mg at a time for a week if I remember correctly. Heres the rest of my story in case it is helpful...

After a virus that I caught abroad, my body stayed busy attacking my platelets by mistake for 8 months until homeopathic doctors got rid of my underlying infection and rebalanced my immune system.

Western doctors gave me IVIG and steroids and promacta for 8 months every 2 weeks with platelets bottoming out at 1,000 to 7,000 every 2 weeks. It was just a very bad bandaid approach! Even Mayo clinic did not help me. Then the drs were mad that I refused rixtuin.

Finally after 8 months of the rollercoaster bandaid approach, I found homeopathic drs that treated the underlying cause and infection I had. I was cured of platelet crashes after one month of homeopathics.

For me the homeopathics such as cats claw, notanum, silvercillin, Alka C, viruchord, Moducare, immunomod A, and Adenal life force were focused on getting rid of infections, fungus, parasites and then rebalancing the immune system. I also was advised to go gluten free and decrease dairy. It would be great if more pople could be aware of the chance to get rid of this terrible disease through homeoptahy! I am not sayin g it will work for everyone but it might be worth a try. The western doctors told me I would have ITP forever and I have been without ITP since October 2017.

Best,

CDmom

Harshankolekar profile image
Harshankolekar in reply toCDmom

Wow that's really very helpful

I will definitely go for homeopathic treatment

Thank you!

CDmom profile image
CDmom

Good luck!!!

A bit more detail...I did 3 rife treatments; Ultrasound waves which targeted killing infections, bacteria, and parasites by busting the membrane walls.

Then I went to Dr. Elliott, initially every month, who used an Avitar machine to determine what organs were having issues and what homeopathics would help me.

Let me know if I can help in any way.

Sherri40 profile image
Sherri40

Hi, personally I had no issues, just drank a lot of water, limited sun and tried to stay active as initially my limbs were weak.

swheels profile image
swheels

Hello I’ve had ITP since I was about two years old, I’m 50 now. Had it in remission for 15 years then had a relapse. I was on prednisilone, high doses for a short time in the late 90’s. New treatments have now been discovered but they always start with steroids. You have to reduce the dose and not stop them because it can be dangerous to your body. I’m having another relapse but my treatment is Nplate (Romiplostin) now as my platelets aren’t stabilising on steroids. From 20mg, reduce to 10 for a week or two depending on the time your doctor prescribed then down to 5mg, then none. It’s how I’ve always done it. If I start at 80 then it’s 60,40,20,10,5. The side effects will start to fade after a few weeks. Make sure you have calcium in your diet as steroids takes it out of your body. If the steroids don’t work you’ll be given several options to choose from by your doctor. Good luck hope this helps. Eat as healthy as you can the steroids can increase your appetite.

Khanbajaury profile image
Khanbajaury

I also dignose ITP few days ago the doctor tested for ANA which is negative and tested for helicobacter pylori antigen which is positive UpTo 10 percent due to which my platelets decreased,if u have some stomach problem then tell you doctor for this test also,search symptoms of h pylori antigen if u have then must go for this test

Khanbajaury profile image
Khanbajaury

Also go for dengue test it's common in India and Pakistan

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