Which symptoms annoy you the most? L... - ITP Support Assoc...

ITP Support Association

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Which symptoms annoy you the most? Low grade fever, bruise, muscle pain

Manchopot profile image
18 Replies

Personally, i hate when it come, to my sudden bruise causing me a lot of depression.. anxiety, sometimes i locked my room.. i dont want to talk with my parents.. it's hard for me.. doctor can't help anything but he only can gave anti-depressant i lost my relationship with gf bcause im too focusing with this illness.. itp ruined my friendship also... do you guys have this problem too?..

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Manchopot profile image
Manchopot
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18 Replies
Kyriak51 profile image
Kyriak51

Must have been your GP who prescribed antidepressants as hematologist KNOW that seratoine and norepinephrine re-uptake inhibitors interfere with platelet function which in my caused increased and more severe bruising. Please speak to your hematologist; he/she may suggest CBT(cognitive behavioral therapy) for six months ( used extensively in. the UK with good results). An other choice would be Atomoxetin (Strattera) starting dose of 60mg daily and increased as needed. Sixty mg daily worked for me until the US drug insurance companies increased my cost from $10.00 per month to $159.50 per month for is generic ADHD medication that has been around for many years.

When my platelets drop to 10-24 thousand, I exercise increased irritation, bruising pain and depression.

Be well and please let me know if you we’re able to get appropriate treatment for our depression:) Georgia

Seafood profile image
Seafood in reply to Kyriak51

I’ve always been an athlete. Now I found to go work out and get the good pain just maxed the bad pain with good pain and was bad pain. If that makes since. Also, it takes forever to heal from the smallest of injury! I hit my toe on the bed, and had the biggest bruise, pain etc I could hardly walk. It is depressing and makes me not even want to work out. Where I used to be be right and toned is all

Lose and wrinkle. Sucks

Manchopot profile image
Manchopot in reply to Seafood

Yeah same, for me.. i love sports i play soccer everyday with my friends.. sometimes small injuries.. can lead with a huge bruise.. that makes me feel so depressed, not again.. shortly after that im going home and .. i will googling about what causing huge bruise on my leg.. then i depress again.. doctor told me to stop googling.. but im so stubborn.. my gf leave me, after 2 years we've been together.. and recently, this year i suffer from itp.. i keep searching which treatment, herbal, or supplement.. is work out to increase my platlets.. bcause my platlets were too low.. i keep focusing this illness.. until my best friends and gf leave they thought that im a crazy.. guy, they don't know how im struggling they keep judging me..😔😔🙏.. hey i want you to keep positive ok for this new year.. and take care💪 fighthing itp together..

magone7 profile image
magone7

Hi, yes, now after reading your message I started to think about it. Somehow I mostly like to spend time alone. I used to have a lot of friends.

Manchopot profile image
Manchopot in reply to magone7

Always positive and happy new year take care ok..🙏💪

CDmom profile image
CDmom

Yes! It was terrible. And you can't plan because you never know when your platelets will crash! Even now I've been stable for over a year, I sometimes find myself being scared that I am getting bruises and sick again. But we can all handle what we are given!

Here is my story in case it can help you.

This is my summary I sent in the past. Sorry if you have seen it already but yest homeopathy worked for me after a very bad 8 months of western doctors not treating the cause just the symptoms. Thoughts? Cindy

I am wondering how many people got ITP after a trip abroad to a third world country? Sadly, I did! I had bruises all over my body just 2 weeks after I came back from Costa Rica to USA in April 2017.

The western doctors said there was no cooralation and to get used to having an auto immune disease called idiopathic thrombocytopenia, forever.

But I did not believe them. After being very sick for seven straight months, finally I was cured In just One month after I began the following relatively simple eastern approach treatments that the Western doctors don’t understand because they are not educated in eastern medicine.

September 2017 I went to two homeopathic drs that cured me of platelet crashes by October 2017. I continued to go to one doctor for several months just to get my immune system rebalanced.

1st Practioneer- I got rid of whatever I caught in Costa Rica! Rife treatments treated me for parasites, bacterias, funguses, etc. I took a pill from Vitamin Cottage called Para Rid in conjunction with 3 Rife treatments. Rife treatments are ultrasonic waves used to destroy parasite, bacteria, fungus cell membrane walls. It is important to note they could find no bacteria or parasites in my stool sample but I did it anyway. Because things are often present but undetected. (and my girlfriend made me!)

2nd practioneer. I got rid of any lingering viruses, fungus and bacteria and rebalanced my immune system through eastern based homeopathy treatment. The Avitar machine checked my organs using acupressure points on my hands and feet. Once it was determined what my body needed. The doctor selected homeopathic pills and elixirs that treated viruses, fungus, and bacteria and rebalanced my immune system that was attacking itself. This doctor treated me for several months and now I see him every 6 months.

After needing life saving IV I G and Dexamethasone bursts every 10 to 14 days for platelets as low as 1,000 from April 2017 until last October 2017, I am cured!

This Oct 2018 is my 1 year anniversary since my platelets have crashed and I have needed IVIG! My platelets are now stable and within normal limits at 250,000. Hooray!

One final thought to share… I had gone to many immunologist begging them to find some infection that they could treat. I knew in my bones I had caught something from Costa Rica that I did not have a lifetime of an auto immune disease ahead of me. I just needed treatment for whatever I caught in Costa Rica

One doctor agreed to give me three weeks of antibiotics last June 2017. While I was on the antibiotics my platelets were within normal limits! No cycles of crashes. As soon as I went off The antibiotics in July 2017 the platelets crashing down to 7000, 5000, and 1000 every 10 to 14 days began again. I begged the doctors for more antibiotics and they said no that it was irresponsible. Again thankfully the eastern doctors gave me homeopathic medicine to treat the infection and cure me!

I write this in case it helps even one person out there!

Sending you good thoughts! Hang in there!!!!

Seafood profile image
Seafood in reply to CDmom

I have not been abroad. However just took a short trip to the beach over thanksgiving with my 14 year old son / single mum. I got a uti first ever and lost a lot of blood. They gave me a shot and after a month the knot on my hip has still not healed and that side of my body has new pain all over.

The less I do the better I feel. But then I’m so depressed

CDmom profile image
CDmom in reply to Seafood

Is that when the ITP started after the infection? If so, I think you probably have some residual infection that is making your body attack itself. It is when your antibodies that are targeting the infection get confused and attack your platelets. Anyway that is what happened to me. Once the infection was cleared my ITP went away within a month!

Let me know if that is your situation or if it is something else.

CDmom profile image
CDmom in reply to Seafood

FYI My homeopath dr told me to go gluten free which I also did.

Manchopot profile image
Manchopot in reply to CDmom

We're fighthing you are not alone..🙏💪💪 always take care of yourself..

Seafood profile image
Seafood

yes no one really understands There is always fear of getting hurt. Going to the doctor my blood pressure gets so high.

I too am depressed and am a single mum. I just want to live long enough to get my boy in college 4 years. I am not going to end my life, however, my life has changed so much now that I have Itp, lupus, and sturgeons.

I went to the gym this day, I have avoided the gym due to catching the flu or something else. I did not hit anything, but came home with a huge black and blue on my ankle.

I have a big home, with a ton of yard work. I do have a 14 year old boy that could help with all that, however, he swims year around and seems to think that is all he is capable of doing except Ft. nite.

I am sure all of you are saying "take the game", but since it is just the two of us, and I have no family, his dad never in his life. That is a fight I cannot handle.

I am tired most of the time, maybe just depressed. I wake up some nights and just cannot shut my brain off.

I do not have friends, both parents passed in 2016. I am an only child. seems grim.

I do see a therapist, however some days I feel like it is useless.

Maybe 2019 will bring something better.

I wish I had a partner in life, but can you imagine sharing all this with someone??? they would run for the hills. sad.

Manchopot profile image
Manchopot in reply to Seafood

It's ok, keep positive in

this year.. stay away from the things that try to make your depression or anxiety trigger you know, thank god i just found this website.. itp association or else i don't know to who i want to shared my story with... you know not only i have itp but in the same time i have prostatitis.. inflamtion on my prostate.. but mine is, non bacterial.. looking forward for this year hoping that.. you'll be healing or a lot of improvement stay positive.. mommy🙏🙏 you can do this ok.. you'll never fight alone💪💪

lsued profile image
lsued

Same thing happens to me. I've had ITP for 18 years. It doesn't get any easier. The only drug that has given me lasting remissions is Danazol. Prednisone drives me insane. Rituximab worked for a year and then I had terrible side effects. I have blood work every month while on remission and weekly or more when in crisis.

Anti-depressants are not an option for ITP patients, it makes things worst. I had my worst crisis after taking Prozac for a month.

I can't lie to you, platelets are always on my mind and the smallest spot on my skin makes me worry.

Hope you find a way to cope with your illness. Hang in there!!!

Manchopot profile image
Manchopot in reply to lsued

Thank you, i hope you feeling well.. too.. always positive🙏🤙

Lynwoodley profile image
Lynwoodley

Hi. I have been taking a pre and pro biotic tablet monthly for 2 months now. I just had a blood test and my blood has gone up to 170 normally it is average 42 or lower lately. I take other herbal stuff that I have been taking for months but this is the first time in 2.5 years it’s gone up like this it may go down again but I have another test on Tuesday so will up date you then

Manchopot profile image
Manchopot in reply to Lynwoodley

Wow, nice to hear that your platlets is 174 keep it up and good luck i hope the same positive result.. normal platlets counts..🤙💪

Lynwoodley profile image
Lynwoodley

Hi I said I would give an update when I had the next blood test. I had been taking a pre/pro biotic tablet for 2 months and my count went from 28-42 to 170 for the first time in 2.5 years. Since then I ran out of my tablets about 7 days ago so have only been taking a pro biotic tablet as I can’t get them in Thailand. My count today is 82 that is still very good for me. I will be back in the UK on 15th Jan so will start the pre/pro biotic tablets again. I’m not saying that this is why my count has gone up but will keep monitoring it and give another update later

Reshma_prathap profile image
Reshma_prathap

Its a depressing disorder, but don't get disheartened.. there are lot of medications apart from steroids available. Slowly ,once the platelet becomes normal you can wean off the medications.

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