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14 Dec 2021 17:46
  • Juliandrea85
  • Juliandrea85
It's difficult and sometimes I feel helpless. For me, the last two months have been really hard. 
I have problems at work since summer, and my anxiety problems came back. So I was put again on fluoxetine and alprazolam. After a month, november 17th, I had a big crash and count of 5 so I must stay in hospital for ivig.
I had to take days off work and after three days i had the worst migraines ever. It was the worst ivig experience in my life ( i had ivig on february and december and i had adverse effects but nothing compares to this time). I changed fluoxetine for agomelatine with my  other doctor.. .we suspect it could be related to that crash . i left fluoxetine cold turkey :( difficult to do.
After that I had good counts 180 the 19th, 340 the 24th. 239 the 29th november.
Last week, 12/07 i was on 336 and i had no romiplostim.
I was happy after all  and also for a little rest of romi. but sunday I saw a little petechiae and bruises. I was thinking about a count of 50-80...but today 7 again.
My doctor avoided ivig and i had metilprednisolone. 
We also are in difficult times in my family because grandpa had a stroke. He's recovering ...but I must help AND manage to have time for  my ITP crazy moment...
I feel like I would like pospone christmas too
11 Dec 2021 00:45
  • MelA
  • MelA
Not sure what happened to my post mrsb - but I am so sorry you are having to deal with this!  I won't go into what I posted
earlier that didn't show up - I am sorry the prednisone is causing dreams, I remember that all too well even at the dose of 20mg a day.  I sure hope you get in that trial and have great results!!!  Great to hear your bone pain has ceased!  thinking of you!!
10 Dec 2021 20:10
  • Cindy1
  • Cindy1
Hi All,
I have been cured of ITP for 4 years!
The underlying factor of my ITP were microbes like parasites in my gut. Once I was treated with Parasite destroyong pills for about a 3 week period of time along with 3 electromagnetic frequency treatments targeting eradicating parasites, my ITP rollercoaster of 7 months was cured in October 2017. 
10 Dec 2021 19:51
  • Cindy1
  • Cindy1
Hi clarry123,
You may want to look at the following topic "Cured from Virus, parasite or bacteria that triggered low plts! Now free of ITP" under the All Topics tab on this website.  There is a lot more info and posts from various other PDSA members.  They mention they have used the Healy frequency machine and PEMF Machines with success.   
Cured from Virus, parasite or bacteria that triggered low plts! Now free of ITP
10 Dec 2021 19:40
  • Cindy1
  • Cindy1
Hi clarry123,
I too was so exhausted from trying to convince doctors that my problem was either virus or gut related.  And as you know, I pretty much gave up after the doctor at a very famous clinic in USA told me that I had ITP and that is that. Then my friend told me to go get RIFE treatment and that practitioner told me to get parasite cleanse pills at the vitamin store. I took Parastroy, parasite eradicating pills for a few weeks as instructed on the pill package. Does that explain it better? If not please ask me whatever questions you have. 

I wanted to share a bit more info with you so I cut and pasted a paragraph below to explain how Rife works:  You could find much more info if you google Rife. Also people have said they used the spooky2 machine instead of the Rife machine. But you can just try the parasite eradicating pills as a first step.  Always check with your doctor to make sure that the pills are safe for you before taking them.
  
Dr. Rife compared his experiments to an opera singer who breaks a wine glass by using her vocal cords. The sound made from striking and holding the correct musical note (frequency) would interact with the glass, causing it to vibrate and shatter.Everything in the world has its own natural frequency. The rife machine was designed to detect the natural frequency of bacteria, viruses,.... Like the opera singer and the glass, the rife machine emits a frequency to target the cells and causes them to die.

Sending you great healaing thoughts.  Please keep me posted if you try this and your ITP is cured because I am keeping a list of people who are helped. I am hoping to make this more accepted and used as a first line treatment for ITP patients.

Thanks and Best,
Cindy
10 Dec 2021 16:06
  • clarry123
  • clarry123
Yes, mrsb04, I asked to be tested and it was negative. I live next to a forest with deer in it and we have a big tick problem so thought it was feasible. I've also been tested for Lymes but that was negative too.
10 Dec 2021 16:01
  • mrsb04
  • mrsb04
Clarry123

Have you been tested for H pylori at all?
10 Dec 2021 04:38
  • clarry123
  • clarry123
Hi Cindy, I found your post very interesting as I’ve felt that my ITP is somehow connected to my gut too, although no one’s listening to me. So sick of telling the consultants my symptoms and getting no reaction at all.
When you say parasite destroying pills are you meaning pills to get rid of worms or something stronger. I’m in Southern Ireland so maybe the language used is different? At this point I’m up for trying anything.
10 Dec 2021 02:40
  • mrsb04
  • mrsb04
Thank you poseymint

My last day on 20mg Pred. Down to  a week of 15mg tomorrow.  Oh for a decent night's dream free sleep.  
Retrospectively I wish I had done Rituximab all those years ago. If we weren't in the middle of a worldwide pandemic I would have opted for it this time but for now it's a 6 month trial. If it works I will be allowed to stay on the medication. If not I'm in for some thinking about what next.
My bone marrow will enjoy the rest I'm sure, The bone pain has already ceased within 2 weeks of stopping Romiplostim. I definitely will never take it again.  As Avatrombopag  has finally been authorised for chronic ITP over here I may well opt for it but  will ask to go on iron supplements at the outset as anaemia is one of the commonest side effects. 
09 Dec 2021 22:00
  • poseymint
  • poseymint
MrsB~ So sorry to hear of your ITP treatment problems! Its very frustrating. Hope the trial works soon. I know what you mean about symptoms changing. I'm getting purpura now on my hands. I've never had purpura before. Also it seems as though I am sometimes very responsive to prednisone and sometimes not. I wonder if there is a chance that eltrombopag could work again? Just a thought. People like Avatrombopag, I wonder if you have explored that option?

My platelets were 8 a couple weeks ago, no apparent reason for the drop. So I was also back on dreadful prednisone again also. I get kind of angry and intense on it and also have insomnia, hopefully my behavior is acceptable and not a representation of how I feel inside. I was at two doctor visits while on prednisone and felt very upset and confused after both visits, feeling like the doctors aren't helpful, uncaring, I can't understand them because they don't communicate well- I want to quit everything! haha Of course it was partly the prednisone and also I may have low thyroid (did labs today). Still I'm grateful to have pred as a rescue treatment that I can carry with me. I hope your prednisone taper goes well MrsB! Good you were Covid negative.

Take care- have a happy and safe and healthy holiday everyone!
08 Dec 2021 19:50
  • PattiM
  • PattiM
My son who is 23 just started seeing Dr. Andrew Eisenberger at Columbia University Irving Medical Center in NYC.  My son was diagnosed with ITP in January after contracting Covid.  He especially likes Dr. Eisenberger because he is down to earth and listens.  He actually called my son directly to discuss a new medication dose instead of having his nurse call.  My son was also admitted to Columbia Hospital recently for his ITP and found the hematology team to be excellent.  He saw Dr. David Diuguid who the head of the department while in the hospital and he is also very good.
Good luck.
08 Dec 2021 12:33
  • dneaphen@comcast.net
  • dneaphen@comcast.net
The itp did not cause the portal vein blood clot. I had a splenectomy and they super dosed me with steroids to get my platelets up for surgery. Because I also have a clotting disorder I should have been placed on blood thinners after surgery. I have learned a lot in the last few years. I now take 75 mg promacta daily and pradaxa is my daily blood thinner. When my counts drop they increase promacta and take me off blood thinners so I don’t get a clot. 
08 Dec 2021 12:12
  • mrobinsonadams
  • mrobinsonadams
Did the ITP cause the blood clot? Did it ever resolve and/or did you get hypertension from it?
08 Dec 2021 12:08
  • mrobinsonadams
  • mrobinsonadams
How were you able to resolve the blood clot? Did it ever go away and are you monitored for hypertension on a regular basis?
07 Dec 2021 09:50
  • CindyL
  • CindyL
Oh, Anne, I'm so sorry to hear this!  Hope your counts stabilize soon and you feel better.
07 Dec 2021 09:48
  • mrsb04
  • mrsb04
Thank you Ecoclayton. 
Hope you enjoyed London. 
07 Dec 2021 08:38
  • ecoclayton
  • ecoclayton
Sorry to hear this mrsb04.  I too have been riding the roller coaster since April.  Platelets crashed after 2nd covid vaccination into the low 20's, but rebounded into the 40's a few months later by just staying on the 20mg Doptelet.  I then got a minor case of covid in October, which actually jumped platelets into the 70's, and now back in the high 40's again.  I hope the prednisone symptoms stay away for you this time.  You will make it through this dip in the ride and be back at the top before you know it.

On a side note I was just in London over our Thanksgiving visiting my youngest daughter.  Fortunately, we had good weather and got out the morning before the snow storm that hit a few weeks ago.
07 Dec 2021 05:26
  • mrsb04
  • mrsb04
So one week after Romiplostim failed completely again, and increasing my Pred to 5mg/week whilst I am worked up for the PRN1008 trial 
I am covered in bruises and have oral blood blisters. FBC yesterday = Platelet count 5, WCC 17.8 (I did increase my pred slightly and have the slightest snivel of a cold. COVID negative on LF test yesterday).

Following a phone conversation with my Haemo Consultant I'm demoted to weekly blood tests and  Pred 20mg x 5 days, 15mg x 1wk, 15mg/10mg x1wk, 10mg x 1wk, 10mg/7.5mg x1wk then back to clinic to see her. 
On top of that I will  have to take a PPI to cover increased steroids which will put my gut microbiome way off kilter 

Hello insomnia, possible manic behaviour, gallons of body lotion and loads of probiotic supplements. Jolly old Christmas this will be. 

Symptoms changed which is probably the most annoying thing, not a hint  of a nosebleed  which has always previously indicated a count below 20. Only ever had one oral  blood blister about 6 years ago with a count in the teens. I am not feeling cold or particularly tired, they usually kick in below a 30 count. Last week with a count of 15 I was completely asymptomatic. 

Why not opt for IVIg? I hear some of you ask.  3 reasons from my point of view 
A:- there is a general worldwide shortage. 
B:- it is horrendously expensive and the NHS is on it's knees due to serious underfunding  after 11 years of Conservative policies,
and let's be honest my count can be managed on high dose steroids for a short while.  
C:- there is more chance of a transfusion reaction if one is nursing an infection when it is  administered and it looks like I may well be starting with a cold. 

That is my moan over.  Just storm Barra to look forward to now, it's  trashed Northern Island already  and is on its way here. Glad I live on the Eastern side of England hopefully it may calm down a bit before it arrives. Time to take the dog out for a walk . 
06 Dec 2021 10:20
  • CindyL
  • CindyL
Mum
I hear you, Mel!  That is something we're wrestling with!  We want to be with family for this first Christmas without mum.  In one way we were ok with not joining Cathy and the fam at Thanksgiving because of the 3 who aren't vaccinated. Did find out yesterday that my nephew did get his second dose. But I really don't want to miss Christmas!
Right now, as far as I know, the new variant hasn't been discovered here in my city, but it is in the country.  I have a feeling though that we will be in another lock down by Christmas.  Our numbers keep going up.  I read yesterday that in our hospital alone, there are 39 covid patients and 16 in the ICU.
I just don't understand why people won't get the vaccine!  I do get where my niece was coming from in not getting hers, but now that has been debunked, so there really isn't any excuse for either her or the boyfriend to not get them.
We'll keep an eye on the situation and go from there.
Category: Social Chat
05 Dec 2021 15:53
  • MelA
  • MelA
Mum
Just a little bit on covid - with the new variant I wouldn't knowingly be in the same room with someone who isn't fully vaccinated; for 1) I wouldn't be happy that they were doing that to me, if they want to get sick fine but don't take me with you - and for 2) I just would not be comfortable even if they are masked!!

My fully vaccinated son, a couple days shy of getting the booster, came down with covid a couple days after his young son, who was just a couple days shy of getting his 1st vaccine.  The time-line indicates his son got it from school - luckily the other 2 in the family didn't get it. My son said it was hell, but thankfully the vaccine did its job & he had no lung or heart involvement & no hospital stay or intubated and he is alive!!!

A cake baker at my grocery store got covid in Feb - still didn't get vaccinated and caught it again in May, this time from her daughter who visited, and she got it worse and was in the hospital 3-4 months and she still is having lung/breathing problems.  

Take care Cindy!!!
Category: Social Chat
05 Dec 2021 10:00
  • CindyL
  • CindyL
Mum
Depends on Covid.  Our case numbers keep rising, and the Government has put out some new restrictions.  So far, getting together for Christmas is still possible. But if things change, we go into a phase 2 where things get restricted more and if we go into phase 3, everything goes into total shut down again.
If that happens, I hope that at least my brother can go to Cathy's for Christmas.  At Thanksgiving, single people living alone could be in a one family bubble so he got to enjoy Thanksgiving.
The other issue we're having is my niece and her boyfriend aren't vaccinated and neither is my sister's boyfriend. I don't know if my nephew has gotten his second shot yet or not.
Truthfully, I'm not looking forward to Christmas anyway.
Category: Social Chat
04 Dec 2021 14:00
  • MelA
  • MelA
Oh mrsb I'm sorry your I'm sorry - you sure are having a time of it!  I'm with  you - if a medication isn't working why stick with it and suffer the side effects.  I sure hope the 5mg of pred daily will do the trick and bring your count back up to a good count!  Fingers are crossed the trial comes through for you!
04 Dec 2021 13:53
  • MelA
  • MelA
Sorry you are back on pred lilicarot -  one thing all of us hope we don't have to do again.  Hope your count gets to a good level and stays there!
04 Dec 2021 13:44
  • MelA
  • MelA
Mum
You know, I'm protective of my older sister too - she has always been someone I've looked up  to and I love her to pieces!!  
Will you get together for Christmas?
Category: Social Chat
02 Dec 2021 13:52
  • mala_malina
  • mala_malina
Thank you both for your replies. 
I feel like in the last two months I've read hundrets of studies and guidelines regarding ITP, but we all know: knowledge is power. Thank you mrsb04, I didn't know this guide yet.

Our hematologist is always worried, when the count is below 20. Especially when the weekend is approaching and he is not there to check the counts. I think we will pay attention to symptoms before going to the hospital again.

The hematologist also said he doesn't like giving Nplate, but we don't know why. I also think it's worth a try, nobody knows if it's going to work or not.
02 Dec 2021 09:07
  • mrsb04
  • mrsb04
I was  admitted to hospital overnight when I was diagnosed 7 years ago with a count of 12 and  sent home the next morning.
Since then I've had counts in single figures many times and have never been readmitted.
I worked as a front tine  nurse with counts as low as 2. 

IVIg only produces a transient response. It is classed as a rescue remedy.

Have a look at this it is the most upto date guidelines  www.hematology.org/-/media/Hematology/Files/Education/Clinicians/Guidelines-Quality/Documents/ASH-ITP-Pocket-Guide-FOR-WEB-1204.pdf
01 Dec 2021 21:35
  • poseymint
  • poseymint
In answer to the question about having counts of 10 and staying out of the hospital-

I've had ITP for 12 years. During that time my counts have been below 10 many times and I have gone to work, driven my car and gone about my business. I've had counts of 1 and 2 which are basically the same as zero. And I have never been in the hospital. Its because my hematologist (San Francisco area) looks at symptoms rather than just counts and I usually don't have anything more than petechiae and bruising. If my counts are below 10, I take some prednisone. It sounds like your doctors are doing the right things and using the up-to-date treatments. With ITP a person has to get to know their own body to figure out if they are okay with counts of 10. Its a risk to have low counts but the treatments are risky too.

Nplate (romiplostin) is similar to Eltrombopag but not the same. Sometimes Nplate will work when Promacta (eltrombopag) does not work and the other way around. It sounds like a good option. I have been on Nplate weekly injections for 5 years. It seems to have no side effects for me. It keeps my counts around 20-40. This is safe for me though not for everyone. Sometimes my counts drop down below 10 and I take a bit of prednisone and they come back up the next week. I can't answer any other questions, good luck in finding your answers.
01 Dec 2021 15:55
  • mala_malina
  • mala_malina
Hi there,

Our ITP journey began 2 months ago. About 4 weeks after the first Covid vaccination (Moderna) my husband developed ITP symptoms. It started with petechiae on the legs, which a few days later spread over his whole body. As he got blood blisters in his mouth, we rushed to a hematologist. The result of the blood analysis was quite shocking: his patelet count was 0.

He received platelet transfusion immediately, but the next day his patelet count was only at 6. Then the doctor refered him to the hospital. He stayed there for almost 2 weeks and received 2 dexamethasone pulses (1 in 1 week) and high-dose intravenous immunoglobulin, but his counts never rose above 39. They did a bone marrow biopsy but found nothing. They also noticed that his spleen was enlarged (15cm).

A few days after he was discharged from the hospital, his patelet count crashed again to 10. The hematologist gave him immunoglobulin plus my husband startet using eltrombopag (revolade/promacta) 50mg and his count increased a bit. The following week his patelet count crashed again to 7, so he received another dose of immunglobulin, which rose his patelet count to 54. But his spleen has grown larger (16,5cm) and the doctor already talked about removing it.

One week after his patelet count was at 54 it crashed to 5. The hematologist send him to the hospital again, where they gave him immunoglobulin and took a bigger piece of bone marrow. But they did not find anything in the second bone marrow biopsy either. In that days eltrombopag was increased to 75mg.

After that his counts were pretty good for four weeks (around 69 – 105), but now he is at 10 again. He is already receiving immunoglobulin for 2 days, but this time his counts aren’t responding. The doctor is about to send him to hospital a third time because his count is so low, but he hasn't developed any symptoms yet. So we don't think that's necessary. Did you stay at home with counts that low? 

Has anyone ever experienced that Ivig suddenly aren’t working anymore?And can anybody tell if a enlarged spleen can shrink again? We don’t think that one should remove the spleen 2 months after the ITP diagnosis, like the doctor said.I have read that people experienced similar patelet count drops after the first Covid vaccination, but was the effect only temporary? If so, how long did it take?Is it okay for the platelet count to drop back to 10 even though 75mg eltrombopag has been taken for several weeks or is it just not working? Has anyone of you switched from eltrombopag to Nplate and it got better?

As you can see we have many questions and hope for your answers and your experiences.
Thank you.
01 Dec 2021 09:25
  • CindyL
  • CindyL
Aw, sorry to hear of your troubles, mrsb! Hopefully the Pred won't cause you any or many issues.
01 Dec 2021 05:04
  • mrsb04
  • mrsb04
So  in June after reluctantly  going  back on Romiplostim  following my loss of response to Eltrombopag (Promacta/Revolade) I have given it up as a bad job.
Experiencing increasing bone, joints and muscle pain  over the last 6 weeks and multiple bruises. 5 weeks  ago I had the most horrendous posterior nosebleed ever.... 35 minutes to stop the bleeding. My count the previous week was 111. 
I took a  4 day Pred  bolus of 25mg/15mg/10mg/5mg on top of regular 2mg/day that brought my count to 68. A week later it was 22, and the following week it was 37. Now it is 15. 
I am not prepared to suffer side effects of a medication that is not doing its job properly so that is the end of TPORAs for me. 6  years pushing my bone marrow is enough for me. 
I have opted to go for 5mg Pred a day for a month to see what that does. It shouldn't reduce my immune system too much at that dose but might just keep my count above 30, where upon I will be asymptomatic. 
I am being worked up for the PRN1008 trail with the aim of starting it early on next year. That is assuming I pass all the work up tests. 
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