A couple of those vaccines sound like ones I was told to get before my splenectomy.  Has this been mentioned to you, Paige?  I wound up getting them after surgery, though.
I must be old, I don't remember getting Hep B vac in school!  I remember being tested for TB, though.

I was getting frustrated that day trying to check a profile. 
I'm sitting here looking out my living room window watching one of the does that are in the area.  We have 5 does and one (at least) buck.  I've even named them all!  Steven thinks I'm nuts!  People are leaving food out for them now too.

A a retired health professional with severe refractory ITP  my advice is take any vaccination you are offered.
Vaccines are around for a reason; they combat illness, keep you out of ITU and can save you from death.
In the grand scheme of things ITP is a minor inconvenience.

  

Hi, yes so it was mentioned to me today now I am being considered for splenectomy as the other courses of treatment have been almost unsuccessful. Still going to have to wait till Monday now for my hematologist.  Maybe a light at the tunnel. 

Thanks for the input

Oh yes, I am very pro vaccine. I just wasn't sure at first why they were being offered to me.  We are now aware that I am being considered for a splenectomy. 

Waiting on my hematologist on Monday to confirm. 

Thank you. 

PYager1313  
Please do not be bullied by medics into treatments. Your treatment should be a two way process with you making informed decisions.
Which guidelines are your medics following?   Not the current ones if they are  considering anything as drastic as a Splenectomy at this early stage.   I have had ITP for over 8 years and still have my spleen. It is a perfectly healthy organ doing its job properly I have no intention in parting with it. The side effects outweigh the benefits in my opinion. 

Below are  links to the current International consensus on ITP management.  The  first 2  links are to videos that outline current guidelines  www.youtube.com/watch?v=xxCtmmIiO34    www.youtube.com/watch?v=lcC329pd-fY
(Revolade is UK name  for Promacta)
The guidelines are a  lengthy document   but I strongly recommend you read it. It is full of information regarding different treatments and investigations to be performed prior to considering splenectomy...which incidentally it  suggests it should not be performed within the first year. 
ashpublications.org/bloodadvances/article/3/22/3780/428877/Updated-international-consensus-report-on-the 

It sounds like the doctors aren't giving any of the treatments they're throwing at you time to work.  I waited 2 years after diagnosis to have my splenectomy.  It had been mentioned to me once by my doc, but since he couldn't guarantee it would work, we said no.  My husband and I made the decision together to go for it even knowing the odds were it wouldn't work.  It did for about a month.
I'm with mrsb.  Read the links she shared,  Don't be pushed into something you don't want.

Hello Paige. I was in the same boat in July 2020. Perfectly healthy, 54 years old having never been a patient in a hospital except for my birth and having my tonsils removed back in the 70's  Out of the blue I started bruising everywhere. The bruising increased by the day and I felt weaker and more fatigued each day. Finally after someone at work told me I look really bad and that I had better get things checked out I did. When the CBC result came in I was told to go to the emergency room immediately because my platelet levels were at 2. This was July 2020. I didnt know what that meant but I feared the worst. I was in hospital for 6 days. Multiple IVIG's, a platelet transfusion, and high dose prednisone got my levels up to around 40. I was released but within a week the level was back down to 3. This time I was experience gum bleeding and had developed horrible looking black blood blisters in my mouth. I was put in ICU for 4 days. It was then decided to embark upon a treatment of 4 Rituximab weekly  infusions as well as a weekly Nplate injection. 

I did the 4 Ritux infusions and continued with the weekly Nplate infusions until November 2020(4 months) It took until around that November for my platelets to reach and maintain a level over 100. By Feb 2021 my levels were over 200 and have remained there ever since. Thats 2 years. 

Every case is different. Different physicians will embark upon different treatments and therapies based on their experience and the individual being treated. I suppose I was fortunate in that the treatment chosen for me eventually worked exceptionally well. There is hope. The first 6 months after diagnosis, especially the first couple of months, were horrible. Nothing worse than seeing your platelet level rise enough to be released from hospital and thinking(without yet fully understanding ITP) well I guess thats over only to have your platelet level crater and have to go back in. It was very discouraging and depressing. In the end, knowing what I know now it was no where near as serious as I feared at the time(platelet levels near zero are serious of course but I was in that range for only a couple of weeks) and was more of an inconvenience.

Its going to be difficult for you having to deal with the roller coaster CBC results. After my second Ritux infusion my level reached around 110. I was ecstatic. I thought well Im over this ITP stuff. A week later the CBC before my third Ritux infusion had my level back down at 30. I was devastated. Luckily my level continued increasing after that setback but I kept waiting and expecting the platelet levels to crater for the next six months or so but thankfully they never did. Honestly, at the one year mark I no longer thought much about it. Now, almost two and a half years later its like it never even happened. I visit this forum usually, when I remember, every 6 months or so just to see whats up.  

To sum it up. Being confused, worried, and even a bit distressed and even depressed at this stage is perfectly normal. In time however you will find yourself less confused, worried and distressed by the day until you reach the point I am at now. It will be like it never even happened. Take care

Update:

We got news today that the splenectomy may be off the table for now, as they want to wait one more week on the Cellcept treatment. Also the only surgeon available in my province is a 6 week wait window.  My Hematologist team has also brought up Rituximab treatment if after this week the Cellcept still shows no response.  We are just hoping that my body shows some response this week, counts go up that I can be transferred closer to home and wait a surgery date or go home and manage outpatient until then.  

Thank you for all the support and information.  

Paige Y.
Saskatchewan, Canada 

Thank you

I really appreciate the reply and kindness.  It has been a very big, long Rollercoaster of emotion.  I'm still trusting i am in the right place to get better, getting the right treatments and just taking things day by day. 

Hi Paige,

Sorry you are going through this.  Typically your medical team will test for viral infections such as Hep-C and HIV to eliminate those as primary causes for low platelets.  In addition, it might be a good idea to get tested for H. Pylori bacteria which is associated with low platelets as well.  ITP is diagnosed based on elimination of these as well as other potential causes. In my case, I was tested for all of the above in addition to having a bone marrow biopsy to rule out bone marrow disorders.  These all came back negative/normal for me.
Regarding splenectomy, it seems odd they would recommend this so soon for a newly diagnosed patient. It's only been about 6 weeks since your diagnosis.  If a short course of steroids (prednisone or dexamethasone) don't get your counts stable above 30-50k, the usual 2nd line therapies are one of the TPO-RA meds, Promacta(eltrombopag), NPlate(romiplostim), Doptelet(avatrombopag), which stimulate production of platelets. Another 2nd line therapy is Tavalisse(Fostamatinib) which aims to block the destruction of platelets. I'm currently taking 25mg of Promacta which after only 9 days raised my count from 15k to 138k, which is remarkable.  However, I've learned to temper my expectations with this disorder.  More time and labs will tell if my counts can stabilize.  50K or higher is acceptable to me, I just need to determine with my doc if/when a reduction in med dose/frequency is warranted. Still too early to tell.  Splenectomy is irreversible and makes you more susceptible to infections.  I would recommend asking your docs about TPO-RAs.  Best of luck and know you're not alone in this.  

Derek

This was some roller coaster ride. I have very low base levels. With no treatment they can go as low as 2 or even 1. I then have a lot of petechiae and the lower the levels the higher up my body they are. At 4 I get blood blisters in my mouth. But I was always good even with low levels.

I was on vacation and had low levels. But this time I also got like some nose bleeding. Not actual bleeding more color when sneezing into a tissue. I was on nPlate but somehow this time levels got really low. 

I was not worried, been there plenty of time. Just this time the petechiae were really severe. In any case I was relaxed about things.

Then from one moment to the next I lost my ability to speak. I knew instantly that that could only be a brain bleed. Recored the whole incidence while driving myself to the nearest hospital 30 minutes away. Regained my speech 5 minutes into the drive. Checked myself into ER. TC at 2. They give me a platelet infusion and nPlate dosage. Fly me to a near Near ICU. One more speech loss attack next day. 

I had a little bit of blood visible under my skull. More medication and after 36 hours out the door. 

Flew back to Europe 3 days later. Still low levels. They put me on 40mg DEX and another platelet transfusion. Levels recover. 

From there my levels almost normalised. I had full months where I did not take anything. No nPlate, yet TC where between 250 and 500. Almost felt like I was in remission. Then after 6 months of nPlate maybe every 3 weeks or so it all came crashing down again.

Now I asked my haematologist if we could do the same treatment again. Like DEX 4 days at 40mg and a platelet transfusion maybe twice. He said it is not a proven method and therefore he can not support that.

It felt so good to have this hope of remission and it was actually totally different from before. But he refuses to repeat the treatment that actually changed things.

Any ideas what I could do? At the moment on 5mg Spiricort a day and 250 mcg nPlate per week and Tc between 50 and 85. I check daily. 

Paige of course you are on a roller coaster of emotion - you were diagnosed in December 2022 and it is now towards the end of January 2023 and you have been slammed with 4-5 treatments in a very short time!   Were any treatments given time to see if they would work?    When I was diagnosed in 1989 with a count of 11k and dropping I had only 2 choices, splenectomy or prednisone and I chose prednisone & still have my spleen.    Remember that Rituximab takes a while to work if it is going to work.   Be sure you read up on all treatments and splenectomy (that is not a guarantee or a cure).

The best advice is to read read read and know what your options are and to remember it is your body.
Good luck!

ImPatient wrote:

Does Famotidine also have something to do with your ITP? It's an allergy medicine?

I am not sure, since Famotidine has been used when I was taking  Prednisolone .  However, my doctor didn't take that out even I wasn't required to take  Prednisolone .

When taking prednisone as us ITPers do we should be taking something to protect our stomach - famotidine would do that.  I don't know if it is needed when taking the others.   If you want you could ask your doctor if it is still needed.   

I too am with mrsb.  You were diagnosed in December and had so many treatments thrown at you in a very short time and now a splenectomy is being considered by your team - you need to read and read and read, about all the treatments and about splenectomy, splenectomy is not a cure it is a maybe, and as far as I know there isn't a cure for ITP.   The only reason I was offered [not told to have] a splenectomy is because when I was diagnosed in 1989 there was only splenectomy & prednisone for treatments, I chose prednisone because no doctor could assure me splenectomy was a cure.   With ITP the body is making antibodies that attach to the platelets, once these antibodies are detected in the the places that cleanse the blood those platelets with the antibodies attached are flagged as not normal and are destroyed, that's how it was explained to me - the spleen is not the only blood cleansing location in the body, spleen removed the platelets can still be destroyed elsewhere.  As mrsb said, the spleen is doing its job. 

The above being said - it is your body and you should do what you feel is best for you!!   Keep us posted.

It is frustrating when you can't get to what you want!
Oh Cindy how fortunate you are to have the does in the your area and you can watch them and name them (she's not nuts Steven, just a little goofy - ha ha    I'd name them too though).      In the open area behind our house we see some deer every now and then, so beautiful and majestic.

Hi, 

So I have decided to go ahead with the splenectomy.  My hematologist and internal medicine team have both been trying as many treatments as we could and I am still not responding to anything. In Canada the next step is surgery before they offer anything experimental or expensive, at least here in Saskatchewan. So we are just awaiting a date next week for my surgery. They believe my ITP is refractory and with the removal I will have normal counts again.  I will just then be living with asplania and having to watch my immune system more carefully. Myself and my family definitely weighed the pros and cons and to be honest I just want to be able to leave the hospital. My life has been on hold, I miss my son and my husband. I will post an update once my surgery is done and what my counts respond like. We really do hope this is the answer and if it's not then there are other treatments we can have access too once my spleen is removed. 
Thank you for all the care and concern and information. 

Paige 

You mentioned you were going back on prednisone a week ago - did that do anything?

PYager
It is absolutely impossible to call your ITP refractory after such  short period of time, you haven't tried sufficient treatments, let alone given the ones you  have tried a chance to work..some take a couple of months to start working.
You haven't even mentioned TPORAs so I'm assuming they haven't been offered. 

If you haven't been tested for Hpylori make sure you do and get the results before you decide to part with your spleen. If you are positive it needs treating and hopefully your ITP will improve and you keep your spleen.

Sad to see some doctors are blindly carrying  on doing what they have always done rather than  practicing  evidence based medicine. 
I sincerely hope that your medics have not promised you a splenectomy will work along with explaining  the downsides of not having a spleen.
Plus you need to know what your management plan will be if splenectomy fails. Is that when TPORAs will be mentioned I wonder?
 

We've tried another high does of dexamethasone and prednisone along with an immunosuppressive.  I trust my physicians in this treatment plan.  They are very certain my ITP was caused by the c 19 Vax.  After being on all these medications for 2 months and In hospital for 3 weeks the surgery and potential of it working is more of a positive outcome for me than sitting and waiting. 

I have been tested for H Pylori and it was negative.  In Canada, in my province in order to have access to other types of treatment and drugs there's protocols they have to follow.  One of them is the splenectomy before I'd gain access to say Rituximab.  We were offered another drug but at this point in my care we weighed the risks and surgery and life without a spleen and the potential of being over this hurdle in life won that debate.  My hematologist is one of the best in my country here so I am going to trust his recommendations and his belief that my ITP is refractory and will be hopefully controlled after this surgery is complete.  I chose not to want to try any more medications. I just want my life back and to not be in a hospital anymore. My counts haven't moved above 5 in over 2 weeks with all these different meds.  Thank you for the care and concern. 

Paige Y

I was just cranky that day!  But it does get frustrating.
They really are!  I could watch them all day.  We've had pretty crappy weather the last couple of days so I don't think they've been out and about.Even my sister shook her head at me when I told her I had them named.  I can really only identify 2 of the does.  They're the biggest of the five, and one of them is usually alone.  Right now it's nice out, so I'm hoping they show up.  It's supposed to get cloudy and cold later this afternoon, so no walk today or tomorrow. (Cold and wet tomorrow)
Many years ago when my family had CB radios, my handle was Dopey.  We had one in the house and the other one was on the boat.

I really hope your splenectomy works for you, Paige. I get how you just want your life back.  That's why I agreed (2 years after diagnosis) I brought up splenectomy to my doctor.  I wanted off the Prednisone!  It worked for a month or two, then my counts dropped again.  Back on the pred for the next 5 years until I did Rituxan.  My doc is the top in his field here too.
Please do keep us posted on how you are doing.

So glad I don't live in Canada. Being forced to have an operation that may not work at all is an absolutely appalling state of affairs. Cannot understand why doctors don't do something about it . 

My platelet count on 27th January taking daily 10mg Pred and 25mg Eltrombopag was 12. 
Fostamatinib on the NHS has been available in Scotland for 2 years and is now, at last, available in England (and I presume Wales).  
Alongside 5m Pred/day it kept me reasonably  stable during the trial 7 years ago so here's hoping it does so again. Have started on 100mg twice daily. 
Who knows one day I might get off Pred altogether.

I can't speak about the other Provinces, but here in mine (New Brunswick), it was totally my decision.   At least in my city.  It was suggested, but like you said, mrsb, there was no proof it would work, so I said no.

Was your count in the double digits, mrsb?
I get confused by all the different names for the treatments.  I wish all the countries would agree on one name!
I do hope you get off the pred permanently!

CindyL
Yes count was 12. Sorry I got distracted by the dog having a hissy fit about a pigeon being in his garden.
I have edited original post as also failed to state  I have actually  started Fostamatinib!!!! 
I agree with the confusion. The problem is caused by brand names chosen by the manufacturers. All drugs have a generic name which is generally the same world wide, e.g. Promacta in USA, Revolade in UK generic name for both is Eltrombopag. 
 

Dopey huh?  Oh my!!

When we had a 20 gallon fish tank many many years ago our son wanted to name each of the fish - now that was something!

We just had an arctic front and it lasted way too long!  I'm not fond of temperatures below 0 !!

This site just pissed me off - was down for 3-4 days.