TOPIC:

Hi all, 

I am back with more discussion. Still waiting in hospital with platelets at 6, going back on prednisone tomorrow and now it's been recommended I receive a series of vaccines.  Hep B, ACT HIB, and Meningococcal AC and B.  I was advised by my first hematologist that I should be wary of any vaccination in future because of my "twitchy" immune system and now to be told you have to get all these shots it's just a little bit unsure feeling.  Wondering if anyone else has had good or bad or any information on why they would be recommending so many at once. I was also tested for all the things these are vaccines are for and came back negative. 

Thanks in advance for the help.

Paige Y. 
Saskatchewan, Canada 

Interesting - when we lived in Hong Kong my US hematologist said I should not get the Hep B vaccines.  So I did not but the rest of my family did.    Who told you to get those vaccines?

  

So here in Canada we receive Hep B vaccinations in school, but as far as I was aware I was all up to date. I have a 2 year old so I did look into all my vaccinations while pregnant.  These ones were all recommended by the internal medicine team that's working alongside hematologists on my case. But it just seems so strange to me that one hematologist says be wary and then others are wanting me to get 4 at one time.  

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.

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.

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.

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 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 . 

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.