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  • Margaret k
18 Jan 2023 12:33
Replied by Margaret k on topic (17 May 2024) My platelet count was 171
I had no adverse effects from the shingrix  vaccine either.
  • Margaret k
18 Jan 2023 12:48
Replied by Margaret k on topic platelets less then 10
Sorry to near about your  dip. I was at 1 a few times in the first 3 years of itp. I was usually in hospital for a day or two but went home when they realised that transfusions , steroids and ivig didnt work for me. I was saved  by 75mg promacta 7x per week which  very gradually  raised my count but am glad to say 7 years later i am now stable on 25 gms 4x week.
  • Smullen44
18 Jan 2023 19:06
Replied by Smullen44 on topic Flying not recommended with low platelets
Thanks so much for replying to my question.  Your response is very helpful.  Besides ITP I also have a genetic blood-clotting disease which makes me lean towards avoiding plane trips.  Like you, we are considering taking the train to our destinations.
  • midwest6708
19 Jan 2023 11:04
Replied by midwest6708 on topic Side effects Promacta be Rituxan
I take Nplate, which works by the same mechanisms as Promacta. Five years ago, I took my doctor's recommendation to try Rituxan and had a terrible reaction to it that hospitalized me for six days and left me with a permanent balance disorder.  Not saying there's any high probability that would happen to you, but you can understand why my first choice would be one of the platelet booster drugs vs. one that destroys otherwise beneficial blood components. 

By now you’ve seen your doctor.  Have you made your choice? 
  • CindyL
20 Jan 2023 10:09
Replied by CindyL on topic This site is pissing me off!
Yay, it's fixed!  Ignore previous post!
  • mrsb04
20 Jan 2023 13:58
Replied by mrsb04 on topic Side effects Promacta be Rituxan
Promacta has dietary restrictions but these can be got round fairly easily.
It can take a while to work.
Side effects I experienced in no particular order, crazy dreams,  poor sleep pattern, coughing, sneezing, aches and pains all over, bowels on overtime up to 7 times day. All dose related; the higher the dose the worse the side effects. 
  • PYager1313
20 Jan 2023 23:41
Vaccines was created by PYager1313
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 
  • MelA
20 Jan 2023 23:55 - 20 Jan 2023 23:55
Replied by MelA on topic Vaccines
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?

  
  • MelA
20 Jan 2023 23:56
Replied by MelA on topic This site is pissing me off!
Oh good Cindy, glad it is fixed!   
  • PYager1313
21 Jan 2023 00:20
Replied by PYager1313 on topic 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.  
  • CindyL
21 Jan 2023 10:32
Replied by CindyL on topic Vaccines
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.
  • CindyL
21 Jan 2023 10:36
Replied by CindyL on topic This site is pissing me off!
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.
  • mrsb04
21 Jan 2023 14:46 - 21 Jan 2023 14:49
Replied by mrsb04 on topic Vaccines
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.

  
  • PYager1313
21 Jan 2023 16:52
Replied by PYager1313 on topic Vaccines
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
  • PYager1313
21 Jan 2023 16:53
Replied by PYager1313 on topic Vaccines
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. 
  • mrsb04
22 Jan 2023 02:41 - 22 Jan 2023 02:50
Replied by mrsb04 on topic Vaccines
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 
  • CindyL
22 Jan 2023 09:47
Replied by CindyL on topic Vaccines
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.
  • gozorakgogo
23 Jan 2023 01:39 - 23 Jan 2023 01:46
Replied by gozorakgogo on topic Newly diagnosed isolated & frustrated
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
  • PYager1313
23 Jan 2023 20:47
Replied by PYager1313 on topic Newly diagnosed isolated & frustrated
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 
  • PYager1313
23 Jan 2023 20:49
Replied by PYager1313 on topic Newly diagnosed isolated & frustrated
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. 
  • dmurashi09
24 Jan 2023 09:20 - 24 Jan 2023 09:20
Replied by dmurashi09 on topic Newly diagnosed isolated & frustrated
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
  • Toby-Wan-Kenoby
24 Jan 2023 14:41
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. 
  • MelA
25 Jan 2023 00:03
Replied by MelA on topic Newly diagnosed isolated & frustrated
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!
  • drbean7218
25 Jan 2023 03:49
Replied by drbean7218 on topic (17 May 2024) My platelet count was 171

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 .
  • MelA
25 Jan 2023 09:55
Replied by MelA on topic (17 May 2024) My platelet count was 171
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.   
  • MelA
28 Jan 2023 00:20
Replied by MelA on topic Vaccines
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.
  • MelA
28 Jan 2023 00:27
Replied by MelA on topic This site is pissing me off!
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.
  • PYager1313
28 Jan 2023 00:34
Replied by PYager1313 on topic Vaccines
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 
  • MelA
28 Jan 2023 00:39
Replied by MelA on topic Vaccines
You mentioned you were going back on prednisone a week ago - did that do anything?
  • mrsb04
28 Jan 2023 02:33 - 28 Jan 2023 02:55
Replied by mrsb04 on topic Vaccines
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?
 
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