Newly diagnosed

Hi
I'm on week 3 of life after learning I have ITP. I'm still reeling and struggling with a course of action. The Prednisone did not keep my numbers up and after struggling with side effects (insomnia, new born and three other kids makes it hard to cope) my Hemotologist is weaning me off. His next suggestion was to remove my spleen. Now that seems a bit hasty to me.
I'm hoping to advocate for an immunoglobulin transfusion to quickly get my numbers up and then have some time to explore my options.
What is everyone's experience with treatment and pushing for less "severe" medication.
I'm just not the kind of person who uses allopathic medication and I can honestly say the strongest medication I have ever taken was Acetophetamine and that has only been and handful of times in my 30 years of life. The thought of being medicated for the rest of my life is quite upsetting and overwhelming.
Also, has anyone found success in working with a Naturopath along side their Hemotologist?

Hi Stasequill!

Congrats on the new baby. I can't imagine being on lots of Prednisone with a newborn and three other kids to manage! I am glad to hear that you will be weaning off the steroids, I'm in the process of doing that myself. I've had ITP most of my life, but hadn't taken significant steroids since my last pregnancy (and my youngest is now 9, so that was a while ago!).

This time around the side effects are killing me. I'm going to be looking into other treatment options moving forward when I see my hematologist on Tuesday, but from what I'm learning here (I'm new to the discussion group) there are lots of things to try. I would definitely not let them take out your spleen so quickly. If you have a newborn I would think that your body is still not back to any kind of stable state with regards to platelets. Having a baby does all kinds of things to a body so I would surely want to buy time with your hematologist to see how your counts do as you return to normal after the delivery. Maybe they'll just go up to a safer level on their own as you adjust.

What kinds of counts are you getting? Are you having lots of symptoms (bleeding, mouth sores, etc.)? Since you've only been diagnosed in the last three weeks you are in the very early stages! This group has so much knowledge and I'm sure those in the know will have some great advice for you going forward. My only advice is to not freak out about the counts and just focus on the symptoms. And enjoy your kids and new baby!

Stasequill my 1st hematologist told me she had never had a patient go into remission with IVIg - my new hematologist told me she does not like sudden increases in a count as that can be dangerous. That's 26 1/2 years between those 2 hematologists

You didn't mention your count - what is it? Most of us old-timers have realized we want to treat the symptoms not the number, and we want a safe count not necessarily one in the normal range. I'll be honest, I don't like when my count gets close to or below 60k - this past Wednesday it was at 69k.

In 1989 when I was diagnosed the only treatment options given me were prednisone or splenectomy - and this is what your hematologist is suggesting to you? There are many other treatments out there now, please read the treatment section here so you are armed with knowledge pdsa.org/treatments.html

Congrats on the new baby!

Thank you for the loving response. Prior to this birth I would have considered myself extremely healthy. The surprise ITP diagnosis and really put a kink in my life.

When I learned I had ITP my counts were down to 5, after two weeks of 70mg prednisone they jumped up to 40, but as I started tapering they dropped down to 15 at my last blood test on the 24th. I suspect they are lower now as my gums and nose have started to bleed again and the random bruising is popping up again.
My Hemotologist said we are aiming for my numbers to be in the 30 count but is not certain because this is all so new.
I struggle a bit because I'm still building a relationship with the doc and feel like he is dumbing everything down or just giving me the Coles notes of what my choices might be.
For now I have vetoed splenectomy. Since we are still just working to keep my blood level out of critical and stabilize it I was hoping that I IvIf would be a choice just so we aren't working on day to day basis. From my research it's my understanding that some people see 4-6 weeks of "good" counts after this treatment, am I correct.
I think that because I just had s baby that if I could just have some time for my body to heal that we might not have to work from a critical platelet count stand point. I'm also a bit anxious about breastfeeding and co-sleeping while medicating myself. I completely understand that o have to take care of my health but when my doc kind of blows off that fact that I can't sleep (thanks prednisone) and simply suggest I put the baby in a crib in a different room so I am take a sleeping pill and sleep all night I feel like I am fighting two fights.
Also, is there's time else here in Canada, or even better Calgary, that is dealing with the same? My limited midnight google searches have not been fruitful in finding a clinic or centre that might specialize in ITP.

Stase
We are here to help. The site has great information about treatment options. I am 51 and was diagnosed almost exactly a year ago. My doctor also did the prednisone and said if it didn't work I should have my spleen removed. I still have my spleen and a new doctor. IVIG only helped me for about 2 days but everyone is different. I was very responsive to prednisone, but when I tapered so did the platelets. I am on promacta now. I started in March (I think). I never took any medications either and work out every day. I was shocked and depressed by having a diagnosis. I have no side effects from the promacta and think of it like some one on blood pressure medication. I have my life back. I tried Rituxan and a short trial of NPlate. I wish they had just done promacta from day one. Six months of prednisone and I wanted to kill myself! Many people go into remission from promacta and nplate. I am down to 12.5 mg 5 days a week from 50 mg every day.
Read everything you can. You will probably know more then any doctor you see. I think ITP is just so rare that few doctors see enough to be experts. Just my opinion.

Stase
I am 18 months with ITP. There are many treatments available . I'm on N plate after trying various options including a trial of a new drug called Fostamatinib which unfortunately for me was not a success.
I'm not parting with my spleen.

Have a look at this it's written for nurses but very understandable

www.ebmt.org/Contents/Resources/Library/Resourcesfornurses/Documents/ITP%20Handbook.PDF

Welcome, Stasequill! Are you in Alberta? Christine is in Alberta, I think, maybe Calgary. Hopefully she'll chime in and recommend a clinic. I'm in NB.

Hello there. I'm happy that you found us. Congratulations on the birth of your baby!

First, most people who have ITP are not on medication for life. I've been here since 1998 and have seen many people come and go, and maybe only a handful have had to use constant medications. That is very rare and only the most stubborn cases have to go that far. Most achieve remission or are able to maintain safe counts without constant medication. Getting to that point can take time though.

You have a good attitude and you seem to have a good grasp on the concept of 'safe' counts vs 'normal' counts. That is very important to consider while making treatment decisions. Also, symptoms matter more than actual counts. I'm not all that crazy about your doctor's ideas. There are some doctors who really don't know a whole lot about ITP and if you feel that your doctor is one of them, a second opinion might be a good idea. Splenectomies are rarely performed these days and protocol states that if it's considered, the patient should wait at least a year after diagnosis. They do not always work or can fail weeks, months or years later.

You are doing your homework and that is a great start! You said this was a 'kink' and that is a good way to look at it. ITP can be a huge kink at first, but in time becomes just a small wrinkle. Prednisone is horrible, but it will get better. The light at the end of the tunnel is there. Keep your eye on that.

Hi Cindy - how are you?
Stasequil: I'm chiming in. Yes I live in Calgary and don't know of any clinic that specialises in ITP, but my hema is based at the Peter Lougheed Centre in NE Calgary. I am very happy with him - he also seems to have a very good handle on ITP and is up to date on most treatments. Don't hesitate to contact for more info if you need it.
I have ITP for 35 years and I am finding more and more people are being diagnosed. When they first "discovered" with me I had students and all sorts of docs "looking" at me - hilarious now I look back because it was my blood they were really interested in!

Hey, Christine, I'm good! Enjoying the mild temps we're having.

I figured you'd chime in. Hopefully you'll be able to help Stasequil.

Hi Christine! Are you see Dr Slaby?

Do you mean Dr Blahey? He is in the specialty clinic at the PLC - I see Dr Lategan.

Stase,

It seems like you have found a local expert for recommendations, which is great. Getting the right doctor is more than half the battle.

On the breastfeeding/co-sleeping front, I just wanted encourage you to keep doing what you know is best for your baby. Once the medical establishment gets a hold of you, it's easy for them to make you doubt your judgment or make you feel that your choices are inconveniencing their work and treatment. Stay the course and don't let them shake your confidence in what you want to do for your baby.

All three of my children ended up in the NICU after birth. Because of my ITP, all the babies ended up with my antibodies in them and decreased platelets at the time of delivery. It resolved in all of them after a few weeks, but I had trouble breaking them out of "NICU jail" when so many people didn't understand ITP or the issues involved. I was so stubborn about nursing that I basically camped out in the NICU and drove the nurses there crazy. I'm sure everyone would have loved the convenience if I had been willing to go with bottles so that they could fill in their charts nicely with ounces consumed, but I had to fight to do what was best for my kids, not the hospital.

Just wanted to say stick to your guns and hopefully your counts will stabilize soon!

You're a feisty one, Mom! Keep it up!

I echo those sentiments, My son (now 33yrs) was born with the antibodies and was in NICU for ten days until they cleared his system. In those days they didn't know what ITP was and were fussing. My family doctor st the time told them to listen to me as I probably knew more about the disorder than they did!! More things are known now - just an amusing anecdote to momto3boys post.

I see Dr Slaby, who works with Blahey.

I'd love to connect to get some direction. Are you interested in meeting for coffee?