mrsb04,
Thanks for the info regarding Promacta.  Was the osteoporosis preexisting or a result of steroids?  I know Promacta has a chelating effect so taking D3/Calcium supplementation would be challenging. From what I read, no food with calcium 2 hours before or 4 hours after taking the med.  I'm sorry the PRN1008 (Rilzabrutinib?) trail didn't work.  You've tried therapies that address both sides of the ITP platelet life cycle - production and destruction and it seems the production meds (Promacta, Nplate) worked for awhile but then lost efficacy while the destruction blocker (PRN1008) had no effect.  Does the 10mg of prednisone raise your counts above single digits?  I appreciate you sharing your ITP experience, It's has very informative and helpful.

P.S.  Beautiful grey tabby.  We have one, also. Wonderful cat.

Derek
The first time I took Promacta it lasted about 4 years before I lost response to it. By which time I had developed an iron deficiency which according to the pharmacist was caused by Promacta. The second time I gave up after 6 months as it didn't really work and upset my digestive system.

It is a pain of a med for someone who needs a high calcium diet for osteoporosis.

At the moment I am on Pred 10mg a day,  having just failed the PRN 1008 trial with a count in single figures.
I am hoping to start Avatrombopag in the near future. 

Just tested positive for H. Pylori. Has anyone been through these treatments to resolve ITP?

 Thank you.

 According to the National Academy of Medicine, formerly known as the Institute of Medicine, 4,000 IU is the safe upper level of daily vitamin D intake. However, doses up to 10,000 IU have not been shown to cause toxicity in healthy individuals 

Mcafiero, yeah it’s been refreshing to hear other doctors perspective on things bs just what the Kaiser Dr’s have to say. Unfortunately it seems like the goal in most is to push heavy pharmaceuticals. If Yu have any questions feel free to reach out. My number is 951-746-9484.
Mel, yes you are correct. That’s why I’m seeing a Dr for it and he’s monitoring labs. They will also usually prescribe K2 with D3 which helps it and calcium go where it’s needed. D3 is so very important in our immune function it seems and most people are deficient in it due to not being in the Sun enough in our modern society or through having it depleted in our system by refined sugars. 

mrsb04,

Thanks for your reply.  Did Promacta achieve your minimum desired platelet count? Were the side effects, if any, tolerable?  Also, are you currently taking any meds or managing without? 

Derek

Derek. 
I have taken Promacta, it took a while to kick in…others on here have said the same

www.coimbraprotocol.com
"The Coimbra Protocol relies on doses of vitamin D that range from 40000 to 200000 IU daily..."

Before taking massive doses of anything you should be tested to see if you need it!!  Just to jump in and start taking massive doses can be detrimental to ones health!!   I had to take large doses of Vitamin D because blood work showed I was low in D - that's when you take it!  Can't recall the amount I took or for how long but it was a high dose only 1 time a week!  I now take 2000iu a day as instructed by the doctor.   There is such a thing as vitamin D toxicity.  

I'm for trying new things, but only if needed.   
 

richellefleischer, congrats on being discharged.  Convalescing in the hospital with a new condition that you know little about can be scary.  The ER and subsequent hospital admission seems like such a confused mess. Multiple nurses, PAs, hospitalists, and nothing moves quickly. So easy for important information to get missed during patient handoffs. Many on this forum, including me, have been down the this path. Reading other's posts has helped me think about treatment options and that what works for one may not work another.  

The past 6 weeks have been a real battle for me. It began when I noticed the purpura in my mouth, some on my arms, neck, and back.  I knew my platelets were low and went to the ER. Count was 2K.  5 days of Ivig and dexamethasone, counts got up to 232K. The day after discharge I had a severe reaction with intense pain in my back and around my ribs, splitting headache. I thought I was dying. Back to the ER and another night in the hospital. First time I peed in the ER is was the color of coffee. Kidney tests were normal thankfully.  The never determined what caused the pain and blood in the urine but I believe it was the mega dose of IVIG administered at the fastest rate from day 3-5. IV fluids and some dex and began to feel better that evening. 10 days later I had a followup with my doctor, counts were back down to 22K. Started 80mg of prednisone per my doc. 2 weeks later my count was 64K. I tapered to 60mg for 4 days. Counts dropped to 47K.  This past Thursday my counts were 16K. It appears the prednisone isn't workin anymore which may be a blessing in disguise. I don't want to be on it anymore.  Told my doctor I wanted to try a TPO and suggested NPlate but I found out it isn't covered by my insurance but Promacta is so that's my next step.  I think my counts have dropped further since Thursday as just earlier today I noticed a single blood spot on the inside of my cheek. I am always looking for them now. I don't want to go back to the ER/hospital again just to repeat the same protocol that was only a temporary fix. I'd rather wait for the Promacta prescription and start down that road as soon as possible.   My target count is 50K although at this point I'd be happy with 20K I think. I am asymptomatic when counts are > 10K from what I've experienced.  I'm concerned about side effects from Promacta but I hope to start on as low a dose as possible then ramp up if needed to get to 50K.

Best wishes
Derek

Thank you! That’s exactly what has not been happening…they threw so much at me they didn’t have a clue what was working. 

That’s cool. I’m going to find a Coimbra doc. I like the sound of that. I’m taking 1000iu of vitamin D now. Not close to 5000 or 10000 but prob more than the avg person. 

Nice to meet another person into all these things that cause my friends to wonder about me. Ha ha 

I agree with you. I’ve heard that intermittent fasting can give beneficial to individuals with autoimmune. Autophagy being the goal.  I am seeing a Dr that’s registered for the Coimbra Protocol. I’m only on 5,000 IU’s of Vitamin D a day so not too much. He wants labs drawn in a couple months to see if I need to up it or not. There’s a strong link between all autoimmune disorders and an absorption issue with vitamin D. If you go to the Coimbra protocol website they have a list of Dr’s for different areas. They also don’t require you to go in person as almost everything is via Zoom. I honestly just want to try and live a healthy lifestyle where I don’t need to take strong medications and aside from what we have I believe it’s beneficial to anyone to live and eat cleaner. I’m only 33 and I’m hoping this can limit the recurrence. 

Tell me more about The Coimbra Protocol - are you doing this with the assistance of a Dr or just taking a ton of Vitamin D?

If it comes to it, for what it's worth, my second line of treatment will be promacta. My last counts after a week of 5mg prednisone were 180 so I was right in the normal range. I'll be interested to see what those numbers look like on Monday after being off Prednisone. If I go back down below 30 it will be promacta.

I'm with Chad, though. I've always been on a Keto diet but I think I want to start doing Whole 30 which is basically just foods that are not processed, no sugar at all, really. Also I'm doing OMAD - one meal a day.  But my OMAD is improvised because I have a multivitamin in the AM with 45g of collagen protein. Another 45 mg of collagen protein at lunch, and then my one meal in the evening which is a protein, and a natural carb like potatoes or quinoa or something.

One thing I plan on doing if my platelets normalize after being off prednisone is a keto diet for about 5 days until I get into ketosis, and then a 3 day water fast (peterattiamd.com/ama13/), just to sort of reset my system, get into a state of autophagy and then back to the OMAD Whole 30 program on a clean slate.

Also I've been taking prebiotics (fiber, basically) and probiotics as mentioned earlier in this thread.
Like Chad, I don't know what impact any of this will have on ITP but I'd be doing it regardless just because it's a healthy way to live.

No side effects that I noticed but hard to say. I definitely did not like prednisone. It’s so weird that sometimes one treatment will work but then won’t the next time. I’m just trying to eat organic and all natural while staying away from processed foods. I try not to eat much sugar. Also, sleep is very important and I’m on the Coimbra protocol right now. Taking Vitamin D3 with K2 and a few other vitamins. Not sure if it will help forever but I’m grateful for each day. 

richellefleischer
Congratulations in your escape from hospital.
I agree with midwest6708 that you change your doses very gradually for example with Promacta  same dose/new dose on alternate days for few days. 
I would also suggest only changing 1 med at a time otherwise you will not know if it is N Plate or Promacta that is working the  best. 

Great to hear!! My platelets have rebounded on Promacta. Like you, I was at 1. My rescue is IVIg that brought then back to 120 then crashed again to 31. I started Promacta and within 8 days I was back to 131 with weekly blood tests. On Monday I hope they held or went back to my normal which is 240. At that point I ween off of Promacta.  That is the only safe way to do it. I probably will go from 50 mg to 25mg. for at least a week. If there is not drop in platelets I will probably stop again like I did a year and half ago and just get monthly blood tests and look for symptons. Good luck!

I'm so glad you have your freedom again. 
From my own experience, I would urge you not to make changes in your meds too quickly.  My own counts respond wildly to even the smallest dose change.  Once you reach a safe level, stopping altogether can put you back to square one in a heartbeat.  
Stay strong!

Discharged today with count of 14. Nplate and/or Promacta are slowly raising my levels. Emotionally will recover better at home returning twice a week for testing. Thank you for your support!

This was many years ago - but when I saw the specialist at the university hospital here he told me I "would have a splenectomy".   That was at least 30 years ago and I still have my spleen.   

I'm so sorry your are still in the hospital and your count so low!!   I know nothing about Nplate or any of the new treatments - how long does it take for Nplate to kick in if it is going to work??

My understanding is that platelet transfusions don't work because as soon as those platelets enter the body they are tagged with the antibody and the blood cleaning areas in the body then "see" that and destroy them.

I've had a few hematologists over the years - my new one is fantastic, he loves blood and knows a lot about ITP.  

I sure hope you get some good news and soon!!

Still in hospital. After 5 days of platelets of 1 and daily platelet transfusions, platelets up to 6…waiting for Nplate to kick in (it worked first time). Learning patience…

I don’t feel bad, mouth sores are better, so just waiting. Go walking around hospital daily which helps kill time. 

Thank you for checking on me!

Since it's been almost 4 weeks since you posted this, the first question would be if you are still dating.  If so, and if I were in your situation, I might bring up your ITP in the context of a relevant conversation.  Maybe when she is discussing medical school or medical conditions she is studying. "Oh, btw, I have a condition that causes low platelets called ITP." Or something to that effect.  Another option is to be totally open, "I wanted you to know now rather than later that I have a condition....".  It's better for you and for her to know early if your ITP presents some kind of issue for her.  Just my two cents.  Good luck.

Hi Chad, I have thought of Rituxan (rituximab) and would be open to it. My hematologist does not like it as I have mentioned it to him before citing side effects. I believe you had a durable response after taking it if I recall.  Were there any noticeable side effects?
My current like of thinking regarding escalation of therapy is this:
1a. Prednisone/decadron - done with these (except for emergency rescue,...but I'm thinking it is losing its efficacy with me)
1b. IVIG - Only for rescue or prior to a medical procedure/surgery.  Was effective for me but generally is not considered a therapy to induce a durable response
2. TPOs - Unsure of if I will need to try more than one. Depends on how ITP responds.
3. Rituxan - seems to have a relatively high rate of durable response as you can attest to
4. Splenectomy - I will hope to avoid this given the issues it can cause. 

As mrsb04 put it, when the side effects of treatment become worse than the symptoms of the disease being treated, it's time to stop.

Have you thought about Rituxan?

update:  My counts today were back down to 16K.  They were at 47K just Friday and 64K three days prior to that.  Both those counts were when I was on 80mg of pred.  Then 4 days at 60mg starting Saturday. 40mg yesterday (Wednesday).   Back up to 60mg today based on doctor's recommendation while he puts in an order for a TPO.  Nplate not covered by my plan but Promacta and Tavalisse are.  Of the two, it appears that Promacta has a higher rate of response for most people so I'll probably go that route.  I hate reading about the side effects of all these drugs but what is the alternative when your counts are <20K?   Hoping to get started on the promacta and off of prednisone asap.

Most doctors who treat ITP are oncologists/hematologists.  I live in a major city with several large teaching university hospitals and found only one MD who practices with an ITP focus.  I found him by scouring those hospital websites to find the bios of each doctor in their systems.  I saw the only one who focuses on ITP and ultimately decided to stay with my original MD.  The ITP specialist was promoting outdated methods and insisted on a treatment I had no intention of doing.  My own MD is open-minded, listens respectfully, and treats according to what I'm comfortable with.
So just understand, that even if you find an ITP MD, it still might not get you the kind of care that's best for you.  

How are you doing?  Any improvement yet?

ITP is such a strange thing.  Everyone's situation is unique.  I was hospitalized a little over a months ago for 5 days. My count was 2K which didn't surprise me after seeing blood spots on the inside of my mouth when I woke that day.  I responded well to IVIG and decadron with my count rising to 232K after just 5 days but it didn't last long and dropped back to 22K after only 10 days. I was first diagnosed in 2011 with ITP when a routine CBC showed my counts at 6K.  3 months of steroids and my counts returned to the ~200K range. That lasted 11 years with no meds.
I'm now tapering off of prednisone after 3 weeks (last 2 counts were 64K and 47K) and told my hematologist I no longer want to take steroids so I find your experience with Ritux and Nplate interesting.  My hematologist doesn't like Ritux due to side effects. Nobody likes side effects, especially those that have to endure them, but I'm willing to take on those that come with TPO-RAs over those that come from corticosteroids. I have no symptoms, petechiae, or bruising when my counts are above ~30K (not exactly sure what level causes symptoms for me).  My plan is to only do meds if my counts drop below that count.

Thanks for sharing your story and I hope you stay in med-free remission!

Derek

I've never heard of an ITP Center of Excellence - maybe someone has and will respond.

I do know I have a wonderful hematologist/oncologist who loves blood and knows a heck of a lot about ITP.  I really do like him.

Hello everyone. I'm new to the forum but have been dealing with ITP for four years now with platelets hovering around 50 and three episodes  below 10 (and one really eye opening time it got down to 1. Wondering if anyone here knows of any ITP Centers of Excellence.  I've always read that for any serious condition you want to get care or at least an opinion from institutes and medical centers that see a lot of the cases, are involved in trials, etc.  So, Cleveland Clinic for heart disease, MD Anderson for cancer.  Is anyone aware of such centers for ITP and if so, where?  Thank you!

Any recommendations on a ITP specialist in the DC metro area?

 Thank you!