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!

No way. I also went to the ER for the coffee colored urine. I thought I had Rhabdo because it was the eve after a really hard workout with my cycling team, as I used to race competitively. Of course I was in remission at the time or I would not be on the bike. But kidney tests also came out normal. I also had extreme cramping in my abs and legs that afternoon as I was recovering from my ride. 

never learned what it was but interesting to hear it has happened to another person with ITP. 

19 days is when I decided to start tapering.  My doc wanted me on 80mg for 42 days (6 weeks) not including taper.   I feel okay, not overly wired or crazy but definitely not normal.  I sleep ok, about 6 hours.  Apetitie isn't overly crazy either.  I'm going to call my doc tomorrow and tell him I'm done with prednisone.  Other than the potential for exessive bleeding or needing a medical procedure where bleeding is a risk, I am generally asymptomatic when my counts are as low as 40-50K. No bruising, petechiae, purpura, etc.  In this case, I think observation without treatment is the best for me. If my counts drop low, I'll ask for a 2nd line therapy like one of the TPO-RA meds.   Does anyone have any thoughts on IVIG?  It works fast but is short term which is good for critically low counts but I'm not sure whether regular infusions are the way to go.  The day after I discharged from the hospital last month I had a severe reaction. Worst pain I've ever felt in my back and abdomen along with splitting headache that landed me back in the ER for a night.  First urine was the color of coffee in the ER but kidney tests came back normal.  Urine progressivley returned to normal after each passing. They never determined what the cause of the pain and dark urine was.  

Man, Canadian docs are so trigger happy with the Splenectomy “treatment”. I saw another story somewhere about a Canadian patient and that was suggested right away, too.  

Back to Derek, I didn’t realize you are being asked to be on 80mg for 19 days. That’s straight up abuse. I think my hema would have you tapering way faster with a plan to try promacta if you start to dip towards 30 in platelet count. 

How are you feeling? At 80mg and even 60 I was a straight up crazy person. 

Def worth asking about. I’d be uneasy to put myself on my own tapering plan but I appreciate people who take control on their own like you do. 

keep us posted!

I couldn't handle being on 60mgs when I was first diagnosed.  I finally asked to be reduced, so my doc put me on 30mgs.  That was bad enough. 
I did get a second opinion and that doctor backed up what my hema doc told us.  I'm not sorry I had the second opinion done, though.   The only difference between the two doctors is the second one told me he would be pushing for a splenectomy and my main one wasn't.  I had to leave my city for the second opinion because my hema here is the top doc, and the other one was the top doc in his city.

mrsb04: Thank you for sending the link to the ASH treatment guidelines. Very informative.

Derek
Good for you on tapering ...High dose Prednisolone is horrendous. . 

Below is a link to the updated guidelines. I wonder if your current haemo has actually read them. Going for a second opinion is a very good idea. 
ashpublications.org/bloodadvances/article/3/23/3829/429213

Thank you! These message boards have been incredibly helpful and definitely relieved boredom. Looks like prednisone and immunoglobulin don’t do much for me. Understand that I previously received 3 units of Nplate each time. This past Monday they started Promacta 50 mg when I was readmitted. 

I am learning a great deal. 

Thank you for all your help!

You don't say what your NPlate dose was, but it seems like it might've been reduced and the steroid could've been swiftly tapered.  Since your response to NPlate was both positive and negative (in a way), maybe it was just a matter of tweaking the dose...?  Or maybe the hyper-response was the double whammy effect of Promacta with it.  I don't know.  We're just armchair quarterbacks here. 

One thing I know for sure.  Patients who completely understand the disease and its treatments and who can partner with their doctors on decisions instead of being dictated to by them, are bound to be more successful at managing their condition.  Since you're probably bored to tears sitting in that hospital, be sure to read everything here on the PDSA site, specifically the material on the Patients and Caregivers tab on the homepage.

Hope you can spring yourself out of there VERY soon!   

Hi Mark,
Thanks for sharing your prednisone regimen and counts.  Your body's response is definitely encouraging.  I hope you go into a long remission again.  Something you mentioned resonated as I was thinking the same thing: "It makes me wonder if the short-term Dex treatment doesn't really give your antibodies a chance to "forget" or reset from thinking platelets are an invader."   I've read studies that suggest the opposite, that short pulses of dex are effective but as you know, everyone with ITP responds differently to therapy.  
Regarding prednisone-induce bone loss, I've read the majority of bone loss occurs withing the first 3 months of taking the drug. I've read it's irreversible but also read the opposite on other forums where people have taken Boniva or equivalents and have returned to normal. And I've also read some patients have normal bone scans while others show bone loss. I guess the only way to know for sure is to get a bone scan which I may do down the road a little.  The main reason I am concerned about bone loss is because I have bilateral hip implants that were installed just over 5 years ago due to osteoarthritis resulting from decades of playing sports and working out.  I'm 57 now and still active but don't do heavy weight lifting or running.  Mostly walking, hiking and body weight exercises now.   My concern with my prednisone intake is that I've been on 80mg/day for 19 days already and my doc wants me to continue with this dose through Jan 4th.  And then the taper. I'm not comfortable with this.   The good news is that my metabolic panel showed my glucose at 80 this past week.  I generally eat pretty clean and try to avoid simple sugars and processed foods.  I've been a proponent of probiotics for the gut biome for a long time. I have a weird history of auto-immune diseases (3) that suddenly go into remission for long periods of time...like the ITP.  Probiotics, I feel, played a key role in keeping my GI disorder in check and my GI doc agrees.   I saw my GP yesterday to request an H Pylori test as well as another CBC.   The H Pylori test if anything to rule out a possible contributor/cause of the ITP.   Results pending.

Thanks again for sharing.

Derek

I feel you on all counts, Derek.
I also HATE prednisone. I have two more doses of 5mg tomorrow and Monday, then I'm done. But I almost think the month and a half of Prednisone, at least for me this time around, was a good program. Here's how it went for me:
Discharged from hospital at platelet count of 47 at 80mg Pred
following week my platelets were 80, and I tapered to 60mg
Following week my platelets were down to 57. Tapered again to 40mg
Following week platelets went up to 128, tapered to 20mg
Following week platelets were up to 137, tapered to 10mg
Last week they were 149, and I've now tapered to 5mg
It makes me wonder if the short-term Dex treatment doesn't really give your antibodies a chance to "forget" or reset from thinking platelets are an invader. I'm no doctor or scientist, so I have no clue.
But if I were you, as much as I also hate Prednisone, it might be worth giving that a month. I don't think a month is enough time to give you osteoporosis. 

On another note, while on Prednisone, I WAS concerned about diabetes coming out of it. So I cut almost all carbs from my diet, basically a keto diet (although you will not ever get into ketosis). I didn't gain weight or get a moon face and my blood sugar didn't really seem affected on that diet. I also exercised every day. 4 mile runs 5x per week and lifting at the gym 2x per week.

Also I read up about the role of gut health and the immune system and it seems like there's a significant relationship. So I started taking daily prebiotics (fiber, basically) and probiotics.  Again, not a Dr. and I never asked my own dr about it. So you might want to ask yours before following any of my layman advice.

Good luck whatever you decide! Keep us posted. 

Hello, I'm new to the group. Like Mark, I was in remission for a long time then ITP recently returned unfortunately.   I was diagnosed with ITP in 2011. Routine blood work during annual checkup revealed platelet count of 6K. Was put on prednisone then dexamethasone for 3 months.  Counts returned to over 200K for 11 years until early this year (2022) routine blood work showed my count was 85K.  Over the course of the next 3 months it remained between 70-85k. Hema doc said he didn't treat unless counts were below 30K which I was glad to hear. I had a bone marrow biopsy and MDS FISH panel in March which came back normal.  
Then, one month ago I noticed purpura spots on my mouth and petechiae spots on various areas of my body.  Went to the ER and found out my count was 2K.  Was admitted and started on 700mg IVIG and 40mg dexamethasone for 5 days.  My count jumped to 232K day after discharge. Quick 3 day taper from dexamethasone. 10 day followup appt showed my counts back down to 22K.  Doctor started me on 80mg prednisone per day.  2 weeks followup my count was 64K. The doctor wants me to continue to take 80mg/day for another 4 weeks.  I left the appointment, did some thinking and more research on side effects of corticosteroids and have decided I am going to begin tapering off.  I am very concerned about bone loss/osteoporosis among other side effects.  I am also going to find a 2nd opinion regarding treatment.  If my counts remain where they are now without meds, I will choose to monitor rather than take drugs. If they drop below 30k I will request a TPO therapy.   I refuse to stay on prednisone.  I'll post updates on my jouney and share any learnings.  I wish everyone here the best and am thankful to have found PDSA. 

Derek 

I cannot see the logic in stopping N Plate  whilst reducing the Pred. 

Thank you! I am on high prednisone so that is probably why the Nplate is overreacting. They are trying to wean me down on the Prednisone. Problem is that they stopped the Nplate at the same time. 

Sitting in hospital waiting for Nplate to kick in again.

At one point, I was taking NPlate with a low dose of prednisone.  My counts were wildly erratic.  During a certain one-week period, count went from 5 to 572.  That yo-yoing went on for over a year.  My highest count ever was 886, and that was on NPlate alone.

I was fortunate to have a non-official phone conversation with a noted expert on ITP and NPlate a few years ago.  I told him about my wildly swinging counts during my NPlate/prednisone time.  He said that NPlate combined with any other treatment has a synergistic result and that might be the reason for my difficulties.  Eventually, I was able to discontinue prednisone altogether.  Now I use it only when I need a  temporary, guaranteed boost in advance of invasive procedures.  

How are you doing today?

I take Doptelet and NPlate together 

Recently diagnosed, prednisone and immunoglobulin didn’t work. Nplate did and then too well (769). Tapering prednisone and Nplate too quickly, I dropped back to 2. Second hospitalization, prednisone and immunoglobulin again aren’t working.  Started Promacta on day of admission. On day 4, Hematologist added a Nplate injection as my platelets are at 1 in hopes of speeding up the response.

 I feel better as I know Nplate works. Curious if anyone has been given both. 

Hang in there it is scary. I was had platelets of 1 for over a week until they tried IVIG. I probably was a 1 for a month before I went to the hospital. I started exhibiting symptoms like gums bleeding, severe bruising and blood blisters 30 days before I went for a blood test. All my doctors thought it was normal bruising because I was on a blood thinner. So hang in there you will be fine

Thank you. I am in the hospital with platelets of 1…waiting for Promacta to kick in. Your post is comforting on many levels.

I am sorry you are going thorough this. It is very scary but this is my second go round. Some of the others posting on here have been comforting to me. Many have had platelets in the single digits and have made full recoveries. From what I read having low platelets with no symptoms says I should be concerned but not to panic. My experience with IVIG has been good. I have had 5 timed. Each time it brings my platelets up to 100 but unfortunately they drop pretty quickly within a week. My first go round with ITP went into remission and my platelets went back to normal with no medicine. I was on Promacta for about a month but was weened off it. I am hoping I have the same luck his time. One does of IVIG and my platelets recovered to 120 but quickly dropped to 32 3 days later I am hoping Promacta will keep them above10 which is somewhat safe. I  will know in 5 days when I get a blood test. Good luck Hang in there so many have gone through this. ER doctors can scare the hell out of you. This is a rare disease. They have no experience with it and panic giving you platelet transfusions and steroids that for many does not work. You do not know how many times I heard ER doctors or nurses say they never seen plates at 1. Get a good hemo doctor and they will figure it out.

I have recently been diagnosed when I had petichia on my hands. Found my platelets were 1. 

During first hospitalization, IVIG, IV steroids and platelet infusions didn’t work. Nplate did. after 5 days and was discharged with platelets of 96 with a second dose of Nplate. Over next 2 weeks, platelets shot up to 769 while just on prednisone. A week later, I was readmitted to hospital (where I am now) with platelets of 2.

Have others experienced the explosion of platelet numbers like that?

 I have a different hematologist this time who is attributing the rapid rise post discharge to the IVIG even though it didn’t seem to do much in the hospital. I got more IVIG 2 days ago…platelets rose to 5 only to drop to 1 today…

Would appreciate others thoughts.

Thank you Poseymint! Your response is so comforting to me as I sit here wondering where my count is. I am hoping Promacta is keeping me above 10. I seem to start exhibiting mild symptoms when I get into single digits, petichia, bleeding gums and mouth blood blisters. So far no symptoms so your response and no symptoms is keeping me calm until I get a blood test in 5 days. Hopefully my levels have stabilized above 10 and I can breathe a sigh of relief. Thanks again for your response. If you do not know it already, you might be able to get Promacta for free. Novartis has a program based on income. I could never afford the 10,000 dollars a month this drug cost if not for that. I was going to go on N-plate last time this happened if I was not approved. I know weekly injections could be a problem vs just taking a pill everyday. Good luck to you and I hope all goes well. Steroids do not work for me. IVIG brings a rapid platelet rise but it is short term.

Mel
Maybe more a case of the statin not allowing my counts to climb  as they had been low for a couple of months before I started taking it. 

I have had platelet count of 1. My hematologist looks at symptoms along with numbers. I had no symptoms so I took 20mg prednisone and drove home. Predinsone is my rescue treatment. I started on Nplate then because you don't want to be on steroids long term- too many side effects.
I am on weekly Nplate. I don't appear to have any side effects from it. It is similar to Promacta except it is an injection. My counts are usually between 20-38, not normal counts at all. If I go below 20 I don't worry about it. Its not necessary to be over 100, just a safe count which is above 20 or 30 for most people. Although for a couple years my counts were in the teens and often below 10. I learned that I am okay with low counts. The treatments can be as bad as low counts for doing harm. Your doctor sounds like she knows to not over-react to low counts. And to not over-treat. Promacta is a good drug with an 80% success rate to bring counts up to a safe level. Also some people go into remission on Promacta and Nplate meaning they can stop taking the drug.

When I was new to ITP 12 years ago, I went to the ER with a count of 6. The doctors looked at me like "Whats wrong with you?" They were looking at symptoms. I sat there for 4 hours then was sent home with prednisone and was told to call a hematologist. That visit cost me $2500. and took me 2 years to pay it off. I will never go to the hospital for ITP again. Nurses have begged and threatened me to get me to the hospital for a platelet transfusion. My count was 7, I refused and was totally fine. You will get to know your body and symptoms and become able to judge your own risk tolerance.
Another thing that helped me is to learn about the "clotting cascade". There are around 50 chemicals that assist with blood clotting. Clotting is too important for the body to rely on platelets alone. So when there are not enough platelets, the other chemicals can take over to some degree.  That is not to say that there is no risk but its just to say that your body can compensate so thats why we look at symptoms also.

If the lower counts started w/the statin then it would seem that is the problem.  
mrsb you sure are having a time of it - I'm so sorry!!!

Aw, mrsb, I'm so sorry you're going through this.  Wish I could give you some of my platelets.

Thank you for the information. This is my second bout with ITP in 18 months. So far no bleeding issues other then gums. I will ask my Dr about TXA. Yeah blood blisters in the mouth seem to be that platelet levels are below 10

So my count on Friday was 5 and is 10 today. I am covered in bruises and have volunteered to put my pred dose up to 10mg/day for a few days. 
I have  had 46 platelet counts since I started Atorvastatin in February. Only 6 times has my count been above 20 since then and 17 times in single figures. Haemo has stopped the statin for 3 months. Be interesting to see if count improves.