Looking for a Immune Thrombocytopenia Specialist Doctor near me. LANCASTER,PA 17601
Any suggestions would be greatly appreciated. 
Thank you!

Yeah, my guess is you will need to be retreated with Rituxin in a few years unless you were just having a one-time event (unlikely given your age).  However, if you are like me (sounds like it) we are pretty lucky in that Rituxin gives us remission of years at a time.  Anyways, Rituxin does now have biosimilars (ie: generic) but sounds like somehow they are still charging a heck-ton of money for treatments.  I need to see what actual drug they gave me (Rituxin or biosimilar) and try to understand it's cost.   Seems unreasonable as they due use Rituxin a lot for Rheumatoid arthritis (like every 6 months I think) so can't imagine they could be incurring this kind of charge that regularly (unless maybe they use a whole lot less Rituxin in those treatments).    

Thanks for your kind words, I refer to my self as diseased because I have Graves Disease which is another auto immune.  I also have allergies and they too referred to me as a diseased person because of it. But you are correct that ITP is a blood disorder, I just lump them all together.  My surgery went well but boy is it scary with this problem. Just want to update that.

Wanted to share this in case it helps someone else. I had my platelets checked 13 days ago and they were low, then today I had them rechecked and I gained 22k platelets.  My doctor referred to it as a slight increase but to me every platelet counts!!!  Over the two week period, I put myself on a raw vitamin c diet that I ate every 24 hours.  Vitamin C doesn't hang around so you do have to do it daily.  I ate two cuties which are mandarin oranges and 1 cup cantelope. I added tomato slices to my sandwich and I don't even like them. I ate 1/2 of a yellow or orange bell pepper raw with dip while preparing dinner.  I have always eaten cooked broccoli and white potatoes to try to get vitamin c but I think I cooked them too much and may have lowered the amount of c.  After doing this for two days, I felt an undeniable shift in fatigue.  I'm going to continue with this for 2-3 months to see if I continue to climb.  If I plateau, I may consider supplementing some c.  My understanding is the body can only take and use so much so large amounts may not be beneficial so I decided I would stick with around 100mg which is what is contained in a multivitamin label.  Hope this helps, I'm enjoying my new found energy and my slight bump up in platelets!  I do not freeze the fresh fruit as doing so may alter the c level as well.  I noticed my bruises on my arms went away faster with fresh fruit.  The navy supplies two cups of fresh fruit everyday just as a reference.  I did not present with anemia but do have ridges in my thumb nails and I was breaking blood vessels in shin area without exertion. I also have many food allergies and I'm gluten free.  Avoiding all of my food allergies did not raise my platelets the way I hoped.

Well it is good to see you Joanne and to know your surgery went well!!
I too have Graves - small world huh?!  But I still don't consider myself diseased
How is your platelet count doing?

My platelet count is stable.  It has been running in the 50k area.  So far the only way I can move the needle is to add a good amount of fresh vitamin c foods to my diet.  My body responds to this despite being told I don't have vitamin c def.  My dad had all of my food allergies and he had shellfish as well.  He got iron shots because he did present with anemia.  My dad's fruits were green grapes and pears.  I never saw him put an orange to his mouth.  He had a rigid diet, creature of of habit and I guess I'm like him too.  If the food works why change it?  I saw my bruises on my arm fade if I consume fresh fruit and raw bell peppers but it wasn't the same when I froze it.  My husband went and bought a ton of fresh fruit but I told him it will go bad so we froze it.  I have a vitamix blender so this was a no brainer.  Now I know better and I do frequent the grocery store and buy it fresh.  I make my own coconut milk and blend everything so I'm not complaining I have to drink this to gain platelets, it's delish!  It may not cure me but it's the only thing that's worked.  I've tested it many times and sure enough I start heading in the right direction.  Time will tell if I continue to improve.  I posted this under natural healing section in case someone else responds this way.  I went from 64k(nov 30) to 86K(dec 13) in a 13 day period, I'll take it!  I knew it worked right after my blood draw because I didn't get the immediate bruising, yay!  I hope you are feeling well too

Hope it's still relevant because it's an old post but my take on coconut water is its a good source of vitamin c and yes fresh is always best.  My concern would be that you would have to drink a good amount of it to get to the levels your body likes for this vitamin. Everyone is different with absorption issues, and so forth but I make my own coconut milk and only consume a 1/2 cup with a cup of fresh citrus fruit.  I limit it because it's high in sat fat and it is an electrolyte (same as coconut water) and I don't need any problems there.  The coconut water fresh would be sugar free which is great but the canned version contains added sugar sometimes which I don't want in my diet.  I need to keep room in my diet for daily fresh citrus fruit which is also high in natural sugar but gives a high vitamin c content. Yellow and Orange bell peppers raw are a big vitamin c punch without high sugar or creating a potential imbalance of electrolytes.  Hydration is great though for energy and wellness.  My son is a big fan of one coconut water after a bball game. I tried it and it tasted like popcorn to me.

PoseyMint, thanks for the info about your experiences paying for treatments. The current Promacta website does say there are assistance programs, but they cap it at $15k, and my understanding is that the drug costs over 10k/month, so that's only a month and a half of coverage? It's confusing. Currently I have Medicaid which has been awesome, have not seen a single bill. But I'm trying to get a job which means back on commercial insurance, and who knows what they'll cover. I think I might have to just budget hitting the out-of-pocket max every year for whatever plan I get.

It's good that there are multiple treatment paths these days, so I'm not too worried - as long as I have coverage and don't go bankrupt. I don't know my current platelet count, the results of my last test have not come in yet. Afraid to get my hopes up with the steroid (just about at the six month mark now). I mean, if I could just take a short course of steroids every six months I'd be fine with that, but I suspect the effectiveness of that would wear off over time.


Luvmycat, that is interesting that your husband has the opposite effect from the vaccine. Immune systems are weird, the more I learn about it the more I realize how little we know. A lot of published research is more about measuring observations than it is about understanding how anything works. And a lot of clinical medicine seems to just be trial and error.

I think you have the right philosophy. I'd like to avoid treatments as much as possible, unless the doctor thought there might be a curative remission. Then I'd jump on it. But that doesn't seem to be on the menu. Maybe some day in the future medicine will find a way. For now, if the treatment options are to destroy my immune system, go on drugs with a lot of side effects, or remove an organ from my body... I'll just take the wait-and-see approach. 

Based on what I've read, the brain-bleed risk is very low. Less than 1% according to this paper, and more common in children [ www.ncbi.nlm.nih.gov/pmc/articles/PMC10313438/ ]

Your doctor probably explained this, but even though your platelet count is reduced, the platelets that you do have are younger, larger, stickier. They actually work better - it's the body's way of compensating. The human body is amazing like that.

That said, if you ever find yourself with a sudden and very severe headache, a CT scan is a good idea.

Daryl...how are insurance companies handling pre-existing conditions these days? I've had my current insur for a long time so I'm out of the loop on that one.  My husband had blood work Monday and his platelets had gone down to 84K. We figured it was too good to be true.  So, his procedures had to be canceled for today and tomorrow and rescheduled for January along with the IVIG and dexamethasone. Bummer as he wanted to get it over with and then our deductible starts over in Jan as well.  I agree with your wait-and-see approach, especially a spleen removal! I have also read that this is a failure in many patients as the liver takes over destroying the platelets. I hope that your immune system "straightens out" and this resolves itself. Keep us posted and we'll be glad to answer any questions you may have.

Retired RN here. While all medications have side effects, obviously some worse than others, the last thing I’d want to chance is a brain bleed when it could likely be avoided. That said, if people have stable low counts they may live indefinitely without problems; the people likely to have issues are the ones who counts drop suddenly and they are unaware. I’d chance the side effects rather than a brain bleed. I did as do most others on this site who are taking meds to prevent a devastating medical event. 

While my husband was still employed our BC/BS covered almost everything with very little out of pocket after our annual deductible was met; what wasn’t covered, since we had private pay insurance -NO GOVERNMENT PLAN-the manufacturer picked up whatever was remaining. as long as you private insurance the manufacturers seem helpful. 
Now I’m on Medicare and a private supplemental plan G as well as plan D for prescriptions. I haven’t yet had to try to fill my Doptelet prescription but from what I understand I’ll end up in their ‘donut hole’ for catastrophic  illness meds and, like you, I’m thinking it will be ridiculously expensive. 
  If anyone out there has Medicare plus supplement plans and can tell me how this works I’d greatly appreciate it. 

I’ve got ITP and found this group when first diagnosed. My daughter has antiphospholipid syndrome and I was unaware that fell under the umbrellas of PDSA. Are there many on here with this disorder? I’d love to get her involved if there are others with this rare disorder on here for her to connect with. 

If you're willing to travel to Philly, the UPENN hospital system has an entire department for blood disorders.

MariLinTx, I have a Medicare Advantage PPO plan.  I've been taking NPlate since 2014, with an attempt at Rituxan in 2018.  My plan has picked up every cent of these costs.  Nplate is billed as an in-office treatment, not as a prescription drug under part D, and thus is reimbursed completely that way.

At one point, I was considering a switch from NPlate to Promacta, which would be billed to Part D instead of G.  My co-pay would have amounted to $80 a month.  I ultimately decided the switch wouldn't necessarily be worth it.

Is Nplate an oral med? I’m doing so well on Doptelet I’d hate to change but I am considering options so thank you very much! 

NPlate may have been the first TPO-RA drug marketed in the US, I don't remember exactly.  It's a weekly subcutaneous injection that must be done in a doctor's office or infusion center.  For me, that's little trouble, because my doctor is within 3 miles of my home.  I'm not bound to a set appointment time.  I go every Tuesday in the 10-11:00 hour, and I love the nurses who've been caring for me ever since my diagnosis in 2008.  The schedule works fine for me, but I'm well aware there are many who prefer an oral med to take at home.  The worst part of the whole routine is the weekly CBC.  I sure could do without that, but my counts are too unstable to skip it.

There may come a time when getting out of the house will be hard, and I'll have find an at-home drug to take.  For now, though, I'm very happy that NPlate gives me no side effects, has no dietary restrictions, and costs me nothing out of pocket.  Will deal with a change when/if it needs to happen.

Would you mind telling me a little about your experience with Doptelet?  It wasn't available when I began treatment.

I was diagnosed with itp last year but now that I know the symptoms I realise I have had it for a very long time, undiagnosed and untreated. I took prednisolone for some weeks early this year while also starting mycophenolate, tapering off the prednisolone as the mycophenolate kicked in. I've never had a count as low as some of you, my lowest recorded in a test was 12. But with the treatment I've been well into the healthy zone for months. The haemotologist now wants to wean me off the mycophenolate. After the first reduction (from 2g to 1.5) my count dropped from 156 to 94, but staying on 1.5g it recovered to 125. Now I'm down to 1g mycophenolate (500mg twice daily), and he wants me off it in about 6 months. I'm happy to reduce it but I'm concerned about discontinuing completely, because it took so long to take effect. Anyone have relevant experience?

Never heard of mycophenolate so looked it up - not sure I'd want it, but......  It said used for refractory ITP, was that a 1st line treatment for you?

Nothing wrong with a count of 94

Thank you, yes, first treatment after/with the prednisolone. Maybe mycophenolate is a regional label? I'm in Australia.
 I agree, 94 is fine, it was the drop that bothered me.

After 2 rounds of ivig+ dexameth+ revolade the platelets increased substantially to 1 million

Then Doc put him on only revolade (50) per day

However the crash is also rapid 
My son's platelets are decreasing by 200000 platelets  a day.

I have no idea how  the spurt to a million platelets  and subsequently why the rapid crash.? 
 Prior to splenectomy  I never saw his platelets go above
150000

Any advice or answers? 

Dont say that. Ive already put my episode behind me and pretty much pretend that it never happened and will never happen again lol

Margaret since you mentioned mycophenolate could be a regional label I searched again and found the brand names are CellCept and Myfortic.  I am minutely familiar with CellCept.  Not sure it is used as a 1st line treatment here.  Have you researched the drug?

Maybe the drop in count was due to decreasing the dose too quickly, but a .5 decrease doesn't seem a lot - but again, I don't know that much about CellCept.     What did  your hematologist say about the drop?

(Australia is where I have always wanted to visit - know I'd fall in love with it)

Coconut milk or coconut water?  I like coconut water but don't drink it daily.  I hope your fresh vitamin C foods continue to work for you, seems to be the trick for you!   It is nice to have a stable count!

Thank you, I am doing well & have a steady count too.  What was crazy was baby aspirin after knee replacement brought my count into the normal range, didn't stay there through.  

Thanks Mel. I've read a bit about it, and the haemotologist's concern is the long-term effects. He's keeping an eye on the count, but because there was some increase without a change to the dose he's confident to further reduce it, and review after 3 months. Which I'm ok with. My hesitation is about weaning right off it. If I have a significant drop later and have to start from scratch, it's such a long process till it takes effect. I really don't want to do steroids again. But I guess ultimately that's what itp means - monitor and medicate as needed. I'm lucky that I responded well to this treatment.
   Australia would love it if you visit! At the moment the northern bit is washing away tho ...
   
    

Hi,
Did you ever take Parasite destroying medicine from a Vitamin Store? If so, are you free of ITP?  I hope so!
You recall, soon after the course of Parasite medicine (along with other homeopathics) that I took, I never needed IVIG again. I have been free of ITP since 2018.

Over here in the UK medications  dispensed by the NHS are prescribed by their generic names. It really annoys me that other countries use brand names and completely rip off patients. My current prescription  is Avatrombopag 20 mg tabs:- 1 tablet/day and Prednisolone 2mg/day. That would cost a maximum of £19.30 a month, (24.3US$, 36.09 Aus $).
If supplied 2 months worth of meds then that would  reduce by 50% a month. The maximum anyone would pay is £111.60  (141.24US$, 208.68Aus$) a year because one can buy an annual  pre payment card. I am over 60 so get all my meds free any way. 

Midwest 
Aren't you allowed to inject yourself?

Mrsb, Amgen's patient care information page says that a doctor or health care professional has to recommend self-administration "for specific patients".  I assume those would be mainly rural residents with limited access to traditional health care settings or services.  I doubt that many people who live in large metro areas like me would be given the choice of self-injection unless that requirement would prove to be a true hardship. 

In my own case, the tiny dose of just 5 or 10 mcgs per syringe that I need might be too miniscule for me to prepare on my own.

Somewhat similar here. Prescriptions are a standard price, I think $15 (AU) but for me as a pensioner $7.50. But I reached the "safety net" limit of $260 for pensioners, so for the last few months they have been free, until the end of the year