Second Opinion

Hello,
I was diagnosed in November 2011 with ITP. At the time of my diagnoses I had no symptoms, other than bruising, and I did not feel bad. On Thanksgiving morning I received a call from my family physician telling me my platelet count was down and that I should go to the ER if I notice any bleeding, or get injured. My counts were 28. The Friday after Thanksgiving she called again to say she had consulted with a hematologist and wanted me to start on 60mg of prednisone right away. The next few weeks were spent seeing the hematologist and getting my counts checked at least 2x a week. Unfortunately the prednisone was not raising my counts very much, and I was put on a 4 day dose of a higher steroid. That didn't work either. I just finished rituxin 1x a week for 4 wks. My counts are currently 19. My Dr. assures me that the rituxin will work. I have read that it only works in 65% of patients. My Dr. also tells me that it can take months after finishing the rituxin before we see results. I have had serious side effects from the steroids (which I am still on 60mg prednisone) and the rituxin.
I have decided to get a second opinion. I am going to the Cleveland Clinic in Cleveland Ohio on Thursday so hopefully I can get either better answers or peace of mind that I am doing all I possibly can.
Has anyone ever gone for a second opinion or to the Cleveland Clinic?

Second opinions are often a good idea. In the meantime, call your hemaotologist on Monday and ask why the prednisone isn't being tapered if it's not bringing your platelets up. There might be a good reason, but in most cases doctors will not keep you on steroids if they don't work...the side effects of long-term steroid use can be really difficult to deal with (you can't stop cold turkey, though, you'll need to step the dose down

Thanks Tamar
I am having my counts checked again on Monday. My Dr. has tried to taper me off the prednisone twice but both times my counts started dropping considerably and he would have to put me back on the higher dose to get my counts in the 20-30 range. I have been experiencing serious side effects from the steroids and would like to get off them as soon as possible. They make me feel terrible.

TL:

As Tamar said, a second opinion never hurts, but it seems as though your doctor is doing the typical, standard ITP regimine. Rituxan can take time to work.

As far as the steroids, I'd want to be tapered too. No one likes them, I can assure you that!

How are your symptoms when your counts are down?

TL,

I thought your count was 28 when you started pred and is now 19. If that's the case and 60mgs of prednisone isn't raising your count, you should consider tapering. What has been your highest count while on 60mgs pred?

Sandi,
My Dr. has told me the Rituxan can take time to work even months.

Thursday when my counts were down to 19 I really didn't feel bad. Usually I feel the worst on Sat and Sun after the Rituxan treatment.

TL

You seem to be one of the lucky ones who feels okay when counts are down. If symptoms are few, you will probably do okay with lower counts. Some people do.

I know it's hard to tell what's what when you also have side effects going on. Did they give you pre-meds before the Rituxan treatments?

Tamar,
The highest my counts have been were 72 right after I first started the prednisone. It only lasted for a few days, then started going down. Any time we have tried a higher dose of steroid my counts go up but only for a day or two then rapidly drops again. The even went up to 66 after my first Rituxan treatment. The next week they were down to 53 then 44 in less than 24 hrs. then 19 last week. Today they are back to 32. It is like a roller coaster.

TL

You pinned it just right in your comment about it being a roller coaster! No one who doesn't have IPT understands what a roller coaster the entire disorder is! Anyway, I'm with tamar and Sandi, I think it's time to taper off the steriods, nasty things. Give the Rituxan some more time. Sandi is right, if you don't have bleeding issues and feel ok when your counts are down then don't worry. Just be a little more careful when you use sharp knives and walk on ice! Our bodies are amazing things and if you know your's well enough then you will know if something is wrong an needs attention.

Sandi
Yes they gave me benadryl, tylenol and medrol(sp) before each rituxan treatment.
The side effects from the rituxan and the steroids together is tough. I am just trying to stay positive and keep pushing through. I continue to work full time but my spare time is spent resting mostly.
TL

Thanks Server. I am going to talk to my current Dr. and the Dr. I am seeing for the second opinion about getting off the steroids. I have a feeling my Dr. is not going to go for it just yet due to the fact when we try to do that my counts seem to drop into the teens. I do plan on asking him if it is a possibility that I taper off the steroids and learn to live with the low counts. Thanks again for the support and advice.
TL

TL - good attitude! We are opposite. I felt great the day after Rituxan and I chalked it up to the Solumedrol. I worked through it too...had the infusions on Thursdays because they didn't do them on Friday's (don't know why).

Hang in there - it does get better.

So today my counts are up to 53:) Maybe the rituxan is going to work for me after all. My Dr. wants to see if they stay above 30 for the next two weeks. If so we will start to taper down on the steroids again and see what happens. If my numbers start to drop again then he said we would have to look at the next line of treat...NPlate or Promacta... I go for my second opinion tomorrow. I am hoping they can at the very least confirm everything my Dr. has done and or plans on doing. I am seriously considering tapering down on the steroids starting now and see what happens.

Good luck tomorrow! Let us know how it goes.

Thanks Sandi I will...

I did go for my second opinion at the Cleveland Clinic. I am glad I did. I return next week for a bone marrow biopsy. Where to begin?
Since my second opinion my counts have hovered around 45-50 only dropping a few times. However, I was hospitalized last week with PVT (portal vein thrombosis). In short I have several blood clots in the portal veins going to my liver. I find it ironic that I have ITP and blood clots. Both my hematologist here in Cincinnati and in Cleveland are a little thrown off by it as well. They are running a ton more blood work and tests. I am having the bone marrow biopsy next Friday. I have been trying to put this off but my Dr.s are pretty insistant on it now.
I am more confused than ever and I must admit a little scared.

TL:

Unfortunately, clotting disorders can go along with ITP. A few people here have that going on. I have tested positive for APS antibodies and take an aspirin a day. I have not yet had a clot.

It is estimated that 33% of ITP patient also have APS.

Good luck and I hope they find out what caused it. Two ITP treatments that can raise the clotting risk: Splenectomy and N-Plate/Promacta.

Thanks Sandi. I just got home from the dr and it turns out I have a genetic clotting mutation. Factor V Leiden.
Now we have to decide whether to start me on blood thinners or not. My counts are still at 50 today and I am down to 5mg of prednisone a day. Friday I will totally be off the steroids. There is still one more test they are waiting on that takes a little longer. If all goes well with the biopsy next week then I have decided not to treat the ITP for now and just be aware of it and live with it. I am not sure how it will go with the blood clots and treatment. Thanks for all your input and help.
TL

Sorry to hear that, TL. You have some juggling to do. You may have to keep platelets above a certain level if you have to take blood thinners. Let me know how it goes.

Thanks Sandi. The Dr. said normally someone with this genetic "disorder" (for lack of a better word) that has a blood clot is put on blood thinners for 6 months. Then if they get another blood clot they are put on blood thinners for life. But those people do not have ITP or low blood platelets. This whole thing just keeps getting more interesting and complicated. We will see what next week brings. At least my counts are staying at 50 for now.
TL

You're the second person in the last week who was tested for Factor V. I don't know if the other individual has it yet or not. He had clots though, a young man. I've never seen so many people with this problem before. It's becoming commonplace. Years ago, no one had this problem.

Do you know of anyone in your family who had clotting - strokes, etc?

Unfortunately I do not know who I got the gene from. My mother passed away at the age of 33 unexpectedly. Her death certificate said that she died from natural causes and the autopsy did not determine the cause of death. This was in 73 in a small town in VA so I am sure they did not know then what they do now, or if they even looked for something like this. My brother has has 2 strokes, his first at the age of 23 and his second at the age of 40. However, he has other health problems that they say has contributed to his strokes. I am told only 3-8% of people in the US have this gene. I am also told not everyone that has this gene will develop blood clots. I have 2 daughters and I am encouraging them both to be tested for it.

I had my bone marrow biopsy on Friday. I won't know the results for about 10 days according to my Dr. there. I am starting on blood thinners this week for the clots in my portal vein. My counts continue to stay at 50 which I am thrilled about. I am just hoping nothing else shows up in the biopsy. I will keep you posted.
TL

Good luck! Let us know how everything goes.

Hi TL,

I have recently also had issues with ITP-related low platelets and also blood clots (one of which turned into a pulmonary embolism). I am 26 now but had ITP as a child and had a splenectomy at age 12. Until this past fall when my ITP relapsed, I hadn't had any more problems with my ITP since the splenectomy. Last fall, my platelets fell to 12K out of the blue, so the doctor treated me with 60 mg (tapering doses) of Prednisone (which I had never taken as a child and so I didn't know how my body would respond).
About 3 weeks or so into the steroid treatment, I ended up getting several blood clots in my arm, and then one traveled to my lung, caused a PE. My hematologist said he has never seen anything like it! He tested me for all sorts of genetic clotting disorders but all the tests came back negative, so he was stumped. His best guess was that the clots were caused by a combination of the steroids working too well (they jumped about 100k in a few days) and taking YAZ (birth control). Interestingly, other women in my family have issues with clotting. My aunt also has ITP and my grandmother has an autoimmune clotting disorder. Maybe there is a connection between the two? I can't remember the name of the disorder but could look it up if you are interested. I empathize with your clotty woes!

BB:

Splenectomy can also put a person at risk for clots. I wish more doctors were aware of this.

www.ncbi.nlm.nih.gov/pmc/articles/PMC2756197/

www.pdsa.org/forum/6-general-itp-discussion/15206-post-splenectomy-portal-vien-thrombosis.html

This is very interesting info, Sandi! I'm going to look into getting tested for APS since I did have some artherosclerosis symptoms when my counts went over 100K. I assume it was a blood test? Seems like it would be good information to know if someone were considering a splenectomy.

Also that the body is possibly balancing and protecting itself with the ITP response. That is an amazing idea- always looking for reasons. Fascinating that the spleen "polishes" re-conditions old blood cells- wow like a car wash. hah

About the micro platelets that are too small to count. Are you saying that some people with ITP have more of these than a non-ITP person? -- thanks!

Yes. Testing for APS is a blood test. There are three antibodies: Lupus Anticagulant, Anticardiolipin Antibodies and Glycoprotein. They could also throw in a VDRL.

Here are some articles about microparticles:

www.ncbi.nlm.nih.gov/pubmed/1583382

www.hematology.org/Publications/Hematologist/2011/7179.aspx

cat.sagepub.com/content/11/3/347.abstract?rss=1

Thank you Sandi! This is great information since I don't tend to have bleeding symptoms, I might likely have a higher number of "platelet micro particles". I haven't heard of anyone monitoring their platelet microparticles as it suggests in the article, but would be interesting. quote:

patients without symptoms (free of petechiae or mucosal bleeding) are found to have significantly higher PMP (platelet microparticles) levels (p less than 0.05) than patients with symptoms, suggesting hemostatic protection by PMP ..... Quantitation and characterization of PMP is important in assessment and management of patients with thrombocytopenia.

They don't test for those. It's only done in research labs at this point, even though they've known about them for years.