ITP Has Retuned After 4 Years; Platelets at 3000!

I would appreciate any advice that anyone can provide. I'm presently in the hospital for a week and the treatment doesn't seem to be working. Four doses of Decadron has done nothing for me--platelets still stay at around 3000. Four years ago the Decadron helped my platelets go up to over 200,000 (along with prednesdone)..They even did two platelet transfusions which didn't work either--so I've refused any more since they don't seem to matching them up correctly (platelets still stay at 3000).

I had one treatment with IVIg (along with another Decadron). They plan to give me another treatment today and want to add the Decadron. I'm thinking that this would be my 5th treatment of Decadron 40mg which isn't working. Has anyone had IVIg without the Decadron. I really don't want to add more meds to my body if they are not doing any good. Does anyone know if you have to have the Decadron with the IVIg? I would appreciate any responses and information. Thank you,

DeeDee Marie (Diane)

Hi Dee Dee - I have never had IVIG but I just wanted to say I'm sorry to hear you have to go through this again after 4 years of freedom.

If the combination of Decadron and Prednisone worked the first time, why is that not being tried again?

And if you're getting no response from the Decadron and IVIG and transfusions - maybe it's time to move on to some of the other treatments like Winrho or Rituxan?

Just a thought.

Platelet transfusions do not raise counts. They (can) stop bleeding, but they are not a treatment. Seems counterintuitive, I know, but the ITP just munches up the new platelets and any boost in counts is very short term. Platelets make sense really only when you are bleeding or having surgery.

You don't have to take decadron and IVIG together. They often are given together, since decadron can help control IVIG's side effects, but they can (and often are) given separately as well.

There are lots of other treatments out there. Go through the list on the PDSA treatments page with your family and doctors and figure out what you want to try. Best of luck.

Thank you Michelle and Gort for your reply. I have been in the hospital for over a week
and am getting scared. I agree with you about the platelet transfusions. I didn't
think I was in jeopardy of bleeding to death, but they scared me into getting them.

The first transfusion raised the platelets up to 68000; I then went back down to 4000. The second transfusion didn't do anything at all. They did give me Decadron: The first
dose was a mere 12 mg of Decadron. I then showed the doctor my medical record that showed they had given me 40 mg of Decadron 4 years ago. So they increased the Decadron to 4 more treatment of 40 mg. This did nothing for my platlets--still at around 4000.

I then agreed to the IVIG--one with the last Decadron 40 mg--and am now currently getting
one more treatment of IVIG. This will be my last one since it doesn't seem to be working. And, I think because they just stopped the Decadron cold turkey, my brusing and peatiche (red spots) seem to be getting worse. They act like I am going to die from the ITP and they are scaring me too!

I am going to try to get a referral to a doctor at USC in California who specializes in ITP. I am 62 years old and have been in fairly good health except for the ITP. I exercise regularly and do not smoke or drink. I do have a lot of problems with allergies to food and medications and feel I should have been taking this a little slower.

I appreciate all of your advice and your response to my post. I really do need some support as I am scared at the present. Plus, the doctors want to keep giving me more transfusions! Any advice and support is very much appreciated!

Thank you and God Bless,
DeeDee

Get a second opinion.

Since your current treatments are not working (that's the problem with steroids, you can always try just a little bit higher dose......), time to try something else. Talk to your doctors about Rituxan, Win Rho, Promacta and N-plate.

Hi Dee Dee, I can imagine you're a little scared, I've been there myself for my husband. People have told me that the bleeding part is the most threatning, not the count. I've read many have went for weeks on end with platelets in the single digits, my husband was released from the hospital just recently with a count of 4, and he actually had some bleeding. I'm not the most knowledgeable about ITP, but I can tell you about my husbands treatments. He didn't respond well to steroids either, he had IVIG but it didn't raise the count very high the second treatment and it didn't last very long. The last time he received high doses of solumedrol in the hospital but it didn't budge the platelets. He is now receiving Nplate and is responding. If it sounds like a lot of treatments, he's only been diagnosed with ITP since May 11th, 2010. So you see, there are a lot of similarities to your response to treatments and his. I'm wishing real hard at this moment that you will find a little peace and you won't be so scared. If I could reach out and give you a hug, I would, but know that I'm thinking of you. You'll be alright, you'll get through the scary part, and you have come to a good place to seek friends. Bless you.

Thank you Donswife and Gort for your response. It helps so much to get support from others when you are in this scarred situation.

I at least made it through the night without anything major happening. I am starting to
get some blood blisters again in my mouth (do you know if this means that you are bleeding/hemoragging?) The doctor's here at the hospital seem to thing I am hemoragging when I get these blood blisters which I didn't really think was the case. Have you heard if this might be the case? I would appreciate your thoughts on this point. I haven't been bleeding from my mouth when I brush my teeth--so at least that is a good sign. Donswife--It does sound like I have a lot of similarities to your husband as far as my response to treatment is going. Did his doctor's scare him like my doctor's are doing, or did they stay calm and try to calm your husband down? That has been my biggest problem--having these doctors freak out on me and just plain scare me.

Gort--I am going to get a second opinion like you suggested. I am going to ask my doctor when she comes in today. This might give me little peace. Thank you both so much for your support and responding to my posts. This means so much to me! And, I do appreciate any other advice and support from all of you.

God Bless you both and my sincerel gratitude!

Dee Dee

DeeDee, Don's doctors are a hematology group in our town, and I think they don't have much experience with ITP (or at least stubborn ITP). They seem to think that steroids should work, then went on to IVIG saying it could result in resetting his immune system back to normal so I don't think they're always on the leading edge of knowing how to treat ITP. However they don't seem to be too alarmed at having ITP and having trouble getting platelets up. Don had 1 bout of blood blisters in his mouth, but his went away once his platelets rose due to a temporary increase from the IVIG. I suspect that it means your closer to bleeding easier. If you can swing it, I would certainly persue the ITP specialist if there's one in your area.

DeeDee, we seem to be the same age, so I can relate to you easily. If you just need to trade ideas or support, I'll always be checking the boards. Hope today goes better and you can talk to your doctors and tell them that they're scaring the heck out of you and they need to stop it!

DeeDee, I've been thinking about your situation. Can you talk to your doctors and ask them how they feel the present treatment is going, if they think it's helping, also ask them what else they're considering? You can tell them that not knowing how they feel you're doing is scaring you and that stress isn't what you need right now.

Dear Don's Wife, Bless so much for your support. Thanks for responding to my posts during this time of stress. I sort of think because they stopped me so fast on the Decadron 40 mg, I started getting the blood blisters back. I may need to ask some others on the site with experience just how serious it might be--but I'm not bleeding from my gums right now. My doctors here at St. Jude in Fullerton, Ca, sound similiar to the ones in your town as they seem to have the same treatment plan.

When one of my doctors came in this morning, he had informed me that they would not allow me to leave this hospital until my platelets were at least at 10,000; I told him this probably wouldn't happen at the present rate. I did get a little upset with him and again said I wanted to be transferred to USC and get my second opinion.

The nurse did finally come in to tell me that she thinks they are going to go ahead with the transfer to USC (I will keep my finger crossed!). I am more worried about my treatment plan as I've had my father die from Aplastic anemia and my brother died from another type of bone marrow disease--so I am trying to protect my bone marrow from too much damage. I will keep in tough with you and appreciateD all your support! I never thought I'd be a prisioner in the hospital! Please keep in touch--and I will let you know if I get the transfer!

God Bless!

Dee Dee

Dee Dee:

I'm glad you asked for the transfer. That takes some guts, but it sounds like you needed to do it.

It's frustrating when they keep trying to give you the same things over and over and you are obviously not responding. Time to move on.

Have you had a recent bone marrow biopsy?

I prefer calm doctors also. Mine always was and it was great!

Thanks Sandy for your reply. Eventhough I haven't posted much on the site, I've kept up with all of you and how you are doing. I've been reading your specific posts for years and greatly admire you; am really glad that your are an official adminstrator on the site.

When I got sick 4 years ago, I started reading everything on PDSA and have tried to keep informed on what's going on. I did go into remission after the initial treatment of Decadron 40 mg--then tapper with prednisone over 3 months. I always remembered what you would tell others--once you've had ITP--it can always come back one day. I was trying to be prepared for that day if it did happen. I wasn't able to attend the PDSA conference in Las Vegas (which I am very sorry for now). I was invited to attend a conference last summer in Los Angeles sponsored by the France Institute (I think that's what it was called). They had some of the same speakers there that attended the PDSA conference in Las Vegas.

I did have my bone marrow checked out 4 years ago and asked the doctors if they need to check it again (they didn't respond to this--just ignored me). I have been trying to take it slowly on the medications since my family has a history of blood disorders and bone marrow problems. I am presently still fighting with my doctors here at St. Jude since they denied my second opionion request. I have elevated the issue up the chain of Health Net which they are really trying to help me out.

Sandy, I did want to ask you about the blood blisters in the month. I've been getting them mostly at night when I sleep--and they do seem to get better later in the day. This is probably common when you have such a low platlet count like mine? The doctors here did abruptly stop my Decadron treatment of 40 mg without any type of tapper--and boy, did I feel it the next day--and developed more spots, too.I

Sorry for such a long post and rambling on and on. It's that its such an effort dealing these doctors and this HMO system.

Thanks and God Bless,
Dee Dee

Dee Dee:

I did answer your question about blood blisters in your other thread.

I would think another bone marrow biopsy is warranted right now for two reasons. One - your family's history of problems and two, your failure to respond to treatments this time around. BMB's are also suggested for those over 60.

Decadron is normally stopped abruptly without a taper...the usual protocol is 40 mg's for four days and then stop. It can cause a quick rise in counts and then a very fast drop for some people. I'm not sure what dose you were on and for how long. Yes, the days following stopping the drug can be very rough.

DonsWife, I noticed you were on-line and thought I'd update you on what's going on with me. I'm not always sure if everyone gets their messages through their email--or if they have to keep looking at the site. May be you might let me know when you get this message. I also noticed you were from Nebraska. My Dad's family came from Omaha. I never did get my referral--but I did ask to change doctors--one who is a little calmer and might take more of an interest in me. So that's a beginning.

I am still probably about the same on my condition. I didn't want to take anything else until we discussed things a little more calmly. I also asked the doctor not to draw blood everyday as it seems to make my bruises worse and I look worse. Hope you are all doing well. Also, do you know if Don stayed on any special diet? Does certain foods cause his platelets to go down? Just curious.

Best to you all,
Dee Dee

Hi DeeDee, yes changing doctors is a new beginning for you. Special diet, no, Don has other medical conditions and although he is a big guy, doesn't eat much, so as long as I can get some protein in him, I'm happy. I think there is another member of PDSA who is more knowledgeable on good foods to eat to help your immune system. Yes, we're from around Lincoln, it's really hot and humid here the last couple of days, so Don spends most of his days resting at home, because he has two pressure sores on his bottom that we're trying to heal on top of ITP! Hope at least all the rest you're getting is helping, even if your med's weren't.

Thank you DonsWife,
At least you did get my message and thanks for your reply back. I know it's hard when you are lying in bed--not to get those pressure sores. Hope he gets them healed up real soon. Eventhough my platelets are really low, I've been getting restless and have to get up and walk a little bit. It's probably also from having all the Decadron and coming off from it. The rest is helping--at least I feel like it is. I've been married a long time like you (maybe not quite as much--going on 35 years). And my husband's trying to do his best to help out, too.

Dee Dee

DonsWife,
they just came in to tell me my platelets have dropped back down to 2000. Now they want to try and do another platelet transfusion--and am trying to do a match. I'm not showing anyother signs of bleeding--so am not sure if I should let them do it. It is only a temporary fix. Am a little scared on what decision to make, especially when they keep drawing blood.

Keep in touch,
DeeDee

How are the blood blsiters?

DeeDee - you are in a tough spot. My counts were once 3,000 when I went to get a count done during my lunch hour. The nurses suggested a platelet transfusion and I just smiled and said "no thanks, I have to get back to work". I left.

There may be extenuating circumstances with you that we are not aware of, so don't go get dressed and walk out. But I do think you need another opinion.

Thanks Sandy for the reply,
My platelets are at 2000, but I don't have any active blood blisters; maybe, just a tiny one. I came off the Decadron and they went from 4000 to 2000 in about two days. I told the doctor that the transfion isn't really needed since I haven't been bleeding. Then, when they took about 6 biles of blood--I do feel really bad (didn't feel this way this morning). I don't seem to do well getting blood drawn every day for two weeks.

I'm in-between a hard rock; they were going to let me go home with the platlets at 4000--but since it is 2000, they will not let me leave. I was going to work from home (in bed) about getting another opinion since I've been fighting with Health Net HMO. I was thinking if I get the transfusion, if it is matched properly (last time wasn't a match), I can leave the hospital and try for that second opinion.

They are going to have me her for ever--already been 1 1/2 weeks with no results. Sandy, do you have any suggestions?

Thank you,
Dee Dee

Dee Dee:

2,000 and 4,000 are the same thing. I don't understand why they are making such a fuss over the difference. Platelet counts fluctuate all the time so you won't see the exact same numbers all the time. Also, there is a margin of error of at least 5,000 when counts are done. Below 5,000 is below 5,000...there is no difference.

What tests are they doing that require 6 vials of blood? Ask.

Suggestions? Yes. You need a different treatment. Have you asked about N-Plate? Or Win-Rho? Or Rituxan? I know you are afraid of anything that might affect the bone marrow, but I think you should worry about that later and get your counts up now. Insist on that second opinion. They can't keep you forever.

Dee Dee,

The platelet transfusions make no sense. My son has been between 0-2 (basically 0) for 3 weeks now with no bleeding. We give him stuff to keep his cell integrity good while we treat him. Hate to suggest this but you can always leave a hospital AMA (against medical advice) so you can go for a second opinion. They can't keep you there as an adult without a court order. The flip side of that being that an insurance company will sometimes not pay if you leave AMA. You have to call them first and run the situation by their decision makers.

patti

Well, there is an increased risk of bleeding the older a person is, so having low platelets at 62 is a different story.

Dee Dee - I can't tell you what to do, but I can bet you are frustrated to say the least.

Sandy, I agree with you 100% This is what I've been trying to tell the doctor; there isn't much difference as long as I'm not bleeding. The 6 vials of blood were for the following: First 2-3 in the afternoon for some type of CBC. Second 2-3 vials of blood were to try to match me up for another blood transfusion that they wanted to do tomorrow. I think I might refuse unless I show any signs of bleeding.

I'm glad you told me about the margin of error in the counts. I feel just as you said; that what's the difference in 2000 or 3000? I also think I need to try one of the other treatment options. So far, they do not have any type of plan in place.

Health Net has been siding in with the doctors; they said they just pay the bills--so the hospital and doctors are making money off of Health Net.

Sandy, thanks for your help. I may have to leave the hospital eventually and try to find another doctor that knows more about all the medications you mentioned. I'm familiar with all of them--just not sure which one to try first and if they know the proper procedure. This is why I would like a second opinion--to get these meds administered properly.
Thank you, Dee Dee

Thanks Sandy and Patti: I do know that there is an increased risk of bleeding at 62; that is why I've stayed to see if I was "holding & stable" which seemed to be the case. No real signs of bleeding. But now, I'll need to wait to see the effect of having all of this blood taken from me. I've had energy and have walked a little (being very careful). I don't want them to keep drawing my blood every day, though.

I think the risk is maybe 13%--not quite sure. I'm a very healty (except ITP) 62 year old. Exercise regulay (when well--not overweight). I do feel like a prisioner--and am just tired of this whole thing. Thanks for your help. And I appreciate any advice.

Dee Dee

Hi Dee,

Sorry to hear about your condition.

I can suggest you some natural treatments:

Try Wheat Grass Juice. This is known to increase platelets, RBC and WBC.

Also try alternate medicine such as Homeopathy/Ayurvedic. But please do consult your doctors before doing the same.

But Wheat Grass juice is totally safe to be taken. Just my thought.

May your health come back to normal . Thats what I will pray to God!!!

Thanks,

Gautam

Hi Gautam,

Thanks for your information on Wheat Grass juice. I am going to
look into these alternative treatments when I get better. I also
need to get tested for allergies to foods and grasses before I
see what I can take. When I was younger, I was tested for a lot
of foods and grases--and I was allergic to quite a few foods like the
following: tomatoes, tea, wheat, fish (most of them); and milk and
chocolate when I was a kid.

And, I've been eating a lot of these foods before I got sick again.
So, once I get tested--than I can go from there.

Thank you very much for your prayers!!!

God Bless,
Dee Dee

Sandy,
I made it out of the hospital yesterday. I changed from one doctor to another under the same medical group (the new doctor who was just advising before is from USC). He changed his technique on giving me the IVIG. He did it over a 24 hour period along with a steroid (not Decadron--the other one that starts with a "s"). My platelets went up to 12,000 which was above the magic number for getting out of hospital. Mentally, I feel a lot better. Just laying in a bed in the hospital for two weeks is not good for you, unless you are in jeopardy of bleeding.

I know they may fall back down to 2,000--but I'm feeling a lot better and feel happier. My only problem is that on Monday morning, they have me scheduled to go back to the same area (I'm not sure if it is outpatient or in-patient) to get my blood drawn. If it is below 10,000, they want to schedule me for a transfusions (my doctor is on vacation, too). I've decided that I will not let them admit me again to the hospital, even if they are at 2,000--only as an outpatient. And, I'm not sure on the transfusion--espcially if it is not matched.
I'm also getting a second opinion from Dr. Liberman from USC on what treatment plan would be best. I haven't shown any signs of bleeding on that front.
Taking it one step at a time--Dee Dee

I was wondering about you yesterday - I'm glad you've been sprung! Good luck with the new doctor. I hope things get better for you soon.