Big drop in platelets...

[evansmom]

Hi Laura,

After all you've been through, this is just plain not fair. I cannot blame you for your feelings of despair and frustration, I'd feel the same way and would be equally as worried.

I cannot help but wonder what your chimerism is. I'm trying to remember how much donor versus you your marrow was at last check? I wonder if the budesonide was just enough steroid to keep that chimerism in check and without it, your cells are beginning to dominate. It's so hard to know and I'm just throwing out ideas. How are your white cells? If they are normal/unaffected, I'd be leaning more towards autoimmune platelet destruction. Treatment for that also includes steroids and other agents like Rituximab. So there again, the withdrawal of your steroid could be implicated. I'd almost be tempted to ask the doctors to put you on some prednisone as a possible rescue out of either of these two scenerios.

So you want to know if all of your other counts are stable, if you have an anti-platelet antibody developing, what % you versus donor you are and maybe some prednisone in the interim for good measure.

These are just my thoughts as I put myself in your place and think as though Evan were dealing with these issues, what would I want done.

Please keep us posted, we are all thinking of you at this difficult time.

[evansmom]

Also Laura,

Your MCV is high indicating macrocytic anemia. Vitamin B12 deficience can cause this as can bone marrow graft failure. IMO, you absolutely, one way or the other, NEED to get your Vit B12 level up ASAP. Doing this orally with your gut dysfunction I don't think is going to work so maybe prednisone and big B12 injections may do the trick to raise platelets and prevent hematomas from the injections that you very desperately need.

You have got to find a doc who will order the B12 as IM or SC injections, I think. Maybe Dana Farber can do that?

Trying to think this through...

[Laura]

Originally Posted by Marlene

On the oral B12. They have found that high doses of oral B12 to be as effective as injections even with absorption issues. You can even do 5000 mcg daily. It is best to do it on an empty stomach, without any other nutrients, for the best results. Do you know what form of B12 you have? The Methly form is bio-available and would be best.

Jarrow makes a very good sublingual Methyl B12. 1000 and 5000 mcg. You can get them at Whole Foods or online at iherb.com.

Good to know! I will email my primary to see if I can do 5000 mcg daily at least for now. Nice to know about any empty stomach too! The form I got from the pharmacy is rugby brand. Vitamin B-12 Supplement 1000 mcg. On the back is says....Vitamin B-12 (cyanocobalamin) 1000 mcg %Daily Value 16667%. Calcium 23 mg...2%. Other ingredients: Microcrystalline cellulose, dicalcium phosphate dihydrate, steari acid, silicon dioxide, magnesium stearate. How do I know if it is Methly form? I will have to run to the whole foods....do you know if insurances will pay for this?

Thanks for the advice...it is GREATLY appreciated!!

Laura

[Laura]

Originally Posted by evansmom

Hi Laura,

After all you've been through, this is just plain not fair. I cannot blame you for your feelings of despair and frustration, I'd feel the same way and would be equally as worried.

I cannot help but wonder what your chimerism is. I'm trying to remember how much donor versus you your marrow was at last check? I wonder if the budesonide was just enough steroid to keep that chimerism in check and without it, your cells are beginning to dominate. It's so hard to know and I'm just throwing out ideas. How are your white cells? If they are normal/unaffected, I'd be leaning more towards autoimmune platelet destruction. Treatment for that also includes steroids and other agents like Rituximab. So there again, the withdrawal of your steroid could be implicated. I'd almost be tempted to ask the doctors to put you on some prednisone as a possible rescue out of either of these two scenerios.

So you want to know if all of your other counts are stable, if you have an anti-platelet antibody developing, what % you versus donor you are and maybe some prednisone in the interim for good measure.

These are just my thoughts as I put myself in your place and think as though Evan were dealing with these issues, what would I want done.

Please keep us posted, we are all thinking of you at this difficult time.

Nicole,

Please throw all ideas out there...no matter what...I greatly appreciate them.

My last Chimerism a YEAR ago (because "it is worthless to keep checking it") was 60% donor and 40% my own. They said they were going to check it again...but not sure if they did...will have to push for it. The Budesonide theory is a good one.

The only thing affected is my plts and MCV. The rest are all normal. The lymphs are a tad high too. I am tempted to run up to Mayo tonight and check and see what the results are from the antibody to the plts they drew. I would rather do Rituxan than keep on steroids...but that is my personal opinion without really knowing too much about it.

Again please throw out your thoughts on what you would do/think if it was Evan. I greatly, greatly appreciate your opinion! I take ideas and look into them and present them to my doctors. I find it very helpful for the ideas.

I will check into the stuff and get back to you.

Laura

[Laura]

Originally Posted by evansmom

Also Laura,

Your MCV is high indicating macrocytic anemia. Vitamin B12 deficience can cause this as can bone marrow graft failure. IMO, you absolutely, one way or the other, NEED to get your Vit B12 level up ASAP. Doing this orally with your gut dysfunction I don't think is going to work so maybe prednisone and big B12 injections may do the trick to raise platelets and prevent hematomas from the injections that you very desperately need.

You have got to find a doc who will order the B12 as IM or SC injections, I think. Maybe Dana Farber can do that?

Trying to think this through...

I will look into this stuff...thanks again!...think away!

[Laura]

A big thank you to everyone for your great replies!

[Marlene]

The supplement bottle will list the type of B12 on it. If they don't, then it will be the cyano form. Jarrow has it printed on the front of the label and they make both 1000 and 5000 mcg. You can buy the 1000 since it will give you flexibility in the dosing. 1000mcg is usually stocked more frequently.

The cyano form needs to be converted to a usable form and not everyone can do that effectively.

Insurance doesn't usually pay for vitamins unless it's filled as an Rx. You can deduct herbs and vitamins from your taxes if you have a doc's prescript for it. B12 is pretty cheap. I think Whole Foods will cost you about $12 for a bottle. You can probably get it cheaper online at iherb.com

One last thing.....John got shots all the time with 8K platelets. He got neupogen IM and I gave him Procrit Sub-Q. He also did sub-Q desferral with less platelets than you. So I don't understand why they don't want to give you an injection. Doesn't make sense.

Now we did get some major bruises from the desferal and had to stop until it cleared. But we used moist warm heat to help that along.

So one last question....did they check your clotting times? You may need vitamin K for the clotting. John had great clotting times even when his platelets were 8K. Vitamin K is found in dark green leafy vegetables.

[Laura]

Originally Posted by Marlene

The supplement bottle will list the type of B12 on it. If they don't, then it will be the cyano form. Jarrow has it printed on the front of the label and they make both 1000 and 5000 mcg. You can buy the 1000 since it will give you flexibility in the dosing. 1000mcg is usually stocked more frequently.

The cyano form needs to be converted to a usable form and not everyone can do that effectively.

Insurance doesn't usually pay for vitamins unless it's filled as an Rx. You can deduct herbs and vitamins from your taxes if you have a doc's prescript for it. B12 is pretty cheap. I think Whole Foods will cost you about $12 for a bottle. You can probably get it cheaper online at iherb.com

One last thing.....John got shots all the time with 8K platelets. He got neupogen IM and I gave him Procrit Sub-Q. He also did sub-Q desferral with less platelets than you. So I don't understand why they don't want to give you an injection. Doesn't make sense.

Now we did get some major bruises from the desferal and had to stop until it cleared. But we used moist warm heat to help that along.

So one last question....did they check your clotting times? You may need vitamin K for the clotting. John had great clotting times even when his platelets were 8K. Vitamin K is found in dark green leafy vegetables.

It isn't listed so must be the cyano kind. They told me they didn't want to cause bruises from the shots...so what? I already have bruises...about 16 pin point bruises currently. If it can make things get higher faster why not do them? I am going to push my primary to let me do shots. No to the clotting times...at least not what I know. Thanks for all the info.

Labs tomorrow....

Laura

[evansmom]

Are they for real there? I'm pretty sure getting your extremely low B12 level up is more of a priority right now than worrying about some bruising. What is wrong with these people?

[Laura]

My primary only works Thurs/Fri/every other Wed...so will ask while out at Dana Farber...I do have a vial left from the last round...would it be too wrong of me to just give it to myself tomorrow?....

I am going to do labs in am...then going to go and look up all the values and such...then will come back and post...

Laura

[squirrellypoo]

Originally Posted by Marlene

One last thing.....John got shots all the time with 8K platelets. He got neupogen IM and I gave him Procrit Sub-Q. He also did sub-Q desferral with less platelets than you. So I don't understand why they don't want to give you an injection. Doesn't make sense.

Ditto - I did my month of daily IVF injections while I was actively having platelet transfusions. Yeah, I got bruises from them. But I also got bruises just from sleeping and sitting still!

There's got to be some other reason that they're not telling you (funds? Insurance? Political? Staffing?).

Fingers crossed the oral B12 will tide you over to DF.

[Marlene]

Laura,

My philosophy is that there many things we can do ourselves when it comes to healing. You have to decide what those things are for yourself. Over time, based on personal experience, you learn what those things are. My personal opinion is that a B12 shot is low risk. I would be inclined to do the shot and continue with the oral supplementation since the shot is probably the cyano form of B12. But that's us. We've been combining alternative/complementary medicine for years now and are pretty comfortable with it.

We would also adjust John's desferal and exjade schedules depending on how he was feeling. Our doc was fine with that. Same with procrit. But that's us. But again, there is very little risk in us doing this with these meds. Aspects of your healing can and should be self directed at times.

Some of the supplements John took when his platelets were low would not be considered OK by most docs but they were instrumental in his healing and they did not cause any adverse reactions or increase bleeding.

One of our strategies for shots to minimize bruising/pain was use an ice pack on the area for a few minutes before giving the it. Then, if he bruised badly, hot, moist heat would help clear it. The Sub-Q desferal in his tummy gave some huge bruises.

John did not bleed to death when fell and broke wrist at 4K platelets or when he ruptured his quad tendon 30K platelets. I cannot imagine a shot being more troublesome than the above.

[Marlene]

I am pasting this from the American Family Physician's website on B12. This is the section on the efficacy of oral B12. So in case you cannot get the shot or they won't do a loading dosage, you'll see that you'll be OK with oral doses also. At some point, you will have to add the other B vitamins.


Oral vs. Parenteral Therapy
Because most clinicians are generally unaware that oral vitamin B12 therapy is effective, the traditional treatment for B12 deficiency has been intramuscular injections. However, since as early as 1968, oral vitamin B12 has been shown to have an efficacy equal to that of injections in the treatment of pernicious anemia and other B12 deficiency states. Although the majority of dietary vitamin B12 is absorbed in the terminal ileum through a complex with intrinsic factor, evidence for the previously mentioned alternate transport system is mounting.

In one study,18 38 patients with vitamin B12 deficiency were randomized to receive oral or parenteral therapy. Patients in the parenteral therapy group received 1,000 mcg of vitamin B12 intramuscularly on days 1, 3, 7, 10, 14, 21, 30, 60, and 90, while those in the oral treatment group received 2,000 mcg daily for 120 days. At the end of 120 days, patients who received oral therapy had significantly higher serum vitamin B12 levels and lower methyl-malonic acid levels than those in the parenteral therapy group. The actual transport mechanism used in this pathway remains unproved, but vitamin B12 is thought to be absorbed “en masse” in high doses. Surprisingly, one study20 showed that even in patients who had undergone gastrectomy, vitamin B12 deficiency could be easily reversed with oral supplementation.



Intramuscular injections, although safe and inexpensive, have several drawbacks. Injections are painful, medical personnel giving the injections are placed at risk of needlestick injuries, and administration of intramuscular injections often adds to the cost of therapy. Treatment schedules for intramuscular administration vary widely but usually consist of initial loading doses followed by monthly maintenance injections. One regimen consists of daily injections of 1,000 mcg for one to two weeks, then a maintenance dose of 1,000 mcg every one to three months.

Although the daily requirement of vitamin B12 is approximately 2 mcg, the initial oral replacement dosage consists of a single daily dose of 1,000 to 2,000 mcg (Table 4). This high dose is required because of the variable absorption of oral vitamin B12 in doses of 500 mcg or less.19 This regimen has been shown to be safe, cost-effective, and well tolerated by patients.

[julestheo]

Hi Laura,
Firstly wish you good luck with your platelets and hope they recover soon! I agree with Marlene she has given good advice my platelets started dropping quite significantly a few months ago, I asked my dr's about B12 should I be having it and they told me no, then I approached another one of my dr's and told her that I had read that the medication I take may affect B12 absorption as I have gastritis and take ant-acid meds she heard what I said and did a blood test to check B12 levels which came back low, I was then given B12 shots over a 2 week period (think I had 6 in all) and they did blood test couple of weeks later and my B12 levels had risen my platelets now are 120k and I will continue with a B12 shot every 3 months. Hope this helps.

[Laura]

I Will comment on the posts later...just wanted to FYI...my plts today are 17. I got a call from my bmt doctor. He ordered plts for today. All test so far are coming back normal. antibody against platelets is not back. I guess my SSA-RO antibody came back high. Normal below one. Mine at eight. Not sure if connected or not...or false positive. Anyhow he wants me to start prednisone 60 mg. daily. Along with fluconazole, bactrim, and protonix. I am not sure I should rush into that or not...he also now wants bmb. Will the prednisone scew the results? I have to figure this all out. Need to run off as my transfusion is in ten minutes and its thiry minutes to get there. Will write more later. Also sorry for any typos on my phone and its new so still trying to fiure it all out.

[evansmom]

Good to know the transplant team is finally stepping up...we could have predicted this further drop but they don't seem to think further ahead than their own noses.

I would go with the prednisone and protective meds as they have suggested. You could potentially be at a critical time where you are losing the graft and the window of opportunity to rescue could be getting very narrow. I wouldn't worry about the meds skewing the BMB results.

If this is an antibody issue, the prednisone should help that too.

At least they are taking this more seriously now and doing something. I do not know what an SSA-RO antibody is so will look into that now.

Hang in there,

Nicole

[Lisa V]

Well at least your transplant doctor is finally waking up and smelling the coffee! How could he not, with a drop like that? I sure hope they find some other explanation (and remedy) for it, but why would they not want to at least rule out the possibility of relapse or graft rejection first?

Are you still going to make the trip to Dana Farber?

[evansmom]

Thromb Haemost. 1994 Feb;71(2):184-7.
High-titer antinuclear antibodies, anti-SSA/Ro antibodies and anti-nuclear RNP antibodies in patients with idiopathic thrombocytopenic purpura.
Kurata Y, Miyagawa S, Kosugi S, Kashiwagi H, Honda S, Mizutani H, Tomiyama Y, Kanayama Y, Matsuzawa Y.
SourceDepartment of Blood Transfusion, Osaka University Hospital, Japan.

Abstract
The clinical significance of high-titer antinuclear antibodies (ANA) and autoantibodies to cellular antigens such as SSA/Ro and nuclear RNP (nRNP) antigens in idiopathic thrombocytopenic purpura (ITP) was examined in a prospective evaluation of 66 adult patients with chronic ITP. ANA were positive in 29 (44%) of 66 patients with chronic ITP. The titers of ANA were high (1:160 or higher) in 14 of 29 ANA-positive patients. Furthermore, 10 of 66 patients had precipitating antibodies to nuclear antigens; seven patients had anti-SSA/Ro antibodies and the other three had anti-nRNP antibodies. None of high-titer ANA- or precipitating antibody-positive patients developed systemic lupus erythematosus (SLE) throughout the follow-up period of 3 years. In addition, we investigated retrospectively precipitating antibodies in stocked sera from 8 patients. These patients had already precipitating antibodies average of 7.7 years before. None of 8 patients developed SLE or Sjogren's syndrome (SS). These data demonstrate that high-titer ANA and antibodies to SSA/Ro or nRNP antigens are often found in patients with ITP, and indicate that the detection of high-titer ANA or the existence of antibodies to SSA/Ro or nRNP antigens by itself is not enough to identify those patients with ITP who are at risk of developing SLE or SS.

PMID: 8191396 [PubMed - indexed for MEDLINE]
Publication Types, MeSH Terms, SubstancesPublication Types
Research Support, Non-U.S. Gov't
MeSH Terms
Adult
Aged
Antibodies, Antinuclear/blood*
Autoantigens
Chronic Disease
Female
Humans
Lupus Erythematosus, Systemic/etiology
Male
Middle Aged
Precipitin Tests
Purpura, Thrombocytopenic, Idiopathic/complications
Purpura, Thrombocytopenic, Idiopathic/immunology*
Sjogren's Syndrome/etiology
Time Factors
snRNP Core Proteins
Substances
Antibodies, Antinuclear
Autoantigens
SS-A antibodies
snRNP Core Proteins
LinkOut - more resourcesMedical
Platelet Disorders - MedlinePlus Health Information

[Laura]

Originally Posted by evansmom

Good to know the transplant team is finally stepping up...we could have predicted this further drop but they don't seem to think further ahead than their own noses.

I would go with the prednisone and protective meds as they have suggested. You could potentially be at a critical time where you are losing the graft and the window of opportunity to rescue could be getting very narrow. I wouldn't worry about the meds skewing the BMB results.

If this is an antibody issue, the prednisone should help that too.

At least they are taking this more seriously now and doing something. I do not know what an SSA-RO antibody is so will look into that now.

Hang in there,

Nicole

While getting transfused I got my labs...no printer so wrote them down...

6/13---6/10---6/8
WBC 4.8 5.3 8.1
HGB 12.7 12.9 14.0
MCV 102.3 103.4 102.3
PLT 17 49 65
ANC 1.65 1.73 2.43
LYMPHS 2.68 2.93 4.91

Anyone else notice a trend?

From 6/10:
From my type and cross I for the first time EVER had antibodies show up:
"Antibody reacts with glycoprotein IIb/IIIa, glycoprotein Ib/Ix, glycoprotein Ia/IIa"

Prothrombin 9.4 (9.5-13.8)
INR 0.8 (0.8-1.2)
APTT 25 (28-38)
Creatine Kinase 27 (38-176)

SS-A/ROAb, IgG, S >8.0 (<1.0)
SS-B/La Ab, IgG, S 0.3 (<1.0)
RNP Ab, IgG, S <0.2 (<1.0)
Sm Ab, IgG, S <0.2 (<1.0)
Jo 1 Ab, IgG, S <0.2 (<1.0)
Sc1 70 Ab, IgG, S (Although I can't read my hand writing so may be different) <2.0 (<1.0)

So I got the transfusion. But by the time I showed up for plts I had petechiae all over and multiple more purple bruises. Never in my career of low plts have I ever looked like that before. So I am sure they were even lower...

After that I picked up the Prednisone, etc. The doctors office stressed the importance of starting STAT. So I already took 60 mg of Prednisone (daily dose). Also prescribed what I wrote below.

So I guess it's a wait and see game right now...will reply to other posts in new messages...

Thanks again to everyone...

[Laura]

Originally Posted by evansmom

Thromb Haemost. 1994 Feb;71(2):184-7.
High-titer antinuclear antibodies, anti-SSA/Ro antibodies and anti-nuclear RNP antibodies in patients with idiopathic thrombocytopenic purpura.
Kurata Y, Miyagawa S, Kosugi S, Kashiwagi H, Honda S, Mizutani H, Tomiyama Y, Kanayama Y, Matsuzawa Y.
SourceDepartment of Blood Transfusion, Osaka University Hospital, Japan.

Abstract
The clinical significance of high-titer antinuclear antibodies (ANA) and autoantibodies to cellular antigens such as SSA/Ro and nuclear RNP (nRNP) antigens in idiopathic thrombocytopenic purpura (ITP) was examined in a prospective evaluation of 66 adult patients with chronic ITP. ANA were positive in 29 (44%) of 66 patients with chronic ITP. The titers of ANA were high (1:160 or higher) in 14 of 29 ANA-positive patients. Furthermore, 10 of 66 patients had precipitating antibodies to nuclear antigens; seven patients had anti-SSA/Ro antibodies and the other three had anti-nRNP antibodies. None of high-titer ANA- or precipitating antibody-positive patients developed systemic lupus erythematosus (SLE) throughout the follow-up period of 3 years. In addition, we investigated retrospectively precipitating antibodies in stocked sera from 8 patients. These patients had already precipitating antibodies average of 7.7 years before. None of 8 patients developed SLE or Sjogren's syndrome (SS). These data demonstrate that high-titer ANA and antibodies to SSA/Ro or nRNP antigens are often found in patients with ITP, and indicate that the detection of high-titer ANA or the existence of antibodies to SSA/Ro or nRNP antigens by itself is not enough to identify those patients with ITP who are at risk of developing SLE or SS.

PMID: 8191396 [PubMed - indexed for MEDLINE]
Publication Types, MeSH Terms, SubstancesPublication Types
Research Support, Non-U.S. Gov't
MeSH Terms
Adult
Aged
Antibodies, Antinuclear/blood*
Autoantigens
Chronic Disease
Female
Humans
Lupus Erythematosus, Systemic/etiology
Male
Middle Aged
Precipitin Tests
Purpura, Thrombocytopenic, Idiopathic/complications
Purpura, Thrombocytopenic, Idiopathic/immunology*
Sjogren's Syndrome/etiology
Time Factors
snRNP Core Proteins
Substances
Antibodies, Antinuclear
Autoantigens
SS-A antibodies
snRNP Core Proteins
LinkOut - more resourcesMedical
Platelet Disorders - MedlinePlus Health Information

Thanks so much!!! Going to pass it on to the providers!!!!

[Laura]

Originally Posted by Lisa V

Well at least your transplant doctor is finally waking up and smelling the coffee! How could he not, with a drop like that? I sure hope they find some other explanation (and remedy) for it, but why would they not want to at least rule out the possibility of relapse or graft rejection first?

Are you still going to make the trip to Dana Farber?

Hi Lisa,'
I agree...I think they should at least rule those things out....

Totally going to DF. Plane is leaving tomorrow...

Laura

[squirrellypoo]

Originally Posted by Laura

Totally going to DF. Plane is leaving tomorrow...Laura

I'm so glad to hear this! Fingers crossed and hugs and best wishes for you... And now you can come armed with these latest results and medical studies and B12 info for them, too!

[tserdogan]

Laura,

I wish you patience again,i hope prednisone will raise your plt.
Wait and see procedure always boring but don't forget if it decreased easily,it can raise easily.
Maybe it is about engraftment,remember me i took more stem cell after transplant.

[evansmom]

Travel safe and best wishes Laura. Let DF know there are many people putting a lot of hope on them for you.

Update when you can.

[Marlene]

Good luck at DF Laura. Make sure they address the B12 in all this. You will need it to recover blood counts.