Trepidation

Hi all, wishing you all the best.
I had gotten some good news on Tuesday. Finally the funding came through for Rituxan.
Only I will have it done to my surprise at a private clinic not the cancer center.
I am uneasy about that.
I had IVIG in a hospital and things still went very wrong. I have several auto-immune diagnosis and I think it's the immunoglobulin stuff that caused the IVIG reaction. I think it was anaphylaxis. Fell to the floor, was picked up and put on a bed, with a flurry of nurses and doctors...I could not move, I was stiff, but I could hear everything and see everything. They were saying has this ever happened before...no this has never happened before...and the rest just medical stuff just medical talk and procedures. My chest hurt so bad and my lower back and legs. I was given many injections of benadryl and morphine before I went to sleep. It was pain I will never forget. After waking up late that evening I was allowed to go home after a while but they sent a paper with me with everything on it that they had given me which told me that they had no clue but that there could be another reaction at home... It was terrifying and I was and am angry as it states clearly on the IVIG package label in a black box that there are contraindications for persons with IgA and IgG problems and I had even told the immunologist that ordered it and the nursing staff that administered it, but everyone dismissed my concerns. in fact they started the IV and left me in a little room by myself! Such a botch job.
So I have told my hemo this story several times but I don't think she even hears me and the Rituxan has far worse reaction possibilities than the IVIG. It's like she has one job and that is to stop the destruction of the platelets and so disregards everything else. Only how can she disregard my crazy little body? I'd rather have low platelets for a while than be dead or brain dead right now. I think I deserve the right to discuss that with her.
I am not saying everything can be predicted, and that's why the statements on drugs are warnings not for sures. But I can't help think my hemo just doesn't want to know.
I say what if I wasn't lucky last time? My brother in law was stung by a bee one day taking his father fishing, he didn't even know he had issues with bees, but he still died that day. He wasn't lucky.
What if I wasn't lucky with the IVIG? Shouldn't somebody be considering that? Or is it deliberately being ignored because somebody did something wrong and it's all about law suits?
I don't get it, thus the trepidation. Sandy Too

Why do the rituxan at all? Why not try promacta or NPlate instead? You are the only one in charge of making treatment choices. If you are that concerned do not do it. You know your body.

yes, that's true, while i am not a stupid person, I don't pretend even to know ITP nor how to treat it or the drugs used to treat it or how they might react with any given auto-immune issue. No amount of research that I could do is enough to take my understanding of any of it to that of a hematologist/oncologist. But they should know.
I would have thought there would have been more one to one, more individualized treatment plan that's all. Seems like as I said they consider the ITP only and use a standard proticoll to treat it and don't discuss the rest. I've tried. Where's that thinking leave any of us with multiple issues. In the dark and on our own.
I do know after eight months and three platelet crashes even with high does pred, the option to just not treat isn't an option for me.
I was not offered any other drug. My hemo and my long time rheumy discussed it together (without me there), and concluded that the Rituxan is the one. thanks Sandy Too

I understand the trepidation.

To avoid being stuck in a room alone without help should a problem occur, don't go alone. Have a buddy to accompany you... One with a loud, strong, insistent voice to summon help if it should be needed.

I agree with Emily..it is your choice and if you aren't sure then don't do it until you are.

Sandy - This is where you have to step in and take charge. I know it's hard to do, but you have to be your own advocate. Just because they didn't offer you other options doesn't mean that other options are not available.

I don't think that medicine is advanced enough to predict who will have reactions. You are right though, they do tend to want to only 'fix' the problem and not look at the big picture. That is a huge pet peeve of mine. The reaction that I had to Rituxan was enough to open my eyes and refuse anything that makes me feel uncomfortable. It's not even short term reactions that scare me so much, it's the fact that they can cause long term damage.

The first time I had serum sickness from Rituxan, it was misdiagnosed in the ER. The doctor told me that I had a virus. I told him repeatedly that I was having Rituxan infusions and it could have something to do with that. If he had bothered to take a look at the reported side effects, he could have properly diagnosed me. Due to his negligence, I had Rituxan again the following year and had serum sickness again. It was worse that time and it changed the entire course of my life. I am not one to automatically trust now and I question everything. You are doing that, but now you have to trust your instincts.

(Serum sickness is often misdiagnosed as a virus. I have seen it here a few times. Classic symptoms within the classic time frame and they miss what it is. Then they still insist on giving the patient the rest of the infusions. Drives me nuts!)

thanks everyone,
So if I understand it, the other options are to treat with drugs that assist in making platelets, unlike the rituxan that stops the body from destroying them (I mean if the treatment works)
but if my auto-immune system (lupus I was told is the culprit) is what is destroying the platelets
then wouldn't using the NPlate and Prom?? be a waste of time?...I mean my own body would just keep destroying any progress?
Sandi what other option would you think is a good option for multiple auto-immune folks?
thanks Sandy Too

I haven't seen any of the lupus people using and succeeding with nplate and promacta - have you Sandi?
Erica

Sandy - I think people tend to over-think the destruction vs production thing. Most people with ITP have both problems. There is no way at this time to test people to see which one is the bigger problem. Unfortunately, the only thing to do is try the treatments and see what happens.

Lupus isn't really the culprit. You have ITP, which is just a symptom of Lupus, meaning that Lupus and ITP commonly go together. Having Lupus wouldn't mean that you'd have to treat any differently than someone who doesn't have Lupus based on what is known about production vs destruction at this time. However, you would want to be more cautious with which treatments to use. For example, I often have low white counts so using a strong immunosuppressant would make me uncomfortable. Also, if someone with Lupus has ever had a blood clot due to Antiphospholipid Antibodies or even has the antibodies, they may want to think twice about using the TPO's. The doctors might not blink twice at suggesting those for someone with those problems, but that is where we have to step in and speak up. I was pressured into Benlysta for years but kept turning it down. MY choice.

I wish I had a magic answer for you about what treatment to choose, but I don't. I made choices based on what I thought was best and there were consequences. It was my choice though...I couldn't blame my doctor because I suggested Rituxan to him. All you can do is research the options as much as possible and make an informed decision. Write them all down. You already know what you don't want for sure...more Prednisone. Cross that off the list and work from there.

I don't think trying the TPO's is ever a waste of time. I will say that. They have a high success rate and few over all side effects. The trick is getting a doctor who can dose it correctly.

Erica - we've had few Lupus people here in the past few years, and I don't remember any who have used the TPO's. They usually breeze in and out.

Oh, wait. We had a teenager who was borderline Lupus who used N-Plate successfully for years. Remember Caitlin the cheerleader?

Didn't her mom post under a name like 'CaitlinsMom' or something like that?

I thought I would post what I found when I researched TPO's and Lupus.
It is a very interesting and informative article entitled "Successful Treatment of Amegakaryocytic Thrombocytopenia With Eltrombopag in a Patient With Systemic Lupus Erythematosus (SLE)"
by Iva Cela MD and several other physicians.
It has given me even more reason to think that perhaps the TPO's are a good possible first try.
I have had no bone aspiration but I have been told that my platelets rise very quickly and very high on prednisone. (and I have seen it) Then drop as quickly off the prednisone. So I would think I would have no reason why the TPO's could not work according to this article. It even seems silly not to try this first?...oh....for the ITP anyway. But perhaps the reason for the definite decision by my doctors for Rituxan is to shut down the SLE as well....as I am also told the SLE is my reason for ITP. perhaps the concern to use the TPO's alone is what I mentioned in the beginning of this post...that the Lupus would just keep destroying the platelets even if I was able to produce them much faster with the TPO's. Perhaps after the Rituxan knocks down the inflammation and the Lupus is more controlled, then maybe the TPO's can help after that.
...that's a big thought...whether I am even close to knowing what I am thinking is another
story.... :laugh: thanks Sandy Too

Caitlin's mom is tacmom (Pauline).
pdsa.org/forum-sp-534/6-general-itp-discussion/28441-update-it-s-been-a-long-time-since-i-ve-visited.html#45264

eklein wrote: Didn't her mom post under a name like 'CaitlinsMom' or something like that?

Maybe. I think her name was Pauline and that's what I remember. Her daughter met all of the Lupus criteria and they even treated her with Plaquenil, but she didn't quite get the diagnosis. Not sure why.


EDIT: I wrote this before I read Rob's post. That's what I get for skipping ahead.

Rituxan was initially developed for use in people with lymphoma (a type of B lymphocyte cancer), but the drug was subsequently approved for treating rheumatoid arthritis. Several clinical research studies looked at the use of Rituxan and a second generation antibody, known as ocrelizumab, to treat people with either lupus or lupus nephritis (lupus kidney disease). However, these clinical trials were not successful.

Many doctors still feel that Rituxan may be effective for certain manifestations of lupus and that the clinical trial failures were, in part, related to issues with trial design. A study of Rituxan as a treatment for people with vasculitis, an inflammatory condition of the blood vessels, led to approval of Rituxan for “ANCA-associated vasculitis.” Thus, Rituxan is now approved by the Food and Drug Administration as a treatment for rheumatoid arthritis and vasculitis. Rituxan may have a role for certain individuals with lupus, and further clinical research is being pursued.


www.lupus.org/answers/entry/what-do-i-need-to-know-about-rituxan-and-lupus

Hi Sandy Too,

I've been a lurker on these boards for years. I have Lupus and ITP. Lupus was diagnosed in 1995 when I was 17 years old, and the ITP was diagnosed in 1998 when I was 20. I've also had TTP as well, although not in many years.

Within the last 4 years, I have treated with Prednisone, Dexamethasone, IVIG, and Rituxan. The Rituxan was done 2 years in a row - first remission lasted about 11 months. The most recent remission has lasted now 2 years. In my personal opinion, the Rituxan has done nothing for my lupus as my lab results continue to be abnormally high, even though I currently have no lupus symptoms. It also seems to do the trick for the ITP as well. And yes, while my ITP is a result of the Lupus, I do not treat them together. My hematologist treats my ITP independently of the Lupus.

I, unfortunately, am one of the few here who have had serum sickness - twice. The first time, it happened after my 3rd infusion of Rituxan. Several days post the 3rd infusion, I spiked a fever and had the most horrific joint pain, so bad I could barely move. I took Dexamethasone and the symptoms sub-sided rather quickly. I went on to have the 4th infusion (doctor wasn't sure it was serum sickness and I didn't know better at the time) but had no problems with that last infusion.

Fast forward one year, platelets drop to 3K and I go in for another 4 rounds of Rituxan. Did fine with infusion #1 and #2. However, developed same symptoms (fever, joint pain), took Dexamethasone again and symptoms resolved overnight. I then went in for Rituxan infusion #3, and only made is 2/3rds through before I developed hives all over and my throat became swollen. They stopped the infusion and had to give me IV benadryl, cortisone, and solu-medrol to stop the reaction. Needless to say, I did not finish infusion #3 and did not get infusion #4. I will also never get Rituxan again unless it is my only option, and I'm given IV Solu-Medrol simultaneously to prevent a reaction.

I must say, Rituxan does work for my ITP. My counts have hovered in the 150 - 170 range these past 2 years and that is as high as they've ever been in the last 20 years.

My hematologist and I have discussed possible treatment options for future relapses, and frankly none of the options sound good to me. He knows I do not wish to treat unless my count drops below 30 (when I begin to have symptoms) so we're both on the same page there.

Interestingly, I saw a new rheumatologist recently as my previous one moved out of state, and the new rheumy suggested Benlysta as a possible treatment option. With my history of serum sickness/allergy to Rituxan, I told him absolutely not.

Also, I've never tried the TPO's as I've had lab work in the past that was positive for anticoagulant antibodies.

Sandy and the folks on this board are absolutely correct - you must be an advocate for yourself. I ask many questions and do research. I'm lucky that I have a wonderful hematologist who respects my opinion and we truly "discuss" treatment options. It is never a one-sided conversation.

Good luck with your treatment decisions. They are never easy to make.

~Lauren

Sandy, Lauren's post is interesting. Maybe it would be good to discuss with your docs how they might be able to help you if you come down with symptoms like Lauren's a day or two after an infusion? For example, can they prescribe Solu-Medrol or Dex tablets ahead of time so as not mess with your local hospital, or ?

Laurwynn,
My understanding is that Benlysta is a human monoclonal antibody, so in theory it should not cause serum sickness. Rituxan has a murine (mouse) component to it, which is why it can cause serum sickness.

In case your ITP remission comes to an end, there is a purely human anti-CD20 human monoclonal antibody which may work for you to replace Rituxan for your ITP treatment. It is called ofatumumab (Arzerra). Its use for ITP would be off-label.
www.pdsa.org/forum-sp-534/7-treatment-general/27608-alternative-to-rituximab-ofatumumab.html

Thanks again for the info and for your patience...
I think the problem here for me is there just has not been near enough dialogue.
My rheumy is wonderful we work well together. But she is not running the ITP show.
My hemo is and as much as I like her, the dialogue is just not there. I have only had three very short visits with her and they were all initial visits to figure out what I had and why.
But as for visits about the treatment, Rituxan, there has been nothing.
Plus I am now suddenly told the infusion would be given out of hospital at a private clinic, and not even at the same clinic as they can't get me in to the same one for all the infusions!
My platelets are now at 60, I assume they will continue to drop, and the concern for me is rising to get this started, but I can't allow myself to go forward without any information.
I got a call yesterday and my schedule starts next week! I can't see me getting the answers I need in a week, I can't even get them to return my call. So frustrating...and worrisome.
I will call my rheumy and then the hematology cancer clinic again.
As of now there will be no infusions started December 5th!
Heart breaking. thanks Sandy Too

Lauren:

A person who has had serum sickness from a drug should never use that drug again. The symptoms can get worse each time. Since it seems to develop while people are at home, mine happened in the middle of the night both times, there is a risk of anaphylactic shock with no help available. It blows my mind that doctors continue to use a drug that causes serum sickness for that patient. My logic is that people are using a drug to treat a disorder that will most likely not cause death, yet the treatment itself can. You are yet another example of a person with ITP and Lupus who has had serum sickness from Rituxan. I'm glad you joined us!

Rob:

Yes, Benlysta is a human monoclonal antibody but there have been cases of serum sickness from using it. I won't try it for that reason. After my Rheumatologist came across that info, she stopped bugging me about it (3 years later).

Hal:

Serum sickness can occur 10 to 21 days after the first infusion, so trying to stop the reaction with steroids would be difficult. Everything I have read says that there is no way to prevent it. I had Solumedrol IV's with my Rituxan infusions and it didn't help. I also took steroids immediately after the reaction and it took days to resolve.

Sandy Too:

I have just read that serum sickness is dose-dependent. That means that with a lower dose of a medication there is less chance of having a serum-sickness reaction. Have you discussed the low-dose protocol for Rituxan with your hematologist?

emedicine.medscape.com/article/332032-overview#a6
"The likelihood of developing serum sickness is dose-related. In one study, 10% of patients who received 10 mL of tetanus antitoxin developed serum sickness; the administration of 80 mL or more produced the disease in almost all patients."

Sandi:

Last year you wrote,

www.pdsa.org/forum-sp-534/20-lupus/28543-blame-it-on-lupus.html?start=90#49279
As far as serum sickness, no, I don't think having had it makes a person more susceptible unless they have a sensitivity to a particular drug. I can take antibiotics known to cause serum sickness and not have a problem. I don't want to guinea pig myself for Benlysta though because those biologicals scare me enough as it is.

So far, I haven't found any information on whether a serum sickness reaction to one drug makes a person more susceptible to a similar reaction to another drug on the list.

I am still trying to confirm that there have been cases of serum sickness with Benlysta (and perhaps Arzerra) despite them being fully human monoclonal antibodies.

Along the way, I found a long list of drugs that are known to cause serum sickness, including some very common drugs. Interestingly, many of these drugs also appear on lists of drugs that cause DITP (drug-induced thrombocytopenia purpura).

emedicine.medscape.com/article/332032-overview#a5
Currently, the most common cause of serum sickness is hypersensitivity reaction to drugs. [5] Drugs containing proteins of other species include the following:
Antitoxins, Antivenins
Hormones from other species
Streptokinase
Vaccines

Polyclonal and monoclonal antibodies prepared from horse, rabbit, or mouse serum (eg, antithymocyte globulin, OKT-3) have also been found to cause serum sickness. [6]

Antibiotics and other antimicrobials that can cause serum sickness include the following:
Cephalosporins, Ciprofloxacin, Furazolidone (Furoxone), Griseofulvin, Lincomycin, Metronidazole, Para-aminosalicylic acid, Penicillins, Streptomycin, Sulfonamides, Tetracyclines

Other drugs associated with serum sickness include the following:
Allopurinol, Barbiturates, Bupropion, Captopril, Carbamazepine, Fluoxetine, Gold salts, Halothane, Hydantoins (eg, phenytoin), Hydralazine (Apresoline), Indomethacin, Iodides, Iron dextran, Methimazole, Methyldopa, Penicillamine, Procainamide, Procarbazine, Propranolol, Thiouracil

SandyToo I I don't know if you can access medicines.org.uk from your part of the world if you can there's a thorough description on the SPC section .Have copied a tiny fraction of it plus the excipients of rutuximab for comparison.

Benlysta
Infusion reactions and hypersensitivity: The incidence of infusion reactions and hypersensitivity reactions occurring during or on the same day as an infusion was 17% .
These reactions were generally observed on the day of infusion, but acute hypersensitivity reactions may also occur on the day after dosing. Patients with a history of multiple drug allergies or significant hypersensitivity reactions may be at increased risk.

Contraindications
Hypersensitivity to the active substance or to any of the excipients listed which are
Citric acid monohydrate (E330)
Sodium citrate (E331)
Sucrose
Polysorbate 80


List of excipients for Rituximab
Sodium citrate
Polysorbate 80
Sodium chloride
Sodium hydroxide
Hydrochloric acid
Water for injections

Rob, I did talk to my rheumy about low dose and she felt that it was a possible option for me, but said that how she prescribes Rituxan in rheumatology is far different from that of hematology. When I discussed it briefly with my hematologist she said no, that the 375 mg dose is what is used for ITP and what she would be ordering.

So not a good day today. I did get to talk to my rheumy's office. The reception there is very good and said my rheumy will be calling me. She too understood my concerns.
I got another call from Roche, they had called to set up the infusion dates yesterday and I spoke to her also about my concerns and that I would at the very least like this done in a hospital.
She didn't seem to think it was a problem, but when she got back to me today she said she could not get hold of my hematologist either.
I called the drug access coordinator at the cancer center again as she was supposed to do the same and get back over a week ago and didn't. (??? :dry: )
So I called my hemo's office again, left another message....
Then I called the infusion clinic and asked about procedure there, and if there is a doctor on site at all times. That did not go well, I got a vague "usually" and an "at least a general practitioner I would think"....I did not bother to ask if they would have access to my past bad drug experiences...
Finally I called patient records, and ordered my records from the IVIG. If they don't help at the very least perhaps I will find out what happened that day.
Here I sit still waiting for some answers.
Roche is calling me back tomorrow as they need to know if I will still need the clinic dates set so she can order the drug. Not too much pressure! But I know now I will not be taking this infusion Dec 5 or any other day until I know what's going on about it...and with the "team" I am working with...
It almost seems like they are distancing themselves, has all this confusion been created by/for some hospital legality strategy or something???? Gees! thanks Sandy Too

Rob16 wrote:
Sandi:

Last year you wrote,

www.pdsa.org/forum-sp-534/20-lupus/28543-blame-it-on-lupus.html?start=90#49279
As far as serum sickness, no, I don't think having had it makes a person more susceptible unless they have a sensitivity to a particular drug. I can take antibiotics known to cause serum sickness and not have a problem. I don't want to guinea pig myself for Benlysta though because those biologicals scare me enough as it is.

So far, I haven't found any information on whether a serum sickness reaction to one drug makes a person more susceptible to a similar reaction to another drug on the list.

Rob, I still stand by that statement. I don't think that having serum sickness after one drug will necessarily cause serum sickness after using another drug known to cause it. I have no problem using Penicillin and some other drugs known to cause serum sickness. I'm on Amoxicillin right now. However, I have a huge BUT! My 'but' is a personal decision. I decide what I deem to be safe for me. I'll admit, any monoclonal antibody scares me and I won't go near them. I understand the difference between Rituxan and Benlysta, I really do. But I also understand the similarities. It's simply a matter of the risk not being worth it to me. A third reaction could kill me, it was close the second time. Not having Benlysta didn't kill me.

These days, I try to stick with meds that I am familiar with and have taken before. I am alone most of the time now and if something happens, there is no help.

Sandy:

The thing is, the dose of Rituxan for ITP was initially based on the dose used for lymphoma, with no real basis for that particular dose. That was the standard dose for years, until they began to study results of a lower dose. They concluded that it worked just as well as the higher dose, and that four infusions were not even necessary. I hate saying 'they', but that's what 'they' said.

If a doctor insists that the higher dose and four infusions are necessary, I just assume that he hasn't read the latest studies (not so recent any more). If he has, I couldn't possibly imagine his reasons for not wanting to try it.

I remember when the first patients in the country used Rituxan for ITP. One of our members kept a scoreboard here. It was a spread sheet that showed results. Slowly, the people from this forum began to jump in. I did too a year later, and was the first in my hemo's office to use Rituxan for ITP. That was in 2003. Sadly, the member who kept the scoreboard had a wife with ITP and she died. Not due to ITP, but from immunosuppression resulting in sepsis from the treatments.

mrsb04 wrote: SandyToo I I don't know if you can access medicines.org.uk from your part of the world if you can there's a thorough description on the SPC section .Have copied a tiny fraction of it plus the excipients of rutuximab for comparison.

Interesting. I wonder what the hypersensitivity reactions were? They never give enough detail.

Rob:


Allergic (hypersensitivity) and infusion reactions: Serious allergic or infusion reactions can happen on the day of or days after receiving BENLYSTA and may cause death. Your healthcare provider will watch you closely while you are receiving BENLYSTA and after your infusion for signs of a reaction. Allergic reactions can sometimes be delayed; tell your healthcare professional right away if you have any of the following symptoms of a reaction: itching; swelling of the face, lips, mouth, tongue, or throat; trouble breathing; anxiousness; low blood pressure; dizziness or fainting; headache; nausea; or skin rash, redness, or swelling. Tell your healthcare professional or get emergency medical help right away if you have any of these symptoms.

www.benlysta.com/guide/index.html?bing=p_&rotation=71700000006609520&banner=58700000274139567&kw=4643729891&cc=C6C455C2AF7F&pid=43700004643729891

HYPERSENSITIVITY REACTIONS, INCLUDING ANAPHYLAXIS

Acute hypersensitivity reactions, including anaphylaxis and death, have been reported in association with BENLYSTA. These events generally occurred within hours of the infusion; however, they may occur later. Non-acute hypersensitivity reactions including rash, nausea, fatigue, myalgia, headache, and facial edema, have been reported and typically occurred up to a week following the most recent infusion. Hypersensitivity, including serious reactions, has occurred in patients who have previously tolerated infusions of BENLYSTA. Limited data suggest that patients with a history of multiple drug allergies or significant hypersensitivity may be at increased risk. In the controlled clinical trials, hypersensitivity reactions occurring on the day of the infusion were reported in 13% (191/1458) and 11% (76/675) of patients receiving BENLYSTA and placebo, respectively. Anaphylaxis was observed in 0.6% (9/1458) and 0.4% (3/675) of patients receiving BENLYSTA and placebo, respectively. Manifestations included hypotension, angioedema, urticaria or other rash, pruritus, and dyspnea.

Due to overlap in signs and symptoms, it was not possible to distinguish between hypersensitivity reactions and infusion reactions in all cases. Some patients (13%) received premedication, which may have mitigated or masked a hypersensitivity response. There is insufficient evidence to determine whether premedication diminishes the frequency or severity of these reactions.

Healthcare providers should be aware of the risk of hypersensitivity reactions and be prepared to manage anaphylaxis. In the event of a serious hypersensitivity reaction, discontinue BENLYSTA immediately and administer appropriate medical therapy. Patients should be monitored during and for an appropriate period of time after administration of BENLYSTA, be informed of the signs and symptoms of an acute hypersensitivity reaction, and be instructed to seek immediate medical care should a reaction occur.

www.gsksource.com/pharma/content/gsk/source/us/en/brands/benlysta/pi/product-overview.html

They don't exactly come out and say serum sickness, but this is close enough for me. My Rheumatologist said she saw the info. I didn't question the source because I already believed in the possibility. 'Hypersensitivity' is all I need to see to say no and the symptoms are close enough.

I read that the excipient polysorbate 80 is a potential allergenic. It is found in the following biologicals:

www.jiaci.org/issues/vol24issue4/1.pdf
adalimumab, infliximab, omalizumab, alemtuzumab, natalizumab, tocilizumab, canakinumab, belimumab.

Rituximab was omitted from the list, but:

www.drugs.com/ppa/rituximab.html
Polysorbate 80: Some dosage forms [of rituximab] may contain polysorbate 80 (also known as Tweens). Hypersensitivity reactions, usually a delayed reaction, have been reported following exposure to pharmaceutical products containing polysorbate 80 in certain individuals (Isaksson 2002; Lucente 2000; Shelley 1995).

Sandi, I will let you connect the dots between polysorbate 80 and vaccines!

I don't understand this discussion about reactions at all. I am not a chemist. I don't know what an
SPC section is or an excipient. I never wanted to. Is that what I have to do now? Are things so bad with regard to treatment options with ITP, between physicians and patients that the patient has to become the physician? Why no trust?

Question: Why can't ITP patients trust that their physicians will taylor a treatment plan that is the best for them individually?

Also my question about the infusion protocol, where does everyone get their infusions done? Has it been at a hospital?

thanks, Sandy Too