Getting Platelets side effects?

This was the first time I have gotten Platelets, I got 4 regular side bags and a double. Plus I got 2 days of IVIG's. Wanted to know how people felt with the side effects if any. I got home yesterday for hospital for the 3 day stay. This morning my dog got me up, good thing I started to have bad heart burn/gas, but that could be from my husband taking me to get real food. I do feel much better after some tums, just wanted some input on how everyone felt after words.

Not many of us get platelets. Platelet transfusions are not a recommended treatment for chronic itp. They usually only last a few hours and might be used for example for emergency surgery. If your body is eating platelets, like when your counts are low, then feeding it extra seems to result in a feeding frenzy. Since most people getting platelets are in some medical crisis, they may not be in a position to report on any side effects, but I don't ever remember seeing anything about platelet side effects.
Erica

I got platelets once when I was in the hospital. I didn't have any side effects. But, usually they are not given as they don't really help..as Erica said. I don't think they could cause heart burn, more likely the food did that.

I was thinking it was food also. But Yes I was in the hospital with counts 1k, 1k, 2k, then after lots of platelets and 2 rounds of IVIG's tested at 29, 29, 30 all in the same day.

Same as the others for me. Never had platelets. Was told that I'd only get them for serious internal bleeding issues. And I have never been hospitalised at counts of 1 and 2 either. Most aren't so I doubt you'll get much of a response.

I got platelets twice when I was in the hospital with a count of 2. I don't think I had any side effects after the first bag, but with the second bag, I got really flushed and felt super warm, but no fever or anything.

Could be the Dex causing the heartburn.

Reactions to platelet transfusions:


Fever and Chills

Blood platelet transfusion can cause approximately 1 to 2 percent of patients to develop fever or chills, according to the National Marrow Donor Program. If you develop these symptoms, your doctor might provide you with medication to help prevent this reaction from occurring during future platelet transfusions.


Immune-Mediated Platelet Destruction

In certain cases, your body may be resistant to the platelet transfusion---a condition called refractoriness to platelet transfusion. When this occurs, the immune system of the body attacks the platelets given through transfusion. This causes the destruction of the platelets and renders the transfusion treatment ineffective.

Allergic Reaction

The Practice Guidelines for Blood Transfusion published by the American Red Cross in 2007 explains that some patients may experience an allergic reaction during or immediately following the platelet transfusion. Symptoms of an allergic reaction may include itchy skin (urticaria), wheezing or severe swelling beneath the skin (angioedematous). If such a reaction occurs, your doctor will manage these symptoms through the use of medications such as antihistamines, corticosteroids or epinephrine. Severe allergic reaction---a condition called anaphylaxis---may cause significant breathing difficulties and require immediate treatment with corticosteroids and epinephrine.

Transfusion-Related Acute Lung Injury

Blood platelet transfusion may increase the permeability of your lung tissue, which can cause fluid and protein to leak into the lungs. This condition is called transfusion-related acute lung injury (TRALI) and can cause difficulty breathing or damage to the lung tissue. If you develop TRALI after receiving a blood platelet transfusion, your doctor will treat this condition by providing intensive respiratory support.

Graft-vs-Host Disease

Though rare, some patients who receive a blood platelet transfusion can develop graft-vs-host disease (GVHD). Such a reaction is more common in patients who have a depressed immune system due to disease or chemotherapeutic treatment. GVHD occurs when the donated platelets attack the cells within the body of the transfusion recipient. Symptoms of GVHD might include skin rash, jaundice, diarrhea, fever, breathing difficulties or sore joints and tendons. Patients with GVHD are also more susceptible to developing infection or anemia. Treatment of this life-threatening condition may include either taking steroids or additional medications that decrease your body's immune response to stop the donated platelets from attacking the body. Treatment may also vary based upon the location of your symptoms.

www.livestrong.com/article/75549-side-effects-blood-platelet-transfusion/

Bacterial contamination of platelet components is the second most common cause of transfusion-related deaths in the United States. To address this risk, the AABB adopted a standard that requires blood collection and transfusion service members to detect and limit bacterial contamination in all platelet components. However, currently there is no single test used to detect bacteria in platelet units, and regardless of the method, bacterial screening of platelets is unlikely to detect all pathogens.

Bacterial contamination of a blood component usually is not considered in the differential diagnosis of transfusion-related illness because signs and symptoms (including fever, rigors, and change in blood pressure) resemble those expected from either transfusion reaction or from sepsis due to any cause. Gram-positive organisms (e.g. Staphylococcus epidermidis) found on skin are the most frequent contaminants of platelet units. Although less commonly recognized as contaminants, gram-negative bacteria (e.g., Serratia, Enterobacter, Salmonella spp.) cause more severe and often fatal infections.

www.cdc.gov/bloodsafety/bbp/bacterial-contamination-of-platelets.html

I had a platelet transfusions a couple of times. The first time, no side effects. The second time, about 5 minutes after the transfusion, I started to get hot and very itching. I went to the restroom, and I had hives everywhere on my body. I told my nurse, she told me it should go away in a couple of hours...which it did, plus since I was prednisone, it should help with calm down the hives. I was so scared. The hives did go away in about a day. The 3rd time, no side effects.

You should be careful. Reactions can get worse with every subsequent transfusion (even though you didn't have a reaction the third time). There are a lot of risks with platelet transfusions, so be sure you really need one before agreeing to it.

How does one refuse a platelet transfusion when the risk of having a serious bleeding occurs? My dr scares me about internal bleeding, specially in the brain. But, he knows that we should not over do with platelet transfusions since it's possible that one day it will stop working for me. I hope not to be in a situation where I might need to be admitted again since I'm taking Promacta now. One thing for sure, I never allow him to make me stay in the hospital for long...previous times, the transfusion will put me over 20k, then steroids through IV, then I will be discharged with more prednisone or Dex.

counts at 7k today more platelets and steroids he wants to see me at 8:30am. nurse said if counts the same more platelets and steroids. i have rituxan on Wednesday. i am st a loss don't know what else to do??? I want to talk about getting back on Promacta since we really didn't give it a chance to work. But I have had one round on rituxan, can I stop and go back on Promacta or do I haves to do all four rounds of rituxan?

Amber - you don't have to do all four rounds of Rituxan. However, you keep jumping from treatment to treatment and not really giving any of them time to work. I'd make a plan and stick to it. It takes time to see results. I think your plan of Rituxan + Dex was a decent choice given the circumstances.

Slammed - I wouldn't tell you to go AMA. I am saying that proper precautions should be taken to avoid adverse reactions to the platelet transfusions. I'd question the doctor about that and about the necessity of the transfusions. How are your symptoms when counts are low? Do you respond to any treatments in a timely manner? Since people can become refractory to transfusions, you'd want to save them for a time when you really need it.

Counts at 8k this morning. Had a nice long talk with the doctor. Since I am not responding to any of the treatments. Taking my spleen out wouldn't help I would be in the same boat after the surgery. As of the Platelets and Steroids (given 3 days in a row) is the standard to get things jumped started. I am staying on the Rituxan for the 4 rounds (3 more to go) and may add other Chemos on top of it. He said I'm the small % that a lot of treatments do not work, and if I got the spleen out it would be days or months then I would be doing the treatment that we are going with now. So no point in getting it out, also getting vaccinations today just in case of an emergency (bleeding out) and have no choice but to get it out. Also we have given the treatments time to work, like the promacta I was on it almost 3 months and only suppose to be on 2 weeks to see if it will work.

Just like the last time I did Rituxan it lasted 7 months (happy months) but I was in the small % that had lots of dead hair loss (so I shaved it). So now i'm in the small % that things work for awhile then stop working (Dex, IVIG's, Pred). Hoping that round 2 of Rituxan will work even if its for a couple of months. I had a nose bleed last week that last 17 hours that is why they put me in the hospital. But right no bleeding! Its day to day and just go with the flow.

Amber,

Rituxan is NOT a chemotherapy treatment -

www.pdsa.org/treatments/conventional/b-cell-depletion.html

sometimes it is the way we look at or think about things that can make them better or worse

I am sad that you are having such a hard time finding the treatment that will work for you, we all go through it, that is why we are here to listen and vent and HELP!

According to your posts here on PSDA.com, you do respond to Dex and your research about Dex and Rituxan together sounds like it has a chance of working for you - give it a chance and just take in each day with a positive outlook.

When you compare ITP to other autoimmune disorders out there - yes ITP is a pain in the a** - but it is by far not the worst (looking at the bright side )

I do hope you find the treatment that works for you.

Cindy Ann

Yes rituxan is a type of chemo. It is a mild form of chemo.

www.rituxan.com/index.html

Dex alone isn't working but hoping with the rituxan it will do nicely.

Keeping head is key

Amber,

From the website you quoted -

RITUXAN® (Rituximab) is indicated for the treatment of patients with:
Previously untreated follicular, CD20-positive, B-cell NHL in combination with first-line chemotherapy and, in patients achieving a complete or partial response to RITUXAN in combination with chemotherapy, as single-agent maintenance therapy
Non-progressing (including stable disease), low‑grade, CD20‑positive, B‑cell NHL, as a single agent, after first‑line CVP chemotherapy
Relapsed or refractory, low‑grade or follicular, CD20‑positive, B‑cell NHL as a single agent Weekly x4
Weekly x8
Bulky disease
Retreatment

Previously untreated diffuse large B‑cell, CD20‑positive NHL in combination with CHOP or other anthracycline‑based chemotherapy regimens



che·mo·ther·a·py
[kee-moh-ther-uh-pee, kem-oh-] Show IPA

noun Medicine/Medical .
the treatment of disease by means of chemicals that have a specific toxic effect upon the disease-producing microorganisms or that selectively destroy cancerous tissue

ITP is not Cancer

Chemo just doesn't treat cancer.

www.navigatingcancer.com/chemotherapy_drugs/rituximab

ITP is not cancer but some of us have no other choice but to get cancer treatment drugs due to the fact nothing else is work or has stopped wworking

ITP and chemo drugs.

pdsa.org/component/k2/item/95.html?Itemid=117

Amber,

All I am trying to say is that you need to find a way to look at things with a positive twist to help you get through this.

I have had Rituxan and I was one who had a reaction and had to slow the drip to 8 hours each of the 4 infusions, they were given of course in a chemo ward and the people I saw around me were by far worse off than me even thou I was first in and last out.

I hope you don't have to have the Chemo treatments and that the Rituxan/Dex combo works.

Cindy Ann

I am always looking on the bright side. One day at a time but yoy must know that the drugs are chemo drugs and not put your head in the sand. It can always be worse!

Cytoxan and Vincristine are chemo treatments used sometimes for ITP (not often because they are very harsh). Rituxan is not considered to be chemo. It is a biological drug like Humira and Remicade. People mistake Rituxan for a chemo drug because it is sometimes used to treat cancer, but many cancers are treated these days with biologicals alone or with chemo.

What is the difference between biological therapy and chemotherapy?

Biological therapy and chemotherapy are both treatments that fight cancer. While they may seem alike, they work in different ways. Biological therapy helps your immune system fight cancer. Chemotherapy attacks the cancer cells directly.

www.cancer.gov/cancertopics/treatment/biologicaltherapy

Chemos cause hair loss because they kill cells, good and bad, and it destroys hair follicle cells. Rituxan does not affect those cells at all; it only targets T cells and B cells, which are white cells. There is a huge and distinct difference between chemo and biological drugs.

Amber:

We are trying to help you, but you don't seem to want to accept what anyone says and you contradict yourself. In this thread alone, you said:

amberyard wrote: I want to talk about getting back on Promacta since we really didn't give it a chance to work. But I have had one round on rituxan, can I stop and go back on Promacta or do I haves to do all four rounds of rituxan?

amberyard wrote: Also we have given the treatments time to work, like the promacta I was on it almost 3 months and only suppose to be on 2 weeks to see if it will work.

Promacta can take longer than two weeks to work. I think that has been said a few times.

What concerns me is how many treatments you are doing in quick succession and literally pounding your body with too much. In the 14 months since you've been diagnosed, you've already had 9 Rituxan treatments, numerous IVIG's and platelet transfusions, N-Plate, Promacta, Decadron a few times, Prednisone a few times, anything else? You've also had vaccines while doing Rituxan which isn't recommended. They won't be very effective and it's just more foreign substances being thrown into your body that could cause problems.

There have been people here before who were refractory and I don't think I've ever seen anyone try so many different things and jump around from one to the other so fast for so long. While you're on the Rituxan schedule, I think you need to step back and try to figure out what your goal is. I know the main goal is to get platelets up, but you need to also consider what all of this is doing to your body. Any time a person is using immunosuppressants, it raises the risk of cancer. That includes Prednisone, Decadron, and Rituxan. You can't just keep pounding your body with all of them in a short period of time like this. It may take a few years, but it will catch up with you. All of that immunosuppression can't be good, especially if you're getting platelet transfusions which can cause serious bacterial infections. I don't know how much the immune system can take and it is true that more people die from infections than from bleeding.

You ask for suggestions and we try to help. Back when you were scheduled for 8 Rituxan treatments, a group of us held up a red flag and said "Whoa - there is something wrong here - stop!" You ended up with all 8 infusions.

I think by now you know that your goal needs to be safe counts and not normal counts. If you achieve normal counts with this round of Rituxan, great! But if not, you need to figure out what will keep you safe and just worry about maintaining that. I am one who has had many toxic treatments for Lupus in the past 7 years and I can't begin to tell you the damage it has done. I have refused so many treatments that were recommended because there comes a time when treatments cause more harm than good. Is it worth the risks? My point is, you've done this for a long time now and should really think about continuing along this path. All you can do at this point is go back to the same ones you've already tried and start the circle all over again. You're doing that now with Rituxan.

Good luck with this, I hope it does the trick.

Yeah the first post was before I talked to the doctor and the second one was after. I was talking out pound with the first one look to see if anyone knew anything. After talking to the doctor I understand you shouldn't put your body through a medication that the manufacture says should only take a couple of weeks. Yes everyone is different, I'm at 8k and if I was above 20k I would just be watching and waiting.

With the vaccinations it is up to you and your doctor did lots of research on that one. They are killed vaccines and it is better I get them now just in case of an emergency.

And with the steroids I have read people taking Pred fir years. (WHAT!) The long term damage on steroids is no joke, that is why I've tried them and will not stay on for months or years. It will either work or not.

I had 8 infusions last time and I was happy with the 7months medication free. This time we are doing 4 and that is it, either it will work or not (time can only tell).

I listen to my medical doctor and do my own research (haven't met a medical doctor on here yet, did me a nice veterinarians).

I come here for personal stories and experience, and get attack by me calling rituxan a type of chemo. (Which it is! no matter how you sugar coat it). Then the whole point in the org post is lost, I have seen this so many times; someone puts a post up then someone will personally attack that person for some stupid reason or another. Rituxan is used for cancer, RA, transplant patients ITP and so much more. The someone was like ITP ISN'T CANCER.......NO SH*T!!!!!! Lol it is just funny how people get so upset over a word, yeah ITP is no walk in the park but cancer now that sucks; I have seen things I wouldn't wish on anyone in the infusion centers.

Lets seen get my spleen out and most likely not work and will have to back track with medications. So I am skipping surgery trying medications I have tried in the past and may add on new ones. WARNING cancer drugs will be talked about..lol. " Vincristine (ex. Oncovan) and cyclophosphamide (ex. Cytoxan) are occasionally prescribed to treat ITP. These are second or third line treatments. Vincristine may be used in emergenices or in combination with other therapies for particularly difficult cases." Like everything else I'm the small % (rituxan I had lots of dead hair loss and people said that wasn't possible (a small % do have that problem which I did) got attacked on that one as well. Its just hair)).

The first time I had Rituxan it lasted 9 months. The second time it is going on 5 years. And I only needed two infusions that second time.
Erica

I don't see how anyone can say that I am not being positive, I am always happy and dealing day to day. That is life, I'm not worried about tomorrow because it isn't here yet. I also hope the Rituxan/Dex works and I don't have to do other chemo's the doctor was talking about. Keeping fingers and toes crossed for myself and everyone else.

I am a realistic and things happen but never sit and feel sorry for myself. Right now I am around a lot of people that are way worse than I am and most are happy go lucky looking on the bright side (they are still alive).

No one is attacking you. You are asking for opinions and people are giving them. While they are doing that, they are also pointing out factual errors that might give someone else the wrong impression. Rituxan isn't chemo and no one is sugar coating it...it's a fact.

I wrote my post because I am concerned about you. Believe what you will. Hopefully some of the refractory patients will pipe in to tell what they have done in this situation.

Wasn't looking for an opinion, looking for true personal facts. People that have had platelets, not Google information. And of course again this has nothing to do with the post.

Back to the original post topic.

Getting a new chemo added on for today called Vincristine (VCR). Today's count is 7k yesterday 8k. Re count check tomorrow and still waiting on when he wants to see me again. He is in Cumming office on Tue and Thur, maybe tomorrow after I get off work. Also starting Dex 4mg once daily until I see him again.

Ok. It's your body. I hope your research has provided you the possible side effects of Vincristine. I hope it's all worth it. Good luck.

Yep did lots of research before hand and its one day at a time. Keeping my head up as always. GO PLATELETS!!!