ITP Help

Good Morning,

I'm new to the forums and had a few questions I wondered if you guys/gals would know the answer to.

I'm a 29/m with an average ITP count of 30k-50k.

Previous treatement methods were 80 mg of prednisone which I took about 4 years ago and stopped after 6 months once the side effects became unbearable. The next step was for me to either have an IV put in me every friday for 8 hours (I work, not possible) or a spleensectomy. I said no to both and admitted there was nothing I could do and tried to live with that.

Well, last week I was supposed to have surgery on something unrelated but now my platelet count is coming back to bite me and I am not allowed to have the surgery (despite its seriousness) because my platelets are still at 30k. My hemotologist has me on 80 mg of prednisone in the morning and 80 mg at night for a week, then 80mg a day thereafter for a week to temporarily raise my platelets for the surgery.

1) Will taking vitamins and vitamin C suppliments hamper the prednisone? It's my understanding vitamin C boosts the immune system and prednisone purposely targets the immune system to lower it. Should I stay away from vitamin C while taking prednisone?

2) I have come across so many forums and threads with herbal treatment ideas, but I have no way to know which is a scam and which isn't. For example, I came across a site for Bloodwell but they want $110+ an ITP kit, I am hesitant to drop that kinda money on something. Is there a list of safe, surefire herbs out there that most people can swear by?

3) I am a guy, so my knowledge of foods and cooking are limited. (I'm an accountant by trade) I don't like to cook because I hate cleaning up afterwards. Are there ready to eat healthy foods I can get at the grocery store that I can eat on the run without preparation that aid in raising platelets? My thoughts ran along the lines of raw brocolli and celerey, those I can do. Any other suggestions for those that don't like to cook?

Thanks in advance.

Unfortunately, a processed food diet won't help heal your immune system at all and will hamper it greatly. So I can't really suggest anything pre-made that will help you. I can suggest you stay away from things like High Fructose Corn Syrup (or it's recently renamed version - corn sugar). It is very damaging to the immune system. The closer a food is to it's original form, the better off you'll be.

Prednisone will SUCK the vitamin C out of your body faster then you can say boo (that was our experience). However, Vit. C will give you strong cell integrity to help prevent bleeding. It is not recommended to take high doses of C though without having a G6PD test run first. If one has this gene deficiency, large doses (I mean like 5K +) can damage the body. The gene deficiency is mostly seen in those of asian descent. However, we did this test anyway as a precaution (we were using HIGH doses of C).

The only real fix I can suggest would be homeopathy and learning to eat a healthy diet to keep yourself healthy after that. There is a natural thread that discusses this treatment that a number of us have used or are currently using. It's not an overnight fix (can take a few months) but it doesn't have nasty side effects and fixes the body as a whole.

best wishes,

patti

maybe eating fruits will help a lot,fruit and green vegetables will help,youre taking a high dose of steroid i only have 36k platelet but im only taking 20mg in the morning and 20mg before bed time,are you having a bleeding or bruises?well i hope youll feel bettr soon,LYN

I figured I'd have to make changes in my diet (I'm 5'7 and 225 lbs, overweight) anyway so might as well learn to start. I guess pre-made was a bad choice of words, what I mean is, what foods are pre-packaged that are organic that I can pick up that don't require cooking and preparation? Any good solid organic foods easy to make / easy to eat? Sorry if that's a silly question, I've never gone organic before.

So sorry to ask again, but should I take vitamin c while taking prednisone? I only would take one 1000 mg Vitamin C packet a day along with my 300 mg I get from my multi-vitamin. I just didn't want the "C" to prevent the prednisone from lowering my immune system so my platelets can go up.

I do have bruises but no random bleeding unless I get a papercut at work or something. I also get red tiny dots on my skin time to time.

I appreciate your help in advance.

There is no known contra-indication for taking vitamin C with prednisone. You can check with your pharmacist and confirm this. Pharmacists are a great source for information like this!

How urgent is your surgery? You could possibly also get IVIG infusion to up your platelets for the surgery. Others in this forum have used measures like that for urgent needs for platelets.
Erica

Thanks!

It is semi-urgent that it is painful, but I won't die from it, but unless it is treated soon some of my organs can get infected and have complications. I asked about the IVIG and they said it wasn't recommended due to the side effects, though I'm thinking if the prednisone doesn't work it's what I'll have to have done.

I'm glad you were able to answer the vitamin c question, common sense tells me that since vitamin c ups your immune system and prednisone lowers it, they might conflict. Unfortunately I haven't been able to confirm that on the web so, I like your answer.

I'll have to ask my pharmacist next time I'm there. I appreciate everyone's help.

1. As far as I know, you can take Vitamin C with Prednisone. I have. They work in different ways, so they shouldn't conflict.

2. As far as supplements, I wouldn't count on those for a quick fix. Maybe that is something you could try after the surgery, but I certainly wouldn't rush to order and count on that for a surgery.

3. Diets - hmmmmm. Healthy in the long run, probably won't do much for platelets.

My 2 cents.

With proper administration, IVIG side effects can be much more tolerable than that high dose of Prednisone you're on. Both are viable options, but Prednisone and surgeries can be tricky, especially with high doses.

Sandi wrote: 3. Diets - hmmmmm. Healthy in the long run, probably won't do much for platelets.

Hi Sandi, I am interested in understanding how you have come to this opinion. Do you think there is anything people can do apart from medical treatments to raise platelets?

In a word, no. That's my belief. In my 14 years on this Forum, doing extensive research, and trying things on my own, I have not found any proof that anything other than traditional methods make a difference for the majority.

However, before anyone gets their panties in a bunch, I will say that I do believe that there are individuals who stumble on something that may make a difference for them. Whether it's a gluten free diet, change in lifestyle, or treating allergies, some individuals get lucky and find something that may make a difference. I say 'may' because I can take 1/2 of those claims and turn it into coincidence, which I'm sure occurs on occasion.

I was a newbie once. I searched for the fix. I tried Vitamin C, Vitamin K, liquid chlorophyll, pineapple juice and a few other trendy hot items that I can't remember this time of night. I thought I was going to find it and I was outspoken about it. None of it worked and I even experienced a drop in counts at times. Did I blame the latest product? No, I just believed that my counts were doing what they wanted to do. I stayed away from the dreaded Motrin and Aleve and alcohol and did all the right things. Didn't matter. I ended up with counts below 10 on quite a few occasions.

Everyone has a different experience and everyone has a right to try what they want. I didn't tell VMP not to eat healthier, I encouraged it for his well being. If it helps his platelets too, great, but I certainly wouldn't count on that.

I actually would have to concur that diet is not going to fix platelets. My point was more that if you want to give your body the greatest chance of success with whatever treatment one chooses, it's best to keep the diet healthy. Not just organic because quite frankly a lot of organic foods are as processed as the regular crap is. But foods as close to their natural form as possible. The only way to "fix" ITP is to fix the immune system. Certainly keeping the diet healthy will put one in a better position to do that because a bad diet in itself is damaging to the immune system (not just in ITPers). I have no illusions that Bubba's platelets would stay fixed if we ate the kind of crap we did 10yrs ago. But with both his body being in balance and his diet clean, I expect it'll stick.

patti

Sorry Sandi, I didn't pick up that you encouraged VMP to eat healthy. Depending on how you read it, but it sounded negative to me.
Take care, Sally

theres no problem with taking vit c,my haema gave me 1000mg of vit c a day while im taking prednisone,

My problem is figuring out just what a "healthy" diet means. Fruits, vegetables, fish and chicken come to mind. The problem with that is that fruits and vegetables are usually treated with pesticides, fish can be toxic with mercury, and we all know what goes on with chicken. I don't believe that even the healthy foods are all that safe, so what to do? You stock up on fruits and veggies and eat those like crazy thinking you're doing yourself a favor, but will it come back and bite you in the butt eventually? I could easily live on those, I love them all, but do not believe they are as healthy as they are made out to be.

Sally, I wasn't trying to be negative. I do tend to be blunt (occupational hazard) and that's just me.

You make a very valid point, Sandy. I think most natural oriented people would say eating closer to the source is your best bet. I took the time to find farms that raise and sell their own meats. I viewed their raising animal practices (I am NOT a liberal ), talked about what they fed them (avoiding corn and soy as much as possible), made sure they used no hormones or antibiotics, and then decided where I should buy. I buy all of our meat from farms and pay less then I would if I bought organic and hormone free from the store. Buying foods that are unprocessed but may not be organic and hormone free are better then buying foods that are in a box and full of chemicals. I do buy our foods 95% organic and I refuse to buy anything with soy or hormones in it. And we took the time to find a place where we could raise a few chickens for our own eggs (and chickens when the rooster crows too much :laugh:) and a nice large garden. So, it takes effort, but it can be done. And certainly there are layers of quality. But it's still better to eat closer to the original source and wash the fruits and veggies well, etc. then it is to eat processed. It's a balance. And everyone has to find their balance. But we do find our food tastes so much better coming from farms and our garden. And our kids know where their food comes from. They get grossed out at a box and aren't even sure what a hog dog is. But it all takes time and effort and work and we're in a microwave society.

Thanks for all of your viewpoints, it is greatly appreciated.

One of these days I hope there's a set cure for ITP, It can be very discouraging at times, especially when you try to research a cure on your own and realize that there are about 50 suggestions but none of them are proven to work on everyone. I've read up on people claiming that a glutten free diet will help rid your body of toxins that may mess up the body's natural processes. I've read being overweight like I am is also a possible factor since being overweight taxes the body. I've read how certain herbs and vitamins may help.

It seems that the drugs and IV transfusions are a temporary fix, I wish medical research would be able to pin this on one thing and find a cure.

Thanks Sandi,
I can imagine (I think) how frustrating the job gets at time, having to repeat things over and over and then a 'newby' comes along with all her hopes and confidence, who just doesn't want to hear. And you've got own journey and battle to contend with. I think you do an amazing job and I genuinely appreciate your clarity and compassion.
That said , I still feel that there is more to this Itp than than what the current medical knowledge has to offer us - I jolly well hope so!! There has to be some explanations why it strikes some and not others, and why some get it much more severely than others. I know genetics plays a role, but it's not the whole story. And yes we are all different, but it's natural that we try to understand how and why this is so. That's why this forum is so 'awesome'
A dear friend or mine died recently of cancer (it will be the first anniversary of her death this Friday). She lived 'the good life' and they had an organic produce shop. She had both medical treatment and spent time at the Gawler institute - she never wavered from her belief that she could be healed. I saw this also with my brother-in-law who also died of cancer a few years ago. That belief sustained them and gave them and us, their nearest and dearest/s hope and strength.

Cancer is usually more acute and debilitating than Itp but there are a lot of similarities and there is mutual benefit from the research that has been done on the immune system both medically and with with understanding of lifestyles, natural therapies etc.
I believe we need to use all options if we are going to get a grip on these pesky platelets.

Think I'll go and have a BIG SNIFTER after all this pontificating. Cheers

What I'd like people to understand is that ITP isn't like anemia - you can't just eat foods that are iron rich and take a vitamin to fix it. I think a lot of people are under the impression that since it's a blood-related disorder, you can fix it with diet. It's autoimmune, and there are a heck of a lot of autoimmune disorders (88 last time I counted), and none of them can be cured. ITP isn't any different.

That's not to say that you can't lean toward a more positive diet, whatever that might mean to you. Some people avoid alcohol, but a few ITP people have actually been told by their doctors to drink a glass of wine every night. VMP hit the nail on the head when he said, 'where do you start'? Some people become vegetarians, but there have been people here who were vegetarians for years and then got diagnosed with ITP. There is no common denominator. I think the trick then is to take a look at your life and start there. If you are overweight, start by eating to lose weight and make that the goal. If you are a heavy drinker, slow down and see if that makes a difference. Whatever the problem is, it will only help in the long run with general health, even if it doesn't make a difference with platelets. It will avoid a possible diabetes diagnosis or possible liver problems.

Patti had a great solution with the organic foods, but the way our family is, we can't really follow that. It sounds easy, but I have a husband who travels for a living and eats at restaurants during the week. He can't take organic foods and cook on his trips. My son works weird shifts, so he comes home and cooks whatever he can find. I am happy with a bowl of Corn Pops or a baked potato, quick and easy. We only cook on weekends here. I do make myself some orange roughy once in a while or salads, but again, not organic. In the summer, we do go to a local fruit market and buy vegetables, but that's as close as we come. Time is a major issue with us and we just don't have enough of it.

Yes, there is a lot more to ITP than the medical community can offer, but that is not for lack of trying. Bloodjournal.org is constantly publishing articles about ITP and new discoveries, and once you begin reading them you can see just how complex it all is. Many doctors out there conducting research and not one has discovered the cause or the cure. They understand the mechanism but cannot stop it.

I suggest that newly diagnosed people begin reading about the immune system. Start there. If you gain an understanding about that, you can begin to see how intriguing and complicated it is. Read about autoimmune disorders and antibodies. They are nasty little buggers that can destroy many organs and cause a lot of damage. Some people with ITP don't realize just how lucky they are to only have platelets affected. I'm not saying that to make light of it, I have been in that group. I am saying it to help someone see that things could always be worse.

I also think there is an underlying philisophical difference that everyone has to account for. There are those who believe ITP is not curable but can only go into "remission" and those that believe completely it can be "cured." I have studied the immune system since 2002 with great depth and have learned there are A LOT of foods that affect the health (or lack thereof) of the immune system. I still do not believe diet will fix it. The difference is I do believe it's fixable. And not with a danged stem cell transplant as one of our hemas tried to convince us. For pete's sake!!!!!!!!!:sick:

Healed, managed, remission for life or extended period - It's all a question of semantics. Whatever works!
Sorry VMP for invading your thread. I think Sandi is right when she says 'the trick is to take a look at your life and start there'. I am a strong believer in our bodies know what they need to heal, but we need to learn how to listen to them.
If you have an inclination that you need to eat more organically, I would explore that. High levels of pesticide usually result in liver overload. I had elevated liver enzymes so my naturopath has me on a detoxing diet, liver herbs etc. and it has helped with energy levels and platelets to date. I found getting the Itp diagnosis was the motivation I needed to make the changes I felt I needed.
There is so much advice out there on how to eat simple healthy food that I am reluctant to add to it so will just wish you a heart felt Good Luck
Please keep us posted how you get along - I will be interested to hear.

I believe that with ITP, you won't actually know you were 'cured' until the day you die with no recurrence. I have been in remission for 6 or 7 years. I do not believe I am cured. It may well come back some day. How long does a cure last exactly?

No apology necessary for "invading the thread". I'm happy to have found a forum where there's a discussion on the topic at all. I also appreciate the viewpoints.

Once I get my platelets up temporarily from 30k I'll be able to get off this prednisone and have my surgery, then I can attempt to go back to the blissful life as an accountant.

I apologize in advance though if my asking questions is just another ripple in the pond, you all are probably tired of answering the same questions over and over again. Normally I wouldn't care and not bother to ask but as a single dad my son depends on me, meaning I have to take a pro-active step in my life to ensure I make it so that he does.

If we tired of questions we wouldn't be here. We're here because we know the anxiety and confusion that comes with an ITP Dx. We here to perhaps lessen the confusion of a disease that many MD's are unfamiliar with and rely upon textbooks vs experience. We're here to educate because we were once exactly where you are. Don't ever hesitate to ask a question.

VMP - that's what we are here for. Better or worse, richer or poorer....differing opinions...if someone is tired of answering the same question, they have the choice of not answering or even reading the post. So, ask away.

VMP--I was going to mention to you that you might want to have your Hemo doctor do an IVIg drip over 24 hours. This is a method that the top USC Hemo doctor uses and it really worked for me. This might help to get your platelets up so that you can get your surgery. Just a suggestion:)

Thanks for the idea. That was one of the things the hospital considered but they seemed to back out of IV for some reason. (Unless a platelet transfusion, which they wanted to do but backed out of, and the IVIg are two seperate things?)

I was reading up on the IV methods and both carry risks, but I have a feeling if the prednisone I'm on doesn't work, then that is the next step.

When I was diagnosed 5-6 years ago it was Prednisone which didn't work back then for me, then they offered an 8 hr every friday IV drip or a spleensectomy, neither of which I was thrilled about. I just gave up, stopped the prednisone and hoped nothing would happen for the next 50 years...lol...stupid me. But what else can I do?

I guess I have to hope my temporary 80mg of prednisone a day yields a temporary boost long enough for me to have the surgery I need. I can't wait to get off this steroid...the headaches / fever is terrible.

VMP,
Why stupid you? Nothing bad happened to you for 5 or 6 years, and now there are new treatments available for ITP - you gambled and you won! Even if you had been treating all this time, you might still be dealing with chronic ITP - treatments don't cure it, just promote remissions of varying length.

Yes, platelet transfusion and IVIG are totally different things. The former does not work for ITP (except for a few hours and is usually used in emergencies) and the latter works for many, for a week to as much as several months.
Erica

Thanks, that's very helpful. I thought they were the same thing, now I have some reading material for the next for days. I'll have to ask my doctor about the IVIg as well and see how it's done. 24 hours seems like a long time, I'd hate to be cooped up that long in a hospital.

VMP,
Don't be that affraid of the IVIg drip. I was affraid at first (last July my platelets were at 1000) and I wasn't sure exactly what I wanted the doctor to do (or what treatment I would consent to). I finally agreed to the IVIg drip. The first treatment of IVIg they did over 6-8 hours and this didn't work. They even tried it again--still didn't work. I finally changed doctors and the new doctor did the IVIg over almost 24 hours and it raised my platelets enough so that I could get out of the hospital. I did read up on the side effects of the IVIg--one is caused by not drinking enough water (you need to drink a lot of water--which I did. I also stopped drinking coffee, tea, artificial sweetner, grapes, and tomatoes (and tomato products). This was just my opinion--and I did this until my platelets were up in a safe zone.

I've had ITP for over 4 1/2 years (was in remission for 4 years). My only treatment so far has been Decadron pulses (which I had four--over 2 months). My platelets were at 325,000 at my last CBC on Feb. 15 (about 6 months remission). I also stopped taking Sinequan last August (this med. is known to drop your platelets--could be the culprit--not quite sure). Another thing I've learned is to try and listen to your body--and get rest when you feel you need it. As you can see by reading from all the people that post on this site, we all have different reactions--and we all try different treatment methods. You do need to be an advocate for yourself and let your doctor know how you feel. Take an active part in your treatment options.

I appreciate it, thanks! I'll definately have to read up on it.

Hey Folks,Just a note to tell you what has been working for me.I was diagnosed with ITP last Sept.2010.My level was a 1 when I was admitted to the hospital.Igot platelets and IVIG.I was placed on prednisone 100mg.My levels stayed up for awhile then back down.I had IVIG more times 8 HR days with the drip.Jan 18th I had one bottle of Rutuxin which was to be my first of 5 bottles.Within a week I had vertigo so bad chills sweats weakness fainting spells.This lasted over a month.I now have a rash all over.My Hemat says this was not a reaction to the rutuxin.The neurologist says it was a reaction to the IVIG.The dermatologist did biopsy of my skin he said I have had a reaction to a medication.So I'm afraid to try any other new meds.My Hemat wants to try N-Plate next.Anyway my levels have gone up and then starting to go back down.Two weeks ago my level was 79.I went in for my labs the next week and one of the nurses told me that a teen with Leukemia had been taking Papaya Leaf juice to boost his platelet levels.I had also heard about taking Asparagus blended in blender take 4 TBSP in am and 4 in pm.You can check both of these out on the internet.Anyway the next week I took two doses of the Papaya "2 TBSP in am on empty stomach 2 days before my labs.My next lab was 71 only down by 8.I have continued to take the Papaya and Asparagus, today my level was 86! So this has been very exciting for me.I will continue this herbal treatment and hope it will continue to work.I have tried the celery and bloodwell and they did not work for me.You can find the Papaya online and in Health food stores.Info on the internet about blending
Papaya leaves in the blender and drinking the juice. I hope this will work for everyone that gives it a try! GoodLuck! Since my last IVIG my skin all over is dry with lines almost like snake skin!I have been drinking lots but its still there.Its like now I need some IV fluids to rehydrate!