Taking Vitamins and Minerals - ITP

Hi everyone.

Quick question, when I was formally diagnosed in Feb 2014 with ITP - I was taking Vitamin C - 1000mg and Vit B Complex, I decided like I guess some people to stop everything, as I thought for some reason ITP was an overactive immune system - so I thought lets not support that.


Just wanted to know it is safe to take Vit C and a B Complex? Also since coming of a steroids on the 29th Dec 2014 I did taper slowly from 90mg all the way down to 1mg then stop, so it was a gradual tapper, I noticed ever since then my joints are so stiff, not when I walk etc but when I sit for a long period or when driving and in the morning, so my Mom suggested I take Glucosamine and Chondroitin ( she has ITP aswell and is 80), so for her joints she takes this ( says its very good and has no complaints - she is fitter than me!!!) - should that be ok with ITP?

Vitamins are safe to take with ITP as long as they don't have any odd supplements mixed in.

It's normal to feel stiff like that after Prednisone, even with a slow taper. It can take some time to go away. Personally, I'd stay away from the Glucosamine and Chondroitin.

Use cautiously in people with low blood platelet counts, as glucosamine may interact with antibodies.

www.mayoclinic.org/drugs-supplements/glucosamine/safety/HRB-20059572

Adverse Reactions
Blood: decreased platelet (blood clotting cell) function.

ratguide.com/meds/herbals_health_supplements/glucosamine_chondroitin_sulfate.php

My understanding of the effect of vitamin C is that the vitamin itself kills bacteria, not that it stimulates the immune system. I take some when I feel like I'm getting a cold.

My hemo things that it has 0 effect on ITP and on anything. I still feel better when taking it and I'm not afraid of any side effects on ITP.

Cheers
jw

Vitamin C has been known to strengthen blood vessels and lessen bleeding symptoms.

Vitamin C may kill some bacteria some of the time, though there shouldn't be any bacteria in the blood at all, and that's where platelets are. I saw research years back suggesting that high doses of vitamin C (over 1000 mg/day) may harm blood vessels, but that seems less than conclusive. On a related note, my current hematologist put me on B12 and folate supplements due to deficiencies he found through testing. I checked those two in detail and found nothing to suggest they'd reduce platelet count. Unfortunately, supplementing them hasn't improved my platelet count, which was his hope. Fortunately, my platelet count is in the "watchful waiting" range.

I take vitamin C 1000mg, B-12, Iron 65mg all twice daily. Doctor advised me on all of these, the C helps boost my immune system, B-12 energy, iron anemia.

take several supplements !
they ave no effect as far as I can tell
Hematologists do not seem to endorse
but my Rheumatologist recoomended Vit -D
for arthritis

My naturopath recommended 2000 mg vit c, acetyl carnitine 1500 mg and l lysine 1000. Anyone know of contraindications? She also recommended i put sesame oil on thighs and arms for "platelet support" along with "marrow support-yin nourishing therapy" anyone know of contraindications? Lastly "cortisol Manager" to help with steroid side effects. Anyone tried that?

Emily:

I'm just not a big fan of doing much of anything like that when counts are unstable and treatments are going on. I don't think contraindications in relation to ITP have actually been studied.

Thanks for the information. It is hard not to try everything and hope for success from something. I need to be more patient.

My new hematologist told me last month to cut back on the C - and I take 500mg of Ester C 2x a day, so far haven't cut back. Might to 500mg 1x a day.

I'd have to look up and see what acetyl camitine and I lysine is.

Did she tell you how putting sesame oil on your thighs & arms supports platelets?

She said that inner thighs and arms have the thinnest skin so the absorption rate is better. Those are the same places you put hormone cream. The internet, for however reliable it is, had quite a few sites supporting sesame oil as good for platelets including the livestrong foundation (the lance armstrong founded entity for cancer). It sure seems like it cant do any harm but i guess one never knows. The other things are amino acids. Why did your doctor say to cut back on vit c?

Emily:

As long as you research these things and make sure they won't do any harm, it should be okay. The thing is though, that you don't know how they will react with your meds. Also, If you had counts of 700,000, you really don't want counts to go any higher so why push it with those extra supplements?

Blood clots with ITP can be a concern and that should be taken into account.


Having immune thrombocytopenia purpura (ITP) appears to increase the risk of thrombosis, a British researcher said here.

The finding -- derived from a large British database -- "confirms clinical suspicion" that the disease is linked to clotting, according to Ameet Sarpatwari, M.Phil., of the University of Cambridge. The risk appears to be primarily associated with venous thromboembolic events, he said at the American Society of Hematology meeting.

Sarpatwari and colleagues looked for adult patients with ITP in the United Kingdom General Practice Research Database, which holds anonymized medical records of about 6.4 million patients from 450 representative practices.

To the 840 adults treated for ITP from Jan. 1, 1992 through Sept. 30, 2005, they matched 3,360 patients who did not have the disease. The outcome measures of the retrospective cohort analysis were thromboembolic events, including deep vein thrombosis, myocardial infarction, ischemic stroke, and pulmonary embolism.

Overall, the researchers found, the rate of such events among the ITP patients without a known prior history of thromboembolism was 6.7%, compared with 5.7% for the non-ITP controls. The researchers found an adjusted hazard ratio of 1.58 for venous thrombosis, with a 95% confidence interval from 0.98 to 2.53. The ratio for arterial events was 1.02, with a 95% confidence interval from 0.65 to 1.59, while the combined hazard ratio was 1.17, with a 95% confidence interval from 0.82 to 1.66.


Although none of the hazard ratios met the standard for conventional statistical significance, Sarpatwari said he's convinced that at least the venous thrombosis risk is real. In a larger patient population, he said, the numbers would probably reach significance.

"It's enough to say that it warrants going forward" with more studies, he said.

The occurrence rate in this analysis was roughly the same as the 5% reported in 2004 by a team led by Louis Aledort, M.D., of New York's Mount Sinai Medical Center, he said. The finding may appear paradoxical, because the main characteristic of ITP is a low platelet count, said David Kuter, M.D., D.Phil., of Massachusetts General Hospital in Boston, who was not part of the study.

But there are probably two reasons, he said. In the first place, in ITP patients, platelets are younger and thus more active. Secondly, in ITP, an antibody reaction shatters the platelets, but the fragments are highly thrombogenic, Dr. Kuter said. Another possible for thrombosis is that treatment for ITP may cause the platelet count to rise too rapidly, he said.

Physicians should be aware of the risk of thrombosis and take care not to let the platelet count rise too high, Dr. Kuter said. "You shouldn't try to normalize the platelet count," he said. They should also be aware of underlying cardiovascular disease and increase the platelet count in such patients "very gingerly," he said.

www.medpagetoday.com/MeetingCoverage/ASHHematology/12103

Yes the doctor and i were both very concerned when they hit 700,000. Two days later they dropped to the 500,000 range three days later they fell to 90,000 and three days later to 7,000 so it was hardly a sustained high number. I started 100mg of solu medrol iv on friday, had that saturday and again today and now i have a small bruise on my index finger whereas until now no bruising since initial diagnosis. No platelet count until tomorrow but i am totally freaking out that the steroids are not working and not sure what to do if that happens.

Emily:

We've got to get you to stop freaking out. A small bruise is nothing to worry about. Even people with normal counts get bruises. If the steroids don't work, that's okay, you'll try something else. My advice is to slow down and breathe. Low counts do not = death. You know that you can get counts up and you know what worked to do that, so you can just go back to those treatments.

I think you are having far too many treatments thrown at you without giving them a chance to work. All you really need to do is maintain a count over 30k to be in a safe zone. Let's even go 50k for you, since you are uncomfortable with all of this.

In a race to get counts up, we tend to forget about the big picture. We focus too much on now and don't think much about the future. All of these drugs have potential long-term side effects. One of them is an elevated risk of cancer. The more you pound your body with the meds, the more you put your body at risk. Some of the treatments can cause permanent damage to the body that may not be apparent for months or years.

Some people who start out with ITP also develop other disorders over time. Not all, but some. These can include CVID, which can be a severe immunodeficiency disorder. APS, which is a blood clotting disorder that can cause serious blood clots even at low counts. Lupus, which can be a life-altering, debilitating disorder. Neutropenia, which destroys white blood cells like ITP destroys platelets. The list goes on. My point is that sometimes the treatments (such as splenectomy) can make things more difficult for the other disorders.

As for splenectomy..... I'm glad that you're going for the Indium, but splenectomy is rarely ever necessary for ITP, especially if other meds work to raise counts. Some of the top ITP specialists don't even recommend them any more. While you're in England, you should try to see Dr. Drew Provan. He is tops as far as ITP and I've heard he has a great bedside manner. Anyway, back to the big picture. Sometimes it's easy to overlook the fact that if the splenectomy doesn't work, you're back to the same meds that you have now. Without a spleen, the immunosuppressants put a person more at risk for infection. Without a spleen, the TPO's raise the risk of blood clots. As far as predicting splenectomy success, the only thing that's been proven so far is that patients under 40 have a better shot at remission.

I'm not sure what your goal is here. Maybe if you tried to explain it, we could help you find the best route to get there.

Just a little comment about bruises: I regularly have small bruises and even the occasional petechiae. My counts have never been particularly low, and so I just ignore the bruises. They don't seem to correlate with my counts, and I've tested negative for clotting disorders. It's just something that seems to happen.

All
If we were in the same room i would hug each of you. However none of you would want to be in the same room as me because i am a wreak!! I know i am freaking out. I also read that there is a 6 percent chance of getting some awful, terminal disease from rituxan. So now i am back to planning my funeral. I still cannot even get my arms around the fact that i know about ITP. I want my platelets about 50,000 so i can feel more like me. I am an attorney and i am a planner (as i am sure most of you are). I cannot even plan a day now let alone the next day or a week. I see my calendar full of clients and have no idea if i can see any of them. I want consistent platelets in a safe zone. I don't need perfection. I want off steroids. They destroy my emotional stability and make me feel sick. The ups and downs of the numbers and the poking and blood letting and injections is horrible. I want to go for a run. I want to feel like i am making progress. I want to stop whining.
Thanks for listening.

Emily my dear, you are making me laugh! I would love to be in a room with you, mostly to distract you from planning your funeral! You're not going to die from this. You are being monitored and treated, you just have to relax and stop stressing so much.

I was diagnosed at 35 years old. I had a full time job and couldn't take time off because of the work load, and I had three very active young kids. Prednisone turned my life upside down. I get it. Between the stress of the job and the stress of the kids, I snowballed into an absolute wreck. I went to work one day, started to cry, and couldn't stop. It was because of the drug; I wasn't afraid of low counts. Anyway, they sent me home and I cried for three days straight (luckily it was a weekend). The steroids complicate things and they do affect job performance, ability to listen, speak, see, taste....just about everything. My co-workers can surely attest to my limited abilities during that time. They made fun of me for the stupid things I did and at first I was hurt, but then I decided to lighten up and realized that it was funny. Once I did that, things went much better in my life. Tip: Lighten up and remember to laugh. You're not terminal. You're still alive. Most people with ITP live a normal life span. The risk of death is .067%. VERY low.

We all understand what you are going through. We've been there. We all have lives that were interrupted. How unfair is that? I thought of ITP as an unwelcome intruder in my life. It destroyed a perfectly content and meticulously managed life. But whenever I would hear someone say, "Why me" in relation to an illness, I realized that I never saw it that way. I always thought, "Why not me"? Bad things happen to good people all the time and it's not what happens that defines us, it's how we handle it. I took a look around and realized that there were many people who had things tougher than I did. It changed my perspective and made ITP much easier to live with. It's actually considered to be a benign hematological disorder. For most people, it's just a pain in the butt.

By now, you probably know that ITP has no quick fix. No matter how badly we want that, it may not happen. Because of that, you have to learn to accept it and you have to learn to live with it. You can, but you have to leave it on your back burner. You can't let yourself focus on it and you can't let it dictate your life. You learn to make room for it, and you learn ways to manage it.

Okay, I understand your goal. You're not going to get that from Solumed IV's. Those IV's are just setting you up because you have them, counts go up, then drop back down quickly. It's a recipe for failure. You can get what you want from Rituxan or N-Plate. With either one, you have to be patient. Rituxan can take 4 to 12 weeks after the first infusion to work. N-Plate can take a few months to have stable counts. But in the meantime, it's okay to have low counts if symptoms are few. My counts during the month I had Rituxan were between 3 and 11. I worked the entire time and I only had counts done once a week. I was fine. I had petechiae and bruises, but they didn't scare me much. Some people are not comfortable with that and in that case, maybe a low dose of Prednisone would keep counts safe (30k and up) during that time. Side effects would not be too bad. I've taken 10 to 15 mg's daily for 10 years now (not for ITP) and I don't even notice it (my bones have, but that took many years). Anyway, that's one option. You'd be able to work because you wouldn't be spending all of your time having IV's. There are ways around it. The only work days I ever missed were Rituxan infusion days. I had CBC's during my lunch hour.

ITP isn't hard to manage for most people and I suspect you are one of them. You just need a doctor who will make a plan and stick to it. Some drugs cause remission and some do not. Stick with the ones that can. You will get there. Most of the time, the people who have felt like you do have found that they have the wrong doctor. They didn't even realize it until they found the right one. Life then changed 100% and they felt normal again. I've been observing people here daily since I joined in 1998. I've seen it all.

The plan for you: Getting the right doctor and the right treatment. That's all it will take.

Ok. Deep breath. I have my list of questions now. First one, what is the plan and how long do we stick with it. Second question I need an oral steroid that can keep me above 30 more consistently. Third question, i need a partner in my treatment not constant emergency measures. I have many more but hopefully that will get me started. I also emailed dr provan in England to ask if he will do a phone consult. I have stopped crying (for now) and will escape to watch downton abbey on pbs.

I cannot thank you enough for helping me get my perspective back and maybe a little bit of sanity. Of course i make no promises on how long such a feeling will last! I promise i am not usually the drama queen. I am usually rock solid and actually fun to be with. My staff keeps asking when emily is coming back to work because the imposter emily is a bit tough to take i miss her too.

I will keep you posted whether you want to hear from me or not.

And one more thing, if someone tells me i am brave one more time, i might hit them! I am not brave. I am pissed off and terrified all at the same time.

Dear Emily

You sound just like me when I was first got diagnosed and you can ask Sandi, I have been on here many times and Sandi told me I would live... and I did, and I am.... I have my days and I had dark days, I couldnt plan, I couldnt do anything, all my holidays were cancelled last year, I felt my life had been taken away. I hated the fact that every week I had blood taken... however you have to see through it, my doctor told me ITP was a lucky disease of the blood to rather have, its not cancer, and when you get to see all the people each week in the clinic that have cancer, its hard for them.

Try get to see Dr Provan, I did, he is very relaxed and you feel that if the doctors are relaxed so should you be, perhaps you could email him, ask him questions?

All I can say is be patient.... its hard - very hard when its new, it all seems still new to me and its been a year, I am not sure if you ever get used to it I guess its how you manage it - yes my counts have suddenly gone up with no treatment, but I live in fear they will go down again and I will be back where I started.

Be kind to yourself.... you dont have to be brave - there are no badges for that... just be kind and patient and stay on this website and in this forum - they help a lot!

Emily:

I had the same thing happen. After months of being on steroids and being a hideous person, I went into work one day and announced, "I'm back"! I finally got back to normal. You will too. Steroids make you a different person and emotions are all over the place. Once steroids are out of the picture, things get so much better.

Speaking to or seeing Dr. Provan will help. Have you seen his video? If not, here it is:

fhs.mcmaster.ca/medicine/hematology/ITP-2010/player.html

I saw Dr Provan and he is fantastic and very reassuring.

I am hoping to see dr provan. He is on holiday until march 3 and when i called the hospital they said i have to wait for him to get back. I sent him an email as well. Also hoping my arizona hemo will consult with him. My hemo seemed really excited to do so. Each day is a new adventure, that is for sure!

Thanks to you all!
Hugs

Hi everyone, I am about to go Vitamin and Mineral shopping as I have run out and wanted to know...

What do people take for joints/muscle stiffness -

Sandi -I know you posted this on a reply:

It's normal to feel stiff like that after Prednisone, even with a slow taper. It can take some time to go away. Personally, I'd stay away from the Glucosamine and Chondroitin.

Use cautiously in people with low blood platelet counts, as glucosamine may interact with antibodies.

So dont want to take Glucosamine and Chondroitin, but I am battling with very stiff joints and muscles since coming off Steroids in December.

I take Vit C - 1000 daily, so what else? Vit D? Also thought of Vit B12 - Folic Acid.

Fiona:

My personal thought is that if you don't have a known deficiency, supplements and vitamins are not really necessary. I do think Magnesium is important though since deficiencies do not show up on blood tests and it is important for bones and muscles.

If you are planning on having a baby folic acid is something you would need in a vitamin as it helps prevent neuro birth defects.

That said I take all different kinds of vitamins and supplements. Main reason for vitamins is I not eat veggies. I'm almost 48 and have been in full blown menopause for a few years now. My doctor's know what I take and why.

Chewable (kids) multivitamin, chewable D, chewable C, Calcium/ magnesium, menosense (for menopause).


I recommend talking with your family doctor as to having him run a chem panel and check vitamin levels. When the result are in than discuss what you want to take.