Should I be worried?

I was diagnosed about 2 months ago and have been reading this board since then but have never posted before. I am a 68 year old woman who has not had any prior experience with ITP. I was given a routine blood test and I showed with a platelet count of 39. At that point I had only had a few bloody noses. I was referred to a hemo who took the watch and see approach but 2 weeks ago my count went down to 19 and I had a lot of blood blisters in my mouth so he started me on 60 mgs of Predisione daily. After one week my count went up to 117 which was really good. He kept me on the same dosage for this week and said if my counts reach over 200 he will lower the dosage. I have had the usual side effects but am dealing with it okay. My next appointment is in 2 days. But today I noticed about 20 small red dots on my legs (but not in a cluster) and a blood blister in my mouth which has me very concerned. I don't yet understand much about this disease or the symptoms but this is kind of scaring me. Is it okay to wait the 2 days for my next appointment or should I be dealing with this in another way?

You should probably go for a blood test. Having said that though I wouldn't. But it's a do as I say and not as I do sort of thing!

You should call your dr's office, report your symptoms and ask the dr or nurse what they would like you to do. I would guess that they would have you come in for a blood test today.

Being new to this, you are not familiar with how your body reacts to Prednisone. It would be unusual to get such a good response to Prednisone and then have a dramatic drop on the same dose, but stranger things have happened. It would be a good idea to see what your count is with symptoms like that after a good initial response. I'd get the count done today, but wouldn't worry myself sick over it. You can call and set up a count without seeing the doctor.

Thanks for the responses. I decided not to go for a test today and will see my hemo tomorrow. Later in the evening I remembered I had hurt my foot pretty badly during the day. There was no bleeding or bruising on the foot but it was later that I saw the red dots. It seems they traveled straight up from the injury from my ankle to my knee but there was so few of them and they never multiplied so I decided it probably was okay. The problem for me is I'm so new with this and every little thing scares me because I don't understand so much. I have read a lot about it but it all seems so illogical that I struggle with it. Now I feel like I'm getting a cold and that concerns me too. I have never had any serious illnesses in my life and have always been incredible healthy and think that is part of why I am struggling so much with having ITP. And I have not used Western medicine in over 30 years and am definately not a fan. I initially tried Naturapathic but my numbers kept dropping so decided to be treated this way instead. I hate the drugs but hopefully it will be worth it!

Good luck with your counts. If you got to 68 without having any serious illnesses, you are quite lucky! For most, ITP can be managed and controlled and life goes on.

I went to see my hemo today and my counts were a few points lower then last week (114). He said there is some viral crud going around and I don't have a cold like I thought. That could possibly explain why my count wasn't any higher. He is leaving me on 60 mgs. again this week which was disappointing as I was hoping to begin weaning down. If my count isn't any higher next week he is thinking of starting me on another drug. Also there was a bleed on my leg. He said it was from my injury and it was minor so no big deal. But at least now I know what to look for. I'm beginning to think treatment is all just a guessing game that causes you to go through trial and error until they find one that actually works. So I guess no magic cure for me.

Renee,

I hate to break it to you but you are right, there is no magic cure. I do promise you that you will get to know your body really well and know exactly when your counts are low and exactly what the symptoms are. I'm glad that you have posted on the forum. Itp is so rollercoaster emotionally and talking to people that have been through it is extremely helpful. Welcome to pdsa!

I second that, it is all trial and error. Most people go through a list until they find the treatment that works the best with the least side effects. Do you know what other drug he is talking about? It's a good idea to ask questions and know what he says so that you can research things before the next visit. Patients have to advocate for themselves. Many Hemos are not up to date with ITP and the treatments.

Just don't give up. I've tried 7 different drugs and the 7th has pushed me into a partial remission.. meaning that my count is good enough at the moment without any drugs, although not at a normal level.. last count 83.

Having ITP doesn't bother me. It never has although I don't really know why. I've had counts of 1 and 2 many times and I just do what it takes and work and play as normal with whatever count I've got at the time. I'd like to encourage others to have the same attitude although I don't really know how to do that. Just know that ITP can become a mere bother rather than a serious illness.

My hemo was talking about starting me on Promacta if my counts aren't higher next week. He wants me over 200 which I don't quite understand. If I stay over 100 I shouldn't have any symptoms, which is where I am right now. He was right that I do have some type of virus. I am so sick today, and being sick with a bug and having my hyperness from Prednisone is pretty nuts. I am lost as to how you treat a cold or virus while on Prednisone. What over the counter medications are okay to take? Because I always take Chinese herbs when sick I don't really know what is out there. And I'm afraid to take my herbs because who knows what those interactions could be. So what is safe? What works?

Promacta is designed to maintain a count of around 50. Much higher and it can cause clots to form.. which means strokes and heart attacks. So best to avoid a doctor who wants a count over 200 on Promacta!

The drug information is here.. it's the UK version of the same drug.

www.medicines.org.uk/emc/medicine/22949/SPC/Revolade

What cold symptoms are you trying to treat?

I also have a nasty cold. I'm going on week two. Can't stop coughing, wheezing, sore and scratchy throat....miserable. I'm taking Robitussin and Alka-Seltzer Plus Sinus Congestion. They do very little but I'll take what I can get.

Ann is right, counts should be around 50k on Promacta. It shouldn't be dosed to achieve counts much over that.

Renee,

If you have any questions about Promacta let me know. I have been on it since September. I started on 50 mg, dropped down to 25 and now on 12.5 mg.( the lowest dose). My count 3 weeks ago was 124. Sandi and Ann are right, the goal for a TPO ( Nplate or Promacta) is to keep you around 50.

Alright, so now I am completely confused. My homo has ITP listed as one of the conditions he treats. I like him, feel comfortable with him and assume he knows what he is doing. How do you know how knowledgeable they are? And how do you ever know which drugs to try and which ones to stay away from?

One of the things I was wondering was if my counts had dropped because I am sick? Does that happen?

Sandi, it sounds like I have the same thing as you do. My concern is what is okay to take while on Prednisone because of interactions. I have acupuncture every week to help with my Pred side effects and went today which seemed to help my cold/flu symptoms some. She suggested Elderberry syrup. Ever try it?

Just starting my 3rd week on 60 mgs. of Pred and I am so sick of the side effects. I did okay the last 2 weeks dealing with it but, with this crap I now have, it is beginning to feel intolerable. Guess I'm getting just a tad grumpy at this point.

Renee

Renee:

I don't know what to say about your Hemo. You could ask him about that. Just say that you've been reading about Promacta and according to the manufacturer, counts should be around 50k. He should do the explaining. Many people are intimidated by their doctors and just do as they say without question. It doesn't have to be that way, especially as you learn more about ITP. Most people feel more comfortable when they are part of the decision-making, it helps to feel like you have some control.

High platelet counts and higher risk for blood clots

Your risk of getting a blood clot is increased if your platelet count is too high during treatment with PROMACTA. Your risk of getting a blood clot may also be increased during treatment with PROMACTA if you have normal or low platelet counts. You may have severe problems or die from some forms of blood clots, such as clots that travel to the lungs or that cause heart attacks or strokes. Your healthcare provider will check your blood platelet counts, and change your dose or stop PROMACTA if your platelet counts get too high. Tell your healthcare provider right away if you have signs and symptoms of a blood clot in the leg, such as swelling, pain, or tenderness in your leg.

People with chronic liver disease may be at risk for a type of blood clot in the stomach area. Tell your healthcare provider right away if you have stomach area pain that may be a symptom of this type of blood clot.

PROMACTA should be used only in people with chronic ITP whose low blood platelet counts and clinical condition increase their risk for bleeding. PROMACTA is not used to make your platelet count normal. It is not known if PROMACTA is safe and effective in children.

www.promacta.com/citp/faqs.html

Use the lowest dose of PROMACTA to achieve and maintain a platelet count ≥
50 x 10 9/L as necessary to reduce the risk for bleeding. Dose adjustments are based upon the platelet count response. Do not use PROMACTA in an attempt to normalize platelet counts
[see Warnings and Precautions (5.4)]. Take PROMACTA on an empty stomach (1 hour before or 2 hours after a meal)

www.accessdata.fda.gov/drugsatfda_docs/label/2008/022291lbl.pdf

As for the cold, you can pretty much use any OTC cold medicine, but preferably one with Acetaminophen instead of Ibuprofen. Use the night time kind, not the day time as that might cause more anxiety. Guaifenesin is great for congestion, but you might want to avoid that. It can cause a hyper feeling which you do not want while on Prednisone. Using saline nasal rinses can help and are harmless, as well as Robitussin and cough drops. There isn't much you can do for a cold except ride it out and yes, colds and viruses can affect platelet counts temporarily. It can happen to people without ITP also but they generally don't even know it unless they happen to have a CBC.

Sandi,

Thanks for the info. I don't have any problems advocating for myself and my hemo and I have had several conversations regarding meds already. Since I seem to question so much he told me I'm fun to work with! Actually that drug would be especially dangerous for me because of my age. Heart attacks and strokes because more of a reality as we age.

I have a question that may seem weird but I'm curious. I have read somewhere a very long list of foods people with ITP should never eat. Reading it I felt like the only thing that was left was maybe some lettuce and a carrot it was that long. Is there any truth to certain foods creating our counts to go lower? How about diet sodas - are they something that could contribute to our low counts? Sometimes there is just too much information out there that makes finding the important and correct ones very difficult.

Maybe I should only read this site!

Renee

We had a discussion on this just recently. No foods cause a lowering of count but some do, in large quantities, cause the blood to be less sticky and so if you were to cut yourself you would bleed that bit more easily. But most of us eat and drink what we like. I've never been told by a doctor to avoid any foods. I think the effect is minimal and not worth worrying about.

Many of the foods on the warning list do not lower platelets, but they can thin the blood. So, if a person has very low counts, they might not want to eat some of the things that are listed. Having said that, many of us have never followed the list. When I was diagnosed back in 1998, there wasn't any list to follow and I miraculously survived. Its up to you to decide what is going to work for you.

As far as diet soda, I have read a lot of articles about aspartame and autoimmune disorders. I do believe that the chemicals put into food and drinks can cause harm to cells and tissues. But again, it is up to you to decide whether to eliminate certain things or not.

I'm glad that you have a good rapport (repore) with your Hemo. If he doesn't mind the questions, keep it up.

People with ITP are more prone to blood clots as it is. Here are some articles:

www.medpagetoday.com/MeetingCoverage/ASHHematology/12103

www.ncbi.nlm.nih.gov/pubmed/23530551

LOL.. Sandi and I say virtually the same thing but she says it so much more authoritatively than me. ROFL. I'll work on it (but probably never improve).. haha.
[Her spelling is crap though.. it's rapport!]

Thanks for the info on the food. You two are funny!!!!!

Ann, I didn't see your first post about food until I'd finished mine, so I did laugh to see what you'd written. We do agree on most things. Okay, I had a 'duh' moment with the word! I admit it. It doesn't happen very often! :silly: :silly: :silly: