Feeling Very Discouraged

In May my numbers dropped to the teens so my hemo put me on 60mgs. Prednisone. The first week it raised my count to 117 but then I got very sick (I think the dosage was too high) and the numbers dropped back to 42 in 3 weeks. He decreased the dosage and started me on Rituxin. After the first treatment my count was 83 so he reduced the Prednisone again. After my second treatment my court was 34. I just had my 3rd treatment yesterday and am on 10 mgs. of Prednisone.

I am so discouraged and feel like I must be doing something wrong. Is it that diet soda I drank? Or maybe that candy bar I ate?

I was originally diagnosed in April with a count of 32. Once again I have the blood sores in my mouth and a lot of bruises. Today I have been depressed and feeling like it is all hopeless. I hate this disease and I hate all the drugs. My hemo thought Rituxin would work for me (obviously the Prednisone didn't) but now I'm not so sure. And reading all of the side effects of all of the other drugs I really don't even want to try them.

So . . . how do you all handle this emotionally? :S

Renee,

Hang in there. I'm guessing the prednisone taper isn't helping with the emotions right now either. I was in a very similar situation a year and a half ago. I failed prednisone and Rituxin and was very depressed and anxious. I will tell you it does get easier emotionally, but unfortunately it is a series of trial and error with treatments. We figured out TPO's do work for me.

I was convinced nothing would work. My doctor said I should start prepping for a spleenectomy. I felt like I had been rushed into 5 million treatments and wasn't ready. I gave up all treatments and had a meltdown. Then my dad convinced me to get a second opinion. Having a doctor who was an expert on itp and was willing to work with me and explain everything to me and be patient with treatments really helped.

Thank you for your response. I never thought about the prednisone taper having anything to do with my blue, sad day. Actually I do like my hemo and trust that he knows what he is doing. He lists ITP as one of the conditions he treats but who knows if he is an expert.

Sorry you failed with both prednisones and Rituxin. How are you doing now? I don't know what TPO's are? Is that another treatment?

I'm glad I brought that up. Yes tapering off steroids can make you feel very depressed, tired and achy, hang in there! I promise it will pass and you will feel like yourself again soon.

If you are happy with your doctor and makes you feel comfortable than keep him. Mine was the freak out type and so an anxious doc and anxious patient was a terrible mix.

TPO's are medicines that make your bone marrow produce more platelets to compensate for the ones being destroyed. The goal is to have a count of 50 or above, which is considered a safe range. I responded to Nplate which is a weekly shot at the hems. Then I tried Promacta which is a daily pill. I'm on it now.

Looking back two yeas ago I never thought I would be where I'm at today. I am very active. I workout 5 days a week. Im a special education teacher and live a very typical life.

Renee:

Rituxan usually doesn't begin to work until 4 to 12 weeks after the first infusion. Very few people see a response before that. It's too soon. Prednisone does work for you, but the taper is too fast which is why your counts are dropping like this. 60 mg's is a typical starting dose and the side effects are nasty. Tapering that fast can cause feelings of depression, so I'd chalk it up to the drug. Neither of your treatments have been given enough time to work, so hang in there until they do. There are still other options and it takes time to get to a point where counts are stable. I know it seems like you've been at this for a long time, but three months isn't long at all as far as ITP goes.

It's not the candy bar, it's not the diet soda. You'll drive yourself nuts if you play that game. As long as your count is above 30k, you are at a safe count. Try to be patient and give it time to work. If your doctor is thinking that Rituxan is failing already, then he is not all that familiar with ITP.

Hi Renee,

You might have misunderstood your doc when he said Rituxin does not work. It might just not be enough at the moment to keep your count up to a comfortable level.

Cortisone like prednisone usually makes you dumb and happy. (and maybe agressive since it is similar to adrenalin) Tapering off has the opposite effect. There is a medical condition called cortisone depression. This is very common during tapering.

It might be a good idea to let the people around you know that you currently take prednisone and might overreact and that you might also have some depression sympthoms.

You'll get thru it!

Cheers,
Joerg

Hi Sandy,

The reason my hemo is dropping my Prednisone so quick is because it make me very sick. Besides the normal side effects I also developed what felt like a flu that was worse then any I had ever had. I was very sick until he took me down to 20 mgs. so he wants me off as quickly as he can taper me. My body just didn't do well with that drug. And I guess I thought the Rituxin was working after the first treatment because my numbers had gone up substantially. I obviously am having no patience with waiting for drugs to begin working. My hemo says he has hope that the Rituxin will work for me. When I left his office he told me not to worry and gave me a hug. Nice guy.

I had a bloody nose the other day that took me an hour to get it to stop. I think that's what started me being so scared and impatient. I can be a big baby at times!

Thanks for the reality check about what I put in my body. I keep thinking it's something I'm doing to make my counts yo-yo so much. And I keep hearing about certain foods causing ITP or contributing to low counts. I have to stop reading the internet. :S

Renee - foods don't cause counts to drop, but they can make platelets less sticky. Some people may have a sensitivity to certain foods that can possibly trigger ITP, but it can take a long time to determine what they are. Counts go up and down often for no apparent reason, probably due to the amount of anti-platelet antibodies that a person produces.

I had my 4th Rituxin treatment today and my count is 28, down from 34 last week. I had a weird bleed on my arm and the usual mouth sores and bloody nose. My hemo said he doesn't want to up my prednisone and is not sure if he wants me to do another round of Rituxin or switch to Promacta and will decide next week after he sees my count. It's frustrating that I can't keep my numbers from dropping or from yoyoing. Such a crazy disease!

Renee,

Hang in there! I think Sandi said it could take up to 12 weeks from the initial injection for it to kick in. My original hems wanted to rush and have my spleen out the week after the final dose. I did end up having no response to Rituxin but do respond to Promacta. So you could still respond to Rituxin or eventually you could try another treatment and succeed. Finding a treatment that works is emotionally helpful.

You shouldn't need any more rituxan. In fact two doses are likely enough in most cases. It's just a matter of waiting. If you start on promacta you won't know what is working. If you aren't having dangerous bleeding, maybe you could give rituxan a little more time. It seems like most people who have a response here had it in week 5. But like Sandi said, it could take up to 12 weeks.
Erica

Thanks for the responses. I had forgotten it can take that long to see a result - that was a good suggestion to wait a while to see if it does work before trying another. I think my hemo is just very concerned about my low numbers. He and I both ruled out having my spleen removed because of my age - I'm 68 and the research on older people is not very encouraging. I just need to advocate for myself if he pushes starting some other drug before more time has lapsed. As long as my symptoms aren't too severe maybe he will be okay with that.

I'm with Erica. Any additional Rituxan would be useless. If it doesn't work after 4 treatments, it's not going to work after 8. It's still early though. Your counts are fairly safe, although people over 60 years old do not tolerate low counts as well as a younger patient. How are your symptoms? Sometimes that is more important than the numbers.

I'd give it a few more weeks and maybe consider Promacta.

Renee,

You figured it out! You have to be your own advocate. My personal theory is that most hemas/oncologists see mostly cancer patients. They think let's throw all these treatments out there to kill the disease. They don't realize that most of the time ITP is not a life or death situation so they have time to let treatments kick in, unlike cancer. My hema would freak out with low numbers. After being on here and seeing that some are living with low counts, and I didn't have any major bleeding issues, even with counts of 2, I began to relax a little.

Hi Sandi,

Its funny but with low counts like I have now I generally have a lot of symptoms. However this time I only have a few small blood blisters in my mouth and some nasty looking bruises. Doesn't mean I won't get a bloody nose tomorrow though! I'm extremely tired which was expected but I just don't feel like my count is accurate.

I am having a new side effect to Prednisone - my hair is beginning to fall out. Not funny. :woohoo: The wonder drug that just keeps on giving!!!

Thanks for your comment. I think because I'm still so new with having ITP I forget to relax and just be instead of obsession of my count numbers. I think too because of my age it scares me when I read about age being a factor. But then maybe at 28 I still would have been a mess - who knows.

I like the wait and see suggestions instead of just jumping into another treatment. I'll see next week when I see my hemo if he is in agreement with me. Should be interesting!

I feel your pain. We seem in similar situations.
I'm 64. Four years ago, I was on prednisone for 8 months, tapered off, and count held safe for 3 years. Then it crashed 11 months ago, so I've been on pred since then. This time around, every time I try to taper, the count falls into the teens or below. I have only about two thirds the hair I used to have, have gained 15 pounds, and have round the clock heartburn. I am SO done with prednisone.

Unlike your doctor, though, mine thinks splenectomy is a fine idea and wants me to do it.
Or Rituxan, since I've adamantly refused surgery.
I'm not ready for that either.

One thing I know... There's no rush. Take your time to understand all the treatments and their pluses and risks before you decide anything.

I don't know about you, but I feel being an older ITP patient is fortunate. I did riskier activities when I was younger, ones with higher risk of bleeding injuries. I'm glad I don't have to worry about ITP and menses or childbirth. The only thing that concerns me now is brain bleed. Yes, the literature says that you and I are at greater risk of that. But then I think ... All people 65+ are at higher risk of brain bleed, ITP or not. Are they figuring that into the statistics?

Hope you and I both will be able to get off this icky "wonder drug" very soon.

Maybe you are right that it is easier when we are older. I too engaged in many high risk activities when I was younger but now respect my age and have become more careful - and that was prior to my ITP diagnosis. I can't even image having a baby with ITP!

I read the side effects on the drugs that drs. use for us and am very turned off by the listed side effects like brain bleed, stroke and heart attack. I am already at high risk for these so why would I want to take a drug that can cause them? Yet I am afraid not to treat this. Prednisone was a nightmare for me. I am still on 10 mgs. but the side effects are now pretty mild. My hemo gave me a prescription for heartburn that works. I too have gained 15 pounds and don't seem to be losing any of them yet.

Although my counts are low I am still hoping I will have a positive effect from the Rituxin. I would like to wait a few weeks to see if anything happens before trying anything else. I simply don't like putting all of these drugs in my body and then having to take more drugs to counteract the side effects. Something is so very wrong with that picture!

Unfortunately, most autoimmune disorders must be treated with drugs that have side effects. All you can do is weigh the benefits vs risks and make a decision.

renee106 wrote: I read the side effects on the drugs that drs. use for us and am very turned off by the listed side effects like brain bleed, stroke and heart attack. I am already at high risk for these so why would I want to take a drug that can cause them? Yet I am afraid not to treat this. Prednisone was a nightmare for me. I am still on 10 mgs. but the side effects are now pretty mild. My hemo gave me a prescription for heartburn that works.

My feelings exactly! It's very hard going from being someone who was never sick enough to need more than 4 or 5 primary care visits for illness during my adult life to someone who needs office visits and blood draws every couple of weeks. Plus... There is no sense of 'illness' with my ITP. To feel perfectly healthy and be told you should have high-intensity drug therapy to 'fix' a problem that is mostly invisible.... Well, it just feels wrong to put toxic chemicals into a body that - at least on the surface - doesn't appear to need it.

OTC Pepcid does help my heartburn, but I'm reluctant to take it and usually only do as a last resort. Famotidine and its class have the potential to cause bone loss, because it inhibits calcium absorption. Well... So does the Prednisone. Double whammy on the bones. It's just such a convoluted mess of side effects vs. (somewhat questionable) benefits that sometimes I just can't think straight.

At least you're past the Rituxan decision and treatment now. I'll keep my fingers crossed for you that it works well, and I hope you'll update us on the ultimate result.

I saw my hemo and my counts went from 26 last week to 38. He thinks I'm on the rise and is putting me in a holding pattern - I go for counts for the next 2 weeks then see him again in 3 weeks if my counts don't drop. The only symptoms I have been having are blood blisters in my mouth. He is leaving me on 10mgs. prednisone because every time he lowers it my counts drop again. He is hoping the rise is from the Rituxin treatment and they will continue to increase.

Since my diagnosis I have not had the same count 2 weeks in a row - they are all over the place. I would love to get the same reading a few weeks in a row. Won't that be wonderful! I just don't get the yoyo effect.

I'm glad your counts are on the rise! Let's hope they continue to go up and the Rituxin is working!

Renee:

Platelet counts fluctuate constantly due to constant production and destruction. It would be more unusual to get the same count than it is to get differing counts. People without ITP fluctuate too, and if you'd get a count every hour, it would probably be different. You have to look and see if there is a trend upwards or downwards; that will tell you more about where you are headed. Going from 20's to 30's and back again is normal fluctuation. Many people yo yo and that is okay as long as you don't have bleeding. Blood blisters are a bit unusual at 38k, but may be because you are going up and down some.

Hi Sandi,

I think its the yoyo from 83 one week to 34 the next that drives me crazy. I know there is a variation but it shouldn't be that much. The blood blisters in my mouth are gone but I still have them on my lips - they must take longer to heal. Other then low energy I don't feel bad and can only hope the Rutixin is doing its job! I still am planning on giving it a couple of more weeks before moving on to another drug.

ITP can and does cause fluctuations like that. All you can do is try to accept it for what it is and try to relax. As long as you are at a safe level, that's what matters. You are being monitored and treated when necessary, so you'll be okay.

I know Sandi, I just need to relax and breath. Some day maybe it might even happen. :lol:

I know how you feel. I feel the same. I just want to find the treatment that works for me. I haven't found one yet. I need to talk to my doctor about other options besides IVIG which only rise my numbers up for a week or so and drop down low. I am glad that I am not alone. I hope you find the treatment that work for you and everyone else too who are in the same situation.

Hang in there newbies! It does get easier and there are many treatments you can try. I remember going through the same thing. I'd have IVIG and then drop and have IVIG and then drop. I failed Rituxin and prednisone but do respond to Nplate and Promacta. It took time to figure it out though so as hard as it is, be patient. I would say try to find fun things to do and be around great people in the mean time. I did a lot of stressing and freaking and looking back I shouldn't have. I hope that makes sense.

Thanks for your comments Vdeutsch85. My hemo has talked to me about Promacta as the next drug to try but I'm not ready to give up on Rituxin yet. I was doing okay but today got blood blisters in my mouth again which generally means my counts fell below 30. I have an appointment on Tuesday and will see what the count is then. It's only been 2 weeks since my last Rituxin treatments so I don't know if he is going to push moving on or not.

I have been trying to do more social things lately and that does help. But I still stress way too much and patience has never been one of my strong suits. I think in time you adjust and learn to just let it go. But I'm still waiting for that day!

It takes time but it does get easier. I'm not one for patience either.