so weak!!!

I was diagnose and hospitalized on June 2 with a count of 2000. I have had 2 rounds of IVIG and am going in on Tuesday for my 3rd Rituxin. I am also on predisone and it is giving me the shakes. I am so weak..I can't hardly put 1 foot in front of the other. When I had my last count checked it was 151K. I have always been a person that could outlast and outwork anyone. What is going on? I want my old life back. Is this normal for this disease?

The side effects of the drugs they give are worse than the disease itself, especially when they insist on giving multiple drugs at once. The trick is to refuse to take more than one at a time and if you're me, as soon as the side effects become intolerable, refuse to take that one at all. Of course you can only do that once you know that you can cope with low counts for a while without any really bad bleeding. If you have blood in the urine or nose bleeds that don't stop for hours, then you have to be more careful.

Prednisone can cause a lot of weakness when you start tapering. I had jello legs for weeks. You should start to feel better once you are off of it for a few weeks.

Went to the dr nd cout went fron 151000 down to 80000. Got 3rd Rituxin and am scheduled to go back next week for 4th Rituxin. My dr has me scheduled to see another specialist in the next few weeks. He also doubled my Predisone..now taking 60 mg a day. I am so tired of this!!!

It sounds like the prednisone is not doing any good so why not tell the doctor that you want to come off it. You will need to taper slowly off it as it is dangerous to stop suddenly but it's your body and your choices. I had the shakes from pred too and I'm sorry to say that it took a full year off the drug for the shakes to completely stop. I wouldn't get it all the time but often enough to be embarrassing.

You need to taper off the Prednisone and focus on just the Rituxin!! I do not understand why your Dr is doubling the Prednisone while on Rituxin. In my opinion he should have tapered you off Prednisone prior to Rituxin. Do not expect an instant response to Rituxin. It can take several weeks after the last treatment before results can be seen. Ups and downs are NORMAL so DO NOT get discouraged!!! I would tell your Dr you want to taper off the Prednisone and see how the Rituxin responds.

Have finished the 4th Rituxin and in the last 2 weeks my count has been going down..132,000 then 123,000 to 109,000 and now at 101,000. But now am developing fatty tumors which after having a sonogram and CT scan to verify they are fatty tumors 3 drs are telling me it could be from the predisone but they are not sure. The only thng they are saying is they will not remove unless it starts to cause problems. It is the size of a golf ball and is on my neck. DR's are afraid to remove it cause they said my count could bottom out. I am slowly being weaned from the predisone..20 mg per day.
Also is it the disease or the medication that is causing me to have shortness of breath?

Prednisone can cause shortness of breath. I remember that vividly!

Are your fatty tumours called lipomas? I have two of those in my thigh. I didn't know they were anything to do with the steroids although I had been on steroids at the time. I just thought it was a coincidence but maybe not then.

Ann....Yes they are called lipomas

Sandie...this shortness of breath is a killer.

It gets better once you are off of Prednisone for a while. Keep your eye on the light at the end of the tunnel.

It happend to me too, I was so weak and no energy this is new for me I was in the hospital for 3 day ,two day layer I was in the hospital again I was really concert because I'm a active person and I was not ale to walk or do things on my own for the first 6 day , I hope you feel better .

The rixturian wore me out the were a few days where I couldn't get off the coach and the predison on top of it was rough. I have so hard of a time judging if its itp or the medicin that has me so tired. Just hang in there it gets better.

Phyllis - I can't believe your doctors are talking about your numbers "bottoming out" when you are now above 100k! That is ridiculous - in fact, I don't even know why they are treating you at ALL after getting your numbers that high. Please know that your numbers are now really close to normal, and you have nothing to be scared about. After getting you out of the 2000's, they should not be using terms like "bottoming out" with you.

I totally agree that they should be trying ONE drug at a time, And giving it ample time to take effect before adding in another drug. Especially with numbers that high - you certainly aren't in any sort of imminent danger, so why two drugs? I'm glad you are beginning to wean off the prednisone.

I get shortness of breath when my numbers are very low - like under 10k. I get this feeling deep in my chest. I can also sleep 10 hours without feeling groggy at all.

Good luck Phyllis, and don't let those doctors scare you too much. Your numbers are high enough to do anything you want - roller skate, snowboard..... The goal with ITP is not to get the numbers to stay at one magic place, rather to keep them above a threshold. So you will have ups and downs, and as long as they are within the threshold, you are good, which it sounds like you are right now. The 150 to 100 movement is fine. Try to not let the prednisone upset you too much, though it's hard!

After 4 rounds of Rituxan, which ended on July 15, my count has slowly gone down hill. I am now at 54000 and feel like i am fighting a losing battle. my hemo dr is in conference with a specialist and they will talk to me on Wed to discuss what they think is the next plan.

It's not a losing battle. It just takes time to get to a good point both physically and emotionally. You'll get there.

phyllis2155 wrote: After 4 rounds of Rituxan, which ended on July 15, my count has slowly gone down hill. I am now at 54000 and feel like i am fighting a losing battle. my hemo dr is in conference with a specialist and they will talk to me on Wed to discuss what they think is the next plan.

How do you feel with that count? If you are feeling fine with no symptoms, then you may not need to treat. Try not to let it get you down. Emotional stress can have an impact on your physical/mental health. I went through depression after being diagnosed. As Sandi said, you will get there. Stay positive!!!

Dean..I am feeling tired. I told my husband a few days before they tested me that my count was going down. I get really tired easily and just not my normal self.

I get fatigue with low counts too, counts many consider safe. When I catch myself thinking, oh I don't think I want to walk across that parking lot, I'll just wait in the car - I know something isn't right with my health.
Erica

phyllis2155 wrote: Dean..I am feeling tired. I told my husband a few days before they tested me that my count was going down. I get really tired easily and just not my normal self.

I could also tell when my counts were dropping. Had no energy. Also had low Iron, so that was a part of having no energy. Are you stressing out over it all? Cause that can also contribute to feeling exhausted.

I am not stressing about my counts but my family is. today was not a good day...had to push myself to get through it. No energy. I have made a decision that if my counts are really low and the dr wants me to go back on predisone I am going to refuse to take it. My family is not happy but i can't handle it again.

Phylis:

I totally understand not wanting to go back on the prednisone. I hated it, and I've pretty much just said "not for me" and written it off. I've let my numbers sit much lower than many people would in refusal to take prednisone.

But there are other this you can try,and some of them are not so bad at all.

You might be a candidate for Winrho. I had no troubled with this at all, although it did not give me the numbers I needed, it was a very easy medication to take.

I have had success with Dexamethasone. Even though it is described as being "six times more powerful than prednisone", the me at part of it is totally different. I don't know why, but it's much less taxing on my spirit, and they do it in a 40 mg per day/ 4 day "pulse". So you get through the whole thing in one week, and see where it takes your numbers. I describe Dexamethasone as a superman drug. Day 1-3, you feel like superman (it gives you a lot of energy). Day 4-6 you feel like someone gave you kryptonite. Day 7 you finally start to feel like Clark Kent.

Then there are the N-Plate and Promacta options. I haven't tried these yet, but lots of people have luck with them.

So there are lots of things you can try instead of prednisone. Try to not get discouraged. It's frustrating to get your footing when this is all new, but you'll get there. You'll find what works for you.