Tiredness

Hello to all, this is my first post. I am a 56 yr ole(LOL)lady.....Doc put me on predisone for 2 weeks and then took me directly off of them as it lowered my count even more. So I am now doing 4 treatments of Rituxan. Had 2 different reactions on the first treatment, which they stopped twice took all day to get the treatment accomplished. So now I have had my second treatment which they gave me some kind of shot to counter react the reactions ahead of time. I did so much better on this one, I slept through most of it....which was a good thing. I have 2 more to go.
My body just runs down out of nowhere. I can get up and wash dishes, then I have to sit down and lay back on my recliner and take a nap as my body just gives out. I have hardly no energy. Is this a normal process with ITP? I can take 5 min naps several times a day and some turn out to be 2 hr naps. Was just wondering if anyone else has this issue too.

Some people feel tired with ITP and some do not. The treatments can also cause fatigue, especially Prednisone. Stopping the drug cold turkey (and tapering slowly)can cause fatigue that can last weeks.

What dose were you on?

Welcome
You are not an "ole" lady.
The shot may have been Benadryl to reduce reaction chances. I also slept through most of the treatments.

I experience fatigue when counts are low. Prednisone did not work for me either. My first treatment of Rituxan took aproximatly 14hrs. The other three were aproximatly 8-9hrs. I had a reaction the first treatment of my second round of Rituxan. Treatment was stopped and meds to counter the reaction were given. Treatment was started about an hour later. The other three took aproximatly 3-4hrs. Rituxan can take several weeks after the last treatment before you con see results. Welcome to the "Rollercoaster" ride we call ITP!!

Thank you Sandi and Dean for your reply's.

Sandi the first week I took 20 mg tabs 2-two times a day, then the second week I took 20 mg tabs 2-three times a day. The second week I was so miserable, my son and husband wanted to stay away (LOL) I too wanted to stay away from me! When I went back to the doc and he just shook his head I knew something was up. And I told him I was so miserable, he asked me what all was happening and he said stop taking it now. Then he preceded to tell me my platelets had fallen even more and that I had to do these treatments. He said I had no choice cause he was concerned if we didn't get my platelets up now we were never going to get them up.

Dean I sure feel ole, I have alot of other health issues too and now this ITP definitely has me on a rollercoaster. Glad I will be on it with friends here and we can share our ups and downs. Wow 14 hrs, I thought mine was a long day at 9 hrs then 8 hrs. The first treatment I had one bag of Benadryl and two tylenols, they said that I will have to do that before every treatment. But then when I had my first reaction they gave me another bag of Benadryl then on my second reaction they gave me a shot of something. They didn't want to start the Rituxan back up, then the doc came in for the third time checking on me and he was talking to me and then he told the nurses that I was just all loopy after all the meds so start it back up and run it through. Then after he left, the nurse laughed and said I think he just said you were snockered....LOL

Sorry to hear of other health issues!!!
Benadryl and Tylenol was given before each of my treatments. I believe the Benadryl was IV form. This Rollercoaster ride is not as fun as the amusement parks!!!

Yes the Benadryl was IV....

Stopping Prednisone like that could be causing some of the fatigue.

I've never heard that waiting to get counts up will mean they will never go up, and Rituxan sure isn't the way to do that quickly. How are your counts now?

No blood work during my treatments so I have no clue. Maybe his concern about not getting them up is because I have a lowzy family doc. Come to find out my platelets have been down for over 2 yrs and my family doc has never said anything to me about them. It took me going to a Rheumatologist for a consult to find out what autoimmune problem I was having. I went on a Friday and on Sat that doctor called me late afternoon and told me I was in the danger zone. He said I would be okay for the week-end and to get with my family doc on Monday. He explained to me what not to do and what to do if something would happen over the week-end. So on Monday morning my family doc got me in to see a Hemo doc, and he was so upset that this has been going on for over 2 yrs. The Rheamatologist was upset that my family doc had never given me a physical examination and told me I could find another family doc if I wanted too....LOL Well after my husbands situation and now to find out about this, we are looking for another one. Hope to find one soon!

I think they are not doing any blood tests during my treatments because they need my veins for the IV....LOL

I am one of the hard ones to get blood from, they roll, colapse and sometimes they just can't get any blood from my veins. Seems the older I get the worse my veins are and they are so tiny too.

I'm sorry - but they should be doing blood work during all of this. Have they ever tried a butterfly needle?

I always got the IV's in my hand and the blood work from the arm so there was no conflict. How on earth can you track what counts are doing without a CBC?

If your platelets were above 50 in the past two years when your doctor didn't tell you about the lower counts, that's fine. People don't treat above 50 anyway. If they were below 50, I'd look for another doctor too.

If you have had blood work done within those two years,(CBC) any Platelet count under 150k should have shown (L). Not necessarily treatment needed but a precaution to keep an eye on the counts. I had a bone marrow biopsy around 100k to rule out other possible causes of low Platelets. I would seriously consider finding another Dr.

Sandi yes they use the butterfly needle all the time for blood work that is the only way they can get my blood. They always have to warm up my arms too!

I went for my treatment today and asked her why they wasn't doing any blood work during my treatments. She said when they do these treatments they wait until the last treatment to finish then they will do blood work then I will have an appt with the doc. To see what the next steps will be. One more treatment next week, then I will see where we are on the situation.

Dean the way I understand it is my counts have been under 60 for over 2 yrs and fluxating downward and then back up. I'm not sure what the top number is for the danger zone, but I was alerted by the Rheumatologist when my platelets were 26 as being in the danger zone. I have went up to 32 and then I dropped back down to 26 then the prednisone dropped me down to 23.

My treatment went really great today and fast, I couldn"t believe it I was in at 10 and out at 2. Which I really needed to get back home as my husband had a scope this morning and I hated leaving him home alone. So it was good to get back home early...today!

I am looking for a good family doc if anyone knows of one around the Ft Wayne, In area just let me know....So I can check them out. I told my husband we would make group appt to meet the docs and then we would decide on who we feel most confident with. I just wish my old family doc would come back, he gave up practice and went into ER.

By the way my name is Tonia, Banana is my nickname.

Glad to hear the treatment went well/fast. The range for Platelets is 150-450k. I was not tested until after my 4th treatment. Counts did not respond until several weeks later. It was a slow climb.
After looking at my records, my count was actually 30k when I had a marrow biopsy. I dropped from 80k-30k in a few weeks. I have been blaming stress for my ITP, but thinking back a viral infection seems to be the likely culprit. The stress of moving followed by depression did not help at all!!!
Good luck with your last treatment Tonia!! Platelets UP!!!

No CBC's? Would you have gone a month without one if you weren't having Rituxan?

My counts were below 10 when I was having it done. I thought it was kind of important. I'm usually one to blow things off too.

Dean my drop to the danger zone could possibly be from stress....What is the range they consider Danger Zone, I know 10 is considered critical.

Sandi, I'm new to ITP, when they first diagnosed me I was doing weekly counts until I started Rituxan. How often do you do CBC's? What is the normal for ITP?

Hi Tonia,
I think the danger Zone depends on what sort of symptoms you have, My doctor doesn't like my counts very low because I am a bit of a bleeder, but some people on here seem to go ok even with counts under 10 so like everything else with ITP I think it depends on the Doctor and the person, lifestyle, risk you know all the usual ITP stuff what right for one may be not right for another.
You probably already do this but do you drink lot's of water before you blood count, I have trouble with blood counts too, the guys at the lab run and hide when they see me walk in. I think it's a bit of "ok who wants her this time"

Banana, please don't think that a count of 10 is critical. That's such a scary term and no count is really critical unless you're a heavy bleeder and then you'll know what's critical for you. I have nose bleeds and mouth blisters and apparently some micro blood in the urine at low counts but it's not critical. When I was diagnosed I was under 10 for quite a while and nothing happened.

Most doctors will want to treat at counts of under 30 because daily living without worrying about being extra careful needs a count that high. Some doctors wait till 20 to treat and latterly mine waited until 10. So it's all so variable and as you go on you'll get to know yourself and you'll relax a bit more so that lower counts don't worry you as much.

How often you have a count done depends on so many things. If they aren't going to do anything about a low count why bother to check it will be their thinking which is pretty sound really. It's what my haematologist said to me about checking my white count recently. We aren't going to treat so no point in the stress of checking it and worrying about the result.

Ann, I think you are so right about the whole critical thing, and When I first got ITP it was a bit of a funny story (not funny that I had ITP) but I was at work and had a massive bleed and went to the hospital, I was admitted because I needed transfusions and I needed these for about five or six days, but after about two days and I wasn't getting any visitors apart from family and I thought all my friends had deserted me, why wasn't anyone visiting me? so I decided to call someone from my work to see if I had done something wrong anyway turns out the hospital was telling everyone when they called that I was listed as critical so my friends thought I was in a really bad way. I actually was fine just, my counts were only at 2 but I felt no different, a little tired but that was from the blood loss but still doing everything for myself, just going about my day (my friends had imagined that I was on life support or something) they were certainly surprised when they seen me.
I am not a doctor or a nurse so I have no idea at how they list people but I didn't consider me to be critical.

Hi Tonia,
I agree with Ann--that a count of 10 isn't necessary critical. I had a count from 1-4 for at least two weeks. I was bleeding (mouth blisters) and bruising for a while; but, not really that bad. After the two weeks, I was able to leave the hospital with a count of 12,000--but 1 1/2 weeks later, my count went back to 1. Actually, even at 1 I didn't really feel that bad. Just a little light headed. The main thing is to try and take care of yourself. I have found this to work for me. I seem to get very, very tired when I am stressed out--so I really think stress does play a part in ITP. I was stressed out just lately over an incident (something out of my control) and I went to bed and slept for almost 14 hours.

So, if you are not showing a lot of signs of bleeding, platelets at 30 isn't really bad. I actually think I could live with platelets at 30 if I had to.

Good luck to you,
Dee Dee

Tonia, I have a CBC done when my "gut feeling" tells me to. I agree with the "danger zone" varying from person to person depending on symptoms. I disagree with counts under 10k not being considered "critical". You do not have to necessarily be a "bleeder" for counts under 10k to be critical. Internal hemorrhaging is the biggest issue with counts this low. External bleeding can be seen adressed, whereas with internal hemorrhaging one could bleed to death without knowing there is an issue. I am pretty sure any Dr. will say that 10k is critical. I am not trying to scare you but I also do not want you to downplay counts that low!! Listen to your Dr. and listen to your "gut". Milly, you were recieving transfussions for 5-6days and the Hospital was restricting visitors. You did'nt consider that Critical???Ann/Milly, what do you consider critical??

Dean, the hospital wasn't restricting visitors, they where just telling people that I was listed as critical and the friends were assuming that I couldn't have visitors, I was really ok, I was being really well looked after and they where replacing the blood that I was loosing and I didn't really at any time panic, everything seemed to be under control.
Dean I guess I am just not a "label" sort of person and as per previous comments that I have made on other posts that we have been on together, I do consider counts under 10 or even 30 for me to need treatment and I will always look for that treatment. I have very regular blood tests and I hope I didn't sound that I was making that situation sound trivial, I know it was serious but I think I consider critical to be more like getting close to being on life support.
I do take this seriously and I didn't mean to offend anyone.

Dean, the bleeding I had was internal and it is painful so I think you will know if your bleeding internally.

There have been several people who have posted on this board who have had to live with counts at 5,000. They have done so for at least two or more years that I know of. So, sometimes you don't have a choice; all treatments can fail for some people. I know when my counts were under 10 I didn't show signs of bleeding after a while. The doctor from USC was amazed at how little petachaie I had and only an occasional blood blister. But, I was following all the methods listed to help keep you from bleeding. This helped out quite a bit. And, if you panic and stress out, this makes it worse.

I agree DeeDee. Panicing/stressing out over it does not help at all. I do not cause anyone unnecessary panic/stress over ITP, but I also do not want those new to ITP to not take counts that low lightly.

Milly, No hard feelings!!!! Agree to disagree.

Thanks Dean, mostly we agree on things, similar thinkers I think.

If you were getting counts done once a week before Rituxan, I'd say you should be getting them once a week during Rituxan. I'd want to track my counts and see if they were responding and when that response began. It's normal to track counts during treatments so you know if it's working.

Counts under 10 can be critical for some and not for others. My doctor didn't consider that critical or he wouldn't have sent me on my merry way like he did. I wasn't so sure at the time because I was feeling light headed a lot and pretty weak and shaky. I was wishing he'd tell me to go home, but he kept pushing me to keep working. I then felt that I didn't really have a medical excuse to not work, so I did. The office was very busy and they needed me. I had nasty bruises and petechiae but apparently that wasn't enough of a reason to stay home. I've never had a nose bleed or blood blister.

If a person has some serious bleeding going on under 10, that would be considered critical. It happens. I wouldn't just go by the count though because some people do just fine.

Sandy,
That wasn't very nice of your doctor. The first time my counts dropped I was still working and I insisted that the doctor give me some time off from work. You just don't feel that well to be working and you risk bumping into something and hurting yourself even more. I had Kaiser for a while--and they didn't seem to care what I did; so I had to insist and complain with them. And, besides, my brain didn't seem to function that well with all the steriods.

Dee Dee - Compared to what I'm going through these days, working like that back then was nothing. I'm still pluggin'.

The only thing I ever bumped was my leg - every time I got up out of my desk area I whacked my thigh on the desk corner. You'd think I'd have learned after a few times.

milly wrote: Thanks Dean, mostly we agree on things, similar thinkers I think.

I also feel we think alike Milly.

In Australia you get sick leave as part of employment, how does it work in the USA?

All companies are different. I get 7 sick days a year. I mostly just use them for doctor appointments.

And if you work for a small, little company, you sometimes don't get any benefits for sick leave. It really sucks sometimes.