good days and bad days

[george40]

Hello everyone, just a quick thought/question. I had been feeling great the past couple of weeks then boom! its like everything crashes. Meaning my energy goes, feelings of nausea, just not feeling well. It may last a day or a few days and usually passes. Is this common and part of having 'good days and bad days'? I dont know if its related, but after I give myself the procrit shot I am noticing this more. Anyways, anyone else go through these streaks of feeling great and then a somewhat crash?

[peleroja]

I agree.  I go along feeling mostly pretty good, and then maybe one of my lines clots or my blood pressure tanks and then I feel lower than an ant's belly.  I guess it all comes with chronic illness.  I do what I can on my best and better days, and rest a lot on my not so good days.  I refuse to say "bad" days!  Hang in there.

[Dan.Larrabee]

Same for me and yes its frustrating..

[Sunny]

I go through bouts of good days and bad days. Sometimes I will have days of nausea and I begin to wonder when it will ever end. Then suddenly it does end, and I'm feeling pretty decent again. A lot of times I think it has to do with what I am eating or drinking, or how much energy I've been asking my little body to expend.It's so hard to determine exactly what it is all about.I guess it comes with the territory, but I wish I had a better handle on it.

[Restorer]

I go through good days and bad days also. They're usually matched with good nights and bad nights - how well I sleep. I haven't been able to determine external factors, but it's usually correlated with my hemoglobin, when I know it. The summer is usually mostly good days, and that's been when my hemoglobin is usually highest.

[Jean]

Hi
I am not yet on dialysis, but I have the same thing happen to me. I will be full ( well, relatively full ) of energy and think I can conquer the world for days on end, and suddenly I am depressed and want to hide in the corner and just generally feel blah!!!! I wonder if this is more a mental thing than a physical thing tho.
Jean

[jbeany]

George, are you getting the bad days right after the procrit shot?  A small percentage of people have bad reactions to the procrit - what the company graciously likes to call "flu-like" symptoms.  I was one of them.  Personally, I called the stuff a "baseball bat in a bottle".  I could pretty much count on not being able to get out of bed the entire day after taking Procrit the night before.  Every muscle ached, I was nauseous, headachy and just plain miserable. 
Switching to Aranesp helped me a lot.  I still am tired and wiped out about 8 hours after taking it, but no longer so sick I can't get out of bed. 

Keep track of your bad days, and see if they correlate with the Procrit.  You can ask to be switched to another form of epo if the Procrit is causing the symptoms.

[george40]

George, are you getting the bad days right after the procrit shot?  A small percentage of people have bad reactions to the procrit - what the company graciously likes to call "flu-like" symptoms.  I was one of them.  Personally, I called the stuff a "baseball bat in a bottle".  I could pretty much count on not being able to get out of bed the entire day after taking Procrit the night before.  Every muscle ached, I was nauseous, headachy and just plain miserable. 
Switching to Aranesp helped me a lot.  I still am tired and wiped out about 8 hours after taking it, but no longer so sick I can't get out of bed. 

Keep track of your bad days, and see if they correlate with the Procrit.  You can ask to be switched to another form of epo if the Procrit is causing the symptoms.

JBeany, I think your onto something with being drained after my procrit shot. I am going to pay attention to it after I do my shot tonight.

[jbeany]

Read the fine print in the mass of paperwork that comes with the meds.  When I was taking it, there was about one paragraph mentioning "flu-like" symptoms buried in about 10 pages of fine print.  Big stinking help!  For a while, I started taking it every other week, just so I was only losing 2 days out of the month instead of 4, but switching to Aranesp was a much better solution altogether.

[jbeany]

So, how did it go?  Do the bad days correlate with the Procrit?  Have you been able to talk to your doc about switching to aranesp?

[george40]

So, how did it go?  Do the bad days correlate with the Procrit?  Have you been able to talk to your doc about switching to aranesp?

Hi, okay the Procrit did slow me down the day I took it. I was taking aranesp at the hospital and to travel there for the weekly / biweekly shot would be a bit much. Procrit I do at home. Its about an hour each way. I also started taking iron faithfully and Im not slowing down as much.

[jbeany]

I took Aranesp at home, too.  It even comes in pre-packaged shots.  Wonder why they make you go to the hospital for it?

[mcmkids]

My husband was on Aranesp when he was going through chemo last year. He responded well to it and I think he felt a lot better on it. His hemaglobin had gone up to 12 and stayed in the 11-12 range for a while until he started dialysis. Now that he is being treated for his renal failure exclusively, the dialysis center's policy is to use epogen. He started on 4,000 u, then went up to 8,000 u and now he is on 10,000 u. I am not happy about it, but his blood count did go up some from last month, so we'll see. He has good and bad days too. Some times he goes through stretches where he is really tired and could sleep all day. I think that this is the case with any chronic illness. When people are used to being active and then they are not able to do as much as they used to do it is tough to adjust to. I hope you good days far outweigh your bad  

[CCStan]

My husband was on Aranesp when he was going through chemo last year. He responded well to it and I think he felt a lot better on it. His hemaglobin had gone up to 12 and stayed in the 11-12 range for a while until he started dialysis. Now that he is being treated for his renal failure exclusively, the dialysis center's policy is to use epogen. He started on 4,000 u, then went up to 8,000 u and now he is on 10,000 u. I am not happy about it, but his blood count did go up some from last month, so we'll see. He has good and bad days too. Some times he goes through stretches where he is really tired and could sleep all day. I think that this is the case with any chronic illness. When people are used to being active and then they are not able to do as much as they used to do it is tough to adjust to. I hope you good days far outweigh your bad  

Stan was on aranesp when he was CKD via the nephro. office as soon as he started PD they swicthed over to epogen.  It has something to do with medicare coverage, at least that is what they told us.  He was on medicare when he was CKD.  My thinking it has something to do with the amount of $$ the clinic receives   He is on 20,000 units per week.  I also feel he did better with aranesp, but can't afford 1500usd per week so it is epogen it is, no choice.

[george40]

thanks for jogging my memory. It was an insurance issue and only if epo does not work well for me then they would be allowed to give me aranesp. Im using my private pay insurance and should have medicare soon.

[MandaMe1986]

Just wanted to add my  in, even though it is what everone else is saying.  It happens I think we all have our good days and our bad. And if we are the lucky ones we  have more good then bad.  We just gotta hang in there.