Too Tired?

Hello everyone, wishing you well.
I read so many struggling on this forum. It's just so miserable. I am new to all this and cannot offer help, but do feel for what you are going through and say prayers asking for continued strength and better days ahead.
My post pales in comparison but I ask still about the terrible fatigue I seem to still have after Rituxan beginning
January 9 and ending February 14.
My platelets went as high as 428 and last week were at 417. This is good.
But I just feel different. It has been an entire year through high dose prednisone and all the gifts it has to offer...
then the Rituxan, so it's allot. But am I supposed to feel so tired body and soul still early March?
Life is not easy, we are in the end of a reno at one property and half moved....I had to put off finishing as I was just too tired. So we are kind of scattered some there some here....stressful. It's not what we had planned, life never is it seems.
But should I still be so blaaa? Should I call my doctor and mention it? I am so tired of feeling guilty for it.
Thanks, Sandy

Hi Sandy, have you ever had your thyroid checked? Back when I was diagnosed with hypothyroidism, that's what sent me to the doctor; I was always tired. My number was so low, the doctor was surprised I was even walking!
Just a thought.

Sandy Too,
I did not get the fatigue like you either during the Rituxan or after. I would defonitely talk to your doctor. Congratulations on your counts! Mine are in the low 200s and never went as high as yours.

Sandy - I suggest looking for other causes too. Although everyone reacts differently to Rituxan, I have not seen many complaints about constant fatigue after its use. You do have other health problems going on, so I'd look further at those and possibly some others (thyroid, Lupus flare, vitamin deficiency, etc). I also have that sort of fatigue, it's been chronic and on-going for years. I really have to limit what I can do in a day. I seem to do better in the summer for some reason, but most of the time, I'm exhausted when I wake up.

I was only tired the day of treatment with Rituxan. I think mine had more to do with the 6 hours in that chair.

Were you on prednisone for over 2 months? It can take a long time to recover from prednisone, it all depends on how long you were on it. But it will leave a person with fatigue- also joint pain, low mood, sleepy, low energy.

Also as others have said, look at thyroid. I had low thyroid years ago and was so fatigued, hard to move/walk, cold body temp, and hair loss.

Thanks for your replies. It has been a while and still the fatigue is bad.
I saw my hemo finally this past Friday. I explained the profound fatigue and muscle and joint pain.
She feels that it is from the long term high dose prednisone. That the high dose prednisone for what has been a year, can cause muscle wasting and atrophy. I did not know about this side effect. Nor did I know about drug induced myopathy, which is an inflammatory muscle condition that I sure could do without.
Then of coarse there is neuropathy which I have been dealing with mildly to moderately for some time.
So when I see my rheumatologist again, the question will be is this new severity of symptoms atrophy, and/or neuropathy, or is this inflammatory myopathy?
I have been working again on moving which is a work out, so muscle pain especially if my muscles have
atrophied would make sense....that's the one I am hoping for.
But at least now I know why.
But my ITP is a memory now, platelets still up there at 449. She feels that based on what she has seen with my response this could be a long remission from 2 years to maybe forever.....but warns me that the only thing predictable about ITP
is that it is unpredictable. Blood work every two months or unless I have symptoms. Here's hoping.
Thanks, Sandy Too

Yes, Prednisone can do that. The best thing to do (and the hardest), is to stay active. When did you stop taking Prednisone for ITP?

Hi, I had been down to taking just 20 mg since Christmas and right through the Rituxan in January and February, then by the end of February and three high platelet results took myself down to my regular dose of 7.5 mg by mid March.
I have been carrying right on since talking with my hemo as I felt it safe to do so. But I have been determined to get this move going and did too much all day Monday and today I was just good for nothing. So as much as I would like to ignore my reality, in the long run it doesn't work. So it's hurry up and wait! I think it's just going to have to take time but I will get there. Plus my hemo said it is also easier to injur yourself when your muscles are weaker, that would not be good either. Thanks, Sandy Too

Sandy
I have tapered steroids 3 times in last 3 years. It is an exhausting process as far as I am concerned. I find I have to pace myself and am not very good at doing so. Last week I spent a whole day tackling jobs in the garden in stints of half an hour working 10 minutes sitting down. I was shattered the next day and spent most of it on the sofa watching TV.

I bit the bullet and tapered 80mg in a month.

The final week's taper was the worse but after three months without prednisone it has been heavenly.

I will gladle undergo splenectomy that take that horrible drug again

Unfortunately, having a splenectomy may not guarantee a Prednisone free life. As soon as I went into ITP remission, I had to start taking Prednisone for Lupus. I've been on it for 12 years and have had steroid IV's. You never know what life might bring and if splenectomy fails, Prednisone is back in the line up.

jayinchicago wrote: I bit the bullet and tapered 80mg in a month.

The final week's taper was the worse but after three months without prednisone it has been heavenly.

I will gladle undergo splenectomy that take that horrible drug again

Hahaha, never say never Jay! I had a splenectomy as a child and it guaranteed me nothing. I was on prednisone periodically throughout a lot of my life after my splenectomy. As an adult, I will say the side effects are worse for me (and my response isn't what it used to be), so I told my doctor no more.

Best wishes for a prednisone-free stretch. Many of us feel your pain