Diagnosed 5 mo.....Still get tired easy

Hey everyone!
I've been secretly scanning the forums since being diagnosed. I haven't commented until now because i was going through the whole prednisone process. A journey that I wasn't very fond of at all. But I did make it working through it the whole time. A month (or so) after i was weened off the prednisone, I asked the Hematologist what was up with my energy levels. I was at an outstanding 181!! Even tho I was at the awesome level, I still had very little energy reserves. The doc said that there was a good chance that I was weened off too fast and my adrenal gland hasn't kicked in. Well, that was 6 weeks ago and I still struggle. I did try going for a bike ride (first one this year), biked 6 miles averaging 10mph. Nice and slow. I was exhausted for 3 days after that!

Has anyone gone through this before? Is this normal? Any suggestions on how to get through this? It's frustrating because I can waddle (one of my dogs is really old..that's her pace) for a half mile, but if i do more, I'll pay for it the next day. I do take Vitamin B12 every day and if i were to sweat, I drink a gatorade. I do realize that I"m still fresh to the process and my body is still trying to figure things out.

Below are the numbers:
3/3/2010 56
3/15/2010 55
3/26/2010 27
4/7/2010 132
4/13/2010 155
4/28/2010 155
5/12/2010 159
5/17/2010 174
6/2/2010 181
6/18/2010 169
7/14/2010 129
7/21/2010 136
7/28/2010 130

I do have 2 more weeks of weekly blood draws, then off for a month...assuming i don't take a dive. In which i'm a bit worried cuz i've been mega tired and broke out in a rash last night. Started with the legs and have some on the arms. Not sure if it's related to ITP or if it's heat rash yet. The numbers will tell.

Thanks in advance for all your encouragement and advice.

HI...
I have had ITP for close to 3 years. My levels have been mostly between 55,000 - 73,000. I have a long story...and had no meds issued until Jan/ Feb. That was the Prednisone. I had a bad reaction to the pred. and my levels dropped to 13,000. After reading much on this web site we chose not to do the imj treatments nor surgery but to try to get off the pred. (we did it in less then 4 weeks) and have totally changed my diet to whole foods and all natural. i TOTALLY understand your fatigue. It took me months to feel better and I am still not back to normal. I wondered too if the pred. "broke" my adrenalin gland. I read how important sleep is to heal an audioimmune desease so I made effort to nap lots..and was in bed early for weeks. I gradually felt much better but my last counts were at 53,000. I wonder if they will ever go up again..but I am grateful for the desease that caused me to read up on eating/health. I now feel I feed my family so much better and we are all benefiting from the huge changes. Good luck..Hang in there...sleep alot..you will feel better.

Hi Fish:

Well, it can take months until you feel normal after Prednisone. It does take time for the adrenals to kick in.

A few other thoughts - Prednisone can cause potassium levels to drop which could be a reason for feeling tired. Also, a lot of us have found that we have low B-12 or other Vitamin levels that can contribute to fatigue. The reason could be several different things.