No Energy

I was diagnosed with ITP in April 2014...after bone marrow biopsy and aspiration. My doctor put me on 100 mg. of prednisone and I'm currently down to 8mg. My platelets were at 14,000 and went up as high as 172,000 while on high doses of prednisone. For the last 3 weeks that I have been on 8mg. my platelets have dropped. I'm now at 125,000 (still a good number I guess). Before I was diagnosed and since the prednisone was dropped to 40mg I'm so exhausted....no energy at all....everything I do drains me. I'm grateful not to have leukemia but I'm so tired and getting depressed because of all the blood work (done every Tuesday) for the past 6 months....anyone have any suggestions on how to regain some energy? I mention to my doctor every time I go about my fatigue but she never has anything to say. Thanks

Oddly, the best thing you can do is stay active. Prednisone tapers will make fatigue worse and can cause muscle atrophy. It's hard to come back from that weakness, so the best thing to do is stay active and avoid muscle wasting. Taking walks, even short ones, will help to build duration.

Hi cmacera,

I've done the 100mg predni and back tour twice and can only support Sandis advice.
Stay active. I've been taking 30 min walks in the morning, over lunch and in the evening whenever possible. The second time I got the advice from a "non-hemo" doc to change my diet towards proteins. So I replaced my normal breakfast with a protein shake. That helped me too.

Besides the effects from reducing the predni you need to accept that your immune system is doing some extra work, which costs you energy. My doc once asked me if I knew somebody who had hay fever. My wife has that and during her hay fever season she not only has a runny nose and watery eyes, but she is also always exhausted. This is because the body fights. When having hay fever it fights pollen and in our case it fights against the pallets. Both fights are wrong and in vain, but they cost the body a lot of energy.
So my second advice would be to try get some rest. I know that contradicts my first advice, but you need to find a balance between the too and give some space for both.

Thirdly as bad as it may sound: your body will adjust to your relative new situation and I'm sure your energy levels will go up some just from your body getting used to the disease.

Cheers,
Joerg

Getting off pred is very tough. Hang in there, you I'll gain some energy back. I remember barely being able to keep my eyes open when driving.

Yes, fatigue is part of itp. Unfortunately some docs are still unaware of that. That's been the most challenging part of this disorder for me since I have had no bleeding incidents.

I agree staying active does help. Even short walks. I've noticed tha after 5-10 minutes on the treadmill I feel I can keep going. Short afternoon naps also seem to help me. When I lived in Ohio, we had a sunlamp that I sat by and that seemed to help a bit too.

I often feel too tired to get up and move, but am always surprised at how much better I feel if I force myself outside for a walk. Dangle that carrot in front of my nose to keep myself up and going. I have yet to feel worse after a walk, btw.

My husband is tapering from steroids, currently on 12 mg. (he started on 120 something two months ago)
He is doing moderate jogging 3-5 times/week for 30 min and (for now) feels really good.
So, definitely think that “stay active” is pretty good advice.

Cant stress how important it is to stay as active as you can during the taper.

I have had knee issues for the last 20 years as well back problem for the last couple of years (both managed with exercise) and I have recently done a stint on preds.

Whilst the preds help tremendously with the pain the downside is it has seriously set me back in regards to my both my knee and back.

I am now back doing intensive physiotherapy for both.

Damn those preds !!!!