Fatigue

Hi I couldnt find the thread that I had read about Fatigue on here so i just started a new one. I remember reading that a lot of us have fatigue as a symptom but doctors will not confirm this as a symptom. Anyway the reason I am posting is because I am so overcome with fatigue today that I can hardley keep my eyes open right now. My last count was great on January 18th 354,000. I am currently on 100mg of Prednisone daily. No current bleeding or bruising, just the fatigue. I have the "MOON FACE" so bad that I can hardley see out of my eyes. I am really weak and can only walk about 15 steps before I need tosit down. My legs and arms are extreamly achy. Also I have these tiny white bumps on my tounge that are painful. Im wondering if these are just effects from the Prednisone or if maybe my count has dropped. I had my blood drawn yesterday but I did not recieve a call from the doctor not sure what happened there. Is there need to be concerned as it is a Saturday night? I did call the doctors office this morning to find out about my count but they dont have office hours on Saturday so I got nothing!!! What do you all think?

Well, have you tapered Prednisone at all yet? Tapering can cause weakness and fatigue. Most people get lots of energy while on Prednisone, but I felt more tired than anything. Aches are also part of tapering.

The white bumps could be thrush. I have had it due to Prednisone. There are scripts for that - you'd need to see your doctor.

I'd guess you are either feeling effects of Prednisone or maybe getting sick.

I have been tapering the Prednisone now for two weeks, I started at 140 and went down to 120 and now this week im at 100. I was thinking that the tounge problem was thrush. i sent an email to my doctor so hopefully I will hear something but probably not til Monday morning!

I'd bet anything you are feeling the taper. I had jello legs every time I went down in dose, lots of weakness and fatigue. That's fairly common. I remember days when it took everything I had to sit up at my desk at work. I also had a lot of shortness of breath when walking.

As for the thrush, I actually have it now. I have the swish and swallow and the Trouche. Wish I could send you some!

I wont tell you about the time then the minute I was out of hospital I was involved in leafleting for the local elections I think of that time and read what people say here and almost feel a fraud accept I do know we all respond different, every time. This time I have had reactions is what am putting it down to, tapering the steroids and am sure the one tuesday two weeks ago the platelets went right down but picked up again. feeling sick has been the worst symptom though but was saved a little bit over the new year break as was sharing hotel room and last thing one wants is feeling sick with another person in the room so told that to go away.... it did till got home. But now am right down to 15mg that has gone away.

I went slightly dizzy yesterday. I have had vertigo in the past so know the difference. I have never felt dizzy before so was wondering could it be a genuine taper now it getting right down to the minimum. Didn't last long...thankfully as it was my reading in church today and only just stopped being anxious about it (only started doing the readings year and half ago)

Anyways like Sandi says they are probably the tapering effects for you are on quite a high dose. I was told 60mg was a high dose so 170 be very high unless the english/us systems differ in that too?

Im going to chalk it up as an effect of tapering then and not worry too much. Im assuming that Im on a high dose because Im a large person, 315 pounds. The lowest dose of Prednison I got down to was 60mg and I was dropping the dose about every third day then so maybe thats why I didn tfeel it the first time. Dont know!!! Feeling just as tired today but since its sunday im taking advantage of sitting around doing nothing!! Hope you all are well!! Look forward to hearing from the doctor tomorrow.

I went to the Hematologist today my count that was taken on Friday was down to 97,000 so she is not lowering my Prednisone this week, so Im staying at 100mg daily. She thinks that the weekness in my legs and arms is myositis. They took blood to run all kinds of new tests! She is maybe going to switch me to a different drug, i forgot what it was called, dextro something I think. She is having me meet with the surgen to discuss removing the spleen. She wants to maybe try Rituxan. Im not sure what I want! Which is worse surgery or the Rituxan? Lots of info today and Im too tired to focus on any of it!!

If your platelets are 97K, there is no reason to hurry into anything. Even if your platelets were very low, it would be a good idea to get more information before you make any big decisions. This site has lots of info--on many treatments, including rituxan and splenectomy. (I've had both, and neither worked for me--but rituxan caused me no ill side effects. Although I've not noticed any bad side effects from not having a spleen, I may someday be sorry I don't have that organ. I have been sorry I didn't try WinRho before my splenectomy--it is usually not considered for spleenless patients.)

Although it is tempting to blame prednisone or ITP for fatigue, and although there may be a link for some people, it is always possible something else is going on with our complicated bodies. (I remember when I was young, and I only had one thing wrong at a time!)

Julie:

At the risk of stirring the pot, I'd urge you to take control of your treatment. I know this is new to you and you are confused, but it's up to you to decide when to meet with a surgeon. No hurry there.

She was probably talking about Decadron (Dexamethasone) - another steroid.

Wonder why she'd suspect myositis?

Sandi - I bet the doctor said myositis because like many they are in denial about the muscle pain that prednisone can cause. Mine certainly didn't believe it!
Of course it's important to rule it out. I was sure I had myositis for a while. Then poof, I was better (well after 4 months of no pred).
Erica

I've also been tested for it a few times since I have a lot of muscle weakness and have for years. I keep chalking it up to low Vitamin D and myalgia. Back when I was on Prednisone and didn't have this problem, I know it was definitely that because it did get better when I was off of the steroids.

Good luck, Julie. I hope your tests come out okay!

Thanks for all the tips! Im very worried about how I have been feeling. I am so tired and I cant focus at all!!! It makes it so hard to get informed or to even try and make any kind of decision because I am so foggy. I try to bring my mom with me to all my doctors appointments so that she can pay attention to what they are telling me, but she can be a little spacy at times too!!! Mostly Im worried that no matter what I do im going to be sick. I currently am not functioning like a normal person. I cant do anything without being completely overcome with fatigue. I was saying last night that I hope to put off surgery untill summer because then my daughter will need less taking care of. My life is pretty stressful as I am a single mom and I live with my parents. However my mom doesnt really help me that much with her. My daughter has a learning dissability which requires a lot of attention and help with school work. So I am hoping to maybe try the Rituxan (not sure im spelling that right) now and put off surgery till summer if its still needed! Im wondering if thats the first stuff to try or if i should suggest some of the other treatments Ive seen on here. Which ones work the best? I know everyones different so you never know which one will work for who!!! I follow up with the Dr on Monday, Im hoping to get some sleep this weekend!!!!

Hi Julie, It sounds like you are feeling pretty low at the moment. Have you got some other friends that you can talk to and maybe get some help from, or perhaps talk to your doctor about needing some counseling or other services. This forum is a good place to vent and get advice but when it comes actual hands on stuff we're pretty limited.
I know how hard it can be to be positive when you are feeling low but our hearts and minds are our most powerful organs/tools and they respond well to positivity.
Sending thoughts and prayers your way and wishing you good fortune.
Sally

Hi Julie, I have just come off the pred. I found the side effects were awful, I constantly felt tired and also as you put it spacey. ITs a horrible feeling. I also started to feel really depressed on it, I was a bit manic at times. just try to rememebr that it can have psychological effects, once I realized that I was feeling really down I was able to put it down to the pred cause it was completely out of character for me. It made it easier for me to cope with feeling so low. I also got bad muscle pain n some weakness that caused my arms n legs to shake.

I know not everyone is the same but I do think that pred can cause some pretty bad side effects.

Deal with things as they arise and try not think too far ahead you never know what will happen.

Is the Uk different? My doctor is happy as long as my platelets are above 10 so I imagine that you have plenty of time to make decisions that you are comfortable with and are fully imformed.

Take care.