how do you feel?

After several months of different treatments, I am now on Eltrombopag and trying to sort out the dose. 50mg sent my count way too high (500+) and 25mg brought it down to 90 while still taking 5mg steroids. Then I came off the steroids and it dropped further to 41, so I am now on 25/50 alternating to see how that goes. 41 is considered safe but because it was dropping my haematologist wants to try this alternating dose.

Anyway, that's all background to how I ended up here. My problem now is that I feel AWfUL. I am constantly weary. I ache all over,especially my joints. I have no energy. I am weak, I can't lift things (like even a big glass of water is an effort to drink). Walking any distance feels like my legs are made of lead. My brain feels all fuzzy and I can't think clearly.

I don't know how much is Eltrombopag side effects, how much is residual steroid side effects, how much is.....I don't know? My haematologist wants me to go for walks in nature. I've tried explaining that if I am depressed it is because I can't do the things I would normally enjoy? He said I might have another auto immune disease and it could be polymyalgia, and I could go back on 1mg steroids. I'd rather not do that straightaway, and also I find it weird that this is all coincidental with my ITP treatment.

So...how do you feel? Is this fatigue normal with ITP and Eltrombopag? I've been off steroids for 3-4 weeks....how long might their effects last? Basically I just want to feel like I used to before all of this happened

It sounds like typical steroid withdrawal. How long were you on them? It can take months to get back to normal. Coming off of steroids too fast can cause withdrawal to be even worse.

In the meantime, exercise is the best strategy, even if it is only short walks. Steroids cause muscles to atrophy and toning them back up is the best way to fight that. I know it's hard, I've been there. You feel like you surely must be dying because the weakness and fatigue are so bad. I remember even thinking it was an effort to lay down in bed and could barely sit up in my chair at work all day. The trick is to convince yourself that you're not harming yourself by pushing for that walk. It will make you stronger in the long run.

Another suggestion: Have your vitamin and mineral levels checked. Many people with ITP often have low levels, especially after steroids. Prednisone can deplete potassium and other things.

Yes! I absolutely feel like I'm dying. I feel like I did when I had cancer and was in the middle of chemo. I am THAT tired. But just knowing it might have a cause makes me feel a bit more optimistic. I've been on the steroids since January, and I tapered down to 5mg then stopped...i did check multiple times with the haematologist and he said this was a slow enough taper.
I shall try and keep moving...ive had a migraine today so I've done nothing

OMGosh....yes, it's the steroids. That taper was too fast at the end for the long time period that you were on them. Steroid tapers should go slowly after you get down to about 7.5 mg's. It's best to go down by 1 mg every two weeks or so. Most doctors use the 5 mg stop, mine did too. They just don't get it. The body produces about 7.5 mg's of cortisol per day. When a person is on steroids, the adrenal glands stop producing it. You have to go slow to allow the adrenals time to start working again and that requires a slow taper.

Just keep reminding yourself that it is the steroids, or lack thereof. There is a light at the end of the tunnel.

Oh Sandi, thank you. I have been so upset that I was going to feel like this forever! And i am so cross with my Dr...i asked him about the tapering so many times but I didn't have the numbers to back it up so I had to follow his advice. Do you think it will wear off in time? Or should I go back on a 1mg dose...that feels counter-intuitive.
Ohhhhh to feel like myself again. I have hope. Thank You!

Your symptoms sound exactly what I have experienced when tapering prednisone- its called adrenal insufficiency. You should not have to suffer like that. I totally disagree with your doctor about stopping at 5mg. I have tapered prednisone many times and that is WAY too fast! Under 5mg is when you want to go slowly to give your adrenals time to start working fully on their own. Rather than stopping abruptly at 5mg, I would have tapered by 1mg per week or every 5 days. You just then want to watch how you feel- adjust the tapering dose accordingly. From your symptoms, its very obvious to me that you quit pred too abruptly. There are good links to information about prednisone tapering, withdrawal symptoms, and adrenal insufficiency that have been posted in different places on the forum.

Also just my experience, not to contradict anyone, but I could not exercise when I was having low adrenals from tapering prednisone. I could barely walk from my car to my front door. Emotional and physical stress just made things worse. When I tried to exercise at the gym I would get so weak, my legs would tremble, I even felt faint. "SLEEP sleep sleep is the only way to heal the adrenals"- that was told to me by an endocrinologist. I took naps and slept 8+ hrs at night. I was depressed the first month after ending prednisone- I felt a sense of failure but it was not the truth. And that feeling lifted after one month.

About Eltrombopag, I can't be certain, but I would suspect all your symptoms are from tapering prednisone too fast and not side effects of Eltrombopag. Since your doctor suggested going back on prednisone, you might try it? And then taper more slowly. Just my 2 cents, good luck on whatever you decide!

Ha Posey, I didn't say to go to the gym and work out :laugh: . I said take short walks. I don't think we are disagreeing, just not clear on specifics. Sleep is great, but you do have to keep your body moving some to keep blood flowing and slow muscle atrophy. Plus, when using the TPO's you have to be careful of the blood clot risk. It's a slow progression to get back to normal. Those jello legs are horrible!

Kate, it's hard to say whether or not you should start back with a few mg's of Prednisone. If you had just stopped it, I'd say it would be a good idea, but you're already a month into this. At some point soon, it's going to start getting a bit better every day. You have to do what you are comfortable with though. It's torture at this point. I went through the depression too which is another lovely withdrawal side effect. That goes away in time too.

Kate.
This, without a shadow of a doubt, is steroid withdrawal symptoms, I went through exactly the same when my haematologist chopped my dose too quickly. My GP went ballistic when I turned up at the surgery an absolute wreck. She pointed out to me that NICE guidelines are quite specific regarding steroid reduction and designed a gentle taper schedule for me cks.nice.org.uk/corticosteroids-oral . There is also an excellent article by Rob pdsa.org/discussion-group/7-treatment-general/29130-steroid-tapering-secondary-adrenal-insufficiency.html#54152

No wonder you feel so ill. I strongly suggest you see your GP. I am coping with a gentle taper without anything other than slight tiredness.
I'm on Eltrombopag after failing several treatments pdsa.org/discussion-group/7-treatment-general/29570-started-promacta-february-2017.html?limitstart=0 . I have to say that slowly adjusting the dose down has not had a noticeable affect on my platelet count.

I also take a vitamin D supplement every day as there is a lot of info out there to suggest low levels are common with autoimmune diseases.
Anne

Anne, that is interesting that your taking vitamin D. Makes me wonder if those (steroid responders) that have huge wildly fluctuating counts could be more stable by simply adding a bit of daily vitamin D.

Everyone should have their D levels tested. Mine is constantly low unless I take high doses. The recommended dose is 400 IU's daily. I need about 50,000 to 100,000 IU's weekly to keep my levels in a normal range. I've been doing that for years. Many people have low D levels these days due to sunscreen use and being indoors.