I’m coming off prednisone and I have literally NO appetite… I’ve already lost half a stone in less than a week because of not being able to bring myself to eat more than a few bites at a time I’m too skinny as it is!! What do I do?? I’ve also got incredible joint pain 
it feels like someone’s pushing hot needles into my joints…
Cayleigh,
I am sorry that you are still having such a difficult time. I have been thinking of you lately and hoping that you were feeling a bit more "up" and I do know that it will get there, but alas, we can't speed up time.
As to the not eating, this is common. If you are suffering from nausea, there are meds that help with this. I would definitely suggest trying a protein shake or drink with vitamins as your body still needs to get it's nutrients. I tell my husband that I am "cheap to keep" cuz I eat so little anymore. You need to get your nutrients and because I hate taking vitamins my husband bought me chewies. I love them.
You need to get your nutrients, which should help with your joint pain. Your body is starving and your joints may not be the problem but actually your connective tissue.
Please talk to your doctor about your appetite. It's important to get all of the nutrients you can...this will ultimately help you feel better overall.
Big hugs,
DeAnne
Hi Caleigh. Sorry that you don’t have appetite. Go see your doctor about it. For joint pains, try turmeric tea. I put a post about that on my page. You might want to check that out. It’s natural so you don’t need to worry about side effects. I also take seretia supplement and omega 3 fish oil for inflamtion. Check with your doctor if it’s okay for you to take these supplements to help you with your joint pains.
Hugs!
Hi Caleigh
In the last two months I have lost 30 lbs. My body was rejecting food. I am on prednosone now and am eating again. While I could not eat I drank fruit and vegetable smoothies. This helped alot. I hope you feel better very soon.
Protein shake is a good suggestion. Just make sure you check the ingredients… you don’t want to add artificial sweeteners to your issues.
Zofran is my med of choice for nausea, if that’s part of the problem. It’s a mild med and well tolerated by most people. I can’t take Phenergan - allergic. For some people it crashes their blood pressure, and for me it does that big time.
Re coming off the Prednisone… you’re dealing with a lot of distressing reaction. I have to ask a couple of things. First, did you taper off of it and slowly? I mean like 1mg a week slow, maybe even two weeks. A radical increase in joint pain and serious loss of appetite sounds like you either came down too fast, or you are below what your body still needs. I know people that have stayed on very low dose because every time they try to stop totally, they flare. Either way, you should be talking to your Dr about what this is doing to you. Don’t torture yourself.
I came off from 10mg to 7.5mg about 5 days ago and I’m going down to 5mg after 2 weeks of being on 7.5m… I’m going to ring my doctor tomorrow I think it’s too fast for me I need to eat but can’t physically bring myself to sometimes I can only handle a few bites even if I am hungry… I hate this because I can’t afford to lose weight!!
Yes, that’s way too fast. That would make most of us flare. Too much of a drop, too few days.
It partly depends on how long u have been at the dose too… If it’s been a long time, some people find they can’t drop more than 1mg every three weeks or so. Sometimes you have to back up for a bit if don’t do well. It’s very individual.
Maybe you should try small amounts of food instead of eating a whole meal every 4 hrs.
The joint pain could be from coming off Prednisone. High protein shakes could help too. I've heard you can have loss of appetite with Lupus flares. I gained 100 lbs on steroids. It's good to know coming off Prednisone might make me less hungry. Prednisone should be weaned slowly to prevent a flare. You should ck with your Rheumatologist if this continues. Hope you feel better soon.
I just looked at my prescription and I am on that same step down. Although, I could stand to lose a few pounds, I also am experiencing the loss of appetite. I stocked up on ProMax and KIND bars. Gluten-free, natural and eat what and when I can. I have found keeping small snacks are easier for me than a full meal. I am at 15mg now down to 12.5 tomorrow and then 10 in 2 weeks. The goal is to get down to 5mg. The reason is that the long-term affects of the Prednisone can be very bad. So as your Cell-Cept starts to take hold, although it takes time, you should be lowering the prednisone.
But, again, I have found that small easy to eat snack (perhaps higher in calories than you usually eat) it what I eat along with Ensure and protein shakes.
Do hope you feel better soon. I Zofran for nausea and that helps.
cayleigh said:
I came off from 10mg to 7.5mg about 5 days ago and I'm going down to 5mg after 2 weeks of being on 7.5m... I'm going to ring my doctor tomorrow I think it's too fast for me :( :( I need to eat but can't physically bring myself to sometimes I can only handle a few bites even if I am hungry... I hate this because I can't afford to lose weight!!