allieinwonder
Moderator
- Joined
- Oct 22, 2010
- Messages
- 983
Hey Everyone!
I haven't posted a thread in quite a while, so before I ask my question, let me catch you up.
I have finally been given a label for my condition. After my ANA came back positive, and I responded well to a prednisone trial, I have been diagnosed with "Mixed Connective Tissue Disease". Its a rare AI illness that is a combination of several AI illnesses, one of them being Lupus. I have arthritis in my wrists, elbows, knees, and ankles, and the connective tissue surrounding parts of my small intestine is very inflamed. I just got back to Germany a couple weeks ago, so I'm in between doctors. My rheumy in the states put me on a one month taper of pred, and gave me a letter for my new doctors here on what he wants me on, which includes plaquenil. My doctors appointment in on Wednesday, thank goodness!
I am now on 2.5mg of Pred, and I will be off of it on Friday. Everytime I get put on pred, I feel awesome! I feel like myself again. But when I get back off of it, I'm worse than I was when they put me on it. The tapers have been a low dose, and a very short amount of time on it (10mg for a week) so I know it wasn't enough to kick this thing into remission.
The worst thing I am dealing with right now is weight loss. I am in one of my worse flares yet, and eating is hard because my pain causes nausea. Over the holidays I lost 7 pounds, the next week 3, then this past week I have lost another 1.3. Right now I'm at 112, the lowest I've been. I'm glad I am starting to lose less, but I am working really hard to try and gain weight, not lose it. I eat three meals a day, and they are all high calorie meals. Hubby bought food that are high calories in little amounts of food so that I could finish it before I started feeling really sick.
At this point I'm wondering if because the connective tissue is very inflamed, that I'm not absorbing all that I'm eating. They have already determined I don't absorb B12 properly in my small intestine.
How can I try and gain weight? I have tried ensure in the past, and it helped, but not much. With being so nauseated all the time I don't know if I could get those down. Does anyone else use any techniques to stop weight loss?
I hope everyone is doing well!
I haven't posted a thread in quite a while, so before I ask my question, let me catch you up.
I have finally been given a label for my condition. After my ANA came back positive, and I responded well to a prednisone trial, I have been diagnosed with "Mixed Connective Tissue Disease". Its a rare AI illness that is a combination of several AI illnesses, one of them being Lupus. I have arthritis in my wrists, elbows, knees, and ankles, and the connective tissue surrounding parts of my small intestine is very inflamed. I just got back to Germany a couple weeks ago, so I'm in between doctors. My rheumy in the states put me on a one month taper of pred, and gave me a letter for my new doctors here on what he wants me on, which includes plaquenil. My doctors appointment in on Wednesday, thank goodness!I am now on 2.5mg of Pred, and I will be off of it on Friday. Everytime I get put on pred, I feel awesome! I feel like myself again. But when I get back off of it, I'm worse than I was when they put me on it. The tapers have been a low dose, and a very short amount of time on it (10mg for a week) so I know it wasn't enough to kick this thing into remission.
The worst thing I am dealing with right now is weight loss. I am in one of my worse flares yet, and eating is hard because my pain causes nausea. Over the holidays I lost 7 pounds, the next week 3, then this past week I have lost another 1.3. Right now I'm at 112, the lowest I've been. I'm glad I am starting to lose less, but I am working really hard to try and gain weight, not lose it. I eat three meals a day, and they are all high calorie meals. Hubby bought food that are high calories in little amounts of food so that I could finish it before I started feeling really sick.
At this point I'm wondering if because the connective tissue is very inflamed, that I'm not absorbing all that I'm eating. They have already determined I don't absorb B12 properly in my small intestine.
How can I try and gain weight? I have tried ensure in the past, and it helped, but not much. With being so nauseated all the time I don't know if I could get those down. Does anyone else use any techniques to stop weight loss?
I hope everyone is doing well!
