When does facial bloating/swelling go away?
Posted , 16 users are following.
Wondering how long it will take for my face to look somewhat normal again as I'm being weaned off prednisone. Do you have to be off steroids completely for the swelling to go away or will swelling go away if you're on very low dosage? How long does it take once you're off the steroids for the swelling to start to decrease? I lost my job in Feb and need to start thinking about interviewing and trying to get a new job. Can't imagine going on an interview looking like a freak with my face really swollen.
Also wondering if anyone has any advice for the upset stomach caused by prednisone? I take Prilosec and directed but it's not helping with the stomach upset. Do you have any advice?
About me: I'm 53, live in VA, diagnosed in Dec 2016 after going to ER becasue I was coughing up blood. Just completed four rituxen infusions last month. Going thru the prednisone step down now and am currently taking 30 milligrams/day. Experiencing "withdrawl" symptoms of extreme fatigue, muscle weakness, light headed/dizzy.
1 like, 25 replies
ncdesigner eileen49269
Posted
Hi,
I'm down to 5mg from 80mg. Diagnosed in August 2016. Been on 5mg for 3 weeks now. Started to see a reduction in my swollen face about 6 weeks ago. A person I haven't seen for months, told me they noticed a difference. Still feel a little "wonky" some days but not at all as bad as I did when I was on even 30mg.
I went to the ER in August from a sharp pain in my shoulder blades. Previous to that I had pneumonia in May (7th time) and coukdn't shake it, over it in July. Then I lost hearing in one ear, then sudden onset arthritis. Not cumulative, one day my wrist, the day my shoulder, etc., finally got out of bed and couldn't stand on one leg. My Boston-based Primary care doc put everything together and sent me to a rheumatologist. No active Vasulitis since October 10th. Just had cataracy surgery yesterday, prednisone was responsible for that.
Prednisone saed us but what crappy side effects!
eileen49269 ncdesigner
Posted
Thanks so much for your reply, ncdesigner. I hope I start to see less swelling as I drop down to lower dosages as well! Also looking forward to fewer days of not feeling very well.
I'm sorry to hear that the prednisone led to cataracts and hope the surgery went as smoothly as possible. The various doctors at the hospital told me not to bother going to the eye doctor but I went anyway and he wants me back in on a regular basis to monitor my eyes for issues including cataracts. After reading your post, I'm really glad I didn't listen to those doctors!
You're right about the prednisone -- saved my life but soooo looking forward to coming off of it if possible. Best of luck to you and hope you have no future issues!window.post_1489776166752_15 = function(win,msg){
win.postMessage(msg,"*"
;
}window.post_1489776176909_42 = function(win,msg){
win.postMessage(msg,"*"
;
}
sarah65055 ncdesigner
Posted
I have had catarect surgery in both eyes due to Prednisone treatments. I also have the traveling pain. I thought it was just me. I glad to know that I am not the only one with these symptons. I was dignosed in 2009, but I'm still have alot of problems. I hope you get better.
ginny11155 eileen49269
Posted
Hi Eileen - you should see the moon face swelling go down when you get down to around 10 mg of pred. I know how you feel. It will feel so nice to look in the mirror and recognize your own precious face. Maybe not a huge thing but with all we go through it's nice to celebrate small victories. Good luck and God Bless
eileen49269 ginny11155
Posted
Thanks a lot, Ginny! I'm really looking forward to looking a least a little more normal :-) I also feel like if I showed up at an interview looking like this, I'd be letting them know right off the bat that there is some kind of health issue going on.....
Good luck to you, too!
sarah65055 eileen49269
Posted
I was diagnosed in June, 2009 and started out on 80mg of prednisone and cytoxan. I don't remember when the swelling when down, but I know it was awful. It will go down as you lower the dose. I was 61 years old and was put on disibility because I was so sick. I have never got well enought to return to work. But, oh God, I wish I could. I live in South AL. I have the extreme fatigue and muscle weakness. But my sinuses are the worse thing I have. I have vertigo real bad and fall a lot. I have congestion in mine sinuses and ears. I have lost my hearing in my right ear. I hope you do well and can go back to work. Please keep posting. It helps me to talk to other people.
eileen49269 sarah65055
Posted
Hi Sarah, thanks for your reply! I'm really sorry to hear that you never felt well enough to return to work. That's how I feel right now with the muscle weakness and fatigue but I've got my fingers crossed that as my steroid dose is lowered, I'll do better. I just can't deal with the thought of not working again when I'm still in early 50s.
Are you still on steroids or other medicattion? I hate to hear that more than 7 years after diagnosis you're still dealing with fatigue and muscle weakness. And the sinus issues and vertigo sound terrible, especially with the frequent falls. I can completely understand why you could never return to work. Were the sinus issues present when you were diagnosed and never got better or did the issues start sometime after the diagnosis?
I'll post again as I make some progress and wish you all the best. Please be careful with the vertigo and take care.
Eileen
sarah65055 eileen49269
Posted
I had severe sinus infections is how I was diagnosed. I had a biopsy of my sinunes. I got better with my sinuses but always have congestion. I have a deform nasel condition, my nasel cavity has collapse to the right side. I knew that I had a different profile on each side but did not know it was caused by Wegener's until I was diagnosed. The right side of my nose is smaller and I have a lot of crusting in it. I rely on salt water rinses to help me with my congestion. I use a syringe to rinse my nose out. You may not have this condition and I hope you don't ever have it. The arthuritis, sore aching joints are another condition I have. I am not on predisone now because it causes me to be diabetic. I believe that my age, 69 on April 4, adds to my problems. I hope you do better and feel better.
SophiesMom eileen49269
Posted
Oh, do I know how you feel....I didn't recognize my reflection in the mirror for months. I started noticing improvement when I got down to under 10mg. It starts going down pretty fast at that point. Just don't be tempted to taper too fast, due to the side effects. I really, really hate the stuff...but supposedly, it saves us.
Coee eileen49269
Posted
Coee eileen49269
Posted
When I was on a high steroids I really swelled up. They tapered me down and the swallowen of the face went down.. I am still having to take steroids but it is a real low dose..it's temporary until they taper you down. Coe
michelle14331 eileen49269
Posted
eileen49269 michelle14331
Posted
I experienced what the other posters told me would likely happen. I started at 120 mg/day and once I was down to 10 mg/day about a year later, my face went back to normal and I dropped the weight I had gained while on the Prednisone pretty quickly.
bianca18652 eileen49269
Posted
How much did you gain while on the prednison and how much did you loss after going down to 10mg/day?
eileen49269 bianca18652
Posted
Hi Bianca
I gained about 40 lbs!!! When I was finally down to 10 mg, I lost around 1 lb a day and lost all 40 lbs of the Prednisone weight. The weight loss stopped at the weight I originally started at. Note that I had an unidentified thyroid problem at the time and even though I was keeping to 1200 calories a day, I was still gaining weight on the higher doses of Prednisone. Started 8 months ago with the lowest thyroid med dosage and blood tests and am now at 112 mcg and waiting to see if it's enough or I still need to increase the dosage. Once my thyroid medication is settled, I really hope I'm able to start dropping additional weight.