Prednisone

[Jack]

Yes, all sounds very familiar and it was only when I had an MRI scan that they confirmed that the problem was caused by a build up of fluid in the ear. I have decided to give grommets a try to relieve the pressure, but if that fails I'll get a hearing aid.
I'm waiting for the date of my operation, but it is considered to be low priority.

[fester500]

Thanks for the reply! Do you also have nasal symptoms on that side? Or are both your ears affected?

My ENT doctor said that he doesn't like using grommets on WG patients as they end up with 'constant drainage'. I guess it depends on their different experiences.

I think I'll have to try and get an MRI on a day when the symptoms are worse.

[Jack]

My first visit to ENT over this problem ended as yours did with nothing much found. I had the MRI scan as part of another investigation and this showed up the problem. Also, it has now escalated and is apparent on hearing tests.
I have had a huge amount of trouble with nose, sinus and throat problems in the past, all associated with Wegener's so the ear trouble is not unexpected. Previously, my right sinus was slightly the worst and the left side of my throat.

I'm not expecting great results from the grommets, but they are easily reversible so it has got to be worth a try.

[jola57]

Jack, my hearing test last year and followup this year showed that I have 35% hearing in my left ear and 75% in my right. I honestly can live quite well with this, and my job is 90% listening to people on the phone and at meetings. Gromets are fine but with the drainage and most importantly, having to be very careful of water getting in, I totaly decided against them.

[MCC]

Can I ask how soon you all noticed symptoms such as weight gain and moon face on prednisone?
I've been on 50mg for a week and so far nothing major.

And regarding the weight gain, from what I read I was under the impression it was because of the increased appetite. Are some of you saying prednisone has made you gain weight without eating more?

[Cindy M]

I think it took about a month before I notice weigth gain, but I can't quite remember. I do know that my appetite increased. I was overweight and struggling with weight when this disease struck. I do tend to eat out of stress, depression, etc. I believe that alot of my weight gain is because of not trying to control it, feeling sorry for myself and allowing that to be the permission to over eat. Wish I could do it all over again and be a little smarter. It's so much easier putting the weight on as opposed to taking it off. The moon face took a bit longer. I thought at first that maybe I might be lucky and not get the moon face, but unfortunately it does come. There is some weight increase just because of the predisone, making you retain more.

[capabayan]

Yeah the weight gain and moon face are not immediate but they are imminent. Not only does prednisone cause the aformentioned increased appetite, it also causes water/fluid retention.
It also doesn't help that, if you're on pred for a while, you probably have some health issues that prevent you from exercising regularly (no energy, etc).

Unfortunately, the weight gain is inevitable. But if you can try to exercise regularly - even just walking for 10 minutes a day at the beginning - it will be a big help in staving off some of that extra gain.

[jola57]

Hi Mandy, I guess it took about 2 to 3 months for me, but I was regular weight at the time and took only 25mg. Now I am 210lb and can't shake it. This is, for me, one of the worst symptoms but you have to get used to it. It took me 3 years to accept it and not be embarassed. I used to shun my friends because of the moon face and weight but this christmas I made an effort and invited some friends for supper. So I'm out of the closet so to speak. My face has a tendency to round anyway so the moonface and prednisone roll (on back of neck) is horrible. You can see the before and after in my profile. Don't be dishartened better be pain free than pretty.

[elephant]

I have been on Prednisone on/off my whole life ( 30 years). In the last 18 months I have been on Prednisone 60 mg ( flare's and such), I noticed that after a month my face got rounder. The weight gain is different for everyone. I gained 10 pounds, but I did walk , even walked in my house ( going to the dining room to the family room to the kitchen) and then started slowly on the treadmill. I did eat like a horse. I seem to have a big appetite and didn't gain much weight. I met a couple of people who said they lost weight on Prednisone! Wow!

[onatreetop]

I have been taking it for 7 monthes and have gained 25 pounds to date. I have noticed that if I exercise 20-30 minutes a day I dont gain. If I miss I gain. The food craving is bad but I am a stress and evening eater to so none of that helps me. I have also noticed that this moon face goes up and down with the right amount of water intake 3 -4 qts water and the exercise. If Idont workup a really good sweat once a day the face is so moon like it is pain. So sweat I do and it helps release more of the leftover toxin I beleive. Pred does stink. It is like a train to fast then to slow and bump along the way. But if it is going to save my life I am on for the ride!
I was checking the most common side effects out a while ago and they were the neck/ throat / top of shoulders, behind the neck like a hump, face and abs. I have this lump where my collar bones met under the front of my neck that I never had even when prego with the twins and heavier!! They called them fat pads! Lovely pred !!! Like I need more padding!!! I might look like a couch in five years if i am not careful.