Has anyone else got a swollen face from the steroids? Also have you noticed the veins splitting in your cheeks?I have been told that the face will go back down however the veins will not mend, I was told I could go for laser treatment?
Hope everyone is feeling ok this evening, I've been shopping from 10am till 3:30 pm so wrecked now, feels like I did a full days work lol don't know where I get the energy!
Yes, the'moon face' is a well-known side-effect. And it does go down. Other weight gains tend to be more difficult to shift, though. Good luck with your treatment. Mood swings/energy swings are also common. All better than chronic Sarc IMHO!
Hell yes il take anything temporary as long as the sarcoid is gone.
Thank-you
Hello AmandaPC, yes you can get swollen face when on steroids. I am now in my 28th year with chronic sarcoidosis. When on a high dose the face gets puffy and can go like "moon shape". I have been through the veins as well but things settle down when steroids reduce. I commend your energy as I am still weak and tired all the time. Hope you find this useful.
Hi Margaret,
Thank-you yes it's helpful.
You have had it for 28 years??
I've been on steroids for 15 months nearly and I was made aware of the swelling early on however the split veins no so much. I really don't want to have to laser my face. Do you have split veins?
Do you mind me asking where your sarcoid is?
Hi Amanda, my sarcoidosis is in my lungs, I have veins due to the extra weight I carry because of the steroids etc. At the moment Iam not doing too good am on lots of medications and have floaters running around in my eyes. But I try to take each day as it comes.
I know about the weight gain alright but that's a long time sick. I hope your doing ok? Do you work.or anything?
Just retired early this year, over the years I have good and bad times as my sarcoidosis is chronic I am monitored closely by my consultant. I get times when breathing is bad, very swollen ankles etc. The hospital care is great I take azathioprine, Alendronic acid Bisoprolol (for my heart). As I am long term chronic I also have osteo arthritis in numerous joints.
Ah I'm sorry to hear this really I am. Makes me sad tbh that it can do this to ones body.
I also have chronic sarcoidosis I first got it 7 years ago only on my lungs, however now it's on my spleen so much so that it had double in size, also on my liver, my lungs and my leg. My doc told me in September last year that if I didn't take the steroids as a last resort I.would be dead in 5 years. I am going for an mri in March to make sure it's has not travelled to my brain, fingers cross.
I do work 20 hours a week and have a young daughter 15 months keeps me on my toes. 😁 just have to stay positive.
Hi again Amanda. I've had Sarc for over 30 years. Started as skin lesions, then lungs. Most of the time it stays quiet("in remission" as long as I use inhalers eat well, balance rest and exercise and avoid triggers like smoke and cold. BUT there are flares from time to time. Then, I think of the steroids as a godsend and tolerate the side-effects while I take them. And yes, the fear of spread - eyes, brain, kidneys is in the background. My lungs are a mass of scar tissue as seen on x-rays.
Hi,
Wow 30 years, it's a nightmare, mine has been active for the last 3 years now, my worry is my brain and especially my eyes because there is blindness in my family so I have to be careful.
I was told that it spread around me very quickly so fingers crossed it's only in the places where I was told.
Well, mine hasn't, I think largely because I have a good consultant who monitors the illness regularly. So please do get checked on a regular basis, and try to keep the stress down if you can. I find that meditation helps, and other ways of stress reduction are also helpful. Best of luck!
I wish I could get checked regularly however my appointments are 3-5 months between and private is too expensive. Are you in the uk?
Yes. I used to have 4-monthly checks, now it is just annual. But I have a fast line to the consultant's secretary in case things deteriorate.And my GP monitors my inhaler use.
I was trying to reply at the end of this whole discussion but can't figure out how. I was going to ask you ladies where you live that you see "consultants". I'm not familiar with that. I see a Rheumatologist for my joints and a Pulmonologist for my lungs. We can see our doctors anytime we want. I was diagnosed in 1998 and am on long term use Methotrexate injections and Remicade infusions. Prednisone for flares. Doing really well right now. Good luck to all of you.
Hi Barbara. Although I'm not a lady, in common with most people on this site I am in the UK. We have a General Practitioner who we can see any time by appointment (free).They can then refer us to specialists ('consultants'for various conditions, usually hospital-based (also free). So I see my GP regularly and also see a Sarcoid consultant and an Opthalmic consultant, but less frequently. Hope that answers your query!
So is a "consultant" what we in the U.S. call a specialist? I was getting the impression it wasn't even a doctor.
Yes!
Hello Amanda, yes, the moonface effect. All to do with fluid retention. It quickly drains away through frequent trips to the toilet as the tapering off sequence takes effect.
I was surprised to read about the veins though. I hadn't experienced anything to do with veins showing up just under the skin. Maybe that is more common with women.
My husbands face does get swollen when he's on steroids. I t does go down in time. Good to see you have so much energy.