Hi Ladies
When my double vision started and I had radiotherapy...I was given dexamethasone for three/four weeks and I felt so much fitter and my appetite improved
I’ve now been taken off them and I feel awful..no energy or appetite and having thoughts of not carrying on with treatment especially if it has to be chemo ...I struggled to walk up my road today...thought I wouldn’t make it
Any of you ladies experienced this...if so does it improve?
Barb xx
Hey, Barb! So good to hear from you!
About the Dex- yes it did so help my stability, lessened my joint pains in hips and knees, as well as helping decrease cranial pressure from mets. Off it now for 10 days, joints are back to angry constantly, and stability has had a bit of a backslide.
But generally not terrible and looking forward to getting back into a rhythm. Hope it will be so with you.
I Did start new chemo after treatment for brain mets- jury is still out on that- weather I will continue. I understand the feelings of just putting a stop to all treatments. It’s something that needs consideration whenever there is a major change.
Give yourself some more time, and be nice to yourself. We’ve missed you. kc
Hi Barb
Good to hear from you. I had a terrible time with dexa . Not while I was on it but afterwards .my ankles swelled up and I couldn’t do much of anything. Doctors were telling me it was out of my system but I know my body-it took a good two months before I started to feel semi normal again. Hope this helps. And I still feel that way about starting chemo.
Love and hugd
Hi Barb -
I searched on dexamethasone and found this info, but then I saw that Sandra weighed in with true expertise... 
But just to echo what she said, here's what I read:
"Stopping the drug abruptly can cause loss of appetite, upset stomach, vomiting, drowsiness, confusion, headache, fever, joint and muscle pain, peeling skin, and weight loss."
So hopefully you'll bounce back a bit, with some time?
Take care,
Lynn
Was just taken off abruptly after 4 years...everything but weight loss of course! 😱🙈🤷♀️😱😂
Hi Barb,
I don't have any wisdom about the Dexamethasone. But was so glad to see you on the board and to hear you took a walk. Best wishes. Blessings, Hannah
Hi barb, yes my mum has took dexamethasone several times and everytime we see a big difference in her appetite and general health, once come off she goes back to before I think the amount you take daily impacts on how you feel after coming off them more, Iv found with my mum, but I think they are a blessing just started mum on them again only 2 per day and she has perked up loads appetite back to normal, wish you the best of luck?
May I ask how you are doing on the fulvestrant? Think you stared around same time as my mum she is doing well x
Barb, all I can do is send virtual hugs. I don’t know of this treatment but it seems plenty do. I hope their comments help you.
Best wishes
Cheryl
Hi Barb! I just got off the Dexamethasone...Short term it does give u energy but after 4 years it started to mimic degenerative disorder in my shoulders, pelvis and knees. Not good. I was not impressed with the fact that they took me off cold turkey...I really wish they would have a weaning dose 🤷♀️...But if u do chemo u could ask for it and say u had a reaction to the chemo 😱🙈😱(Did I say that out loud?)
Good luck on future treatments!
Hi Barb— great to see your post, but so sorry about steroid withdrawal. It usually takes me a few weeks to feel “normal” after coming off steroid treatment. I hope your adjustment is quicker than that. ❤️
Great to see you posting Barb. Sorry I know nothing about steroids but obviously several do. Fayx
Sounds like they’ve taken you off the steroids far too quickly. Is it worth talking to your oncologist about having a withdrawal dose? I’m having intravenous dexamethasone as part of my chemo and am given tablets with a low dosage to take for 3 days afterwards. I’ve always reacted strongly to the steroids and I buzz for hours after my chemo and I don’t take the full dose of tablets but they do seem to help.
Steroids do make you feel better. It’s why our President was boasting that he felt like a 30 year old after his Covid treatment. The affects go away after it is all out of your body. I was on it when I was first diagnosed to help with the pain I was on. It was the best I’ve felt. Unfortunately the long term problems with it can be horrendous...you can swell up like a ball and get a really round face as well as other problems to your organs. Good luck with getting off of it. If your doctor isn’t weaning you off, smaller doses each day, he should be.
Elaine
Just told me to stop them!!!
Been off a week now but still feel exhausted...ugh
Barb xx
What dose were you on. I was given 2mg after my lung biopsy went wrong. That was ages ago and with liver, spine and lung mets I don’t think I would get up the hills round here without it. I take 0.5mg per day. Seems strange they worry about long term, as most of us don’t, have the joy of looking forward to long term x
That’s what I thought
I was on 8 mg for one week then 4 mg for 2 weeks and she said the same to me about long term usage...I felt really good on them and would prefer to be on a smaller dose...will ask next appointment
My markers are up again so I need scans sooner so I’m worried about that as well as feeling rubbish
Barb xx
Poor you. But do ask for a lower dose. Even my .5 mg helps though I am supposed to take 1 mg per day. Once I found I could manage on 0. 5 I reduced the dose. Keeping my fingers crossed for you xx
Just curious if you do not mind. If you were doing well on it and felt good, why would they take you off it? At this point, I am on so many "addicted" drugs that I would have a bad withdrawal getting off any of them. So at this point, I do not care anymore. If it makes me feel better, what is the problem. Was there a reason they took you off it? I think it must be worse to get something that makes you feel so much better only to have them take you off it.
I already have a totally swollen left leg and foot that does not even resemble a foot anymore and my legs is turning colors and my foot.
And my last CT scan showed new masses in my lungs which were not on previous CT scan (I always get three every three months). So next month is going to be bad bc she wants a scan just of my throat done the day before I see her (they get results the same day) bc they have nothing to compare it to. So this will be the shortest amount of time between scans for me (only two months) and the only thing I am upset about is that she said there will be a new treatment line and not to worry she will help me deal with the side effects. Just her saying that made me worry. That means she already knows they are going to be bad.
I was in a decent place with the Verzenio and now I do not want to start all over. I am even thinking of telling her I do not want to start any new treatment until January. I want to enjoy the holiday and if possible stay at a friends for Thanksgiving but not if I am going to be put on the new med. Sad thing is I am starting to care less and less about the darn cancer. Right now the severe rash is mentally breaking me down.
I would not care what they gave me. If its works, I would just want to stay on it. This rash is breaking me more than the stupid cancer.
Barb, I think you have to give your body a chance to withdraw from the steroids and you will feel better.
Happy you posted! Miss you!
Joint & tendon pain on Aromatase inhibitors
Unpredictable health.
Starting Ibrance soon
