UP AND DOWN?? GOOD OR BAD??
Posted , 12 users are following.
Hi everyone.
Most of you know all my health issues at the moment.
As far as the PMR goes, I've decided to turn to this forum for advice as I've just got TOO MANY DOCTORS, all with different info on what to do. So I'm asking the "experts" for opinions/advice!
As I've said a gazillion times, I've been trying to get off prednisone from almost the beginning. A few months ago, I was on 3.5mg and tapering. Then, my world imploded, and I started having alot more pain...(shoulders, knees, elbows,etc).
So with the advise of you'll, I went up 5mg until I saw my doc. a wk later. She wasn't happy with me and wanted me to start an immediate taper. it's NOT working. the last few days, I've started taking 4mg one day and 6mg the next....not as a taper, but something to do for awhile..???
anyway, has anyone else done this? is it a "dumb" thing to do?
sorry guy's....I know I'm pulling at straws......I'm just not coping well with my life as it is right now😕.
0 likes, 27 replies
ptolemy lynda62707
Posted
I really do not understand your doctor. She gives you pred which works, so she now decides she wants you to get off the pred so you are back to square one! Surely it is how your patient feels that is important.
EileenH ptolemy
Posted
Especially since pred is used in non-Hodgkins lymphoma - which you'd think this might be since they aren't rushing to do anything,
mary19068 lynda62707
Posted
Hi lynda62707
Wow! talk about going through the mill! Have you asked your doc why she specifically needs you to be off pred?...why is she in such hurry?....if she hasn't explained why, do ask her, there may be a valid reason. In the meantime, stay on the dose that eases your pain. It must be a nightmare dealing with other medical problems and family problems and trying to cope with pain😥 You have to do what is going to help you cope through it all, only you know what you need to do to ease the pain if it means upping the dose then so be it. As is often said 'we are all different' and our bodies do not react the same as the next person. Do what you have to do Lynda my friend we are all thinking of you and going through it with you. .Lots of blessings, love and heartfelt good wishes your way...😍🙏👍❤
lynda62707 mary19068
Posted
thanks Mar.....I DO know my body better than any of the MYRIAD of doctors I have pushing and prodding me already!......Ughhh
and no, I'm not sure why she wants me off the pred so quickly. no one wants that more than me, but Jeezzz, I'm doin the best I can right now!
I've called 2x today, and so far haven't heard back from her.
😢😢😢😵I WANT MY LIFE BACK!!
How are all other areas in YOUR life going??😷
mary19068 lynda62707
Posted
Hi lynda62707
As you know i tapered off pred approx 2 years ago was left with shoulder bursitis and cataracts. After shots of cortisone injections into my shoulders (7 in all) the pain has now eased off. I am seeing optician this week about cataract in my left eye because sight is getting very blurred. Also i have been having dreadful pain in joints and muscles and feeling extremely tired even if i sleep well and i'm gaining a bit of weight. So doc ordered blood tests for ESR and CRP, iron, B12, vits minerals but all normal. Now she is of the opinion i have many symptoms of hypothyroid which can cause joint pain and muscle pain and dreadful fatigue and all the other symptoms i have. So i am having further blood work including thyroid testing. I know it sounds insane but i hope they find something because the pain and tiredness is overwhelming 😣I will let you know the outcome. Meanwhile thinking of you and hoping you can deal as well as possible with your health issues....and eventually get your life back...kind and loving thoughts and wishes to you and family...😍😊❤
lynda62707 mary19068
Posted
Oh Mary....I'm so sorry you're having troubles again. (God, this is SO never-ending!)
I've only had one cortisone shot ever, (in my foot) and it just about sent me thru the ceiling!! I can't even imagine SEVEN injections!
I too am having alot of trouble wih my left eye and blurry vision.....that's the eye I didn't have taken care of way back when......there's just been too many other things to deal with. It's very annoying tho', and needs to be dealt with.
I woke up this am with a sick, migraine.....ughhh😠. I think I've been doing too much thinking.
Please take care....I'm only a post away!
Big hugs❤❤💆
sophiesu20099 lynda62707
Posted
listen to your body....ive been on 5mg for asthma for years....then up to 40 mg
slowly tapering off. YOUR body knows what it needs, if you are in pain, your body is talking
TO YOU, alot has to do with your food too. sugar, wheat, dairy will create more inflammation
AND pain. i have tapered down from 30, now to 10mg. but when im having a flare up my body
requires more, my two MD told me, to go very slowly.
Right now between 10-12.5, / seasons changing. if you need more, listen to your body...
your wellness is your responsibility....as you relax into a better place you will need less.