I have resisted being put back on prednisone for while but recently had to start a high dose because of vasculitis on my brain as well as many other places in my body.
I am going crazy with mood swings, insomnia, bloating and weight gain. I feel like I have no control over my life, my body or my mind!!!
I hate prednisone!!! My doctors say there is no choice at this point - it is prednisone or a stroke. I am feeling so anxious and so defeated. I feel like the last year has been a prednisone roller coaster - on and off and then on again and I want it to end.
Sorry for my rant - as I have stated I am a bit crazy right now.
Meg, no need to be sorry for your rant. This is THE place to rant. We understand and can empathize with each other. Being on prednisone is no fun, especially a high dose. I hope you start to feel better once it’s lowered.
Hang in there- prednisone at high doses is a nightmare but it is saving your life- if you can keep that in mind it will help you tolerate the side effects until they are able to lower your dose. My house was always its cleanest when on max dose prednisone= I would be madly cleaning in the middle of the night when I couldn't sleep :>)
its whats keeping on of my little dogs alive right now too, it stops her brain and spinal cord tumor from growing any larger and my 17 year old dog is on it in high doses so she can walk due to arthritis, it is a wonder drug i have to say
poobie said:
Hang in there- prednisone at high doses is a nightmare but it is saving your life- if you can keep that in mind it will help you tolerate the side effects until they are able to lower your dose. My house was always its cleanest when on max dose prednisone= I would be madly cleaning in the middle of the night when I couldn't sleep :>)
I hate prednisone too! I have been begging my doctor to taper it off! But she refused because she has already removed plaquenil due to bad effects on my eyes. I can feel your frustrations! You just need to hang in there! We all need!
I totally understand...but you have to remember that they will decrease the dose and you will start to feel sane again....though I feel for you girl....been there, done that many times...I hate it with a passion....finally I have not had to be on prednisone for several years....(knock on wood).....So rant all you want Meg....my heart goes out to you....
Don’t be afraid to rant Meg… There are alot of daysI want to rant but can’t because so many of my family is tired of hearing about my body, that I feel alone in this. That is why I joined this group and also have a counselor. I have been on Prednisone for only 6 weeks and had to be taking off of it due to excessive bleeding! Started my monthly, and has not stopped since!
I would have thought that you would be on some sort of blood thinner (aspirin, plavex) to help prevent a stroke due to your vasculitis....I could be wrong (but it happened to me) so double check me suggestion. All the best.
If you don’t mind, what are your symptoms.
After a year of being diagnosed with SLE, Fibro and Vasculitis, I once again have Vasculitis all over my feet, chest, knees, hands and what concerns me most my eyes and face.
Was in ER and placed on 60mg of prednisone. It’s helping but nothing good comes from this high of a dose.
Right now, I am down to 30mg and been having really bad headaches. This morning woke up with the worst headache ever and after taking a migraine med that was giving to me by my neurologist, I noticed dark red patches around my eyes. Especially on my eyelids, under my eyes oh and my nose and forehead.
I am scared that this is a warning for something worse to come. Please any advice is greatly appreciated.
Thanks For all the Encouragement and Prayers!! The doctors tell me I can begin to taper my dose in a few weeks so I know that this will end soon enough. I will ask my doc about the blood thinner, my family doc wanted me to take one but the rheumy said the prednisone should do it.
In regards to the question about my symptoms- I have many neurological symptoms (numbness, stinging, inflammation of the eye, headaches, dizziness, confusion/memory issues). Plus other symptoms: vasculitis in my hands and feet and legs, raynauds, chest pain and tachycardia, rashes, earaches, stomach problems, exhaustion, sun sensitivity, low grade fevers, joint pain.... I have been told I have Lupus, Sjogrens, Fibro and Raynauds.
I am very thankful to have all of you to rant with!
newbe said:
If you don't mind, what are your symptoms. After a year of being diagnosed with SLE, Fibro and Vasculitis, I once again have Vasculitis all over my feet, chest, knees, hands and what concerns me most my eyes and face. Was in ER and placed on 60mg of prednisone. It's helping but nothing good comes from this high of a dose. Right now, I am down to 30mg and been having really bad headaches. This morning woke up with the worst headache ever and after taking a migraine med that was giving to me by my neurologist, I noticed dark red patches around my eyes. Especially on my eyelids, under my eyes oh and my nose and forehead. I am scared that this is a warning for something worse to come. Please any advice is greatly appreciated.
Take a look at A.m.p floracel. My sister has lupus and a doctor put her on this product. As a result she is now in 100% remission. Although if she stops taking the product her symptom do start to return. Take care, Jeff