Quote from Grana:Chell- I am from South Carolina in the US. Thanks for letting me know about that med and I will ask doctor about it. As the prednisone dosage is being reduced the symptoms are slowly coming back so therefore I know the pain is on its way! Insurance is a big problem in the US for many people and lots of red tape to get all the treatments you need. I take my last dose of prednisone in two days and then start on voltaren for one last try prior to the stronger stuff. After reading about the humira, enbrel, remicade etc it kinda scares you of the potential for lymphoma and other problems. However, I can not continue on this way........hardly can walk at times.
I know all about hardly being able to walk at times I get severe pain andmuscular spasms in my back and literally am hunched over if i have to walk at all, I can only go very short distances up straight on a good day ad my back also swells up it makes it hard to stand up straight, Ive a very severe form of PSA where all my joints are affected and the disease, pain swelling basically alll the symptoms are totally out of control,even on predenisole (ive been on it since may and every time we drop the dose to under 15 mg i flare so Im between 20 to 40mg)
I have literally cut the below paragraph from my newest post from PSA section it explains what is going on with me right now:
Its 1.25am now Ive spent the past hour getting sick after taking MTX earlier tonight Im after more antiemetics (things to stop you vomiting) and its finally stopped im sitting in bed now feeling miserable and in pain but should feel better in about 15mins Im just havin a fentanyl
(stronger than morphine
!!!) lollipop there called actiq
Ive been started on them today as im having a bad flare and could hardly walk nearly all my joints are afftected when i flare unfortunately,went to see my rheumatologist today and she thought I was very bad so she gave me the highest dose steroid injection into my a*s and thats helped my hands a good bit but they still hurt its just im able to move them again so its definately brought down some of the swelling but my toes ankles and knees are still very swollen and my lower back, but its brought down my finger and wrist swellin and one of my elbows is less swollen and my jaw has gone down a bit but im still rather uncomfortable.
Basically the outcome of my meeting with Sineád my rheumy was, the highest dose steroid injection into my butt, deciding better breakthrough painrelief was needed so we got onto the pain sprecialist and he said hes give me the actiq
lollipops, my oral steroids are increrased too, my MTX was increased to17.5mg today then up to 20mg next week,and then after 3 weeks at 20mg if im not too bad I can reduce oral steroids by 2.5mg,and ive to let them no how im getting on and im to ring next week if Im not much better after the week, so please god I will be.and we decided today that if in the new year im still having daily small flares and the many big flares and i cant get down off the steroids then its time to change my medication, but i can go up to 25mg of the MTX before then.
Im suffering from active depression and struggling to cope, especially when Ive just spent an hour vomiting from the MTX, its a horrible drug but works well for some, Humira
and the other biologics have many side effects i know but Humira
is a god send i know a few fellow sufferers on it one being my pain specialist and they have virtually no symptoms, very occasional pain and feel overall much better, i would love to qualify to be put on it as from what Ive seen is amazing, it gives you your life back, like my pain specialist is also an anaesathist(??spelling) in a busy university hospital and has his life back and a great quality of life, so dont worry too much i know its natural to worry a bit just keep in mind it could be the start of a great new period in your life.
Can i ask how old you are and for how long are you suffering??
Im 20 and have definately had PSA since my early teens but it only became severe in Febuary this year when i was diagnosed offically as PSA and not juvenille arthritis, and since then its gone down hill, I flare really badly when my other illnesses flare up to so I imagine yours would too.
Do you use heat pads?? I find tehm great teh electric ones or wheat bags
I also use a gel called biofreeze its great to cool down hot and swollen joints and it numbs them a bit also Im not sure if its available over there.
Hope too hear from you soon
Chell xxxx :wave: :wave: :wave: :D :D