I had 2 months of feeling better than I have in years on a double dose of Enbrel (50 mg 2x / week).
Then 10 days ago I woke up stiff, sore, and in pain. I thought it would be temporary, but though some days are a bit better, yesterday and today are another downswing. I don't usually have back problems (other than some SI stuff), but every muscle from my butt to my neck feels like I've been beaten with a bat. Joints are locking and giving out all over the place. I finally gave in and took 8mg prednisone this morning (pred makes me depressed and super angry).
The ONLY thing different was I started a new box from a new delivery of Enbrel. I injected the last of that box yesterday, but will start another box from the same shipment in 2 days. I'm wondering if I got a bad batch??!!! I'm sure it's possible, but it's never happened before. I honestly feel like I'm not taking ANYTHING.
have you asked your rheumy yet? you may have gotten some bad batch or something. i just had a super flare up last week and its starting to pass today. I think the weather and changing seasons makes it flare worse, my wife and mother in laws RA is flaring bad right now too.
Same thing happened to me. I wondered if my Enbrel had not been kept cool enough as I live in a sub tropical climate and the delivery to my pharmacy takes a while because I live in a remote area on an island. I asked questions on this site and spoke to my Rhuem about this and he said this was not possible now days and it will last out of the fridge for days. My Rhuem said I could still see improvement and it could take up to six months. I am now in my 6th month. I have had some improvement but it has not got back to how well it worked in those first few months. I sure would like to feel like that again. I will have to wait until my next appointment to see what is recommended next time. I will be taken off Enbrel if I don't show enough improvement. Is Enbrel expected to completely stop all flares? I haven't had a flare since being on Enbrel and normally I don't get flares that often, only once or twice a year but they can last for weeks and sometimes months.
I know how disappointing this can be. I do hope you are improving.
I have been on Humiria, Simponi and Ebrel X2, with and without mtx each for about a year. I got some relief with all of them but then they seemed to wear off. After about a year with each of them I felt no effect at all. I do not know if my body was able to build immunity to these biologics or not but I am on Remicade now with 22.5 mg of mtx I inject weekly to help prevent the formation of immunity to the medications. It felt a little different with each of them but it was like getting flares that were stronger and more frequently until there was no end or beginning. I know my medication was not "spoilt" as it is delivered straight to my house, the ice has never been melted and I put it directly into the fridge. The only time it sat out for a while ( the snow plow ran over all our mailboxes and it ended up at the bottom of a snow bank and my husband had to retrieve it when he got home for work. You got to love Vermont!) but it was winter so all was well! Good luck, I really hope you figure out what is causing your medication stuttering or fading.
I too have just had 4 months of severe pain both hips and both knees(right one already replaced) rheumy could not understand why increased pain meds had not worked because he thought it was Osteoarthritis, and started on emotional issues which I did not have apart from issues of feeling a dramatic aging process 58 to 88. Finally had enough and started on course of cortisone in desperation.set out by Rheumy for flare of Osteo that I thought it was. this was the problem and of course Cortisone is not meant to work for that. Three days after I was a new woman, mobility regained limited pain and a feeling of such well being.
My regime when having a flare is 15 mg for 2 weeks, 10 for two weeks then 5 mg for two weeks then zero and review after that.
Bright light in Rheumys mind , all this pain was Psoriatic arthritis , if only I had known. Cannot blame anyone just grateful for relief huge relief.i also take Methotrexate and Arava.
Ugh everyone. I took 8mg of prednisone yesterday and today I feel just as bad. I was hoping it would do SOMETHING. I really went from feeling great to pretty much in agonizing pain / unable to move without pain / joints locking up or giving out ARGH. Usually there is middle ground for me, where I start to slide, I up my meds and suffer awhile then bounce back.
I just resumed my Arava (dr. said I could continue taking it, I stopped many many months ago because I felt I didn't need it).
THIS SUCKS! The weather is glorious here in the Seattle area, and I should be taking advantage of it instead I'm in bed or on the sofa, taking painkillers so I don't start screaming, and just getting through the day (in between driving the kids to activities 10 minutes away).
In my limited knowledge Arava takes 8 weeks to be effective. Prednisone takes at least a few days to work. It took 3 days for me to go from bad to much better on 15 mg. My Rheumy has a set standard that you start taking if there is a flare.
It is a terrible way to be and I hope you soon improve. I am going leave some suggestions in case you haven't tried them. I understand that this can take more effort than you might have right now but it might help.
Heat Pads, Ice Packs or alternate which ever works for you.
Epsom Salts in a hot bath.
TENS until for pain, especially back pain
Gentle exercise - can do in a comfy chair. If you don't move you can get worse and stiffer.
Sunshine 3 X 10 minutes a week - Vitamin D
Gentle massage with a strong linament. Tiger Balm is a good one It sometimes takes a few days to see the result as it can stir things up as it releases toxins out of the joints. Well worth it if your up to it.
Eat plenty of fruit and vegetables - Your body needs the best possible chance of repairing damaged cells and making healthy red blood cells.
Drink plenty of water to help flush out toxins from your body.
Supplements like Rose Hip capsules high in Vitamin C and it also has another ingredient that help joints, Krill Oil and Folic Acid
Do things to keep yourself occupied even if it is watching a DVD movie. Anything that will take your mind off your pain will help your pain level.
Make yourself as comfortable as possible and pad yourself with pillows and cushions.
Thanks for the reminder about how long it takes. I've only taken pred. a few times in the past couple of years, and only for 1-2 days, because it makes me crazy (literally). I'm so sensitive to meds I usually see something change the next day (the pred). I know the Arava will take awhile, but since this flare shows zero signs of abating, I decided I may as well start up again.
Old Lady said:
In my limited knowledge Arava takes 8 weeks to be effective. Prednisone takes at least a few days to work. It took 3 days for me to go from bad to much better on 15 mg. My Rheumy has a set standard that you start taking if there is a flare.
Thanks for the suggestions bella! I'm doing most of these already, it's always good to have a reminder of how to do self care, even for a veteran like me. Sometimes when things go downhill all my great coping skills go out the window! :)
Thanks for the suggestions bella! I'm doing most of these already, it's always good to have a reminder of how to do self care, even for a veteran like me. Sometimes when things go downhill all my great coping skills go out the window! :)
Thanks for the suggestions bella! I'm doing most of these already, it's always good to have a reminder of how to do self care, even for a veteran like me. Sometimes when things go downhill all my great coping skills go out the window! :)
Oh don't I know it. You wonder if you are going to be disabled permanently, or use a walking stick and you don't want to be one of those ,so you live in hope. I have been so lucky so far but this flare scared the hell out of me.We are just about to retire. My husband works I haven't worked in 10 years due to other health problems ,so I want to travel and do the things we planned. I don't know how people manange who have to cope with work as well.
My husband and I are unique we both have Psoriatic Arthritis.So of course we worry about pour children. One son 35 already diagnosed, daughter 32 so far OK.
Oh don't I know it. You wonder if you are going to be disabled permanently, or use a walking stick and you don't want to be one of those ,so you live in hope. I have been so lucky so far but this flare scared the hell out of me.We are just about to retire. My husband works I haven't worked in 10 years due to other health problems ,so I want to travel and do the things we planned. I don't know how people manange who have to cope with work as well.
My husband and I are unique we both have Psoriatic Arthritis.So of course we worry about pour children. One son 35 already diagnosed, daughter 32 so far OK.
That sounds really tough. Of course, you can trade meds, advice, and experience!
Old Lady said:
My husband and I are unique we both have Psoriatic Arthritis.So of course we worry about pour children. One son 35 already diagnosed, daughter 32 so far OK.
Yes we ask each other which part hurts today. His are mostly sausage fingers and an ankle & Whilst still working Humira has been a 40 year career saver so he has it once a fortnight & has been good ever since it was prescribed but he never has flares nor has very bad days but I have a feeling once he stops works that will be the test.
For me today after reducing cortisone 3 days ago pain in hips has returned so not looking forward to the next few days but what can you do, one day at a time and there is always someone worse off than myself.