Hi Debbie,

Sorry to hear you're in so much pain. Yes I remember my first major symptoms in 2013 was shoulder pain so bad I would wake up take an Aleve & then get ice packs, prop them on top of my shoulders & try to fall asleep sitting up, hoping they would sit there the whole time. Sometimes it worked sometimes it didn't & I'd just stay awake until I had to go to work! It sucked!!!!

I am sorry you are so much. I am also a tad concerned about the amount of prednisone you are taking. It is more than I have ever taken in one day and hope you are aware that pred requires weaning gradually.

Consider discussing IV Humira with your doctor if the weekly doses don't improve things. You are, I hope being treated by a rheumatologist.

Definitely discuss with your rheum about your maintenance regimen, and have your arm checked -- that severe level of pain (with numbness) may be due to inflammation or compression of a nerve (and this can be at the wrist, or elbow, or shoulder).
I agree with WarriorGal's comments about your prednisone. You need proper guidance on dosing and when to take it and how to adjust your dose and wean off. You mentioned taking 20 mg at 2:30 am and then again at 5 am because you did not have relief. Prednisone will not provide you relief quickly in that timeframe.
I hope you get relief soon.

Hi Debbie

how are you today? I was wondering could you ask a friend to drive you into the ER the next time?. I am not much for the inappropriate use of the ER for medical care but what the hell if you are self dosing mega pred and you are on the couch crying your pain out and you can't get the limb comfortable I say call uber if you can't get anyone up. (do you have uber in your area?

You need medical sleuthing from one of those people with a coat standing in front of you most likely. From my own humble personal opinion only before the arm really went i had horrible pain that could only be relieved from dangling the limb. and this is with me knowing my diagnosis already, having been admitted for an observational admission and being on the surgeons roster within 5 days (I just sat at home and medicated til the day came). I had gone in the can to see if the nerve was being totally compressed (in my own personal case it was my neck of cervical as they say. I would never have gone online - and I don't think you should either. did you call the doctor at least the service?

let us know how you are.

depot

I am also very concerned at the use 40 mg of prednisone. I used to use that much for asthma, I have never taken that much for RA, even when I had flares in 100 joints. I had a friend with UC, and she used 80 mg for a long time, till it was under control, but she might have died her case was so severe.

First, prednisone has a lot of long term and short term side effects.

1. It will keep you awake. Part of the reason you may not have been able to sleep was the self medicating with prednisone
2. It will make you irritable and give you mood swings. Been there, done that a lot. It will also make you irrational and unable to be objective. Hence, a trip to the ER, with the care of trained doctors was called for. They can assess and treat, and monitor treatment objectively. You cannot.
3. It only stops symptoms, not the disease or the damage. It may even calm down the disease, and it will make a doctor think you are doing ok, by reducing the swelling, when in fact, the disease is totally out of control.
4. Long term effects include leaching calcium from the bones, resulting in osteoporosis and bone necrosis, or bone death. This happened to a cousin of mine. Several vertebrae in her neck were dissolved by prednisone, and she had to have a metal plate put in her head to hold her head up. Serious complications from prednisone, not the RA!
5. I sweat profusely on prednisone. Normally, when I go off, it stops. But after being on prednisone for 2 years it hasn't stopped. I carry hand towels everywhere, I sweat when I am lying down, standing, sitting and even exercising! It is very annoying. I have had tests for all kinds of other things, and they come back negative. So prednisone has permanently done something to my metabolism. (Not sure if you get this problem, but just a warning that there are little annoying things that result from prednisone!)

Sorry to be so negative, but I just want you to know the side effects of a drug that seems at first to be a magic bullet. It also seems to me like Humira is not doing the job. It is an entry level drug, so time to harass your rheumatologist for something different.

I do hope you get some help for your pain. This disease is just terrible, and sometimes hard to control. But do not give up hope! I have had years in pain, with uncontrolled and painful flares, and other years where the meds worked, and I got my life back! Praying you find a medication that will stop the disease, as well as the flares.

Wow. I got alot of good advice from everyone. I should let everyone know I don't use prednisone all the time only when I have sever pain. I do have a rheumitaligist and he is the one who gave them to me. I only take it once or twice a week and the 40mg is only on sever pain. I don't like taking it myself cause if the side effects. I do get the mood swings and I let my family know when I take it so they know if I get snippy it cause of it. I do sweat from it but only when it starts to work. When the sweats starts the pain starts to go away. I looked at some if the other posts on here and some say that some foods can cause flares so I am watching now what I eat to see if it helps. I will say prednisone only takes the inflammation away for a little while. Thank you all for the concern and I am going to stop using the prednisone. I do have an appt with Dr so I am going to talk to him about trying another med with the humria. Thank you all

I've unfortunately had many nights and days similar to yours. My rheumatologist also has educated me to use prednisone oral tablets as needed at home for pain as well, I'm guessing your rheumy also has discussed this with you. I used to go to the ER for IV type of prednisone (steroids) and my rheumy said I could increase my oral pred at home to help relieve my pain rather than spending $100.00 to go to ER for the same treatment given IV. I have used up to 120mg oral prednisone daily to manage the pain for the last 11 years, I always wean off slowly as directed by my MD rheumy, and my bone X-rays, labs etc show no ill effects from the prednisone usage over the years. I use 20mg daily for constant pain management, however my situation is different, I've been in a constant flare up for the last two years with no remission, my disease is getting worse, my RA factor getting higher along with my other labs and my liver doesn't do well with most RA medications, I'm currently on Leflunomide and seeing a pain specialist for at home Pain Management. I had to leave my career after 12 years as a cardiac ICU RN in a busy hospital when my RA became so bad I couldn't even drive, because I could not effectively and safely use my hands and feet to drive a car.
I am still very careful to wean down my prednisone dosage as directed by my rheumy, but taking the prednisone and pain Rxs at home has saved my $$$ and unnecessary days in the hospital, but me and my medical care team have worked on a plan over the years, constantly changing it as my RA needs warranted. I can relate when you're pain is so severe you wanted to remove the offending limb or some days, I wish I could "unzip" my skin and get out of my own body due to the pain!!

My rheum won't dose pred for me that way - I can see how this works for you jennyx - I am glad you have a plan with your doctor.

I was thinking of my nerve smooshing in my neck and my cervical fusion and all the limb dangling I did before. It took diagnosis and if I had just swallowed a lot of pred I would have suffered longer cause the root (no pun intended) cause of the problem would have been masked.

depot

Thank you xjennyx. I think we are simular. I am on dosage with my doctor. I don't like using prednisone but without going to narcadics, it's the only thing that works. I do t have to use 40mg all the time just on those horri la days. In fact haven't had any for 2 days now. It's nice to be able to chat with someone who is understanding. For me to go to ER it is 200 dollars to walk in the door. I can't do that. I know the numbing is from immflamation either pressing on nerve or circulation. I am doing better the last 2 days still have numbing off and on but not like that night.
Thank you so much

Debbie1966, what your experiencing reminds me of my first symptom of RA for me. My RA presented itself in a very unusual manner. I woke up on January 1, 2006 with a completely numb and limp left arm. I admit I was a smoker at the time and thought to myself, "it has happened, I've had a stroke! ". I called into work claiming to be sick, as I didn't want to discuss this "numb arm" with fellow employees, I was a cardiac ICU syepdown RN and my fellow employees are all MDs and RNs. Being an RN makes me a bad patient, I should have called 911, but I kinda figured I'd I ignore it, it will go away! LOL. My manager was shocked, I had never called into work, she laughed and said, If I didn't know you so well, I wilder think you were out celebrating New Years Eve and had a hangover, but I know you don't drink. Later that morning, the numbness got better, but the pain in my left shoulder had me in tears. Not only had I never called in to work sick, I didn't even take Tylenol, never took pain medications, even elected to have my son naturally with no medication. I grew up in a home that did not believe in pills, for any reason. Anyways, my pain jumped all over, from joint to joint, only on one side and in the large joints. So it took the MDs awhile to figure it out, my RA factor was negative, no Lyme disease, finally they tested my CCP and the number was greater than 500. So my RA did not present itself liked most other RA sufferers when first diagnosed, therefore I guess that is why my rheumy has had to make a very unique care plan for my RA!

Hi Debbie, Oh how I have experienced the same symptoms in my arm when I first started to have symptoms. I can empathize with you; the burning, swelling and pain was so severe I just wanted to die. I would be up all night doing what you have described. I had yet to be diagnosed and my MD at the time put me on medrol dose pack and that helped. I have gone through many tough nights since then. I am up now at 0400 in so much pain. I am waiting for approval of next medication. I hope you get some relief soon and I am sorry you are suffering so.

Update. I have not had any pain for little over a week. Well just slight pain here and there but nothing like before. I am hoping it was not just a flare up and that the humria is starting to work. So right now still worry about it coming back. I have been watching the fruits and veggies they call night shades also. I do eat alot of tomatoes and they are night shades so cut that and potatoes. It seems to be working but as I said still worried about it just being a flare up. Oh! And no prednisone either just some ibprofin now and then. It's so nice to have people understand how you fell cause my family has no clue what I am going thru. Love when hubby says maybe you need more exercise. Lol