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Rheumatoid Arthritis
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Posted 6/12/2015 1:56 AM (GMT 0)
Hello turn
Pain..
Dont know what to do, quited treatment.
So tired of trying and searching for the right way to treat.
Been on alot everything from nsaids->mtx->biologic->diet/training/physical therapy ->jointinj-> prednisone. Can go more in detail, if someone wonders.
But back to the question :
I cant remember a painfree minute while awake, but prednisone(20mg+) has really worked great when im on it but the doctors not want me to use it.. Beacuse of side-effects, the dose and that I gets really bad when lowering the dose.

Really tired of hospital stays,doctor visits,treatments and being sick and just tought that if I did not take any medication or not needed to be at the hospital as often I would feel great. I do in one way and does not regret quiting since it did not help..

But!
I cant sleep, and just everything with my body is a mess.
Want to feel painfree. Just getting worse, im anemic w symtoms , fever, rash , fatique,swollen ribs(?) and stifness,pain in all my joints and hot joints. got unspesific JA. Hla b27 posetive.

Sorry for a messy post but hope for some response.
Posted 6/12/2015 2:35 AM (GMT 0)
((((((((Gentle hug)))))))

It's frustrating when it's hard to find the right mix for us. It's the old saying, "(blank) if you do and (blank) if you dont."

I'm never totally pain free myself, but I can get to tolerable. My doctor wants me avoid steroids myself because of diabetes and cateracts. He has me on plaquinel and Leflunomide. It seems to keep the swelling low, but I do have to have blood tests every 6 weeks. :(

It's a battle going on inside our bodies. Some days we win, other days it wins, but we must keep fighting. I hate to see what would happen if I gave up and stop fighting.

Please stick around and feel free to vent. Having someone to share the load makes it lighter.
Posted 6/12/2015 10:40 PM (GMT 0)
Thats great, but understand thats its hard to get bloodwork as often.
Like I have had periods when i needed to be 3days a week in day-care,infusions every 4 weeks and 6 inj a month.
Just to gotta feel bether but still it did not work, so I kinda gave up..
I understand that to, does not want to give up but just want something to work. Iknow that not feeling any pain at all, is not what I need to hope for jsut hoping for not as badly pain.
Posted 6/13/2015 4:11 AM (GMT 0)
My rheumatologist insists that I see him every 6 weeks. He does the blood draw right there in his office and sends me the results in a couple of days.

I hope you can find an answer soon.

Have you tried any supplements? There are some natural supplements that can ease pain, but you need check with the pharmacy for contradictions.

Find the book "Arthritis For Dummies" there is several pain relieving supplements listed in there and some great suggestions.
Posted 6/14/2015 11:36 AM (GMT 0)
Vitamin D seemed to help with pain for me.
How long have you had RA? I found the first 2 years to be the worst. Not sure if it's a matter of acceptance of the "new normal" of if it really gets better...
Posted 6/14/2015 10:11 PM (GMT 0)
2wonder, I am sorry you are feeling so frustrated. While I have not been on the biologics yet, I too get tired of pain every day. Honestly, they need to do more for us for pain control. You can't be on strong NSAIDS or prednisone all the time.
And as if the auto immune disease isn't bad enough, many of us get fibromyalgia on top of it all. Sometimes for me, it's hard to tell what is hurting and why.
Also if you can't sleep at night, the pain will be worse. Perhaps the doctor could give you something to help you sleep better or get you out of pain at night.

I do not eat gluten, nighshade vegetables or MSG. I take evening primrose oil and also MSM supplements. I swear these help.

And sometimes, I still have problems. Honestly, I think sometimes we have to resort to stronger, narcotic pain killers but those are pretty controversial. But, they work-:) I hoard them whenever we have to have a surgery just so I have 1/2 to take on really awful nights. I do this about once every two months when I am in dire straits. Really, since I've been on plaquenil, it's been a lot better.
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