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A myRAteam Member asked a question 💭
Laguna Beach, CA

Hi everyone! I will appreciate anybody’s feedback
I’d like to know if anyone is experiencing periods of extreme pain in almost all joints (nights are unbearable, days very painful) and then months of absolutely no symptoms? It’s been going on for about 3 years, I’m 41 years old and had two different diagnoses from two doctors. One diagnosed me with seronegative RA, I had all the physical symptoms. The other one pretty much doesn’t think I have RA, but undifferentiated rheumatoid disease and… read more

June 16, 2019
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A myRAteam Member

Sounds like you are having bouts of Flares.

The prednisone will work on them to ease the pain when the flare is active, however they say that if you have RA you MUST take other RA drugs to make sure your joints do not continue to get damaged and become deformed.

I really do not want to take all this RA medication that prevents joint damage and would love to just take prednisoine during flares but I am only 58 yrs old and do not want my joints all knotted up to the point I cannot hold a fork.

It is a tough decision. Do you add more poison to your body or become deformed to the point you need daily caregivers?

June 17, 2019
A myRAteam Member

For me I would want to know a) more about this disease progress be it RA or Sjorgens : for example what damage is evidenced by Xray results at this point in time? On physical examination same question but in two parts when I am in a flare and when I am not. Has my disease progressed over the period of time I have noticed the symptoms? What does the rheumy recommend and why? If this drug then how effective is it when it works, and how many folks actually experience a remission of symptoms.
Irrespective it might be time to look at your lifestyle, diet, exercise, etc, and try out some low inflammation diets, get regular rest etc, build up your base health before the next onslaught of symptoms. We have so many options for exercise, ditto diet, that one might work well for you.
I also agree with the above poster, that there are some tough choices we all face who have this disease!!

June 17, 2019
A myRAteam Member

Thanks Sam!
Enbrel was working briefly then it just stopped...just like that!

June 24, 2019
A myRAteam Member

I wanted to mention, the first year I tried a lot of things. I went gluten, lactose and sugar free. I took all sorts of supplements, herbs etc. I didn’t exercise, I could barely change my clothes, drive, walk. I did sleep only about 3 hours because of the pain... I don’t know, how I managed to get to work every day 😂. Now I’m pain free and all I do is a light exercise every day (I was very week, especially my wrists and hands), eat pretty much everything and drink a LOT of coffee (I still feel very tired).
I am happy for every day I wake up feeling normal.

June 20, 2019
A myRAteam Member

I wish I was in remission! No way! Having a 7 month long flare and needing to take Prednisone doses ranging from 25mg to 10 mg over the last 7 months every single day is not good!
Recently started IV Infusion Acterma to hopefully put me in remission & get me of this darned Prednisone. (Nothing else worked so far) Prednisone is doing so many bad things to my body!

June 22, 2019

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