Rheumatoid Arthritis Support Group
Rheumatoid arthritis is a chronic, inflammatory, multisystem, autoimmune disorder. It is a disabling and painful condition which can lead to substantial loss of mobility due to pain and joint destruction. The disease is also systemic in that it often also affects many extra-articular tissues throughout the body including the skin, blood vessels, heart, lungs, and...
Hi RA friends. I am 26 years old and have been dealing with RA for almost 20 years. It seemed that the older I get the worse off I am. After my pregnancy it really affected my RA. I have really bad flare ups that can affect me for weeks. These flare ups include a really bad rash around my schleraderma areas, and really makes me swell, and cause horrible joint pain. I took prednisone for 6 months gained 40 pounds and feel worse than I did when I was on it! I can't seem to lose the weight, I can't do strenuous activity, when I push myself to do it I am usually down for days recovering because of the joint and swelling pain. I go for walks when I can but I have never been this "tired" in my life. Since the prednisone I am lucky to make it to about 3/4pm without feeling so tired at work. By the time I get home I don't want to do anything because I am just exhausted. I get enough sleep it is not that. I feel I need to take control of this disease before it ruins my life!!!! HELP how do you cope, how do you deal with the exhaustion, the weight gain that won't go away. Honestly I am so used to the pain that is the least of my concerns.
Thank you all for any feedback!
Thank you all for any feedback!
I was very fortunate to not get RA until I was in my late 50's. I gained weight after my hysterectomy and I quit smoking. I the extra pounds want to be my BFFs.
Hopefully, you can find a mix of drugs that will help you feel better soon.
There was about a week this summer where my pain levels where low enough to allow me to do yard work. I noticed that when I pushed my lawn spreader just a little bit my legs felt week and fatigued. I obviously have to take the elevator now due to knee pain and stiffness but the last ime I tried the stairs at work my legs didn't have the strength to carry me up them. Finally, my most recent flare involved muscle as well. I pretty much view it as progression, so does my doctor and so does all I have read. Myositis is muscle inflammation and degeneration and I'm now diagnosed with that and maybe you are experiencing the same thing. I hate it and if my RA ever gets under control the first thing I want to do is try and rehab the muscles in my legs. Muscle fatigue and myositis certainly happens to people with RA and there is some overlap:
http://www.arthritis.org/about-arthritis/types/myositis/
http://www.myositis.org/learn-about-myositis/complications/overlapping-autoimmune-diseases
you have RA. you have had it for 20 years, juvenile A since a child?.
ok so the pred is just a masker of symptoms. what are you taking to treat the actual diseases that you have (sclerod. and RA) what is your RA cocktail? which dmards are you on? which biologic are you on? do you take nsaids at work? are you off the pred? how many hours are you working?
screw the exercise plan, you are age 26, working full time with a five year old and 20 years of ra behind you since what you were a toddler yourself?. if you have extreme joint pain at THIS age your medicinal cocktail aint working.
what is your rheumatologist like and what does she think?
welcome glad you are here.
depot
hopefully the oer 20 somethings on the list will chime in about their cocktail but I am thinking that the DMARD alone thing for you is not working and maybe they could be more aggressive with treatment? in particular since you have had this since babyhood?
I don't think your rheumie should have you downing motrin when you are not on a biologic to prevent the onslaught of the disease.
coming off pred makes me wicked wicked wicked rebound worse tired but then so does the disease. and you have a five year old. be kind to you. get into the rheumie, take a cancellation appointment if you can
depot
I had to get 100 mg of cortisone before my Rituxan infusions two weeks apart. I was not on prednisone, although I had been waiting for the initial infusions to work, for 4 months.
By the second year, I was feeling so exhausted, it was like someone had drained all the blood out of my body. The exhaustion lasted 2 months after every set of infusions. I thought it was a side effect of Rituxan, but my rheumatologist said it was prednisone withdrawal.
For the next infusions, I only did 20 mg of prednisone, and I did not experience that problem.
You might have to revisit prednisone. You should not cut down more than 2.5 mg every two weeks. So sometimes it takes longer to get off of the prednisone, than you were on it.
Currently I'm weaning off. Even at 1/2 mg increments it's brutal.
I agree the exhaustion is intensified.
Perhaps a combo of the disease & dropping the Prednisone.
Cognitive skills can be a huge problem. Whether separate issue or caused from such severe exhaustion it's extremely difficult to deal with. Just can't get my thoughts together enough to get the words out. Not sure how others compare typical RA exhaustion levels to those while weaning or dropping Prednisone but I find it virtually impossible to push through.
The weight I think comes with time for many.
Weaning my appetite can swing from non exsistant to cravings.
Totally understand. Now I have to ask the same about revisiting your treatment plan.
Depending on how long you've been off the Prednisone I'm guessing you & your doctor need to determine what's RA induced & what's left from coming off steroid therapy.
I've heard of others restarting Prednisone to gain control & then reducing.
Researching I noticed there is more then one way to reduce.
Also read it takes time for our bodies produce naturally again. Not sure we can avoid this.
Perhaps speaking with your dr if this continues & discussing a path forward.
Sounds like you have a full plate. It has to be some what stressful.
As much as we may like our doctors it's those willing to step outside the "normal methods" if need be. Taking into consideration each patients individual needs.
I have noticed staying hydrated seems to help a little more.
Just started forcing myself to stay on fluids. Thus far those days I manage to get more water in I tend to feel a wee bit better.
Hope this continues to help. Have to admitt just started forcing more fluids down so we'll see next couple weeks.
So hope it gets better soon.
Sammy
These guys are right. You need to get off that stuff slow. The prednisone has made cortisols in your brain for so long to help with pain and inflammation and now your own body has to start making them again. You'll be tired as well in the mean time. It's a miracle for some and a curse for others. What NSAID are you trying? I've had no luck with Relafin, Naprosyn, Celebrex and Meloxicam. I can tolerate the 300 mg capsules of Lodine (etodolac) just fine long before RA so I'm forced to stay with that or get rashes, stomach problems or blood pressure levels that are absurd. Hopefully you'll find something to help with inflammation but it will never be as potent as prednisone. Maybe the methotrexate will be the answer!