Severe RA | Arthritis Information

 

Hi,

I have severe RA.  Anyone else here with severe RA?

I have had it 13 years, dxd in 1996.  Symptoms began before that and it was called polyarthritis.  No referral to an RD or anything. just given a bottle of ibuprofen. May have been because I didn't have insurance. So it went untreated for a year.

 

Now have been on many meds and failed many meds.  Enbrel and Arava combo worked the longest. yet still a great deal of damage to the hands and feet. present docs say they could have prevented it.  don't know and too late for "could have's."  I have been in the hospital a lot now the last year, my guess the disease but could have also been the orencia.  I was taken off of it and told it was causing more harm than good.  Now waiting to be approved for rituxan. 

Been off all meds for a year. in and out of the hospital for a year. the damage happens quickly when between treatments.  Anyone else with similar experiences, would love to hear from you.  thanks.  take care.

 

S--

Welcome Shelly. Glad you're here.Shelly-

You're right not to dwell on the "should have's". Sorry to hear of your situation. Have you found a good Rheumy?

Hi Shelly...welcome!Heh Shelly !!!

Hi Shelly!!

Thanks every for the welcome.

Hi Shelly, I have severe arthritis and have waited like you until there is damage to my hands  and feet.  I am now on MTX and prednisone for 6 weeks and I go back to my rheumy.   I hope you can find help.  So far it isn't relieving any pain but I understand it takes 3 weeks for the MTX to kick in and the pred is to try to lower my RA factor.  I wish you well.Hi Shelley, I have just gone off Orencia as well, before that Humira which caused mega infections, have now started AP in hope that will help. Hi Shelly.  As you can see, there are many here with similar experiences.  I too am one of them.  DX in 2006.  Started Sulfasalazine in 08/2006.  It did not work.  Started Methotrexate in 10/2006 and on 12/26 (almost 10 weeks to the day) I woke up feeling like a normal human being, however I did make my way to the max dose within 3 months.  Then had to go off the med to have a tooth pulled.  My body did not react as favorably to it when I started back 3 weeks later.  I ended up in a huge flare and the doc added Remicade.  Have been on both as well as varying dosages of Prednisone over the last 17 mths.  Some months have been great, others have been awful.  As of today I am waiting to hear about insurance coverage to move from Remicade to Enbrel or Humira. Hi Aleva,

I wouldn't say I waited until there was damage in my hands and feet.  I complained often about the RA.  In some instances I was without insurance and the complaints went unanswered.  In some instances, the meds worked for a short time but then stopped. Or I was in the middle of switching doctors.  Some can be impossible to deal with.  With the Orencia and Rituxan I was hesitant initially, but researched them and took a leap of faith both times.  I had agreed to start the rituxan some time ago, it has been the doctors and the insurance company doing the waiting.  My guess is the doctor was waiting until he felt it safe for me to be on the rituxan.  My kidney function was down, i was being hospitalized every other month.  So here we are, I have an appt. next week for the infusion.  I am just hoping something works finally.  I saw the commercials for Orencia and hoped the same thing for me as those in the commercial able to peel and orange, open a door, button a shirt, drive a car, etc.  I received very little relief from the orencia and then finally was taken off of it altogether.

so here we are again waiting to switch to another RA med.  the mtx helps some but they may need to pair it with something else.  my damage is severe in the hands and feet also, but also other places. mtx didn't help me much, it decreased the flares but I was still in daily pain. eventually it was stopped due to increased liver enzymes.  I even told them to ignore the liver elevated enzymes to give me the mtx if I didn't have anything else. Of course, that didn't happen.  It is just because i knew once they stopped the medicine the damage would accelerate until the next med is started and it did.  most of the damage occurs in between treatments. The damage I have is as if I never took anythng for the past 13 years and I have been on everything.

good luck to you with the mtx.  take care.

Hi Annie,

Success to you on the AP therapy. I did try that as well for 11 months.  The doctor told me I was difficult to treat because of my age.  I was 37 at that time.  He said he would do a hormone test but never did. It was difficult to get in to see him after that.  I eventually went back to traditional meds.  I didn't know at the time I could do both tradtional and the AP. I won't rule AP therapy out but it didn't work for me.  Hopefully you get success with it.

I did the Humira as well.  I didn't really notice much on the Humira.  I had started having reactions to the Enbrel and it no longer worked after they ran out and stopped it, and was placed on the Humira. but had been on the Enbrel for 2 years at that time.  I later went back on it after Humira didn't work.  the side effects outweighed the relief.  There was basically no relief of flares and pain anymore on the Enbrel. facial swelling, rashes, eczema, a lot of skin reactions. hip pain would increase 2 days after the injections.

There is so much damage to the hands.  There is still some function in them but very little. I would like to at least hold on to the function I have.  so just trying not to become any more damaged than i already am at this point. I feel like I am grasping at straws however.  there is talk of new meds coming but will they be in time to stop me from going in to stage 4 of the disease. can any of the meds do that is my concern.

Anyways, I am holding out hope.  will certainly let you know if there is any progress.

the apppt for the first infusion is next week. 

God bless.  Good luck with AP therapy.:)

Diane,

Thank you.  I hope so too. And I hope your insurance approves your medications.  Enbrel helped me the most so far.  A shame it didn't last.  I was really looking forward to returning back to my life.  I had to have teeth pulled while taking the orencia.  when they started it back, it never worked the same.  the docs say that had nothing to do with it.  I have new docs now. but I think it did.  it seems once you go off these biologics they don't work the same when re-starting them.  I don't know if the ra had to time to become stronger or what happens.  It just never worked the same which even when orencia worked it was only about 30% relief. but at that time, I wwas happy for that much. a little help is better than none for me.

I better give the fingers a rest, but thanks for replying to me Diane and everyone. 

Good luck, take care.

 

Shelly you are having a rough time , and you still seem very positive, good luck with the new med next week and hope it gives you some relief........keep us posted.........Annie
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