|
|
User discussion about latest information about the drugs used for arthritis and related conditions.
next step
Posted by:
Cheryl Williams on
September 11, 2009 at
3:40PM EST
Hi all,
New to the site. diagnosed 15 months ago, currently on MTX and Humira, and waaay to much prednisone. I was on Enbrel for 9 months, and it quit working, I have been on Humira for 2 months but I have been going downhill since starting. Any suggestions on what has worked for you? I am a nurse, so I know about what is out there, just looking for first-hand accounts of biologics, subQ and infused. Also, for the past few months I have had HORRIBLE low back pain, which my rheumo. says is not related to the RA. Yeah, right. Any thoughts? I would love and appreciate any and all input/info by people who have been through this.
Also, I have tried to stay away from narcotics of any kind, but I may have to go in that direction. What works best for all of you?
Thanks very much
(13) Comments
|
Posted by: Anonymous on September 11, 2009 4:57PM EST
I have RA for 22 years now. I moved and lived in HI for 4 years. All my sypmtoms suddenly disappear. I'd say weather definitely played a role.
|
|
Do you have any other infections going on? How are your teeth? Any dental work that needs attention?
|
|
I also want to ask if your low back pain could be bladder/kidney infection? Get some cranberry juice from the health food store and drink up. Cheers!
|
|
Posted by: waltermiller on September 11, 2009 11:45PM EST
have had R.A. for 16yrs,started out on gold and predizone,went to enbrel and vicadin,had to up the enbrel tried humira with no luck,my r.a. factor stays around1100-1500.back on enbrel 50mg 1nc wkly,and low dose pain meds,and a healthy diet.i still have good and bad days.seem like the pain med lets me have more freedom to do things i would not normally b able to accomplish.would love to date again since i am a man i should b able to find a women since mostly females get R.A. than men.
|
|
Posted by: Linda on September 12, 2009 2:58AM EST
I would go to a good general doc and get a full blood work up, urine specimen done. You could have a hidden infection somewhere.. and that could be giving you a hard time. That happened to me.
I was on Enbrel for 8 months and it never did anything.. along with prednisone and mtx. Tried Humira which worked ok until I got an upper resp infection. Now I take Waaaay to much IV solumedrol and now Cimzia.
|
|
Posted by: Shelly on September 15, 2009 2:01PM EST
I am worried hearing that the Enbrel quit working. I take Hydroxycloriqiune, Enbrel and Vicadin. The Enbrel worked pretty well at first. (1 year on it) Now my CRP is going up and it seems that the only way I get things done and don't feel crappy is with the pain meds. I get low back pain with the RA. Those joints where your pelvic attaches to your legs, etc can sure enough be inflammed. If you don't have any other problems would you consider going RA doctor shopping? I know that there aren't alot out there and I lucked out to have such a good one. Good luck
|
|
Posted by: Eve Willner on September 19, 2009 10:02PM EST
Recently diagnosed with RA, on Humira,meth alittle bit of pred and Nsaids. Have really good days and really bad days, but the sed rate and crp is way down. I am no longer tired all the time and no longer need to sleep all the time. I still am dropping weight, even on the pred. I have no appetite most days and force myself to eat before I take the meds. I feel that the Humira is amazing so far I can feel it working within a few hours so I am a firm believer in better living thru chemistry. Driving is still painful as well as typing on a computer any thoughts...
|
|
Posted by: Denise on September 21, 2009 7:13PM EST
I am new to this site and am also searching for some much needed help to RA questions. But some answers to your questions. I also experience severe back pain and have been told I have degeneration in my lower back and am now using Hydrocodone 7.5/500 at least 2 tabs 4x /day and have been switched to oxycodone for the pain when it gets really bad and use a heating pad also. I am currently using Humira pen shots once /wk and mtx 8 per/wk and going up to 9. On plaquenil and relafin also cuz I also have fibromyalgia. The new thing i struggle with is sleeping 24/7 and losing weight for lack of appetite. the humira is really working as it gives me energy and seems to be finally keeping the pain at bay. but i just got over a terrible case of pneumonia that kept me close to going into the hospital. what is going to get me out of this darn bed and is it ever going to get better i was just diagnosed in 2008 i am 45.???? I hope my info helps.
|
|
Posted by: Eileen on September 29, 2009 11:27PM EST
I have had RA for 11 years and been through a lot of the meds. I was on Enbrel for 5 years it worked okay, then to humira. I did try Orencia infusion and that worked for me about 1 year. The last thing I tried was Rituxen. I have been sick since then. I am off from work to sick to work. It did not agree with me very well. I do have the lower back pain myself. My doctor says its the fibro! I am also taking Imuran twice a day. If you think about taking Rituxen check all the side effects. The other lady that took the Rituxen infusions had stomach problems after too. I myself lost 20 pounds can't keep my food in. I do not recomend the Rituxen. I hope this helps!
|
|
Posted by: brenda on September 30, 2009 2:02PM EST
I also have p and pa started with severe neck,shoulder and lower back pains 2 years ago and was finally diagnosied with anklosis spondialitis with can go along with pa have just taken my third injection of enbrel and have been on predinose and methotraxate for a year and a half. Talk to your dr about as there are also many web sites even looking at pa web sites as will come up good luck!
|
|
Posted by: Tara Colbert on October 7, 2009 11:14AM EST
Cheryl, My name is Tara and I've had RA for 6yrs now. I am 24, and last year enbrel quit working for me. Don't lose hope my dear! I switched to Orencia, it is an IV infusion I now get once a month and I feel 100 times better. I also still take 5 methotrexate a week but no more prednisone! Try to get off of that stuff it will mess you up (as you probably already know). If you need anything my email is bert2304@juno.com Tara
|
|
Posted by: Ron Windham on October 21, 2009 11:03AM EST
I have had RA since 11/2008, started out as PMR since 8/2006. I have tried Prednisone, Methrotrexate, Humira, Lodine, Folic Acid and Norco. Now I am taking MTX , Pred, Folic Acid, Enbrel. Lodine and Norco. Still not much change. I came down with Bronchitis a month ago and can't kick it. Just had a chest x-ray and everything looks good, but can't take my Enbrel because of the bronchitis infection. The Methrotrexate really saps my energy on Saturday from my Friday night dose. My Dr. won't let me stop. Has anyone had problems with MTX?
|
|
I got diag 2 yrs ago and on mtx to many steroids and alot of other I am on enbrell Had lower back pain and I lost gulbladder, apendix and right overy and lemph under right arm after the gull bladder and apendix and overy back pain went away they had sists in them
|
|