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terraphantm
New Member


Date Joined Nov 2011
Total Posts : 11
   Posted 11/25/2011 4:38 AM (GMT -6)   
Hello, I've just been having another one of those restless nights where the pain just won't go away, and I came upon these forums in my late night browsing

Where to start... I'm currently 20 years old and have been experiencing joint pains for a little more than 2 years now. At first it was minor enough - just some shoulder and hand pain, and things like NSAIDs were able to bring it to a tolerable level. I figured maybe I just injured myself playing hockey with my friends. But the pain just kept persisting and getting worse. My family history is very strong for autoimmune disease, so that's where they started looking. Well bloodwork hasn't really resulted in anything conclusive, but for now the working diagnosis is that I've got a seronegative Rheumatoid Arthritis. The disease has been fairly aggressive for the most part - there was a fairly extended period where I would get back pain that made it extremely difficult to walk, I couldn't climb stairs at all, driving became an issue, and I just had a hard time doing things that I used to take for granted. I'm currently taking a break from school since during my last semester my ability to attend classes was severely compromised (had I not had some very excellent and understanding professors, I probably would've failed... thankfully they were all great).

As far as medications go... My primary care phsyician has been prescribing me Morphine for a while now (90mg Avinza, and 15mg Morphine Sulfate IR PRN). My rheumatologist has prescribed all sorts of medications --I've been on steroids for quite a while now, I'm on methotrexate, I cycle through some sort of NSAID every now and then, and I've gone through many different types of immunosuppressive drugs such as Humira and Enbrel.

Anyway my treatments have ranged from moderately helpful to no effect at all. The steroids do help with the inflammation, but I've gotten so many other side effects despite limiting my dose. I've gained 60 lbs in a very short period of time, I formed really dark stretch marks all over my body, and I generally feel miserable. The other immunosuppressants have been hit or miss. Typically they'd work for a couple months, and then everything would start coming back.

My latest immunosuppressant is a drug called Remicade. After the initial loading dose, it's administered every 4-6 weeks. I'm at 7.5mg/kg (which from what I understand is a higher dose than what most people start with). Honestly, so far this seems to have the most hope. I don't want to jinx it, but I don't feel nearly as miserable as I did say... 6 months ago. I'm walking without a cane again, and I'm able to climb stairs with less difficulty. It has improved to the point where I am going back to school (keeping my load light though). I do hope to be off the steroids completely, at which point I will work with my doctor on weening me off the narcotics. The narcotics never had much of an adverse effect on me, but I feel that the fewer medications I need, the better. If remicade works as well as they hope, my disease should hopefully go into remission.. at which point maybe I can get some of my youth back.

With that said, I definitely am not at that remission point though - I still wake up with a few hours of stiffness, I definitely have some days where it feels like every inch of my body is burning... but all we can do is hope, right? According to my father (who is also a doctor), there are some exciting medications for autoimmune disorders that should be approved within the next year or so, so the outlook might become a lot better soon. Here's hoping!


Anyway sorry for the long post. Summary: I've got what is believed to be Rheumatoid Arthritis. I'm on steroids, narcotics, immunosuppression drugs. Generally treatments haven't been very helpful, but the very latest is showing a glimmer of hope.

Chutz
Forum Moderator


Date Joined Jan 2005
Total Posts : 9255
   Posted 11/25/2011 1:58 PM (GMT -6)   
Hi Terra~~~

And welcome to the Chronic Pain forum family! This is a wonderful group of folks who truly do understand what you're going through since we've all 'been there' in some form or another. You're fortunate to have good health care access and with Dad being a Doc you most likely won't get jerked around by the medical profession.

I'm sure sorry that you are suffering so much from Rheumatoid arthritis. That has to be miserable. But the news your Dad has about new medications coming alone is so very encouraging...for you and for others in pain too.

Keep your eyes focused on that "Glimmer of Hope'. Most days it will keep you going and on rare occasion when you're having a terrible day that Glimmer might be all you have to hold onto...EXCEPT for Us. We always stick together and help out no matter what. So grab hold and we'll take this ride together...OK?

Hugs,
Chutz
Moderator on the Fibromyalgia and Chronic Pain forums
~*~*~*~*~*~*~
Fibromyalgia, IDDM. UC, , Osteoarthritis and others slowly meandering their way through.
~~~~~
An investment in knowledge pays the best interest...Benjamin Franklin

stingray
Regular Member


Date Joined Oct 2009
Total Posts : 175
   Posted 11/25/2011 2:13 PM (GMT -6)   
Hi Terra...
Just wanted to welcome you to the site and agree with Chutz that you'll find this site to be not only a wealth of information but a great place to meet other people who are suffering the same problems and other problems. Although the forums and chat rooms are divided into different diseases you'll find that there really aren't any barriers between us all. So if you feel up to trying the chat, just jump in wherever you find people. Everyone here understands pain and it's struggles in whatever form it comes in. So again, welcome and hope to see you around. Take care..all the best.
Stingray
Chronic Back Pain, Anxiety, A little Depression, Left foot problems...foot growing in length and big toe growing out sideways, Osteoporosis,11 surgeries total..right foot twice, right knee 3 times, right elbow, throat/neck, spinal fusion, left elbow, left knee, currently deciding on whether to have surgery on left foot.
Meds: Oxycodone, Oxycontin, Clonazapam
Birthday July 18th

sos007
Veteran Member


Date Joined Nov 2011
Total Posts : 615
   Posted 11/25/2011 5:38 PM (GMT -6)   
Hi Terra...Welcome, What can I say that Chutz and Stringray hasn't, really can not think of a thing...lol..However I would like to wish you luck with your new plan an meds. Keep us all posted as we are all eager to hear of any new treatment an try it ourselves.


Take care, Amy



chronic pain(nerve), fibro, and mild depression

momtofourangels
Veteran Member


Date Joined Apr 2010
Total Posts : 2265
   Posted 11/25/2011 6:31 PM (GMT -6)   
Hi Tera Welcome to our chronic pain group. I'm glad you found us, but I'm really sorry you're having to go thru such pain at such an early age. I wish you well.

hugs
Loretta
Dx: osteoarthritis, bursitis in left hip, Osteoarthrits in right hip, compression fracture in thoracic spine due to falling on frozen ground March 2001 , ddd, spinal stenosis, bone spurs, osteoarthritis in spine, osteoarthritis in both knees
Meds: Fentanyl patch, oxycodone, otc: BenGay, Tylenol Arthritis on occasion

Betsey Ross
Veteran Member


Date Joined Mar 2011
Total Posts : 1056
   Posted 11/26/2011 7:32 PM (GMT -6)   
Hello Terra

Welcome to our forum. The ppl here are very compassonate and helpful.

Keep us posted about your health
crushed lower knee and vertical fx of tibia/external fixator placed/plates and screws and tried to place big pieces of cartiledge under knee cap/tremendous pain in affected leg continously without improving/allergic to metal in left leg/leg isnt straight/ metal removed in July//then total knee replacement/straighten out leg/more phsyxical therapy/take oxycontin,flexeril,cymbalta,vicadin for BT

Blessedx8
Veteran Member


Date Joined Aug 2008
Total Posts : 3193
   Posted 11/26/2011 11:27 PM (GMT -6)   
Hi Terra,

I, too, just want to welcome you to the board. I came here over three years ago.... when my pain was at its worst.... and I found the most amazing people that truly understood. I hope you will find the same.

Feel free to jump on in... answering posts... or starting new threads. Please settle and - welcome to our little place in the world.

Hugs. --Tina

terraphantm
New Member


Date Joined Nov 2011
Total Posts : 11
   Posted 11/28/2011 12:14 AM (GMT -6)   
Thanks for the kind words everyone! I really am glad to have found this forum - really helps the healing process to have a support group, especially when others can understand where you're coming from. I hope we can all get through our issues together :)

Chartreux
Veteran Member


Date Joined Aug 2006
Total Posts : 9664
   Posted 11/28/2011 10:57 AM (GMT -6)   
I too have the dx of sero negative arthritis, it took a mri to show the damage, I'm on
Methotrexate injections for it and have to get infusions of saline to help with the dryness
the methotrexate causes...you will have your good days, I didn't realize how much
the mtx was helping til doctor took me off it, to make sure that was causing the dryness,
you'd be amazed how it's helping even thou you can't feel it....for me I find a moist heating
pad to help the most, especially for my lower back...I'm glad to hear your not needing your cane, I keep mine
handy and use it...and I have a quad point cane for bad days and I hope you keep on going in College,
you will get your diploma and it will be worth the struggle to get it...Many many well wishes in hopes
of getting low pain days...keep us posted as we do care...
**********************************************
* So many dx's I could write a book* "It would be nice if we could use the edit button in real life"...
********>^..^<********>^..^<*******
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