Sat, Nov 21, 2009 Hello ! | Sign Out | Account Settings |
RA Connect is brought to you in part by an unrestricted grant from Abbott Laboratories.

Rate This Blog
0 rating(s)
Latest Entries
Loading...
Search:
Ask a Question
Have a question about the AF Community? Get answers from our community members or our community administrator.
February 2009
Thursday February 26, 2009
Looking for adults who have had JRA since childhood.
Posted by: Jamie Downs at 4:10PM EST on February 26, 2009

Hello my name is Jamie and I've been suffering with JRA since I was 8 years old. Being now 32 I've had a long a ruff life living in pain . My grandma told me about this web sight and I thought what a great chance for me to talk to others who also have this disease. I have meet alot of women around my age that are just now being diagnosed. But I would really love to find someone who has had this as a child like me. 

Also I've been unable to recieve medical insurance as well. My family are going into so much dept paying for medication and Dr.appt. but it's nessisary for me to have my meds and see my DR. I just don't know what else to do.  If anyone out there has any advise for me or any kind words,They would be most appriciated. Thanks so much for your time & god bless, Jamie

Wednesday February 25, 2009
Frustrated and confused....
Posted by: Robin Aguirre at 7:33PM EST on February 25, 2009

    My name is Robin. I am 35 years old and have been dealing w/ back pain for the past 3 years. Since my first child. At first I was told it was weak low back muscles. Then I was tested and was told I have a herniated disc L3,L4 area. Next I was then told that I have a mild to moderate case of degenerative arthritis. Now I am confused...it seems as I get older the worse my symptoms get. I have talked to my doctor about perhaps being tested for Fibromyalgia. My mother has this and Osteoarthritis as well. Who knows is it hereditary???I bought the whole getting older with kids bit. But now..my joints ache and I have trouble sleeping. No-scratch that. I have trouble staying asleep. I fall to sleep and wake up every hour or two just to get comfortable and can't get back to sleep. My doctor says there is no such thing as Fibromyalgia. He says that is what doctors say when there is no other label to put on you.  And there is no REAL tx for it. My mother tends to disagree. Needless to say I am confused and frustrated. It has been suggested I go see a specialist for FM and RA.? Do I need a referral for that? This has been going on for a while now but I still don't have any answers.Has anyone else been here? Some days I feel good. Other days I wake up and feel like I am 35 going on 95. Any help would be greatly appreciated as well as any prayers.

 

Sunday February 22, 2009
Rash
Posted by: Barbara Pettus at 6:26PM EST on February 22, 2009
I am 44 yrs old and was diagnosed with RA three years ago.  I have been taking 200 mg of Plaquniel 2 x's a day.  This has worked pretty well for me and my Rheumy says I have mild RA.  I have recently developed a rash on my elbows, back and breast.  After trying so many different things, a steroid cream seems to be helping.  Does anyone know if this very itchy rash is related to RA?
Thursday February 19, 2009
New and confused
Posted by: Rachel Cook at 7:54PM EST on February 19, 2009
Hi.  I am 24 and have had Fibromyalgia for over 3 years, then a recent MRI series to look for additional causes of my worsening pain, weakness, etc. showed that I have arthritis in my cervical, thoracic (sp?), AND lumber spine.  There's just so much out there on the Internet that I'm both overwhelmed and unable to find exactly what I'm looking for...  I can't find anything about having arthririts throughout your entire spine.  How bad does it get before surgery is necessary?  I'm much younger than most people with this amount of arthritis- is there any way to know how much worse it will get and how quickly?  I just don't know what to do or where to start.  I'm having an EMG/NCS to check for entraped ro pinched nerves, peripheral neuropathy, muscle diseases, etc.

 

Between the Fibromyalgia and the arthritis, I have a lot of trouble walking on my own.  The pain and weakness from both is bad enough, but the Fibromyalgia causes me to randomly have dizzy spells or lightheadedness.  These days I don't go anywhere but work unless I have someone to go with me.  I've tried using a cane, but the ain and weakness in my arms makes it nearly impossible.  I have been told on numerous occasions that a service dog would be a good anser for this problem, but my  mother says (she works in the medical field) that she doesn't think I'm 'to that point yet'.  How do you know?  How bad do you let it get before something like that is a reasonable solution?  Does anyone on here have a service dog?

 

I'm sorry this is kind of long... I just feel very lost.


Glucosamine Chondroitin
Posted by: Carolyn Gaylor at 1:56PM EST on February 19, 2009

I have had RA for 5+ years and suffer mainly in my hands and feet with stiffness, pain and inflamation.  My major meds are methotrexate, prednisone and remicade infusions.  Has anyone ever had any success with Glucosamine ?

 

Sunday February 15, 2009
What are the symptoms of orencia withdrawal?
Posted by: Cheryl Rivers at 3:50PM EST on February 15, 2009
Due to insurance problems I have  not had my orencia schedule has been messed up. I haven't had an infusion in 8 weeks and feel pretty sick. Not only am I having joint pain, bursitis, a flare-up of my spondylitis but also difficulty sleeping. Has anyone heard of hoarseness as a withdrawal symptom?  Thanks. 
Saturday February 14, 2009
5 Loxin for osteoarthritis of the hip
Posted by: Loretta Frazer at 2:34PM EST on February 14, 2009
I have been reading that 5 loxin is an excellent anti-inflammatory.  Some people with knee osteoarthritis report good results from it.  I have severe osteoarthritis of my hips.  Has anyone with hip osteoarthritis tried 5 loxin, and what were your results?
Gluten Free Vegan
Posted by: Christina Marino at 12:47PM EST on February 14, 2009
I have read recently that a gluten-free vegan diet has shown improvements in people with RA.  I am 35 and have had RA for almost 9 years, and have been on many medications.  I currently take prednisone daily and remicade infusions every six weeks.  I have been a vegetarian for years and exercise regulary, including hiking, biking, yoga, and martial arts.  I want nothing more than to reduce my medication dependence, and just started the gluten-free vegan diet.  I am hoping someone can offer advice on this, and let me know how long it took for them to see improvements.  Thanks!  :)
Tuesday February 10, 2009
Looking to connect with young adults in the twin cities, Minnesota area
Posted by: Jenna Austin at 4:14PM EST on February 10, 2009

I have had JRA for 25+ years and have had 5 joint replacements.  I am looking to connect with any young adults in the twin cities, Minnesota area.  I have been married for over 6 years and have a 3 and a half year old daughter which can be extremely challenging with arthritis. 

Also, if anyone wants to ask me any questions feel free to post something.  I have been through a lot of experiences with my disease.  I was one of the first people with JRA to take Enbrel and I am still on it.  With the help of Enbrel, the joint replacements, and the drive to get better, I have become someone new.  I was wheelchair bound from about 6th grade up but my arthritis got a lot worse by the time I reached high school. 

I had my first joint replacements when I was 17 years old.  I graduated high school a semester early to have one of my hips replaced and then a week later both of my knees.  Six months after my surgeries I was in college.  I got slightly better through college although still mostly wheelchair bound and on crutches when walking.  My motivation came after college when I really wanted to be on my own.  I ditched the crutches and just stopped using my wheelchair.  I really pushed myself...maybe too hard.   In the end, I am happy with the outcome of everything and would have honestly not made it if it were not for my orthopaedic surgeon.  Mayo Clinic is so awesome!  I see a D.O. Rheumaologist now and he is ok although most doctors just don't understand the day to day struggles with arthritis.

Monday February 9, 2009
Orencia
Posted by: Sandy Greene at 3:21PM EST on February 9, 2009
Wanted feedback on Orencia.My 16 year old daughter will have first infusion this week & would like to hear from someone who has tried this. Failed therapy with Enbrel & Methotrexate.
Sunday February 8, 2009
Rookie mom needs help
Posted by: rebecca daly at 11:47PM EST on February 8, 2009
Hi,

I am the mom of a 13 year old boy recently diagnosed with
mixed connective tissue disease.  I am looking for message boards,forums or blogs where I can connect with other moms who are living with this disorder.  Thanks for being here and thanks for your help.

Becca.
Biologics/Weight
Posted by: Angela McCarron at 11:45PM EST on February 8, 2009

Well after 9 years of pain & suffering I am finally going tomorrow for final approval to start Biologics. I have RA in 36 joints with the most severity being wrists and hands.

Has anyone tried more than one Biologic? Which one has the least side effects? Any recommendations on which one is better? I am leaning towards Enbrel.

Over the last 2 years I have gained 60 pounds and am now a whopping 210 pounds. Because of the Arthiritis in my feet, knees, ankles, wrists, shoulders and hands I have found it nearly impossible to exercise with any amount of repetition without ending in severe pain the following day. I know the weight gain is making the pain worse but I am stuck in a viscious circle. Any ideas on weight loss solutions???

Saturday February 7, 2009
Looking for Jenna Glass
Posted by: Jenna Austin at 2:48PM EST on February 7, 2009

I am looking for someone named Jenna Glass who used to work for the Arthritis Foundation and I met at one of the national conferences a long time ago.  If anyone knows how to contact her please let me know.  My email is jennamay1@hotmail.com.

Thanks!

Sunday February 1, 2009
Enbrel
Posted by: Terri Hardin at 6:53AM EST on February 1, 2009
I have been on Enbrel now for 3 months. So far it has worked great for me. My question is that when I give the shots anywhere but my stomach area, the area get real red (about the size of a small grapefruit) and itch terrible. On my arms I always get a huge bruise. I have noticed that on legs after the redness goes away in about a week the skin is kinda discolored. Sometimes it goes away but I have one spot that has not gone away. Will this happen all the time? I am taking 25mg twice a week. I was on 50mg once weekly the first month but it was too much for as the next morning I started shaking and couldn't quit till I took a Benadryl. The shots in the stomach area don't hurt but the legs and arms sting alot. I feel so much better now that I am taking the shots. My Rheumy doctor is trying to get me off Pred. and he has lowered my MTX to 5 a week. I am guessing that when I go back in March he will lower it again. He would like me to be off the Pred. when I go see him then. Does anyone know how long you can take Enbrel? Terri