19 year old arthiritis

Anita13 · 10-08-2007, 06:53 AM

I have Rheumatoid Arthritis since 1988. I have been getting treatment from A.I.I.M.S. In the initial 3-4 years the medicines worked perfectly.After then the disease went quite out of control ,so much so that the simple daily chores have become a Herculean task for me.At present I am taking these medicines:1.Arava-10 mg 2.Methotrexate-7.5 mg 3. Folic Acid and Calcium. I was prescribed CLEFT (20mg)intermittently(3-4 attempts) during the last 3 years but had had to discontinue due to SGOT/SGPT rise & heavy rashes caused. Been taking Arava 10 mg for the last 2 mths.A new development has taken place now. My hemoglobin dipped as low as 7.5 & I have totally lost appetite & am suffering from mouth rashes. I got 1 unit of blood transfused during the last week. '
Another problem is that since the past7-8 yrs, my right knee gets swollen costantly. On being given injection Depomedrol 80 mg there is relief for only 2 mths after which the condition is back to worse. The doctor even recommended inj. Remicade but due to Montoo test being positive, could not take it. On taking the medication for treatment against T.B. germs my liver counts rose rapidly again due to which i could not continue this as well. I presently am taking Voveron 75 twice daily also in spite of which I cannot get rid of the morning stiffness which is unbearable,
Please advise me what I should do. My state is turning from bad to worse.
Thank you

Ronnied · 10-08-2007, 09:40 AM

You poor thing Anita. I am so sorry you have so many problems. I have had arthritis for 4 years so cant imagine how you feel after 19! I have taken a variety of drugs over these years, and all have had their own side effects. I started on Sulphasalzine and felt ill all the time, I then had methotrexate for quite some time until my liver count shot sky high and they took me off it in hospital, I had chest problems as well and my hair fell out. I then went on to leflunomide (arava) and that suited me well, only problem being caused me to have diarhoea 5-6 times a day. After sometime taken off of that because of high blood pressure, and at present I am on daily dose of prednisolone (steroids), trouble with that is to take a decent enough dose to help the joints it causes weight gain, moon face, and hot flushes. Bit of nightmare trying to find the right drugs to take and everyone is different. The coriscosteroid injections and prednisolone helped me more than anything, and out of the dmards - leflunomide (arava) was the best for me. I hope you find something to alleviate your symptoms as soon as possible. My advice has always been, if you feel good one day do what you can, if you wake and feel awful, get a good book, put your feet up and rest. Try to get a good nights sleep every night as well. We all push ourselves and suffer afterwards.

Ronnie

HannahSolo · 10-10-2007, 02:40 AM

I can definitely sympothize with what is going on.
I am 19 as well, and I have Systemic JRA.

When I was first diagnosed I actually was on Chemo for about 4-5 days which apparently helped ease me into remission, it only worked for a bit, and immediately I was on medication. I am still on medication, but I have the same problem with it not consistantly working for me.

Recently I decided to start looking into alternate methods of treatment. I started doing Tai Chi, a form of martial arts, and that has really helped me out. It is very light, and slow, so it doesn't cause pain. It took me a long time to get to this point, but I started meditating, and I learned how to "tune out" the pain. It isn't easy, but once you get the hang of it, it is really helpful.

My advice, is that when you start feeling the pain, it is really important to get up, maybe walk around a bit, and stretch. If you baby your joints when they hurt, they can lock up, and eventually you can lose most of your range of motion. It isn't comfortable, but it really is helpful.

These methods have helped me out alot, and while they haven't cleared the problem completely, I definitely think there is a connection between the mind and body. Try to stay positive!

Sean1985 · 10-15-2007, 06:53 PM

Hey guys!

I am a 4th year Industrial Design student doing a Thesis program at the Ontario College of Art and Design. Im focussing on Osteoarthritis and JRA as well. Mainly I am looking into dexterity issues (hand stregth and motor skills) mostly in the task of dressing (could be garment closure systems such as hooks, zippers, snaps buttons) but also other things like putting on shoes socks, etc... What I hope to achieve is to find a need with patients having JRA and design a helpful solution to present as my thesis and hopfully go somewhere with it.

I must appologize if I seem invasive, but I was wondering if I could ask you what sort of difficulties you encounter on a daily basis as it pertains to dressing or other dexterity related issues as well.

I want to get the perspective of younger people with the condition, having talked to older osteoarthritic patients...their needs are a lot different.

I am doing some research into areas where these patients have difficulties and also looking into products on the market, but it seems that most of the products available are just not attractive (soley functional but no design consideration) and I'm thinking that especially for a younger generation of people with JRA...what sort of things are out there in terms of assisting devices...and/or what areas.

If you guys can help me, I would really appreciate the insight and advice to help me with my project

Ronnied · 10-16-2007, 02:49 AM

I got the impression Anita has had arthritis for 19 years, not that she was 19, am I wrong?

Ronnie