Hi, I’m new here. I’m 17 and have recently been diagnosed with arthritis. My rheumatologist did an MRI, blood test and stuff. She said that my MRI shows that I have some fluid in both my ankles. They have been perpetually swollen for 5 months plus. Anyway, I'm posting in the rheumatoid arthritis section because I'm not sure what type of arthritis I have. My rheumy said it's early stage seronegative arthritis but I guess it's too early to tell? Anyway I think it's RA as I have swelling in both ankles but is it JRA? I'm not sure about that too cause I'm slightly over the age range. I've read quite abit about RA and arthritis. My cousin used to have JRA when he was 9 but it went into complete remission for him. Anyway, knowing all the side effects of those anti-inflammatory drugs, I decided to stop them and try natural forms like fish oil and vitamin E. I've just started taking them, I've read about some of their success stories so I hope they would help. Anyone has a similar situation or anything to share?
Hiya Ispakles, welcome to AI.
I'm 19 and was diagnosed with RA last year. I'm on anti-imflammatories, DMARD's, painkillers and steroids (trying to get off the steroids). I admire you trying the natural approach to RA. Have you discussed it with your rheumatologist though? From what I have read you will need to take fish oil etc for a very long time before they even begin to make any difference to inflammation and joint damage. They may not slow or stop the joint damage that could occuring at all. The most damage is apparently done in the first 2 years of the disease so it is best to tackle the disease aggressively, in an attempt to prevent any damage.
What drugs did your rheumy want to put you on?
You will find lots of great advice and support here.
Hi and welcome to the board! You will find lots of info and lots of caring people.
I know the side effects of these drugs for ra really bites, but what scattered said about the first 2 years of ra is correct. Most of the time, rheumys will want to treat people your age very aggressively because it can throw you into a remission and a long lasting one at that.
My daughter is 12 and was just diagnosed with JRA. Her first rheumy appt. is the 23rd. She will be seeing my rheumy as he treats ages 13 and up. Most do not and only start seeing kids at the age of 16 and up where they consider you to be an adult with RA and not JRA. That has been my experience with the ra/jra thing. We will be treating my daughter pretty aggressively with the hopes of throwing her into a long term remission.
Look forward to hearing more from you!
Hi Ispakles and welcome, this is a really nice group of people with good ideas. Most of us have gone through all sorts of treatments/no treatment, and have come to the conclusion we NEED the super meds available. I take 3 kinds currently. I found fish oil was really hard to digest , I don't take it anymore. Good luck sorting this out as it can ruin you joints if you don't treat it. A good doctor will guide you through it....sarah in the west.Would there be great damage to my joints if I dont take them? According to my doc, my RF is 1/80 and everything seems quite normal except for something I forgot what. I dont feel much pain except occassionally. The swelling is what's bugging me. My ankles look perfectly normal in the morning when I wake up but as the day goes on, it starts to swell even with compression socks and ankle guards. Also, I'm starting to feel more 'clicking' sounds in my joints when I move them sometimes but no pain or swelling in them. Do you guys experience such symptoms too? Do you think I should continue taking those medication? Can my family doctor treat RA without having to go to a specialist?
You probably had cortisone injections in both of your ankles to try and help the inflammation to calm down. How long have you been pn the Mobic? I have a friend on it and it took about a month for her to see results from it. But it really is working very well.
I don't know if your family doc will treat your ra. Most here in the States will not do that and send us off to a rheumy. While I know it can be expensive, the MRI and all the other tests they run are necessary. They use them for diagnostic purposes and treatment purposes.
It sounds as if you have what they call sero negative ra. It is very common and many people here on the board are also sero-negative. The swelling that you have that goes on throughout the day sounds like typical ra. The clicking noise you hear is your joints telling you that there is something not right. I can't tell you whether or not there will be a lot of damage to your joints if you discontinue your meds and begin to treat yourself with natural herbs etc. Only time and xrays will tell that. Another therapy you may want to consider is AP therapy. Check out www.roadback.org There is a ton of great information there about AP. Sometimes people do natural therapy along with traditional therapy. All I can say about the side effects and risks of these meds is that even tho they are there....without my meds (mtx and humira) I would not be able to get out of bed in the morning and would be in a wheelchair. Most side effects from meds go away in about 2-3 weeks. The risks are very long term risks and there are people here that have been on mtx for a very long time and are doing just great without any side effects and none of the long term risks have shown themselves yet. Long term risks are risks and in all reality, the incidences are very low of getting any of them.
Only you and working along with your mom, can make the decision on what treatment is right for you. No matter which treatment options or options you decide to go with, you will still find mega support here on the board.
I've been on Morbic for about 2 weeks now. Did your friend manage to get rid of the inflammation totally? My ankles are swollen all the time, it has been like that for 5 months plus. I heard that you can remission periods for RA but this is just not happening to me and I'm getting quite frustrated and discouraged having to lift my legs up at the end of the day when I come home from school because it's swollen.
One more thing, does your friend have to take Morbic on long term?
Thanks guys for all the help.
Hi Lynn, I failed to wake up about the meds and didn't want to admit I HAD RA , so my little toes don't 'work' very well. The doc, I'm seeing now, who is young and understands me, said I should have gotten meds earlier to stop the 'erosion' of those joints. My fingers are stiff, especially the knuckles and one finger is crooked, so I'd say take the meds, but you and your mom must decide. This is a strange disease and the swelling sounds like exactly what I had/have in my feet (but I'm not sure), my feet feel like 'silly putty' and when I walk it hurts. ....unfortunately this disease attacks young people like you and some even younger, so you may want to talk it over with others here who have had JRA , there is a special forum even for Juveniles Rheumatoid Arthritis. Except for the swelling you 'can't see the damage' this dumb stuff does to you and I understand why you wouldn't want to take the drugs, but most of the time it takes a while to these 'special drugs' to work , sometimes weeks , so don't get discouraged.
It is never fun to take medications, but I think you may want to to protect your bones and joints? What do others say?
good luck, sarah
Hi Isparkes,
I am on Arcoxia 90mg and have been since before I was diagnosed. It took about a month to kick in, so maybe you weren't on it for long enough. It has never made all my swelling disappear (my hands have looked like small ballons for 9 months) but they are less swollen than they were.
How much damage is done to your joints depends on the severity of your disease. Inflammation causes joint damage so they key thing is to get that down as quickly as possible. I'm on a DMARD called sulfasalazine, which aims to prevent the damage occuring. Before that I was on Methotrexate but I had a bad reaction to that. DMARD's are scary drugs but the amount of monitering doctors do make sure you taking them safely and that they are doing you no harm is very reassuring.
Your GP may not treat your RA. My GP does all my blood tests and repeat prescriptions, but anything big that's related to my RA - like having a flare or needing to change meds - he refers me back to my rheumatologist. He can't prescribe DMARD's without hvaing the instructions etc from my rheumatologist.
Weighing up the risks about medication is a decision only you are your mom can make. I made the decision through talking with my GP, rheumatologist and parents and doing a lot of research on the internet and in the library. I decide to take the drugs because, having got RA at 19, I didn't want to look back in 15-20 years with bad joint deformities and damage and regret not taking them. That is a worst case senario but it is what spurred my decision. There are lots of options out there: as Gramma said AP therapy works wonders for some people.
Sorry for babbling a bit! I hope some of this helps. You will find lots of support here, no matter how you go about treating it.