Rheumatoid Arthritis Support Group
Rheumatoid arthritis is a chronic, inflammatory, multisystem, autoimmune disorder. It is a disabling and painful condition which can lead to substantial loss of mobility due to pain and joint destruction. The disease is also systemic in that it often also affects many extra-articular tissues throughout the body including the skin, blood vessels, heart, lungs, and...
hi all, i was just dx'd with ra on thursday. my journey to dx seems strange to me, and i'm unsure what to expect. i have an uncle, aunt, and 30 year old cousin with ra, all on my mother's side. i am 33yo who started a healthier lifestyle some nine months ago. dh and i drastically cut down our meat intake (twice a week, usually fish/chicken, sometimes a lean steak), have been juicing fruits and veg 3-4x a week, and have really cut a lot of processed foods out of our diet. we do still eat some things with labels, but most of the food we buy at the grocery store comes from the end aisles (produce/dairy).
about seven months ago i developed some moderate pain in my left wrist and last knuckles, closest to my fingernails. my gp gave me exercises to do for my wrist and said my knuckles may be some sort of nodule (buchanan's nodules? something like that). in july, i woke up one day with similar pain in my right wrist. i called my gp who referred me to an ortho. short story is the ortho took xrays and saw nothing. he advised i wear a brace for a month and come back. he actually said i may have broken my wrist and not known and it healed (really? come on.). i was a good girl and wore the brace and after a month it was no better - it was worse. i called a rheumy who did not suspect ra at first, but took blood tests and a full history. she called me back for another visit when my vitamin d was low and my inflammation levels were high. i am negative for rh factor and negative for something else (ccp? i don't have copies yet) but my inflammation was high enough that she put me on prednisone and ordered a vectra da test.
three weeks later she called me to come in for an ultrasound event - they had a specialist in from the midwest (i'm in new york) training the doctors how to use ultrasound to assist in ra diagnoses. she thought i'd be a good candidate. i went in and found out she was on the fence about it but was leaning toward ra because of my family history and symptoms. my vectra da score came back at 51 and the ultrasound showed... well, i don't know. but it was enough for her to feel confident in dx'ing me with ra and starting me immediately on methotrexate.
so now i have this rx and it's a chemo drug and i'm terrified. i knew ra was serious, but now i've learned more and realized how serious it is. i'm afraid of the side effects and losing my hair, but the pain is pretty effing bad. it's now my wrists, knuckles, hips, ankles, and most of my feet/toes. my neck hurts too, but i'm not sure if that's related. dr wants me on 15mg of methotrexate a week, also gave me folic acid. i'm starting a calcuim/vit d supp, as well as flaxseed-derived omega 3s. and i take a daily multivitamin and zinc to keep my immune system up (lol - that's a joke. i probably made it work too well).
i guess i'm just posting because i'm scared. mostly of losing my hair and being sick from the methotrexate. is 15mg a lot for a starting dose? dr said it wouldn't suppress my immune system as much as the other biologics, but it still will suppress it. how careful will i have to be?
any advice or tips re: taking medication, foods to add/avoid, etc. would be appreciated. thanks :)
about seven months ago i developed some moderate pain in my left wrist and last knuckles, closest to my fingernails. my gp gave me exercises to do for my wrist and said my knuckles may be some sort of nodule (buchanan's nodules? something like that). in july, i woke up one day with similar pain in my right wrist. i called my gp who referred me to an ortho. short story is the ortho took xrays and saw nothing. he advised i wear a brace for a month and come back. he actually said i may have broken my wrist and not known and it healed (really? come on.). i was a good girl and wore the brace and after a month it was no better - it was worse. i called a rheumy who did not suspect ra at first, but took blood tests and a full history. she called me back for another visit when my vitamin d was low and my inflammation levels were high. i am negative for rh factor and negative for something else (ccp? i don't have copies yet) but my inflammation was high enough that she put me on prednisone and ordered a vectra da test.
three weeks later she called me to come in for an ultrasound event - they had a specialist in from the midwest (i'm in new york) training the doctors how to use ultrasound to assist in ra diagnoses. she thought i'd be a good candidate. i went in and found out she was on the fence about it but was leaning toward ra because of my family history and symptoms. my vectra da score came back at 51 and the ultrasound showed... well, i don't know. but it was enough for her to feel confident in dx'ing me with ra and starting me immediately on methotrexate.
so now i have this rx and it's a chemo drug and i'm terrified. i knew ra was serious, but now i've learned more and realized how serious it is. i'm afraid of the side effects and losing my hair, but the pain is pretty effing bad. it's now my wrists, knuckles, hips, ankles, and most of my feet/toes. my neck hurts too, but i'm not sure if that's related. dr wants me on 15mg of methotrexate a week, also gave me folic acid. i'm starting a calcuim/vit d supp, as well as flaxseed-derived omega 3s. and i take a daily multivitamin and zinc to keep my immune system up (lol - that's a joke. i probably made it work too well).
i guess i'm just posting because i'm scared. mostly of losing my hair and being sick from the methotrexate. is 15mg a lot for a starting dose? dr said it wouldn't suppress my immune system as much as the other biologics, but it still will suppress it. how careful will i have to be?
any advice or tips re: taking medication, foods to add/avoid, etc. would be appreciated. thanks :)
Methotrexate seems to be your biggest concern. Rightly so, it's a powerful drug. It is one of the older cancer chemo drugs, still used for some things. People using it to treat cancer get a dose about 10x what we take, daily instead of weekly. Your hair may shed or thin a bit, but it's not going to fall out, and don't bother shopping for scarves, wigs, etc. I take it by injection, which I do myself, as it was bothering my stomach. 15 mg isn't the top dose- I think 25 is- but it isn't tiny, either. Folic acid will help with the side effects of the MTX.
MTX works slowly and subtly, where the prednisone probably made a big difference within a day or two. Are you still on prednisone? Some doctors prescribe a smaller dose long term, others give it in bursts, a high dose then lower right away, off it quickly.
You got diagnosed pretty quickly, which is good. You have a chance to get going with treatment and really slow down the progression of the disease. It sounds like you have a good rheumatologist.
Many people with autoimmune diseases, a club you have just joined, have remarkably low vitamin D levels. No one knows why, but there is a link. I have had to take a prescription-strength supplement to get my levels normalized.
You ask about food. Nothing you did or didn't eat caused this, and nothing you do or don't eat will make it go away. A good. healthy diet will definitely be good for your health in the long run, and it sounds like you and your husband are eating well. Same with supplements: there is nothing that is scientifically proven to help with RA, although many people swear by this or that.
You seem to grasp the basic concept here: the treatments are pretty effing bad, but the disease left untreated is worse. Now it's just trial and error to see what works best with the least side effects.
Welcome, and do what the rest of us do here: ask questions, answer questions, gripe occasionally, let others know how our fights are progressing, share information, talk about the fears and frustrations our partners, friends, relatives, heck, even our doctors, don't understand. It's a great group.
You might want to think about NOT taking the zinc to keep you immune system up. Your immune system is overactive. I am now on biologics to help suppress my immune system.
Altoclef is right, at least for me my Vit D levels were in the dumpster. It has taken me months to get my levels up, and now I am taking 5,000 units, daily, to keep them up.
Methotrexate, by itself, did not give me any relief. Once biologics were added, the relief was quick.
My eating habits have changed. Not that it has helped any, but eating healthy can never hurt. I eat organic as much as possible. I make fresh juice.
Good luck.
i was told by my gp and rheumy that low vitamin d is very common in the northeast. my level is supposed to be 30, and it's 16. @2leftfeet - i love juicing. dh finally convinced me to add kale (which i really really do not like) but we found that putting in a half lemon helps mask the taste. i also try to buy organic and local when i can.
the immune suppression is a big deal to me. i am in the helping field so (once i get a job) i'll be dealing with people on a daily basis. i also have three cats and am constantly getting scratched :( i'll have to be very careful about playing with them and handling them. and i *was* a body piercer, but that's probably not the best idea anymore. i also am in the middle of numerous tattoos that now my artist and i are not sure when/if/how to finish. sigh.
i'll be taking my first dose after 'the walking dead' tonight and heading to bed. i'm glad i found this site so early on - what a supportive group :)
I have been taking MTX for four years at the highest dose of (for RA)25mg and have had no real side effects from it. If you click on GROUPS (top RH of this page and then click TIPS for taking Methotrexate, you will find good information.
I'd stop the Zinc, also don't take a Vitamin pill which has Folic Acid in it on the day you take MTX. Methotrexate may take several weeks to kick in.
Basically, the immune system goes haywire and sees the body as the enemy and begins an attack to eradicate the body itself. In short, your body is eating itself. Hence the meds to suppress the immune system and make it act normally.
As far as avoiding infections, washing hands becomes very important and also staying away from people you know have colds, flu etc. I also steer away from crowds in the flu season whenever possible.
It is perfectly normal to be scared. I think we've all been there.
Hugs
I've been on methotrexate since January of this year, 15 mgs., and no side effects at all. My doc did start me slowly and build up to the 15 mgs, so if you do have issues, you could ask to build up the dosage gradually. As others have said, remember not to take your folic acid on the day you take the MTX; they counteract each other.
It took about 8 weeks or so for me, but the MTX worked. The achy pain in my hands, knees, hips, and toes gradually went away. After 10 months now, all I have is very mild occasional stiffness.
I hope your path brings you relief quickly.
I then came home and started reading..... and the more i read the more terrified i became. I was engulfed in fear... if the disease AND the drugs. I now after 4 years have started to realize that the drugs... even though tv makes them sounds so horrible, aren't near as deadly as the disease.... and RA can be controlled and life can go on.
My life is different.... is a lot less complicated. I've had to change jobs. I have a love hate relationship with RA now....
But i wished i wld have found this group and the encouragement long before i did.
You will be supported here.... we all relate to the fear and many questions that RA brings. You will probably go thru a brief period.... like a death. I did. I had to grieve my old life and then create a new normal. I've found out there are a lot of things i can still do with RA.... things i truly enjoyed.
Take care and welcome. Xo Sun
okay, re: kale, my hubby is really big on superfoods and insists on the kale. it is evil - and i now understand why congress acts the way they do if they eat it regularly ;)
so it's been about 12 hours since my first mtx dose and i feel pretty much the same. i took all my vitamins and supplements this morning and have read through all the stories you all have shared.
RASally - i haven't added the alternative medicine options yet because i'm just not sure what to look for yet. right now dh and i are researching and focusing on foods/vitamins/minerals to add or avoid to help with inflammation and possible side effects of the mtx. i'd never heard of leaky gut syndrome, but i used to have a lot of strange gi issues until i had my abusive gallbladder removed last year - so much better now! i'm considering looking into acupuncture/acupressure as an alternative treatment, but do not have an alternative health practitioner on my team.... i didn't think about having a 'team' but i see the importance of it now. i already have a physical scheduled with my gp in about four weeks, and i think i'll start looking for an alt. health practitioner because you are right - alternative health is important to me because i feel it's important to treat the entire person, not just the disease. i had excellent results with acupuncture years ago after a car accident.