I am sorry you are feeling overwhelmed. The meds do have side effects but for most of us the relief from pain, swelling, etc is worth it. The most important part is to stop or slow down the damage RA causes to the joints. I have neck and shoulder pain along with the hips, hands, feet, ankles. I am still hoping to find something that will keep it under control somewhat.
Do you have fatigue?
All of these things are part of RA. Tell your sister that diet has little effect on RA. It may help regular osteoarthritis but RA is the body attacking itself. It is more of an autoimmune disease.
MTX is one of the drugs with the lowest amount of side effects. Your rheumy will still want to do blood tests every 3 months or so.
Hang in there. Most of us were in denial at first .

I've been through a lot of the same things you're describing. My blood work doesn't support RA (except for the inflammation) and I'm not wild about taking the drug she has me on if it's not even RA.
I do, however, have the swollen red joints in hands, ankles, toes, and sometimes knees. One jaw is bad too~ doc says maybe tmj and dentist says "no".
Mine has finally decided "inflammatory arthritis" and I'm trying to deal with the uncertainty. I'm not sure if it helps or not, but my doc did say it's a lot of guess and check work to figure it out. Very hard to diagnose is blood work doesn't support it.
I've been (and still am at times) where you are with the uncertainty and the worry about the meds. Please give the drug a chance and see how you do. I didn't want to go on anything either, but did try it in May of last year and felt better. I decided to cut it in half (since I wasn't in so much pain and thought I likely didn't even have RA anyway) last month and had a flare- and a fatigue episode so started right back on full dosage.
Not sure if this helps at all, but know many of us go through this. I would also ask if you have the fatigue? It's an odd sort of tired that's hard to explain but it's kind of like hitting the wall and just no way to keep going.
Best of luck and hope things get figure out! S

I do have fatigue but since I've been dealing with this for years, it seems almost "normal" to have fatigue, if that makes any sense? I also have had Hashimoto's for many decades, which comes with fatigue of it's own. I'm also not a busy type, but rather like reading, gardening, sewing, etc.. I just don't feel what I would consider extreme fatigue.

I am definitely giving the MTX a chance, but I just wish I didn't feel so afraid of it. I'm hoping the MTX stops any damage and helps to ease the neck and shoulder pain, eventually. Most of the pain I've experienced seems tolerable, except in December when I had to use a walker and wheelchair, due to the hip pain. The walker increased the neck and shoulder pain. That was when I experienced what I consider to be high pain levels.

It helps to know that MTX has the lowest amount of side effects. Thank you for that information. I am trying to view it as a positive thing but the information out there can make a person negative, easily.

The rheumatologist is doing labs every 4 weeks for now, so that makes me feel more comfortable, too.

I have told my sister, but she finds articles on the internet that say otherwise and she keeps insisting. I think my diet is decent. I like veggies a lot, and I enjoy most meat and fruits. I did a gluten free trial years ago at the suggestion of my doctor, because I was having daily stomach issues. I have remained gluten free because I felt so much better within days and I haven't really had stomach issues since. I don't really eat much sugar, other than fruit or local honey on occasion. I eat some grains, but not many. So, overall, I consider my diet to be good, so her nagging isn't helpful.

I think I must be in denial, since I have a good doctor who really seems to know what she is doing. I am just an impatient person when it comes to this sort of thing. I like concrete answers and this seems anything but to me.
Again, thanks for letting me share my thoughts. It helps a lot to share and hear of others experiences.

Since you know your Rheum is good, you are in good hands. It could be that your RA was caught early enough that serious damage can be delayed for a long time. My mother, a 89 year old retired nurse, has NOTHING good to say about any of the meds I am on, so I don't discuss any of my treatments with her.

I think most of us have tried the 'diet' thing, without any relief. But, eating healthy is never a bad idea. However, the idea of drinking apple cider vinegar is not something I would ever want to do! LOL.

I do have osteo arthritis, in addition to RA, Compared to many here, I am in a good place. I have very few flares, which I am very grateful for. My level of fatigue is not terrible, but most days I do take a "close my eyes" break for an hour or two most afternoons. My RA was caught early. My Rheumatologist is agressive in treatment, which is one of the reasons I think I am doing so well.yes, the drugs can be dangerous, but so can driving on freeways. I quit smoking in 2006, not so much for health reasons, but because of cost. Knowing I could get lung cancer did not stop me from smoking. Cost did. Aspirin bottles have long list of side effects. Even drinking water in some areas is not a good thing.

listen print this and give it to your sister

I was vegan for 6 years - it doesn't heal a disease, period, end of discussion. stop reading any of the yelling doctors who yell over each other (you know paleo versus vegan versus mediterranean versus what the hell)

i added some fish this year because i was sick of tofu. so i'm a fishcaterian....or whatever

diet is important medically insofar as it may be nice to stay in a good body mass index for your joints, and it might be nice to have a good lipid profile because all these ra meds will say hello to your liver and it might be nice to treat your body nice in terms of additional toxins (smoke, drugs, sex, rock and roll). well not the last two.

don't listen to any snake oil pronouncements and just blow your sister off and call a buddy who will ask you "what can I do to help" NOT tell you nonsense, OK?

pred sucks, for SOME folks and I am one of them. You do NOT have to take pred. go into the rheumie and tell her why you do not want to. they give folks a pat on the back that refuse pred they don't put them in the prednisone stockade for refusing. so refuse. and then taper. not every one of us has pred in our arsenal as a daily regime. many of us used it initially as a poor man's diagnosis, or use it for bad flares in a time warranted taper, or use it for something else (like my pneumonias).

next up get a good book from amazon on RA. i have used ones. if you want mine, write off list.

you have the disease for the rest of your life. it's chronic. methotrexate is just a standard bearer DMARD (disease modifying anti rheumatic drug) and it is used first almost most of the time)

I am on it. I have been on it off and on for years. i think it has been used for over 50 years. it works for a lot of folks. you can go on and off methotrexate (it does not need a taper) which I do a lot due to my crappy lungs (which were crappy long before RA).

you are sero positive (in your blood). there is NO one presentation for RA. your rheum is thinking of trying to get ahead of deformities, ulnar deviations, further developments for you.

Methotrexate is ho hum and the standard first let's try this dmard.

Read as much as you can from reputable sources (adopt RA sally on this site ha ha) and beat your sister and "well meaning" friends before they start their stupid (sorry) diatribes.

you have an auto immune disease. period.

then move on to another topic.

operate from your position of power.

vent anytime

depot

also, you might want to consult Alto on this site about petting dogs while ingesting some kind of whiskey. she can give you the advance tips.

depot

Looking back at the first signs of RA I didn't have the A typical swelling either. Elbow would freeze up, neck problems then slowly my hands, then feet on so on.
If you are unsure then perhaps a second opinion.
The meds cause a lot of apprehension.
Sounds like you need more confirmation for peace of mind.
There's nothing wrong with that & I can see your point.
A word of caution RA can hit hard with little to no warning.
For example with in approx one month I watched my feet deform.
After a couple days of aching woke up to discover I could not walk without help with my hip. Next day I was using a walker. With help of injections I was able to walk on my own.
I guess what I'm saying is don't delay seeking what ever it takes to confirm or rule out RA.
Preventative care is extremely important.
Those are the concerns your sister does not understand.
Sadly it's a very misunderstood disease.
With that said your doubts are understandable.
Be your own advocate & get another opinion if need be.
Whatever it takes.
Good luck
Sammy

Listen to "depotblue"!!! Re-read it several times if you have to. And YES print it out & give it to your sister! Straight forward reply.

Awesome response DP!

Thank you all so much! My anxiety level is greatly reduced since reading and re-reading all of your responses. I don't feel so overwhelmed anymore. I will print out depotblue's post and pass it on to my sister.

You are all awesome! Thanks, again :)

You've gotten great answers so far, but I just wanted to put my two cents in. I don't get red swollen joints either; my inflammation seems to be systemwide. I get joint pain,but not swelling, and lots of fatigue and "malaise".

I have a very sweet friend at my office who I stopped talking to because she won't let up about "natural" ways to handle my RA every time I talk to her. This is a woman who has Multiple Sclerosis and doesn't want to take meds. She avoids going to the Doctor and having MRIs, because every time she gets an MRI it shows more brain lesions and the doctors give her a hard time about not taking meds. If I had brain lesions, I would do whatever the Dr. told me to do out of sheer terror, but she believes her natural method involving certain foods, supplements, etc. is handling her illness just fine.

Maybe I can help. I'm Jen and I've been battling Ra since 1977 but it is a very rare form so no one actually knew it was RA until 2005. I lost a lot of years when I needed treatment but now, my doc is going full steam ahead.

I am not only sero-negative(no specific tests for Ra are positive) but it hit my tendons and bursas, almost freezing my body in place. It didn't hit any joints until 2005. But my doc took a chance in 2002 and started me on Plaquenil. My response was so wonderful, he speculated that I had one of these weird and rare presentations of Ra and 3 years later, he confirmed it. I am the stuff of rheumatological conferences.

But I've seen what RA can do to the human body and I will take whatever they give me to NEVER go there again.

As for methotrexate....don't be afraid. There was a wonderful documentary on PBS last year called The Emperor of All Maladies. It was about how far cancer treatment has come. Did you know that a form of methotrexate was the first chemotherapy and saved many children who usually died of leukemia? MTX is still a mainstay drug of cancer treatment and when you read all the bad stuff, it's the amounts used for cancer that you are reading.

And apple cider vinegar will not help and neither will raw red potato juice. Don't help cancer either. Don't listen to those who haven't a clue. Would you let your sister do surgery on you? Then why let her tell you how to manage your illness? Tell her that when she gets RA she can treat hers with apple cider vinegar and see if it helps.

The MTX we take for RA is a fraction of what they use for cancer. It was first approved for Ra in 1983 and was tested for many years prior to FDA approval. Since then, it has become a first line treatment as it is almost as strong as prednisone without the life threatening side effects of steroids. We have the option of stopping it at any time with no problems, it can be modified using daily doses of folic acid and even more control using a prescription form of folic acid called leucovorin. We have ways of controlling it's action and we can stop it if necessary....how much more safe can it be?

And it's used for a number of inflammatory disorders. I'm using it for RA and a possible new problem called relapsing polychondritis....I can avoid using steroids by using MTX. And it's helping me a lot.

I've been on MTX for over 10 years with few problems. Yeah, I get diarrhea at 36 hours after my weekly shot but that's fine...clears out the system. And it makes me tired so I take my dose before bedtime. And I take my folic acid.

Every 4 weeks I trek to my doc's office for an infusion of Orencia....been on that for over 7 years....and my blood work for MTX. You get the best results if the blood work is done 5 days after your dose. Orencia's not working that well anymore but it could be the new problem causing my new pain so I'll stay on it.

I lost a family member to RA....she was involved in the clinical trials for Enbrel but because it wasn't released yet by the FDA, she couldn't stay on it and she died of lung complications. If only she could have hung on for a few more years. And it would have helped if she'd stopped smoking!

But after 39 years with this, I am still upright and walking around. I've been happily married for 40 years and have 2 grown children and 2 grandchildren. Life has had it's problems but all in all, it's been wonderful. I wouldn't have changed a thing. I have 2 compassionate adult kids who understand that others have challenges and they might have them too but that doesn't destroy life....unless you let it. Don't let it. Just slow down and enjoy what you can do.

I have RA, but Ra doesn't have me.

gentle hugs............Jen

Best thing I can add is to listen to your body and be diligent with your rheumy. It took many many years for me to be diagnosed with RA. 15 years of off and on again trips to several docs until I was finally diagnosed with palindromic RA. Keep a log of when you have the pains / flares as well as where. This will help to find what your main triggers are. Mine are most noticeable when there are barometric pressure changes, not to mention STRESS. Try to find things you enjoy and take time out for them. Also keeping a good diet is helpful, but I tend to agree with a few other posts that going vegan will have little effect on the RA. It may be a benefit in other ways , I am not sure. Another thing I find helps is to exercise and to do it regularly. Not the all out heavy lifting and all, but yoga and tai chi and small simple aerobics. Keeping active helps me distract from the bad thoughts and helps me escape. Even if its as simple as taking the kids to the Y and swim or just walking around somewhere or other. And last but not least, Keep your head up, there are many of us out there feeling the same as you!

to get on the paddison sales train you have to believe that your RA is principally caused by allergies and sensitivities to foods.

that's his core pitch. that your digestive system is the cause and the cure for your RA.

I am glad it worked for him.

just like a diabetic diet will probably work for a diabetic.

or a sodium reduced diet might work for a vascular patient.

maybe he had food allergies since he was a kid.

i believe others on here when they say that changing their eating patterns makes them feel better. you know night shades and your no -pizza thing.

the problem is extrapolating that to a class of RA folks

I am happy that it worked for him, I just wished he would not make generalizations or sell things. i worry about vulnerable people once the selling stuff starts, supplements included.

Depot

Buddha, am I missing something? Wouldn't be unusual, airhead that I can be. What about this post has you so floored?
I have to assume it's confusing for some when they start reading & do not display the A Typical symptoms. Lord knows most of us have experianced others giving unsolicited advice. Eight kids, hey that's wonderful if you can manage. My parents had 11.
It can be hard to except. i have to assume there's a high number wanting confirmation of this diagnosis. After all the treatments are intimidating with a disease that is life changing.
Just curious.
I'm glad this group was able to offer peace in any way shape or form.
Sammy

i like the RA patient viewpoints.

I don't like marketers (I have a hard time saying practitioners) hawking stuff, (supplements books, examinations not covered by insurance, continuing treatment (weekly) not covered by insurance, tickets to lectures, or exposing points of vulnerability to those newly diagnosed, in the way of a probable cure or path of light to the one and true way of taking in a calorie. I think the gut theory is interesting also. but so was the antibiotic thing I did with the road back foundation and similar theories. the one thing they have in common is universal marketing.

I think the way that you help newbies explain the different pathways to diagnosis (what the different lab tests mean and stuff) is wicked helpful and you are not selling it to them

I always worry about folks when they are new. the folks that have been around the block and back with RA don't even notice the marketers.

and I strongly believe that any co-morbidity that is treated like obesity, diabetes, depression, high blood pressure, de-conditioning, (which may respond well to ANY diet) is great, but not because anyone bought anything from anyone.

you probably appreciate your specialists. they have a lot of initials after their names I bet. well if someone thinks they have a food issue they might want to bring it to someone, similarly, that has a lot of initials after their name and will bill their insurance and not ask them to write a check, payable, to them.

that's less vulnerable to them, and less expensive, also.

Depot