Please try not to freak out…(its hard I know) I am 49 very active healthy female and same as you started having feet pain and hand/wrist pain back in summer along with some other symptoms. I was actually tested fro MS at first because I had numbness and tingling as well. That all came back negative. I finally saw a rheumatologist in Dec and had my BW come back with High Anti-CCP as well..along with some High WBC ..neg for RF as well. I was freaked out as I read a positive anti-ccp can mean a more progressive form of RA. I stopped going down that road and started being positive and proactive with my health. Diet can have a huge effect.. I have gone almost completely Gluten free and have hardly had any meat in the last 3 weeks. I also started a supplement called Solgar 7 you can probably find online but this is a Natural Tumeric/Boswellia/anti-inflammatry supplement..I take probiotics as well along with Vit D…I can honestly say I have seen a big
improvement in the last couple weeks since i started doing all this. Dr. started me on Pheniquil but he said that can take 2-3mos before i see any difference so I know its not the medication since its only been a few weeks. People will say different things about natural supplements and diet and i know everyone is different. I have been doing a lot of my own research and this is what has helped me so far. Again..I am newly diagnosed and I know Its a long journey I will be on. My dr. okayed all my supplements to take while on Pheniquil…you are not on anything yet so wouldn't hurt to try some natural supplements and experiment with your diet. That stinks that you cant' get into a dr for that long! I hope that changes for you… hang in there and good luck:)

Thank you for the quick reply. I will find out more on Monday but it appears I will have to to fly to Seatte, WA for my appointment. Did your dr say you had an aggressive form of RA. All my other blood work for wbc was normal including normal thyroid work up.

By all means, go to Seattle. [Did you mean more rheumatologists are there and you don't have to wait a year? Assume so.

You need to start on DMARDS as soon as possible. I would push for MTX rather than for plaquenil, which rarely helps.

While diet and exercise are helpful, they do nothing to stop the progressive joint damage that comes with RA. You need to be on a DMARD.

For the record......going on a gluten free diet is only for those who truly are gluten free......and very, very few people truly are.

I TOTALLY disagree with taking supplements unless you have deficient blood work that supports taking one or more. Too many people assume supplements are useful when in fact they can cause more damage if taken without a documented blood test demonstrating the need for them.

He did not tell me that…(have more aggressive form) its something I read on my own on several different RA sites. I didn't ask him either… I don't want to stress myself out worrying about the future. All my other BW was ok except My WBC GRAN were High..along with High positive Anti-ccp. I wondered about you heading to the Mainland to see a dr sooner... Hope it works out.

Totally agree with californialynn.

There are 2 separate area's of RA.
1) Pain, inflammation/swelling management
2) Damage control.

Pain & inflammation can be managed with Prednisone which is the typical first step to get you back in line before putting you on a good DMARD like Methotrexate or on here it's called MTX & then then Prednisone is weaned off.

As far as supplements the only one that I've experienced that goes hand in hand with MTX is Folic Acid which helps with nausea.

But I too was recently diagnosed within the past few years & I had hi anti-ccp as well >250, RF was neg, ESR was normal. Just an FYI the anti-ccp has come way down, my most recent in 9/2016 was 53 which is still high but hey it's way better than where I was!

Getting an appt in Seattle should be fairly easy. However, Im not sure how we will afford that. And who will take care of my kids? Just so much to think about. The side effects of Mtx terrify me. Im already on nexium for acid reflux and I imagine my stomach will only get worse. I also take a daily multivitamin. I do know Im low on vitamin d and have been iron deficient in the past. This is all so frustrating. I don't even know where to start. I took some tylenol last night before bed and I had no pain/stiffness this morning. Thank you for being so helpful and reassuring me that this is not a death sentence.

Do not take the mthx pills. The injections are very easy to give yourself, and they will not hurt your stomach. I went through 3 years of torture on oral mthx, and my stomach has never been the same.

And borrow money if you have to, to go to Seattle. There might be a hospice you can stay at there while you are seeing the doctor and getting any further tests done. Do you live on the Panhandle, or in the main part of Alaska? It is a short trip to some Canadian cities which might or might not have a rheumatologist. I will say, that if you wait a year to start treatment, you may get permanent joint damage, and the disease gets worse if it doesn't get hit hard at the beginning, I am a prime example of that, 18 years ago, they knew nothing about how severe sero-negative can become.

I will say, that for my money, the blood tests are only guidelines. It is symptoms that count. If you are in pain, especially with hot, swollen joints, the sooner you get on meds the better.

Welcome to the group. Please keep asking questions. We are not professionals, but we can share our experiences and certainly support you on this RA journey.

PS. Don't give up or worry about the future. Many people have really good outcomes on the various meds that are available today.

We are in Anchorage. Pretty big city here but not a lot of specialist. I will get to Seattle soon. We will figure out a way for me to go. Im wondering if the cold environment set off the RA. Is that possible? Why exactly does my high ccp indicate? I thought it measured the antibodies.

sweetchksgrl, I had the same situation 16 years ago, when I moved to a large house, had to deal with a lot of snow and 4 cords of wood. In just a few months, I was getting to where I couldn't grab wood for the wood stove, and I had probems clearing snow. I had the same kind of labs, with only a high anti-CCP. I had ulcerative colitis the year before, and was treated successfully with sulfasalazine, so my rheumatologist used the same treatment for what he was calling sero negative RA. After about 5 months I went into remission. Alas, it came back, but in a severe RA positive onset. Have you had any other autoimmune diseases? They tend to cluster, and a lot of times, symptoms overlap considerably. And, as kmac22 said, please don't freak out. You have a lot on your plate, dealing with 4 kids in a remote place and a potentially scary disease. Get working on a rhematology appointment right away, and worry about getting there as the time comes.

kmac22, I'm certain you'll take a heat from a few hard-liners about supplements and diet, but do what you think helps and keep an open mind and open eye about RA drugs. Do you mean plaquenil, rather than Pheniquil? Please be open to periodic monitoring for joint deformities.

My personal feeling about RA, and health in general, is that if it works, don't knock it. Even a placebo effect can have powerful healing properties. I advocate trusting your instincts, knowing your body, and being open to reaxamination of plans, based on extrinsic testing.

There used to be a group at DS for Alternative therapies, but I think it's disappeared. Look for it and see if anyone is still posting. There's one fellow, nonightshades2 (?), who swears by a no nightshade diet. I tried that, with no effect. Do you have celiac disease or are you gluten-intolerant? If you are, you may gain some relief from a gluten-free diet. I had some tests done to make sure I did not have celiac. Be careful with vitamin D. It's a critical piece of a complicated cycle that maintains calcium in your blood (serum calcium) and in the ionized form (free calcium, unbound to other protens) which is used for muscle function and as a neurotransmitter. If you take too much vitamin, D, you can upset the balance, causing increased calcium absorption, which sets off the parathyroid glands creating excess PHP, which ends up in leeching calcium from your bones, ending in osteopenia or osteoporosis. I'm being evaluated for hypercalcemia (1 1/2) years, so this is near and dear. Have you been tested for vit. d (Vitamin D-25 Hydroxy)? The standard low end to the range is 30 somethings, but endocrinologists will tell you that you're probable safe above 20, and if you supplement, please avoid the big splashes (even 5000 iU's). I'm an exercise and diet fanatic, and even if it never did a thing for my RA, I feel there's enough pressure put on all my organs, as well as joints, so why not make sure I do the best I can for my body as a whole? I AM NOT RA. I ams omebody, like you who is dealing as I know best. Until you become convinced you should do something else, trust yourself. Do stay vigilant. I'm glad you're feeling some improvement.

BTW, I don't know anything about Boswellia, personally, but I take in a fair amount of turmeric, ginger and garlic through cooking. It's nothing like what you get in capsulated form, but I like real, fresh foods, so it makes more sense to me.

Good luck to both of you. We're all different in the way disease manifests itself, and in what helps us. If somebody replies to this thread telling you what you should or should not do, measure that against everything else you hear or know. There are some who like to dispense "medical" advice, but they're not doctors.

BTW, if you haven't already, take a look at Warrior Gal's post about her journey. She contracted RA before they had the modern treatments available today, but you can easily see what can happen without effective treatment. (thank you WG)

I was recently diagnosed in August with RA I am currently taking Methotrexate 6 pills 2.5 mg and 2 Folic Acid and it has not bothered my stomach at all and next Saturday I will start Enbrel injections. Ask questions when you go, everything will be ok. I am slowly learning this as well

No I do not have another autoimmune disease that I know of. I had an extensive work up done when this was found. I think something else that frightens me is that RA isn't limited to your joints. I have read of people getting lung diseases and heart disease. Any take on this? You all have been so great. A lot of these online forums aren't very active and Im glad to see this one is!

You're right. RA is a stinking disease. I had (possibly) a reaction to MTX causing me to have a lung disease called BOOP. Or, it used to be called that, but I think it's called crptogenic organizing pneumonia now. It's possible that RA caused it, or tht the cause was ideopathic, but since I was taking MTX, that semed the likely cause. If you have RA, you can't escape the risk that something can happen, so don't sweat it. Be proactive. Here's a webmd link to RA and heart disease:

http://www.webmd.com/rheumatoid-arthritis/biologics-15/heart-disease-rheumatoid-arthritis

Sorry you have this, but see a theumatologist before you lose any sleep. OK? You'll get through this.

hows your function, now? I am thinking like with uh, 4 small children ranging in age 2 (mama mia fun times) to 12, you could out dynamo everyone of us on here :) (smiling). I don't know what your support network is, yet, for your kids but I hope someone in friends, family, daycare, neighborhood, church can step up to lend you a hand with your upcoming medical as pertains to the kids.

it's a chronic disease until death. as the years and decades cross by you'll hit your stride. with a four children aged 2 to 12 you are not going to have the luxury of over ruminating on your disease. You are going to get into treatment and probably hit the ground running.

buddha asked but I think you meant plaquenil? who is the doctor that prescribed this? It's a first out of the gate disease modifying anti rheumatic drug - and maybe it will affect you positively. maybe this same doctor can add in another dmard while you are waiting? also there are about 17 nsaids if you wanted to try a daily nsaid with this doctor that is not an over the counter one. did this same doctor mention methotrexate and/or pred as a bridge for pain and swelling just while waiting for next steps?

Maybe your's is proceeding at a different pace than any of us. i like to think that most of the time the sickest ones post on here - and maybe your journey will be easily handled. try not to dr. google all that much until you get to the doctor. see if you can pick up a RA book at the local library (Like you have time with 4 small kids) to get familiar with treatment terminologies. I think ocean mentioned palliatives - like pred and nsaids before you get to the rheumie if a primary would step up with that part of pre-treatment given your special logistics.

I am not going to advise you how or where to speed up this appointment. it depends on the kids and the budget I am sure. But I hope that process is moving along.

welcome

we are glad you are here

depotblue

If you are a military dependent, and you need to see a specialist not available in your area, you should get officially referred to the nearest (US, not Canada) specialist. Seattle as you stated. You should have your travel expenses covered (flight, per diem for hotel or Fisher House, and food). They do not cover anything for care of your children, but perhaps your husband can look into getting either leave or TDY to be at home with the kids during the time you are away, if you do not have family or friends to help. Usually any tests are expedited to minimize time away.

My husband is going into the army clinic tomorrow to see what needs to happen as far as getting me to Seattle. I have googled this disease so much that I have put my stomach in knots. I want an immediate answer and I know that isn't going to happen. You all have been very supportive and and I need that right now.