It's so hard to believe that all this started 10 months ago now. When symptoms first started I figured it was just going to be one of those weird things that I would eventually be able to look back on and think "Wow that was strange, glad that's over!" Nope...
It started in my feet in October then in January when I started to have symptoms in my hands I knew it wasn't something that was going to go away. I so, so looked forward to summer and relief from the cold only to find out that the high humidity of a Missouri summer was almost worse than the pain in the winter.
I'm so mad right now at my bodies betrayal. I fought hard to overcome obesity, losing 140 lbs between 2012 and 2013. I was an otherwise healthy young adult when this hit. And the worst part for me right now is that I'm a mom of a 5 year old little girl. I have completely wasted my summer hiding in A/C because the pain and swelling is instant when I go out. I feel terrible that I can't do the things I love to do with her. Sometimes I try to ignore it and go have fun but I know I will pay for it later when I settle in and become so stiff and sore I could cry.
I'm hesitant to begin treatments for multiple reasons, mainly cost & the fact that I'm so young and it's life long. I know though if I don't I will continue to be miserable & withdraw from things I love.
I'm so thankful there are forums/communities like this to speak to people who know what you're going through. I think people who can't fully understand try to be supportive but then I end up feeling like I am complaining.
A couple of questions I have are... How long did you wait between the start of symptoms & beginning treatment? And if you waited did symptoms eventually lessen? I hear a lot of people talk about flare up periods but I feel like it's been a 10 month flare up for me! Thanks everyone!
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Kate1806
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I'm in KC, MO. The cost is solely due to being a single mom and making a bit too much to get help with insurance but still struggling to pay premiums. I had to cancel my plan prior to my diagnosis. I did however speak to my doctor about it and there is a program here in KC that is for patients with rheumatic diseases that links you with rheumatologists and lower cost treatments. It's an option for me but I'm also concerned about the long term. Being only 26 how long can my body handle to medications alone before I start to have other associated issues. My great grandma had crippling RA & she died from liver failure and other complications. And she didn't even get diagnosed till her 50's. That scares me but I don't want to waste my life waiting for a sunnier day that will never come (symptoms lesson on it's own). So I guess I mostly want to know if there is hope that it can go into "remission" for a bit without major treatment.
Is KC MO in the US? Sorry for my ignorance. I'm in Scotland. One thing to bear in mind about long term medication is that you do have a chance of going into remission. Its not guaranteed and not permanent usually but its worth trying the meds. I think if you live healthily and try not to put on weight (I did and have now lost a lot of it! which helps).
I'd be surprised if it goes into remission without treatment. And the painkillers you may be taking to deal with the everyday are likely to be just as toxic.
I would be inclined to try whatever is on offer. One of the gold standard drugs here is methotrexate. They test you regularly for side effects. It gave me a good ten years, now I'm on the way to a new treatment which is showing positive signs.
Look at the NRAS and arthritis research uk websites for good information. Good luck!
I went over a decade between the start of symptoms & the start of treatment. Not because I wanted to - I couldn't get a diagnosis. My symptoms kept changing and I went into remission twice during pregnancies.
It doesn't get better on its own. Even if it does lay low for a while (as it often does during pregnancy) when it comes back....it comes back worse. My personal experience is that, other than when I was pregnant, when I started feeling bad it just went on and on and on - for years - until I got treatment.
Early treatment prevents damage to joints. The longer the disease runs riot untreated, the more irreversible damage can build up. If you google for pictures of what RD can do, you'll see twisted, distorted limbs and appendages that you'll struggle to believe are arms & legs, hands & feet. That's what this disease was able to do to people in the days before drug treatments were available.
I gather you are in America & worried about costs for that reason. The older drugs like methotrexate have been on the market for decades and are cheap. Generics are every bit as effective as branded. Blood monitoring & doctor's appointments won't be so cheap but if you let this disease do what it wants to you, you'll be paying for an awful lot more of them than if you get it under control. The newer biologics are very expensive. However, I believe the drug companies that make them do run discount schemes. (Sorry I don't know the details - I'm in the UK.)
I'm not sure how you got your diagnosis. If it wasn't from a Rheumatologist, it is really important that you get properly diagnosed & treated - for the sake of your child, if not for yourself. Untreated RD doesn't only affect quality of life, it can shorten life as it increases your risk of heart disease.
You must be a very strong and single-minded person to lose all that weight and to keep on trying to do the best for your wee one even though you aren't feeling good. You need to turn some of that determination towards getting your RD under control.
No - it isn't fair. No - it isn't fun. But this is the hand you've been dealt. Sorry if I sound like I'm telling you off. I'm really not - I just think it's very important for you to understand that RD won't just go away on its own.
Thank you so much, you're very kind. And yes, I am in the U.S.
Ultimately I know what I need to do for myself and my daughter. I know the risks of not taking action will hurt me more in the long run.
If I allow myself to be honest about it I am still just at an emotional time dealing with it. If I want to feel better I will have to be proactive because the self pity is certainly not going to help.
I'm glad to know there are cheaper medications and will make sure to ask about them when I speak to my rheumatologist about beginning treatment.
It is scary & overwhelming but you are a strong person & you can get back in control of your life again.
Methotrexate, hydroxychloroquine and sulfasalazine are the oldest drugs. Leflunomide is a bit newer. They all take months rather than days to work. It can be a trial and error process to get the one that's right for you - all the more reason to make a start.
The disease is really much more scary than the drugs, so please do contact a rheumatologist and start to explore your treatment options. Untreated it can affect your organs as well as your joints, and things are really so much better now than in your great gran's days.
I started on the drugs 5 years ago, with great success as I went from barely being able to walk or do anything for myself to living a pretty normal life again. My disease is now well controlled, and if it stays that way for the rest of this year then my rheumy says we can start to reduce the drugs and with luck it'll stay under control. So just because you start drugs now doesn't mean it has to be forever. But if I hadn't started them then I think I would have a huge amount of damage by now. My treatment was delayed by about 9 months and in that short time my feet have been permanently damaged. I wish I'd been able to start on the drugs at the first signs.
I take Methotraxate, which is the most commonly used drug, and isn't that expensive. However, you mustn't get pregnant while taking it. It's been a magic drug for me.
You'll no doubt find a story on the Internet about someone whose symptoms vanished by themselves, or using some potion or other. And maybe that has happened to someone, somewhere. But if it has it's very, very rare and I wouldn't gamble on those odds for myself.
Welcome Kate. Just to explain this is UK based site & maybe why some things are unfamiliar to us. That said we welcome & in fact have many overseas members, the US included so you're not alone! In fact it's interesting comparing how the disease is treated in different countries.
You've had very good, you may consider quite alarming replies but honestly what's been said is reality & unfortunately you'll need to face it if you don't want to let the disease take hold of you & possibly cause damage.
I went from walking normally to hobbling in a matter of days. A fortnight or so passed & the over-the-counter tablets just weren't doing it so I went to my doctor. She examined my feet & suspected RD so arranged the relevant blood tests which came back positive, high rheumatoid factor & inflammatory markers. Two weeks later I was formally diagnosed seropositive erosive rheumatoid arthritis & started on my meds. The DMARDs, steroids, NSAID & other meds have controlled me to a point but my inflammatory markers don't give a true picture & I still have disease activity. The position now is trying another DMARD to take alongside methotrexate which I've been on for 6 years now, diagnosed in 2008. I also have Osteoarthritis, predominantly in my neck, lower back & knees (so far!) which is taken care of (in the main) by NSAID & pain relief plus exercises & swimming when I'm in the mood.
My grandma walked with the aid of a stick had terribly gnarled fingers & bunions on her odd looking feet. All she had to help was ibuprofen and some horrible smelling ointment. I was only 14 when she died & at that time I thought it was because she was old but maybe she went before her time? I'll never know as there's nobody to ask but looking at old images of sufferers they seem very familiar.
Hey, you've been very strong willed to lose that much weight, well done you, but now you need to draw on that strength again. I'm sure your little girl wants her mummy to play with her without the ooh, ahh, ouches of you getting up off the floor?
Thank you all for your response! And to clarify I am in the United States. I am going to go ahead and speak with the doctor about my options. I've been getting in my own way but ultimately I know the answers and I need to just do it so I can get back to living
It was interesting reading your post about your initial diagnosis of RD. I was exactly the same. I was sent to see a Rheumatologist who was able to diagnose me just by asking me to outstretch my arms......they had bent inwards so gradually that I hadn't even noticed other than pain in my elbows. When he told me I just thought well thats grand, what next and then went on to think about the up coming week-end.....not for a moment did I think or expect what was to come.
Now four, nearly five years later I have been through so much and not just medically! RD has changed my life but like you Kate I discovered an inner strength that I never knew I had. I have said it many times on this site too that my heart does out to young people, especially with children or having to work full time who have this awful and much misunderstood disease.
Kate you have had some very good advise on this site, please think long and hard about what to do next. I was on the east coast of the US recently (Baltimore) and I saw medications for Biologicals advertised on the telly over there, seemed very strange to me....I live in Ireland btw.
Anyhow, all the very best of luck to you and your wee girl. Please keep in touch and let us know how you get on. XX
Since RA attacks and damages joints through an inflammatory process, it causes long term damage to joints if untreated. I have had both knees replaced, a hip replacement and one ankle fused.
A typical dose of Naproxen, which you can get very cheaply here in the US and is an anti-inflammatory, is 500mg twice a day. Your typical pills are 220mg so taking two in the morning and two at night is a typical prescription strength. I am not a doctor, so, of course, any medication advice should be confirmed by a doctor!
Others here have already given you great advice. I am also on Methotrexate and Tramadol for pain. Both of which are pretty reasonably priced. I get 100 Tramadol for under 10 dollars at Sams Club.
I started treatment immediately. I am taking methotrexate and prednisone which are both available as generics and are quite inexpensive. I realize that you are a young woman and the thought of lifelong treatment is difficult to accept, but you need to slow thrRA progress.
HI Kate1806,
I have put a link to the Arthritis Foundation which is an organisation in the US for people with all forms of arthritis. It may be worth you contacting them to see if there is any help they can suggest for you:
I really feel for you as you are so young to have this horrid disease. You are only 2 years older than my son, so my heart goes out to you and your little girl.
This is a wonderful site for comfort and knowledge, but it is run by the UK where healthcare is free. I always thought Canada had the best healthcare system, but I stand corrected. I live in Vancouver BC Canada so I know how living in the US is extremely costly for proper medical care. Are you able to find a doctor through Medicaid? Your health depends on it.
One of the drugs I am on is called Sulfasalazine ec. Canadian healthcare pays for it . I just pay a $5 dispensing fee. This drug is not that expensive in the States. I am not a doctor, I just want you to know that not all the drugs are expensive in the States.
I'm 49, and I was diagnosed last november, but I have had symptoms for the last 5 years that have come and gone within a week of it starting. Then BAM my feet went from a size 8 to a size 12 within a couple of weeks with no reprieve. I have been in pain for the last 8 months and I am now trying to find the right meds for me to control this dreadful disease. My feet are now a size 10. I am getting better, but it is a long painful road . RA affects everyone differently.
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Please Advise...RA 
Double whammy: osteoarthritis with my RA.
My first yr with ra 
