The New Girl

[sunshinebc79]

Hi! My name is Bethany. I'm a 37 year old mother of 3. I am a newly diagnosed with RA. I tried methotrexate and that didn't work. I'm now on Arava (Leflunomide) and 6 weeks in, I still do not have any relief. I'm ready to get this under control! You should say hi, I'm pretty friendly

[Hidden]

Hello Bethany!! I'm 50 years old with 2 adult children. I'm 16 weeks on mtx and I'm begining to feel the positive effects!

[sunshinebc79 in reply to Hidden]

That has to be so encouraging that it is working. This RA business is NO fun. I'm also on methylprednisolone, Lyria (Fibromyalgia), Wellbutrin, Oxycodone for flares, I also have Ehlers-Danlos Syndrome (a connective tissue disorder). I'm a complicated mess... but I'm thankful because there are people who are in a lot worse shape than me.

[Hidden in reply to sunshinebc79]

I've had RA for a little over 3years and it has been a difficult road. I am encouraged that the mtx may be working, but I'm not holding my breath that it will work....only time will tell.

Wow you have a lot of autoimmune diseases. Did they all come at once?

I was diagnosed with MS back in 1990. I was one of the lucky few that my MS "just went away" after a few years. I still hold out hope that this darn RA will just disapear too.

[sunshinebc79 in reply to Hidden]

Yes, it seems that they have always been there since I was younger but they have actively been attacking me more recently over the past 3 years.

[jojo25]

Hi there, Im 60 and was diagnosed with RA almost 4 years ago..my body was in so much pain everyday, I started on methotrexate. Im off my meds because my new rheumatologist wasnt happy with my liver,so im off my meds and wholl poop...my shoulders and hands are in flare ups...i find heat seems to help...good luck...

[Amy_Lee in reply to jojo25]

Hi Jojo,

Did the rheumy not give you something else instead of just let you suffer with flare up? It is horrible really.

[kevg]

Well hello . I am on methotrexate and it's working for me. I would make sure your ra doc is doing blood tests to see how your numberS are. Methotrexate is slow acting so it might take a couple months to come into normal range. Make sure you are taking vitamin c d and folic acid. BUT everyone is unique

[kellienix]

Hi Bethany! It takes time for meds to get in system to see significant difference, but hopefully you're taking anti-inflammatory also. I take 4 Advil each am and pm, seems to help! Good luck!!

[sunshinebc79 in reply to kellienix]

Unfortunately, I am unable to take NSAIDS so we have had to get creative. For severe pain I have been prescribed percocet. I've been seeing my Rheumatologist for a little over a year. I've had MANY injections in different joints including in the muscle too. I've been on steroids and I have a full blown moon face but thankfully, he's weaning me off of them for now. I was first diagnosed with Ehlers Danlos Syndrome which is as a connective tissue disorder, then I was diagnosed with fibromyalgia, he kept testing and everything was coming back negative until he took an MRI of my hands and realized my hands are where my biggest issues lie (leave aside that I can pop my hip out of socket without flinching). Anyway, with the positive MRI and the negative blood work, he diagnosed me with seronegative RA... FINALLY, we can now start treating this junk.

[Amy_Lee]

Hi sunshinebc79,

Since you are new to RA, do read the following very good and informative videos to know more about RA so that you will have the confident to fight back. You do look very positive, do keep it up and be prepared to accept yourself.

healthunlocked.com/ra-warri...

In addition, give yourself sometimes to let methotrexate to work on you. I was diagnosed 2 1/2 years ago, now I am in remission. You need to be very positive to let the medication to get into your system to control the disease. Have a look at my recovery process below, I hope it can give you strength to go on.

healthunlocked.com/ra-warri....

Also, you need to do some exercise everyday though painful but it will help you to avoid muscle wastage and to maintain the flexibility of your joints. Below were some of the exercises that I did at the very early stage for your reference.

healthunlocked.com/ra-warri...

[sunshinebc79 in reply to Amy_Lee]

Amy - WOW very encouraging. I did intend on giving the methotrexate a good go but I was having heart palpitations so my Rheumatologist had to take me off of it and switch me to Leflunomide.

Thank you for your input and for the amazing links. I will definitely keep fighting, there are so many people who have things worse than me and if they can keep going, so can I! Besides, I have an amazing family to keep fighting for.

[Amy_Lee in reply to sunshinebc79]

Just work with your rheumy, he or she will know best of what to do with you. Your pain will slowly reduce when the medication starts working in your system. Give yourself about a year, you should be able to see improvement. But you must not forget to exercise everyday, that is a very important part of our recovery.

[sunshinebc79 in reply to Amy_Lee]

I have found that swimming is so much easier on the joints and I've more recently picked up yoga. I do have days where I feel like I just can't get out of bed but I definitely do my best to fight through it and get moving. Thank you for your encouragement!

[wsjkcj1 in reply to sunshinebc79]

Did the Methotrexate cause the heart palps or just unsafe to use since you had them?

[sunshinebc79 in reply to wsjkcj1]

It actually caused my heart palpitations.

[wsjkcj1 in reply to sunshinebc79]

wow. wasn't aware that was a side effect. good to know. hope you find relief with Leflunomide.

[ShannonMFG]

I fired both of my Rheumys. Big Pharm meds did me no favors. I take ginger and Tumeric daily and have had more relief taking them than I ever did with pharm meds including Arava (which caused a severe skin rash). I flat out refused MTX. I'm a nurse and I've seen first hand what it can and can't do. Changing my diet, using essential oils, and numerous other changes have benefited me more than I can express. I wish you the best in finding what works for you. It's hard to have kiddos and fight this crap at the same time! But keep fighting!! 💜💙

[LeviJ in reply to ShannonMFG]

Shannon, I am with you!! These RA meds have done me no favors (double negative, sorry). Duh! The damn biologics and methotrexate turn off your immune system. Dying is what I felt happening to me on the biologics when I came down with 'burnt lung' and laid in bed unable to move or pull up the sheets for 5 months. Biologics are nasty! Changing my diet also helped (more than any drug). No processed food period. Last nite I dug myself a shallow grave by consuming a piece of my hubby's b-day cake! Now, I am trying to dig myself out. Extra water intake and an Epson salt bath are in the works! I will never give up. I keep moving. Keep my stress level minimal. Do not waste energy on being chatty or socia media. It is all about conserving your energy and building yourself up, getting outside, and taking your mind off of the pain. It hurts more to sit still than it does to move, SO RA people move your butts!! Also on rare occasion I will take 1/4 of a 10 mg tab of Citalopram. It is immenselt helpful for pain, but because I don't feel like myself on it, I take it as infrequently as possible. Best of life to everyone with RA. Never lay down and give up the fight unless it is bedtime! The more you sit still, the worse it becomes!! You have to MOVE!!

[ShannonMFG in reply to LeviJ]

Amen! Keep moving!

[sunshinebc79 in reply to LeviJ]

I have been reading up on the book called Whole 30. I plan on starting my road on that in January after the holidays when I can really focus on what I'm eating. I have found baths to be one of the most soothing things ( I wish I had a jacuzzi tub or even a garden tub). The only problem with the baths is that I feel SO heavy when trying to get out because of that darn thing called gravity. I think RA people are some of the strongest people I know. You guys ROCK! Thank you for your encouragement and your stories... it helps!

[jaclyn11305 in reply to sunshinebc79]

Baths are my life saver its the only thing that helps.

[sunshinebc79 in reply to ShannonMFG]

I have been dabbling in essential oils and learning about them. I frequently use Deep Relief roll on from Young Living and I LOVE IT! I have also been reading up on Tumeric. How do you take it? Do you put it in water or capsules?

[Hidden in reply to sunshinebc79]

It's the curcumin in the tumeric that is the anti inflammatory. So when you buy the tumeric/curcumin tablets, make sure curcumin is the top ingredient. The oranger the tablet the better.

[sunshinebc79 in reply to Hidden]

Perfect, thank you! I am going to the grocery store on my way home to get some!

[Hidden in reply to sunshinebc79]

The turmeric really needs oil to work, and it is a great deal more effective with black pepper. If you Google it, you can see what I'm talking about. My hubby puts coconut oil in a very small dish (like 1 - 2 tablespoons), puts it on the warming burner of the stove, and when melted adds turmeric and black pepper. He takes it when it has solidified 1 - 2 times a day. If you want more information I can ask him how much of the turmeric and pepper he uses.

[wsjkcj1 in reply to ShannonMFG]

is the ginger and turmeric found in supplements or you put them on your food?

[ShannonMFG in reply to wsjkcj1]

I take supplements. I take ginger on an empty stomach and Tumeric with food (meat/protein) because it's fat soluble.

[Hayakbikehike]

I had my first RA flare at 32 while pregnant with my third baby. It took about 6years to get a diagnosis. Doctors alluded to it being in my head. I got a new doctor who actually treated me. I hate the meds too, but I have a life. A naturopath told me even with a clean diet, I'd never be able to quit the meds. I'm almost 60 now. I watched my grandmother die slowly from RA and I know how much I have to be grateful for living now!

[sunshinebc79 in reply to Hayakbikehike]

6 years?! I think I would go crazy. There are definitely times when I feel as if I'm driving my poor doctor crazy. He really does care for his patients. He even answers his emails on his days off and does other stuff on the weekends. I personally feel bad and like I'm bugging him but he's never made me feel that way once, nor has he made me feel like I was making anything up. He's consistently searched until we've gotten answers,it's just been a long search. I'm so glad you were able to finally get some answers, even if you still have to stay on the medicine. I went to my first acupuncture appointment today, I hear they work. The acupuncturist doctor said I should see results in a few visits, I guess we shall see! I'll keep y'all posted!

[jaclyn11305]

Hello my name is jaclyn im 34 mother of 2 one is 11 other is 2 i was dianoised with seronegitive ra in march and still havent seen a rhemy i was on methatroxate from my family doctor but didn't work so now its a waiting game until i find a rhemy who is serious about finding out what's going on with my body. I have been having symptoms for 2yrs.. Im in so much pain everyday its worse at night. So far my hands feet knees shoulder are affected. So sorry to hear you are in this life raft to lets hope we can stay afloat and get better.

[sunshinebc79 in reply to jaclyn11305]

Why is it so hard for you to get in to see a Rheumatologist? I'm so sorry! It's such a long, painful journey. I just went to see an acupuncturist doctor yesterday, I hear they work. I'm gonna give it a go and see if it at least helps at all. We might be on this raft , but we aren't alone. We got this!

[Hayakbikehike in reply to jaclyn11305]

I'm so sorry! Have you contacted the local Arthritis Foundation? They might give you a lead. I went to the 2 top rheumys in Seattle at the time...not a fan. The best people to talk to are fellow RA patients. I agree, nights are worse! I hope you take an anti inflammatory... sometimes Prednisone can be a lifesaver but see if you can avoid long-term use. Ice is your friend. I used to soak my hands in ice and water. That helps a lot. Hopefully you will get help soon

[Hidden]

I've had RA for six years and been in treatment for two. I did the MTX route for year and switched to the Minocycline Antibiotic Protocol Therapy a year ago. I am feeling so much better - not healed yet, but this is my second day of candle making so I think I am doing well. It is hard enough without kids - I hope you start feeling better soon so you can enjoy your little ones.