Does anyone have seronegative form of arthritis and you are being treated with methotrexate?

Does anyone have seronegative form of arthritis and you are being treated with methotrexate?
I’m beginning to think that my joint pain is hormonal and that I should go to a Chinese herbalist. I’m 41 and I hit a 4pm slump everyday, I get headaches and joint pain intermittently. I feel it coincides with my cycles and my Rheum doesn’t even mention this. Do they expect us to just take meds forever? I’m 41!

Melissa Hood
M
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20 ANSWER

If they diagnose RA then they expect us to take the medications offered. I said i did not want to take them. We do have a choice. The medication is to lower the immune system so that you don't have as many flares and in the hope of stopping the joints being deformed. I wanted to try the diet change instead. So i am eating only organic foods and do not have any processed foods, no fizzy drinks. I have live yogurt and i also have cinnamon on my breakfast. Plus VitD. Each day. It is good so far my flares are not gone but i have less of them now so hope that it continues that way.

Pauline Andersen
P

I should also say that I really don’t eat processed foods and I’m pretty much gluten free. I have my best days when I exercise. My question is if we don’t take the meds will the joints still become deformed? Do they only become more prone to being deformed the more flares we have? I’ve been on methotrexate for a few months now and I have to say I don’t think it helps.

Melissa Hood
M

Meds don't always stop deformation. All my joint changes happened while on multiple meds. There's over 60 genes that cause RA and many others that affect disease activity. Each med only works on some. If you have MTHFR or other common SNPs like CBS deficiency methotrexate can raise homocysteine and make you worse.

Melanie Dickey 3 years

If your flares coincide with monthly hormonal changes boron helps. It balances hormones and stimulates the adrenal glands so if you ever take steroids it helps reduce dependence on them. It lowers CRP and anti-CCP too and is a vitamin D co-factor and keeps bones and joints hard.

Melanie Dickey 3 years

I didn't think it was working for me either and then I went off it and had more pain so I guess it was doing something

Liz Crews 3 years

I don't know what makes the joints deformed on some people, because i have not taken any of the medications, they do say it is to help lessen the deformed joints. I don't have any deformed joints yet and i hope that i don't get any. We are all different so it is hard. All i know is that i have to do something to help myself and i chose diet change. Plus live yogurt and vitD. And cinnamon. Only time will tell for me.

Pauline Andersen
P

Joint changes are usually caused by elevated neutrophils.

Melanie Dickey 3 years

It does say the following in the arthritis webpage: "The importance of early diagnosis and effective treatment using disease-modifying drugs cannot be overstated," Davis stresses. "It is crucial to start treatment within six months of disease onset to get the best chance of preventing progression of joint damage and of improving the chances of putting RA in remission."

Pauline Andersen
P

So I would like to address that quote, which is what makes the doctors immediately prescribe the RA meds without even considering diet and lifestyle changes. Yet most of the meds take six to 12 weeks to have an effect, if they do at all, and it can take up to a year for some people to find a drug that works for them. In fact, plaquenil can take up to 6 months to work. All the while no one is talking about diet and lifestyle changes. We all are so different in terms of our RA, how we got it, our DNA, our background, the state of our health and body when we were diagnosed — it's impossible to know which drug works for which person. No one wants the pain that comes with RA and no one wants the deformities, but pain and deformity is so different from person to person. I have learned from this group that many people struggle with drugs, they take them but they still suffer, or the drugs stop working and they have to find new ones, or they get infections and other problems from taking immune-suppressing drugs for a long time. Others have trouble getting off of prednisone which is known to have very bad long term effects on the body, amongst other things. There is no one answer or one quick answer with RA. But we do have a choice. If you want to take meds, then fine, but I suggest you change your diet and lifestyle drastically so you can one day get off the meds, if they don't put you into remission. I am unable to take the medication so I have changed my diet, my lifestyle and my attitude. I do have deformities (in my hands which I have had from day one and a well-known rheumatologist told me he has only seen hands like mine four times in 40 years and even Enbrel won't help them). So they are deformed, but as you can see by my typing, I am still very functional. I also cook and prepare all my own food, dress myself, wash my hair, etc. By changing my diet I am pretty much pain free and have been off pain meds since July 2017. My inflammation is way down. I do have bad days, sometimes it's the weather, sometimes it's a new food I am introducing, and sometimes I have just overdone it, but the pain is nowhere near what it used to be. I no longer am fatigued. I work full time with ease. As long as I pace myself and get lots of sleep, I'm good. There is no cure for RA. I will never be like I was. But I am managing well and still working with a naturopath to improve even further. We all worry about deformities, but I don't think there is a guarantee because we are all so different. Do what you think is best for you and your needs Good luck.

Marlene Sykes 3 years

Marlene Sykes what are you eating

Robin Carroll 3 years

I don't think they talk much about anything. Mine didn't.

Carol Castro
C

Also, I am sero-negative and was diagnosed after menopause, so it could be hormonal for sure. I tried traditional chinese medicine with acupuncture and herbs for a year and it did not help me, although it may help you.

Marlene Sykes
M

I personally know 4 people who treated with meds and have the same amount of joint damage as I do. My sister sadly passed away as a result of complications with meds. We have all had it for 20+ years. Maybe the new biologics work better, haven’t really heard. Treat the way it most resonates with you.

Debbie Arredondo
D

I'm 46, was diagnosed at 45. My doc thinks I was chasing the diagnosis for years. I'm seronegative...but all my non-specific inflammatory bloodwork was off the charts. My rheumy confirmed the diagnosis after an MRI of my hands. I've been on MTX since the end of November. Started to feel better around the first of the year.

Lynn Diamond
L

I'm Seronegative and on Methotrexate and Plaquenil. I was diagnosed 1.5 - 2 years after being on Clomid to try to get pregnant. Makes me wonder....

Jennifer King
J

My pain and exhaustion also worsen as my cycle nears

Jennifer King 3 years

Jennifer King same here. In fact, I was contemplating asked by about this because I’ve recently noticed that they seem to coincide. This month, the fatigue isn’t as bad but my pain is worse.

Cicely Godfrey 3 years

What made me notice my symptoms to begin with was my cycle. Full. Blow. Flare. Up

Sally Pickens 3 years

I just think I’m confused about this whole disease. So many people have arthritis. Yes in different forms and severities but not everyone who has it just goes on a med.
I have my appt on Tuesday and I’m going to try and understand it all better. I have so many questions

Melissa Hood
M

And for all of that posted I understand where you all are coming from! We are all different and I think you all are amazing. So many people have this. And if they don’t now, they will have some degree of it in the future.

Melissa Hood
M

I’m seronegative and my joint pain always flared with my menses. I took methotrexate for 3 weeks but stopped because it made blisters in my mouth and puffed my tongue.

Cindy Eastman
C

Funny because I always get blisters in my mouth now! And I’m tired.

Melissa Hood 3 years

My doctor told me to take folic acid to help prevent mouth sores from methotrexate

Christina Keith 3 years

I have seronegative and I am taking Plaquenil

Ashley Dennison
A

Yes, on Enbrel

Denise Stephenson
D

i hear you. İ don't buy the seronegative stuff, i can't believe i haver. A.. And i won't take that poison. İ'm getting acupuncture and feel better. İ'm getting second opinions.

Carol Caron
C

I tried all that, spent three years in denial. Now I have no choice but to try it. The pain is unbearable at times, the psychological part is even worse! Knowing you have no choice but to try it:/

Denise Stephenson 3 years

i'm sorry

Carol Caron 3 years

Denise Stephenson I totally get you. One week when I had a bad flare I cried every day and said I would try the med. I’m on it but I’m not sure if it’s helping! I do have pain, but not intolerable and sometimes none. I just don’t get the seronegative thing. None of my labs indicate that I have inflammation so I’m just confused.

Melissa Hood 3 years

If I did not take meds I do not think I would walk or use my hands. I tried stopping and it was very painful to move so I am eating healthier and trying to take some weight off. I like to exercise but can barely do it but I keep trying to at least walk each day. I thought I was alone with this so I am glad others understand also THANK GOD

Jeanne Silva 3 years

Melissa Hood I had problems for about 8 years and my Doc couldn’t find out what was going on, then I had so much pain in my knee I went to Urgent Care. Then I tested positive, that was the ONLY one, the rest are negative. I still and always will question the diagnosis. But I am desperate for my life back.

Denise Stephenson 3 years

I was seronegative. Diagnosed a year ago. Came on alongside menopause. I believe that menstruation provides a detox pathway and therefore menopause can take this away and trigger arthritis and other things. I am 99% better having used diet and other things. No drugs. Not taking drugs doesn't mean deformity as long as you change your lifestyle and put right that which has caused the problem. If you set out to get you will. Start with healing your gut (even if you don't know there is an issue there probably is). Turn your body alkaline and get rid of any bacterial or viral infections. Detox, eat organic where possible. Meditate, visualise and pray!

Lisa Nicholas
L

I have rheumatoid arthritis since I was 10 years old I am 55 .I use to use methotrexate injections but I had to stop taking my injections as I was getting chest infection a lot

Heather Vera
H

I am sero negative. Will likely go on methotrexate this summer. Have spent 16 years using alt treatments to avoid it. But alas, it may now be time.

On the bright side, my mother has advance RA, in minocin remission for 20 years (but still slight flares here and there). Ended up with fast aggressive breast cancer, so was treated with high dose methotrexate chemotherapy. Not only did it cure the cancer, but looks to have possibly cured her RA too.

I am just 45 years old.

As I read up on it, seems that most side effects are negated by folic acid and calcium supplementation.

Laura Ashley
L

I am 40 sero neg RA was on methotrexate until it made my liver stop working. At that point I tried diet and found some success no major flares for 2 years. I just have panadine forte for the headaches and aches that seem to come with winter stiffness.

Neyah Dudley
N

Hormones do play a significant part in RA pain as certain hormones cause inflammation in the body but it is still RA pain

Karen Gibbons
K