Seronegative RA in remission

[Staycalmandcarryon]

It's coming up to a year since I was diagnosed with seronegative RA. The good news is that I'm in remission. That doesn't mean I'm symptomless , I wake every morning with stiffness in both hands, my feet are often tingly and numb and I can get tired quite easily. But the pain is gone and compared to where I was at the start of the year I never thought I would get here. I still take 2x200mg hydroxychloroquine daily but no more prednisolone and no more meloxicam. The reality of RA is that when it goes it usually comes back. I know sustained remission is rare but I'm sure going to enjoy it while it lasts!

[Downtime]

Good for you! I'm séronégative RA too and not too bad at all most of the time. There's certainly no comparison with how ill i felt at the start. I'm on Mxt and i do take anti inflammatories when needed, also steroid injections.

[Nettac]

Really pleased to hear that! Excellent, enjoy every minute.

[Paulajolo]

I too seem to be OK after 18months of agony. Just like you its my hands and feet. I am on Humira and reducing the prednisolone. Enjoy the relief hope it lasts a long time for us. X

[stbernhard]

Hello, I am very pleased for you and hope that you stay in remission for many years to come. I'm in my 4th year now. I still have to pace myself and do my regular exercises. It's easy to get a bit complacent and do too much and then pay for it. All the very best.

[Hidden in reply to stbernhard]

yeah - that "I feel great and can do anything" is a pitfall - ha ha. I fall into it frequently. Then pay for it later...

[Lizzy-m]

I am very pleased to hear this. Enjoy it whilst it lasts x

[meanoldtomcat]

Congratulations on remission. It's nice to hear that some people do have success on the meds. I've yet to get any relief. I tried the plaquineil but was allergic to it. Now I'm on week 6 of my mtx along withprednisone. Only thing I've noticed from mtx is hair loss, skin problems & sores in my mouth... But maybe soon I'll see some relief. My drs haven't given me anything to help with the pain... Only thing I get for pain is a run around bout which Dr is suppose to prescribe it. I stay in constant pain which caused me to have to miss alot of work& I ended up getting fired a week ago even tho I've had fmla. Does anyone know if that's even legal?

[Hidden in reply to meanoldtomcat]

It sure doesn't sound to me like that is legal. There is a group that can advise you legally in the UK, but I don't remember their name - CAB maybe? I know someone else can advise you...

Also, it seems like come Folate might help with the hair loss (at least it did me).

[mags8 in reply to Hidden]

Hi it is CAB. Citizens Advisory Bureau. They are excellent.

[Hidden in reply to mags8]

Ha ha - Thanks!

[nomoreheels in reply to meanoldtomcat]

Each of your symptoms are typical of lack of folate MOTC. What dose of folic acid are you taking? What pain relief your doctor is supposed to prescribe for you?

As you're in the US I'm afraid I don't know where you'd go to for help about the legality of being fired from your job under the FMLA law (this forum is UK based) but we do have other members from the US so maybe if you start another thread requesting help from them about this subject you'll receive responses.

[Simba1992]

Congrats, must feel good😊I am beginning to think that you seronegatives have a better chance of remission, that seronegative in fact can have other underlying dysfunctions than seropositive. Fixing thyroid dysfunction combined with right diet and supplements have helped many seronegatives to be symptomfree.

[ariel1973 in reply to Simba1992]

Simba1992. My onset coincided with thyroid issues and I had a brief relief when I was overmedicated bit since Oct 2015 severe daily pain . I currently have no hope as it has been severe pain for 2 years (30mg predicted gave me 1 good week 18 months ago). You just gave me a hope that if I can get the thyroid sorted (blood tests don't show issue), maybe all isn't lost that I may get sone relief... would you direct my reading anywhere else?

[Simba1992 in reply to ariel1973]

The thing is that if you have thyroid dysfunction which is common in RA it does worsen with corticosteroids, and goes often hand in hand with estrogene-progesterone imbalance with estrogen dominance which worsen inflammation and pain. Check this out. Natural progesterone supplementation is safe and has only possitive effects. Important is that you find an endo who has expertes on thyroids. You might be interested in what an expert has to say on thyroid dysfunction and its treatment.

raypeat.com

Just put thyroid dysfunction in the search box and you will get very useful information. Good luck👍🏻😊 Simba

You can also check your basal metabolic rate. Which you can do at home and will in fact give you valuable information of how your body is doing and what eventual dysfunctions could be addressed. You'll find needed info on Ray Peats site but also elsewhere if you google.

[helixhelix]

What good news, I hope it lasts for you so look after yourself well to give yourself the best chance. I'm 6+ years post diagnosis and am in remission most of the time, although currently having a bit of a blip.

[Hidden]

Yes... I've been in remission for about 9 months as well, and you are right.. Still stiffness and some pain in the morning, still tired. But no deforming and I can walk well and even do some hard work in the flower beds for a couple of hours at a time.

Congratulations and I hope it lasts as long as it can!

[Sammicat15]

Well done to everyone who has achieved a measure of remission. Don't take it lightly and enjoy what you can.

I've had reactive arthritis for 20 years. It took over 15 years to get my inflammation levels down to low readings after years of high ESR readings. As baseline I was on NSAIDs of varying kinds (including Vioxx which was withdrawn from the market for being too risky). I worked fulltime until 2010, when I finally ground to a halt like a rusty robot.

Despite low readings nowadays, without Naproxen, the pain escalates quickly and I seize up within 48 hours, climbing the walls with discomfort. A brief Naproxen holiday each year confirms the need to still take it, along with the blessed Omeprazole to keep the dreaded reflux at bay.

Was also on that horrid chloroquinine stuff initially (adverse reaction), then moved to sulphasalazine for a year. Neither made any difference to the RA, so my medics kept changing meds. They couldnt get my pain under control and 10 years in, finally diagnosed me with the sister condition of fibromyalgia as well. Then it all made sense. So I went on various meds for that too. It took from 1997 to 2015 to get my pain levels manageable. I went to the edge of the abyss in that time.

"Pacing" is the key word in life - ironic, given its mobility connotations! However, now I run a market stall once or twice a week, depending on mobility, so frantic pacing is what it's all about, and gritted teeth to get through the challenges. After market day, I slump and recover for 2 days. It's progress, given the state I was in 2 years ago, some 4 years after having to give up fulltime work due to ill health and needing 3 operations.

It has needed patience, tolerance and a huge amount of down time to reach a static, manageable stage. I relish every day I can move about for particular chores or events. I try to be pragmatic when plans go awry. I have also learned that being kind to myself is nothing to feel guilty about, so doing sit down tasks or nothing but catnapping is ok too, because being in constant pain is damned tiring.

[Hidden]

Long may your remission last!!!

[Coppernob]

Very interested to read about seronegative RA as I suspect I may well have this. Certainly riddled with inflammation and painful joints. Also APS, Sjogrens, hypothyroid. When I next see my Rheumy, what tests should I ask him to do? And what tends to lead them to conclude seronegative RA rather than dismissing it altogether? Thanks.

[nomoreheels]

So pleased for you & thank you for posting! It's understandable when reaching clinical remission members are so busy getting on with their lives they don't report back with positive news but it's lovely for us to hear, also especially for newly diagnosed members to see it does happen. I hope the stiffness in your hands eases, maybe ask for some exercises, the feet may need some help, sounds like neuro involvement so do report to your Rheumy if it worsens.

Thanks again for posting.... long may it last! 🤗