I Don't Understand Why Other's Have RA "Flares". My RA is Constant and Always Painful.

Hi

I'm sorry to hear about your pain- that's really tough. I don't know how helpful it is but I have AS and peripheral arthritis and have to say, my pain too, is constant. Like you, u don't have what I'd consider good days- just less bad days? I'm now on 3 rd biologic and 20 mg Mtx after having tried everything else - to no affect. Having said this, I do have visible damage . In the past 20 months, I have had both hips replaced, both knees replaced, foot surgery and now to have both elbows done.

My issue is, nothing is slowing the progression of disease down.

It's just such a difficult condition to manage, isn't it?

I wish you all the very best and hopefully, someone will be along

Soon to offer further advice.

I hope you haven't forgotten about D3 (at least 5000iu/day, K2 to assure absorption and high doses of vit.. C ( 2000-3000mg/day) These are both potent infection fighters.

It's strange... I read so much about all of these miracle herbs and supplements like CBD, borax, turmeric paste, black seed oil, curcumin, magnesium, MSM, etc. I've tried them all, including LDN. It's as if I'm taking nothing at all... no relief whatsoever. It's very strange.

A couple of thoughts from my own perspective... if you've never managed to get the disease under control then to me you are not flaring, but in a constant state of active disease. For me until I got the disease under some sort of control I was in permanent pain. However, eventually, it did calm down and it's only since then that I've had flares when my normally quiescent RA breaks out and creates merry hell for a while.

Also, I was originally described as having RF negative, anti-CCP positive and non-erosive RA. And for the first 5 years I had no signs of new erosions. However, last year one of my toes got eroded. For about two months I had an extremely painful, hot, bright red and throbbing toe which my GP dismissed as probably the beginning of a bunion. It was only when I saw the rheumy and she looked at it under ultrasound and told me it was eroding. Other joints have been painful, with or without a degree of swelling, for ages with no erosion so for me the only difference I could point to was that my toe felt amazingly angry - can't think of another word to describe it. Swelling alone doesn't necessarily cause damage I think, but only if it is due to synovial fluid washing around.

Even tho' you have a high anti-CCP it sounds as if your pains haven't followed the classic pattern of starting with the small joints of fingers and toes so have your doctors considered AS rather than RA? And if prednisalone does nothing for you then has fibromyalgia been considered?

But your position sounds miserable, so sympathy.

Hiya NFN. I'm so sorry you're in such pain, it must be very wearing. If you were already on meds I would say they're not fined tuned to your specific disease/severity but as you've delayed starting them I'd say please do, you'll have a good few weeks to wait to notice improvement but it'll be unlikely if you don't. If you've been searching online about MTX then you're probably concerned about side effects, it's a common thing to do, understandable even, but there's no guarantee you'll have any, or if you do for many they reduce or even go the longer you take it. I inject & I've just less appetite & a little more tired the following day (today as it happens!). I had some hair loss when I first started it but it was only noticeable to me & my hairdresser & the bonus is the regrowth is wavy so it makes my fine hair look thicker than it ever has. Also folic acid is prescribed to help replenish the folate lost (MTX is a folate antagonist), relative to the more common side effects, mouth ulcers & hair loss so if you're prescribed enough folic acid that should take care of those but it's so personal, what one person experiences you may not.

I appreciate you've chosen to try non traditional meds but they don't seem to be working. I think most of us would recommend starting your MTX, let it work on the disease for a good while, even until you're well controlled. If you choose to once you've experienced being controlled, attempt to go back to what's not working now if you really prefer to go the non med route. I don't know if you're aware how DMARDs work but they're intended to suppress your immune system because it's working overtime, but, MTX isn't overly suppressive, not as much as biologics for instance but it still works particularly in the early stages of the disease, longer term too for those like me. Did your Rheumy take the time to explain about it or give you a leaflet about MTX? If not maybe a read of this may be helpful nras.org.uk/methotrexate-in... It was written for patients in the UK so the folic acid dose recommendations may differ, I believe it's more common to prescribe 1mg tablets in the US but I think the rest applies. Or, talk through your concerns with your Rheumy, he may even suggest another DMARD, one you'll be more comfortable with taking. I started on hydroxychloroquine, then after that stopped working I went onto MTX, I'm currently on MTX & leflunomide plus NSAID & pain relief for OA.

Is your Rheumy working with you on your present treatments? Just wondering if he's questioning why you're not having drug monitoring bloods taken. You're seronegative, there is the thought that those diagnosed seronegative are less likely to have typical RD, the one we usually relate to, the more common seropositive, though they are treated with the same meds.

I've been on MTX nearly 8 years, diagnosed seropositive 9 & can count on one hand how many flares I've had, one enforced after a delay in a Rheumy reinstating them after returning to the UK from living abroad so I don't really count that one. I've just got over a mini one but I know that was stress related, brought on by the death of a close family member. As you're uncontrolled I wouldn't label how you are as flaring, inflammation is running riot because you've high disease activity due to you being non responsive to your attempts.

There have been lab studies to see if RD can be triggered by a bacterial infection but lab studies are very different from human studies so the jury's out for now, but there's info out there if you wish to search for them. So whether you've not got RD because if a bacterial infection I'm not sure but if you've been diagnosed with RD you've got RD, bacterial infection causal or not. Your Rheumy was thorough with his testing so I'd run with that & treat it accordingly.

That you had a high anti-CCP would indicate that you do have RD, though I think it's likely crossed the mind of many who are diagnosed that maybe they've got it wrong! It's a natural reaction so don't feel you're alone in searching for answers to your questions. The best person to ask of course is your Rheumy. He's the one who's conducted the tests, examined you & read the imaging.

Have you had a look through the NRAS site? The Your Stories section is particularly encouraging nras.org.uk

Take care & I hope you receive nothing but encouragement.

Hello needforname. I also seemed to be in a constant flare for over 3 years before i started mtx. My RA is finally calming down.

i understand you wanting to find a cause or reason for this dang RA. This disease does not make any sense so people "cling' to the hope of a reason, so they can be cured. I look upon it as "it is what it is" and I am very grateful for Universities around the world seeking a cure.

I too had dental work (3 root canals) less than a month before my RA symptoms started. When the the mtx kicked in, I noticed that I was feeling some tenderness and pain on 2 of the root canals. I remember complaining to my dentist about this pain and she shrugged it off....needless to say i will be having my #37 (lower molar) root canal extracted on the 8th of Feb because it is infected due to an overfill of gutta percha. I also am seeing an endodontist to fix the #26 (upper molar) root canal. I am having this root canal fixed because my dentist didn't fill one of the canal roots.

Needless to say my rheumy and doctor says that this dental work will help keep my RA controlled along with the mtx. i really want to believe that I've been misdiagnosed with RA, but only time will tell.

My advice to you is to keep seeking the reason "why you got RA?" if this helps you, but don't disregard the dmards that are offered to you.

All the best

Sue

I hope the University of British Columbia will be writing a paper on me, just like the University of Amsterdam did on another RA victim...Here is the link of the University of Amsterdam on root canal extractions and RA

ncbi.nlm.nih.gov/pubmed/121...

I can't advise on whether or not you should take methotrexate or continue with your LDN-and-turmeric alone journey. I read up a lot and see many who have chosen this course and I can't say that that many have found it the miracle that the alternative gurus such as Mercola suggest. If your constant pain is due to Fibromyalgia then this route might well help though and nothing else can sonnothing to lose.

The mind is a powerful tool and if you believe in a treatment then it can help a lot. I tried T3 for my Hypothyroidism last year ab felt amazing for a few months until palpitations took over. Then an NHS endo put up my Levothyroxine and I realised this was what I'd needed all along as successive GPs had lowered it. T3 was just a placebo at best.

I'm now as sceptical about the alternative gurus and their financial vested interests as I am about Big Pharma tbh - although I'm also as open to other possibilities. I take great care over what I eat and drink these days.

But having a high anti-CCP as you do is a fairly specific indicator of RA - and if yours is mainly affecting your larger joints currently then perhaps you do have some experimentation time? But equally RA can do damage very rapidly and aggressively if it chooses - so it is a risk as you know. AS is usually very responsive to steroids I believe and also to physiotherapy/ targeted exercise such as tai chi.

I was wrongly diagnosed with seronegative RA over five years ago. It seems I actually had primary Sjögren's and possible Scleroderma - the latter has yet to be confirmed but the Sjögren's is a certainty. My bilateral joint pain (non erosive) of a few years was Sjögren's mimicing RA it seems. I found that taking AdCal D3 had helped and haven't really had repeat flares of joint pain since starting this and taking methotrexate for a few years - who knows which one helped most - maybe it was a joint effort? .

I do have root canals and about 6 fillings - mostly very old. Sometimes I let paranoia about these get to me - especially as I had several bouts of severe alopecia and many allergies and eczema when I was a child and younger adult and a lot of dental issues throughout my younger years. In fact I have an appointment with a very good oral consultant (the one who ordered my lip biopsy for Sjögren's) in a few weeks time to discuss this.

My thoughts are that I also had a permanent rash around my mouth for much of my childhood and younger adulthood. Now I have telengecstasias where the rash was and burning lips and gums and permanent sensation of crushed mouth . So I have good reason to make this connection between amalgam allergy and autoimmunity.

But all this said, there are other historic explanations I can find that could equally be the reason I now have several autoimmune diseases. And removing dental work carries it's own risks I believe. And if I spend fortunes on getting them removed myself - money I haven't remotely got - only to find that my Sjögren's worsens or triggers Lymphoma - then I'll feel like a prize dork!

So I am now on a 5th DMARD - an immunesuppressant called Mycophenolate. I tried most of the others including methotrexate (2 years) but had too many adverse reactions and severe allergies to make any sustainable. By taking another strong immunesuppressant I know am putting myself at an increased risk of Lymphoma - and with Sjögren's as my primary disease my risk is already significantly higher it would be with any other autoimmune disease. This is why most people with primary Sjögren's aren't usually offered DMARDs apart from Hydroxichloraquine. However I'm tolerating it very well so far - 9 weeks. Still living with constant neuropathic pain though which is draining. But these drugs take a while to work and I'm on a five month trial so we will see.

I choose to live well in the present rather than worry too much about the future. I'm a pragmatist and I don't want to wait and find Scleroderma rearing its head as well - and the pattern of my positive ANA suggests that this and Polymyositis are both more likely for me than other connective tissue diseases. I don't want my kidneys, liver, lungs or heart to be damaged by Sjögren's or Scleroderma either. They aren't yet involved but my nervous system and brain is.

I have OA and severe widespread peripheral neuropathy - which affects a lot of my body now. I also have autonomic issues and some small vessel disease of the brain. As I can't tolerate any of the symptom treaters or other DMARDs, I fear the consequences of being awake most of the night in pain more than I do Lymphoma - which is usually quite a treatable cancer. Basically I am more concerned about the long term effects of living with a rampantly overactive immune system and high levels of inflammation than I am about other stuff. My life, my decision - based largely on genetic factors..

I also have GI issues at both ends and problems swallowing and now some swelling and pain in my salivary glands, small and large and very dry eyes - all strongly asociated with Sjögren's.

I listen hard to my specialists - neurologist and rheumatologists (mine retired) and ask questions. I then make pragmatic decisions accordingly. I do choose to rely on conventional specialists over Mercola etc although I've had my share of rubbish ones. They see all this stuff day in day out at the coal face and their experience, knowledge and instincts are important factors in the equation for me. And they aren't going to make more money from me if I follow their advice.

I hope this helps a bit.

Twitchy

Hi NFN - I think when I talk about a flare, it is because no matter how much constant pain one has, there are periods where the pain is much worse. The two worst flares I had were in my hand and one in my foot, and both times I was red and swollen and it felt like I had broken a bone. I would have sworn that I had a break. Now that I am better, my flares are much less dramatic.

To answer your question, yes it is entirely possible for you to be dealing with other things, and it sounds like your RA and pain are not very well controlled. I would suggest that you talk to your Rheumatologist or GP about how bad you are feeling...

Here's hoping you get some resolution soon...

Needforname. I was diagnosed in 2013 with it. I explored all the side effects of the medication. One thing that kept coming up was cancer. I told my doctor that in my family cancer was big time high. His reply was " none of my patients have gotten cancer. I went on Methotrexate that made me sick and then two other medications. with in 7 months I had nodules all over my lungs. I then in 2014 I was put on another medication. 7 months later I had skin cancer. In Aug 2016 I was put on another medication. It got rid of the pain I was very sick for 4 months and 5 months later They found another nodule on my lung and I am having a biopsy on it. It is the inflammation you want to keep down that is what cause's the pain. I get aggravated because I see where these meds work for other's and not for me....lol If you find a diet that works let me know. Get a doctor that listens to you. Good luck with this...Danna

Hey needforname, I know you ccp is high. Here it would be considered 1.6 which is high. These are my readings since 12/12 3.3 0.8 3.7 1.0 1.5 2.81.1 1.3 1.1 3.9 1.5 1.9 2.8 2.5

it has been normal twice. since 2012. Name

RHEUMATOID FACTOR - IGM,SER,QN

Standard range

<14 IU/mL

one test in July 2012 was 195 and in May 2016 it was 596. There is a test that shows if you have RA but I can't remember right now. RA is a CTD so you could have other CTD's The one thing is that they are all so close together in how you feel. Have them check to make sure. I know what you mean by constant pain. Just a day with no pain would be great. I find days I feel good I over do it and I am worthless for 4 days. Maybe we will come up with something natural with no side effects.

I am the same i dont have flares when asked how long i am stiff in the morning i always reply that i am always stiff you are the first person i have heard saying that thought it was just me x

I see you've gotten a lot of replies & am going to be lazy & not read them! I generally feel well or unwell and most of the time I am unwell, it's for up to a year at a time. I have read people say "I had a flare so spent the day in bed" but that is not my situation at all. I basically force myself to participate in life while feeling awful (Moms don't get sick days lol). But then I'll have a year - sometimes longer - of feeling great. Looking forward to the next one!

Sorry needfornoname but what's LDN?

Hi,

I'm a little late seeing this post, but I am currently using diet to control my RA and thought I might share some things that have helped me, just in case they might help you! In the end, I truly spend much less money managing my pain through a careful balanced diet, as I don't take pain medications any longer. I also have the advantage of living in the Netherlands, where cannabis is legal, so I use this for pain as well.

Since the start of my flare, I have not had a single day that my left knee was not significantly stiff, swollen, inflamed and full of fluid. And also, needless to say, painful. Some days the pain is better, or at least not constant. Meaning I only feel significant discomfort when I get stuck in one position, or do something that would normally cause it pain (walk too quickly, lean too long, turn knee, etc). Through my independent research, I have found that the signs that come along constant flares can signify that the type of RA is more aggressive than others. I try not to dwell on this too much, as in my eyes, living in a healthy, balanced way with as little stress as possible will be helpful for everyone living with RA.

Now to get to my pain killer foods! Without fail, if I eat a big bunch of fresh parsley, about 1/2 cup, mixed in a salad or in a juice or smoothie, within 45 minutes my pain is as close to gone as it can be. Same goes for a glass of fresh cold pressed pineapple juice, or I assume a pineapple smoothie.

As unfortunate as it is, for me, what has truly helped me in every way (energy, appetite, digestion, sleep, etc) has been eliminating gluten, dairy, red meat, bad fats, and acidic foods (citrus, vinegars). Without fail, each time I slip up and eat one of these foods, even if it's just a tiny tiny amount, the next day I wake up in pain, with my digestive tract angry with me.

This may seem extreme, and I do take supplements and eat a careful specific diet to ensure that I am getting the correct nutrients (supervised by a nutritional therapist) but in the long run, the prospect of healing is much greater when you are taking care of your body as a whole, starting with what you put in it!

Hope this helps. Hope you find relief soon.

I have psoriasis which has turned into psychiatric arthritis an now I have syatica I've been on so many medications from folic acid to medtrexiate injections An loads of other medications which I would tell you but can't get up as I'm in to much pain pa it's amazing how this stupid f------ psoriasis has ruined my life an as a result I'm on medication/steroids injections for the rest of my life An having to use so many different creams An tablets each day an everyday for the rest of my life which stop working after awhile as psoriasis affect your Amun system ps it's incurable too yay

Is your user name "Need for Name"?? I doubt it - but I put it here so you'd see this if you're following. This reply is for you and for everybody. I wanted YOU to know I'm chronic also. If anyone has a theory about what's wrong with me, please let me know.

You sound like me!!! I haven't been formally diagnosed with anything but have seen the Rheumatoid Doc and many Neurologist and other fields of medicine. I have NO diagnosis but not for lack of trying. I honestly don't know where to go now (after 2.6 years).

Being a user of insulin, none of the doctors want me on a steroid. ** I was bitten by a tick 7 months before my whole body pain and stiffness developed. I have been tested with numerous Lyme tests.(negative), but many are false positives. I never heard of the test you speak of.** Also, the night BEFORE I developed this acutely on my left side, I pulled as hard as I could (straight left and right) to separate 2 pipes. 12 hours later my left side went "out" and I was semi-numb. 14 days later my "right" side went "out" and the right side became semi-numb. ** To confuse matters more, I had 3 vaccinations - 25 days before this (semi-numbness turned to pain).A lawyer convinced me it was vaccinations that caused this so I wasted a year following that theory. Heck, she may be right!! She totally convinced me at the time that that's what caused this. No doctors here in the USA would "buy" into that theory.

The pain is chronic and has gotten steadily worse as time has gone by. I have the tick bite -the vaccinations -the pipes I pulled -and possible PMR to confuse everybody. It has almost gotten me physically about "down". What is really bothering me too is the mental aspect. I know that you know what I mean. ** My diabetes gives the medical people a convenient "out" and they jabber on and on about peripheral neuropathy. I go 65 years with NO diabetic issues and overnight I develop that?? I know it can happen, but my gut instinct is "no". Actually I thing it's an entrapped nerve. After 2 1/2 years, if I had to bet, that's what I'd put my money on. I felt the muscles wrap around a "grab" my spine when I pulled the 2 pipes left and right. It scared me so much I just dropped the pipes. That was 9:30pm. This hit me at 9am the next day!!

Not to be too repetitive, but 14 days later my right side went out overnight. It was precisely and exact. When I say left and right, it was left then right.

I just wanted you to know that there is somebody that's chronic; not 1 second of normalcy in 2.6 years.

You are one tough person to have endured this mess for 14 years. It sounds as if you aren't positive of the real reason either!! God bless you, you deserve an answer!!

The Doctors over here want to call mine "conversion disorder". I'm about nuts from all this, but it ain't in my head (conversion disorder)

I'm too stiff to exercise -such as walking. I finished 34th nationally in the marathon in 1974 in 2 hours 36 minutes. Today I can't walk a 1/2 mile due to the stiffness. I'm almost 68 and fortunately other than diabetes I'm reasonably healthy.

I do fear the lack of exercise and ongoing depression over this mystery is going to get me.

Somehow I'm able to have a positive attitude to work effectively, otherwise this whole "thing" really gets me down. The immediate family really suffers because they've lost "me" to a large extent. I can't "fake it" because I can't do anything - like playing with the grand children etc.

I don't want to do anything or travel because I can't do anything but "grin and bear it" at best .You have to know, wherever you go or whatever you do, it's there.

I am totally cognizant that it's totally unfair to my lovely wife too. If I were her I think I'd leave me because I offer nothing but paying the bills. As a self employed person, I worry about being able to perform at my work. We'd be on the street if I didn't or couldn't work. I know that sounds highly negative - but it's real. Thus far I've made myself do what I have to do, but the point is, if it gets much worse, I won't be able to do my work even trying my hardest. It's very real.I had over 600,00 you tube hits of me playing the piano. I can't play anymore because my hands are so stiff!!

I work with people that have gained disability due to their issues. There's many I wouldn't trade places with. I don't see how they carry on. Hearing their story gives me strength. If they can manage with a problem worse than mine, I can do it to. Also I think my problem helps me empathize with their situation. I try to find a positive wherever I can and I try to be of true help to people. I feel guilty that I gain mental strength from their problems, but I do.

I hope you find out "for sure" what your problem is and are able to reverse it. Just know this guy would love a "lapse" every now and then too.

Does the turmeric help?? do you know if anything helps that not a steroid?? Ha, here I am asking questions and I don't even know for sure (not even close) what's wrong with me.

Any suggestions as to what kind of diagnostic test could help me would be welcomed. Naturally I've had an MRI, but it was clear. Therefore they don't want to do a myelogram. I've had Nerve Conduct test out the wazoo. They show small fiber neuropathy and also large nerve fiber involvement. The Doctors tell me the SFN couldn't cause what I have.

I feel like life is passing me by and I need to make something happen!! My problem is that I absolutely don't know what kinds of doctor to see or what to ask for. I've been to probably 30 in the last 2 1/2 years. 4 hospital systems too.

Everybody just stares now because they've got over 600 pages of records and flat don't know what to do.

This mess had tanked my shoulders, lats, arms and hands and has caused constant squeezing of my torso. The hands are super stiff and have been from Day 1 on the left hand and Day 14 on the right. From Day 1 my knees got stiff. It skipped over my thighs and went from my to flexors to my knees.

Now it affects me from my shoulder level all the way down through my knees. the thighs feel totally wrecked and hurt like the dickens ( as everything does). I am semi numb everywhere too.

No strength (noticeable) has been lost either.

I'll hang it up for now. I've been wanting to write this for 1/2 year but just didn't "have it" in me to sit down and write it.

Thanks to anyone that read this; all suggestions are welcome.