Hi everybody! I am new here and also quite new to RA. I was just diagnosed July 1, 2016. I had joint pain that moved around for 3 years but I just chalked it up to sleeping wrong or something, only because I'm 30 (this started when I was 27) and I didn't even know what RA was.
Well, the joint pain took a drastic turn in May and I was in constant horrible pain so I finally decided to see a doctor. At the same time, I developed peripheral neuropathy which is still spreading like wildfire, started as cold feet, turned into numb toes, and now my hands are always freezing and my skin burns everywhere. Ok, but back to the RA...
My rheumatoid factor was at 113 in May (probably higher now) and my anti-ccp was positive at 24 (apparently anything over 10 is positive?) also, elevated ESR and CRP, but Negative ANA. And of course I am iron deficient anemic. Anyway, rheumy started me on MTX. I have been on it for 2 months now and my RA is far better and I have little side effects. I just saw my rheumy last week and she ran some blood panels for Sjogren's and a few other autoimmune diseases that could result in neuropathy because she doesn't think the RA is causing it (no vasculitis)
Interestingly enough, my ANA is now positive at 1:320 (homogenous) but everything else was negative for Sjogrens, etc. My rheumy still doesn't know what is causing the neuropathy and is telling me the positive ANA "can be seen with RA" but when I google anything about it, all I see is that it's commonly associated with Lupus.
So, if you're all still reading this (sorry!!) I am just massively confused. Why would my ANA shift to positive now? I feel like something else is brewing. Does the positive anti-ccp absolutely confirm RA? It isn't possible I have Lupus and have been misdiagnosed with RA, is it? The only reason being I have read that neuropathy can happen with Lupus. But I honestly don't have the pain portion of Lupus. I don't have the dry eyes or dry mouth of Sjogrens. I'm not diabetic. I don't understand this neuropathy but it is worsening and it started when my RA reached a new level of terrible over the spring.
Does anybody have any light to shed or possible ideas here? I don't think I really understand what these blood tests mean and now I am just so depressed ever since my ANA shifted to positive because I can't find much of anything that confirms RA would result in a positive ANA.
Thank you!!
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karilynn85
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Sorry that you qualify to join our merry little band but a huge welcome.
Re the med questions.... Sorry I've not been home long from a day's teaching and my brain has shrunk into RA fog mode... I'll read your post again tomorrow and hopefully will have something useful to add to the more informative replies that you will undoubtedly have got over the next 12 hours or so!
All the best
Ali
Hello welcome to the site. From what I understand from my rheumy is that Lupas and RA are very closely related. A rheumatologist can tell the difference between the 2 diseases. Sometimes you can have both Lupus and RA called Rhupus.
I know you are confused at the moment. Take a deep breath and try to relax. Let your doctor take control until you are able to digest all this information.
Hi and welcome, I was diagnosed in July 2015. Like you, I had very high RF and my CCP Cyclic Citrullinated Peptide was 300. Anything over 250 is indicative of very severe RD.Rheumatic Disease. I also had positive Nuclear AB. This is generally indicative of a connective tissue disorder. RA is clearly a part of the picture. The issue is that you can have multiple autoimmune conditions at the same time. They are not, unfortunately, mutually exclusive.
The other challenge is , not two people are affected in the same way. It will be a journey of discovery. My heart goes out to you with a solid hug. It will be much easier to have this group as support. There are many sites for people with similar conditions or similar drugs. There are fantastic discoveries made everyday. The fact that you responded well to MTX is awesome. Keep looking for comorbidities, other illnesses, pay particular attention to cardiac health. I have a fantastic Rheumy, I am truly blessed. I went at the very least ten years without a diagnoses. The odds of remission for me are very very slim. I have gone through four DMARD's and two Biologics. Now on a drug holiday. I rebelled and decided to purge my system and start fresh. She is completely supportive. The other benefit is when she wants something done, like biopsy, it gets done emmediately. She is the bomb. She calls me at home regularly, she has had enough experience with me to know how well versed I am in all my conditions, genetics and treatment options available. PLEASE REMEMBER, it is your body. No one is better equipped to know how you feel. Trust yourself.
Thank you everybody for the replies it feels great to find this community of people who know how I feel. I've lost countless friends in my life over the past few months because they either think I am making stuff up for attention or they simply don't care. I think it's hard to find support from people my age because they just don't relate. I feel terribly alone and scared. I feel like there is more than just RA wrong with me and I sit up at night having panic attacks because I feel like I need to figure it out or nobody else will. I've never been very good at being proactive and fighting for anything. I mean, shoot, it took me 3 years to see a doctor about my joint pain because I couldn't be proactive enough about it. Or maybe I was too afraid to know. I don't even know who I am anymore and all of my plans for my life seem really pointless now. My life feels like it's over at 30. Sorry, this is so depressing. I just have nobody else to talk to about it because my mom gets too overwhelmed by it and then she sits and worries about me. Thanks for letting me talk about it
We full understand how you feel because we share the same painful disease. However, you need to work very closely with your rheumy and do not just listen to anyone for supplement and skip your medication, you will be in better position to achieve remission. Please do not give up.
I was diagnosed of RA in end Jun 2014, I am in remission right now form about half a year already. I hope below link can help to inspire you to look forward for your normal life again.
Also, I found 2 very good videos with very organized information of RA for RA patients to understand what RA really meant and the respective treatment available in the market.
Hi - I'm rushing through this post a bit because my eyes are useless just now, but just wanted to say hello.
I have a very diffuse form of peripheral neuropathy that has severely affected me for about four years now - although it started prior to my RA symptoms and was assumed to be part of my seronegative RA for a few years - so was dismissed until it became too painful to bear. Now it is mostly just numb and tingly in my arms and legs and face. I think I might also have Dysautonomia.
The RA was successfully chased off by 4 DMARDs and steroids, but my other neurological symptoms came flaring back and I pushed hard to be referred to neurology. Like you I knew something other than RA was the cause of my neuropathy and even then I suspected that Sjogrens was the cause.
Last year I was given all the big neuro tests from brain MRI to lumbar puncture. Something showed up in my spinal fluid, paired oligloclonal bands - showing a systemic process was occurring. My ANA was only equivocal and then, a year ago it was negative, so new rheumy dismissed the idea of my having a connective tissue disease entirely - especially as my Schirmers test was okay. So I looked elsewhere for answers (endocrinology, oral medicine for burning mouth syndrome) because by this time I knew enough to be quite sure that my high ESR and CRP and these paired bands meant something was occurring beyond RA in remission.
I moved again and at last, about three months ago, a new rheumy took on my case via a registrar. My ANA came back at 1:320 - Nucleolar pattern which is unusual and usually signifies Scleroderma. Also high IgA and IgG. The new rheumy said that small fibre neuropathy is rarely found in RA but certainly not serognegative RA -so he referred me for a lip biopsy for Sjogrens. This came back a very high positive and I've just been rediagnosed with Primary Sjogrens and am waiting to learn if I may be one of those with SJS who has Lymphoma - because of strange symptoms and stuff he saw in the lip biopsy result abs a swollen gland in my groin. Also, because I suffer from a kind of dizziness now that is described by neurologist as disequillibrium (I feel out of kilter and lose my bearings and balance when walking, if I turn my head) he wonders if I may have a rare but well documented type of Sjogrens that is affecting my central nervous system now. It could be that the small fibre neuropathy is affecting my proprioception (signals from feet to brain).
I do still have very painful knuckles with mild swelling and very stiff joints every morning but the rheumy wants to make sure that I don't now have organ involvement before deciding on new treatments. Could be chemo plus Rituximab if I have Lymphoma but otherwise maybe Rituximab anyway. Or if no organ/ brain involvement found the only option remaining for me would be Mycophenolate. Unlike the last rheumy this chap says he thinks I probably have some Lupus, Scleroderma and RA secondary to the main disease which is Sjogrens.
Sorry this is a ramble about me but I hope it helps you. I have had a long journey to get to where I am now but I post here sometimes in case it helps others with neurological symptoms as part of their rheumatic disease.
It's worth reading the ARUK page on Sjogrens too.
"People with SjΓΆgrenβs syndrome often have very high ESR levels regardless of whether they feel well or ill. In SjΓΆgrenβs syndrome, the ESR or other measurements of inflammation such as C-reactive protein (CRP) aren't very useful in assessing how active the condition is β unlike in lupus or rheumatoid arthritis."
Here's another very good link that night help you if you think that Sjogrens might be a possibility. I do have Sicca and very dry nose, trouble swallowing and bad bowel and gynae problems but not enough to warrant the sjogrens diagnosis by themselves so the lip biopsy result was indispensable!
Thank you, that was very helpful. I just messaged my rheumy and pushed for more Sjogren's testing. I refuse to lie back and let this happen to me without fighting for myself. I was sitting here crying and thought forget this, if my rheumy isn't going to be proactive, then I can be and if she isn't on board, I can find a new one.
Hi I was reading your response and thought I'd say something I am new to this site , but I was diagnosed with primary SjΓΆgren's syndrome since 1996 I am now 60 at the time of my diagnosis I was in my thirtys and it hit me hard , I thought my life was over years later I started getting major balance problems and wasn't sure if that was connected to the SjΓΆgren's syndrome after reading your message I'm thinking it could be thanks
Please don't cry it will be okay I'm sure. My rheumy sat on his backside for four years telling me I had non erosive but complex type of RA. I sought a second opinion through my gp but he was in same hospital and just confirmed same diagnosis of RA - only explained it a lot better and added sicca and Raynaud's but ruled out lupus.
I went along with this for another year and at the other guy's advice my own rheumy agreed to let me try Azathioprine last year. Within three days the neuropathic pain disappeared - which my rheumy said wasn't possible - but by then I knew from lumbar puncture result and high inflammation levels that I had some form of inflammatory neuropathy.
I joined NeuroTalk forum and Sjogren's World forum and read all about this neuro type of Sjogren's.
I've had dry eyes all my adult life and really bad teeth so felt empathy with this disease, regardless of whether mine was primary or secondary. Then I was hospitalised twice with Aza induced pancreatitis so had to stop. I sat in my hospital bed in May last year sobbing my eyes out when they finally took me off Aza because the nerve pain was so terrible once I was off it.
Of course, after having previously had allergies to Sulfasalazine, Hydroxy and severe GI problems with methotrexate, he decided that it was better to leave me untreated and "simply see where this goes".
So I relocated after an awful year with pneumonia and sepsis last year on my remote island home - but the next rheumy (supposedly with a special interest in Sjogren's) in next hospital was an obnoxious twit and hinted that I had multiple myeloma - but certainly not lupus or Sjogren's.
So now here I am 8 months later - incontravertably diagnosed with a disease that feels like the one I believe in. Perhaps if I'd had this diagnosis earlier on I would have not had the worry of lymphoma and CNS problems now -who knows. There is so much ignorance about Sjogren's - even amongst rheumies and neurologists. The two neurologists I've seen have been more useless than the rheumies!
And unfortunately my new rheumy and saviour is retiring next month. But I have my diagnosis now with brilliant oral consultant 100% sure too - and am being thoroughly investigated and monitored at last so that's the main thing.
So you keep on pushing until you get answers - learning to be proactive is a good life skill to acquire and at 30 it's not too late! X
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Ps and you will make new, wonderful friends through forums such as this. Some of them might even become friends in the flesh as has happened to me. So ditch those who make you feel bad please - there are plenty of warm hearted people out there and on here.
Hi there. I too have neurological problems. I was diagnosed aged 29, way back in 1978 and have survived! I have 2 gorgeous children, and have worked most of my life...took early retirement at 60, and although there were things I had to give up....skiing and squash and tennis...there have been other things I can still do...Pilates, yoga, swimming, cycling.....so life has still been good, most of the time! And I've had demanding jobs with quite a bit of travelling.
But my neurological symptoms have only developed over the last 10 years or so, and like Twitchytoes, I think they are Sjogrens related. I have had dry eyes probably since before the RA was diagnosed. The burning feet drive me mad, especially in warm weather...and I have numbness...and my skin is hypersensitive....all very peculiar....and of course nobody else can see it or understand what it's like.
How do you know you don't have dry eyes? Have you had any tests done? I had problems with wearing contact lenses, long before I was diagnosed by an ophthalmologist, which I now think probably means the problem was there long before I was aware of it.
The other thing I have done is to explore other ways of fighting the RA, like changing my diet and using complementary therapies. Can tell you more if you're interested.
I think it is also worth pointing out that you can have Sjogren's as your primary disease (ie the disease that comes first) but then acquire RA or Lupus along the way. Primary only means the first disease, not necessarily the most severe.
Interesting! Thank you both for your super sweet replies. Means a lot that you've taken the time. I honestly don't know what came first because when I was like 18, the toe next to my big toe went numb on both feet and have been numb since. I never thought a whole lot about it and it never bothered me. I'm thinking now the neuropathy started ages ago in that minor instance. I have had muscle cramps throughout my twenties, along with sharp little stings all over that I jokingly would say was an imaginary bug. Things are coming together now.
My eyes are not dry, I honestly don't believe so anyway. I cry all the time. My mouth is plenty moist, my teeth are good, I've never been dry... anywhere... and I have never had swallowing issues, etc. I'm not saying these things won't pop up at some point in time. For right now it's the neuropathy... the burning, tingling, numbness. My skin feels either ice cold or furnace hot. My skin feels like I'm wearing a layer of damp cloth, just about everywhere. I guess now I am just waiting for the numbness to spread from my toes and take over. My lips burn, my tongue burns, my face burns, my hands burn, legs, arms, etc. you got it.
You poor soul - I know exactly the sensations you are describing. I can only reiterate that my eyes are fairly dry - at times I've scored severe Sicca score with my optician using a Rose Bengal tear break up test which is thought to be more reliable than the Schirmers. My teeth were lousy when I was younger but this may have been unrelated to the Sjogrens. Neither my dentist nor my optician have thought I could possibly have Sjogren's. Two oral consultants told me they thought I must have MS.
The British Sjogrens Syndrome Association magazine earlier this year focussed entirely on the neurological aspects of this disease. This is where I learned that dry eyes and mouth can come on years after the neurological symptoms of Sjogrens for some.
And as for Lupus, this is called the great imitator because it can mimic other diseases and no one person has exactly the same presentation. So hang in there and try not to panic. Many of the drugs are the same anyway including Methotrexate, and your rheumy may well be right to watch and wait as your RA is seropositive. But if I were you I would ask to be referred to a neurologist as soon as possible because this way you get a different perspective from a different specialist while getting your RA treated as well.
I'm assuming you've had your B12 checked for pernicious anaemia - an autoimmune disease which often causes peripheral neuropathy? If not or if your results aren't resoundingly high it may be worth trying some B12 tablets - ask your GP. I take this because you can't OD as excess is shed naturally. Methyl B12 by Jarrow is the most reliable I'm told and they taste nice. But check with your rheumy or GP first of course.
Thank you I've seen a neurologist, twice. She was useless. I had an EMG and an MRI - nothing on either, although I did figure out that I am extremely claustrophobic and I do not like tiny needles in my muscles. lol so there is that.
My rheumy responded to me and wants me to do a few Lupus specific blood tests. If I had to put money on it, I'd go with Sjogren's though and I think the dry eyes and dry mouth will come with time. It's hard accepting all of this, especially at 30. I read about these blood tests, antibodies, etc. and I always read the same crap "a negative doesn't mean you don't have it and a positive could mean this or that, blah blah blah" and I honestly feel like losing my mind because I don't know how anybody gets a concrete diagnosis. I feel good knowing my anti CCP is positive and that is specific to RA, from what I can tell, so at least I feel like I do have RA. But as I've said, there is definitely something else.
what is the typical treatment protocol for Lupus? Sjogren's? How does one get IVIG? Is it even helpful? If MTX is helping me with RA by "suppressing my immune system" then why isn't my immune system being suppressed enough to quit attacking my nerves? Autoimmune diseases are still such a mystery to me.
Oh, also, I did have my B12 checked when this all began. It was 500 something then. I have not had that gene tested to see if I am utilizing it - or whatever that is. I do take methyl folate for my MTX and I was taking the methyl b-12, but my b12 shot up over 2000 and my GP told me to quit taking it. I still pop in one sometimes, once or twice a week, because I am stubborn as hell and I will try anything lol
Oh heck - although you did make me chuckle about the needles (I had acupuncture for the neuropathy - it was a new kind of hell!) and the MRI claustrophobia. Think how I'm feeling - I've got to go inside a ct scanner for an hour or more with this contrast dye and a cannula on Tuesday. And then have another brain MRI in a week's time! The things we do for some indeterminate greater good eh?! So far, in 18 months I've subjected myself to lumbar puncture, ECG, EMG, MRI, nerve conduction tests, endoscopy, cystoscopy, vaginal ultrasound, skin biopsies, colonoscopy and lip biopsy. What a faff!
Small fibre neuropathy in Sjogren's won't usually show up in any of these nerve conduction tests. The only test that effectively shows it is a skin biopsy - usually taken from your calves. My GP did this for me last year and nothing showed up so this just held me back even further.
A recent GP told me that neurologists are very good at dismissing anything they can't explain.
Re being 30. You sound a very smart, level headed 30 to me. So perhaps you can turn this round and see your relative youthfulness as a bonus? Hormonal changes can bring about huge changes for the better as we age. For example I had severe eczema and alopecia when I was a kid that lasted right up to my menopause ten years ago (it came a bit early). Now my hair flourishes (unless I have to have chemo for lymphoma that is!) and my skin is eczema free - or it was until some crappy thing called Pompholyx decided to take over my fingers and palm last week!
And at least you are aware of all this connective tissue disease stuff. When I was your age I was losing hair in handfuls, scratching myself until I bled, swelling randomly with allergies to unknown triggers, eyes gushing and sneezing at I know not what, dizzy, always tired and completely oblivious to possible autoimmunity. In fact I'm far healthier and happier than I was when I was your age despite the newer health problems. Perhaps if I'd been researching back then I'd have already discovered that I was hypothyroid and been diagnosed with Sjogren's and would have focussed more on improving my health through diet and exercise, instead of hiding my head in the sand as I did..
I'm glad your rheumy has got back to you already. You see that in itself is fairly amazing - most NHS rheumies wouldn't respond in this way but it shows yours is taking your problems very seriously and that you are more proactive than you realise! It is all one big, mad maze I know. X
That's the only positive suggestion that the neurologist and rheumatologist have been able to give me ie suppress your immune system and 'maybe' it will help the neuropathy.
But my joints are now pain free (hoorah) but nothing has changed with the neuropathy. Doctors find it very difficult to deal with things they can't see and measure.
So now I'm seeing a homeopath.....and I regularly see a Mctimoney chiropractor and often have acupuncture too! And I've made pretty big changes to my diet....got to keep trying until we find something that works!
Dry eyes is not about your ability to cry but how long it takes for the tear film to break up.....worth having it checked out...just in case, as it can do damage to your eyes.
But as for the neuropathy, I only wish I had found something to help...there are drugs eg gabapentin and amitriptyline....but they only mask the symptoms..they don't address the cause...but might be worth trying. Have you seen a neurologist? What did they suggest?
To add to Matilda's wise words, dry eyes can be worsened or even caused by certain medications, ironically often the ones used to treat neuropathic pain such as Amitriptyline and Duloxetine. Same goes for dry mouth. And also antihistamines.
So some have told me that my mild sicca and mouth dryness mean I don't have as severe Sjogren's as theirs- but this is patent nonsense! My dryness symptoms were really awful on these so called symptom treatments.
I use topical treatments for my eyes and grip my mouth tight shut at night to the point of having to wear a night mouth guard for bruxism. This is why my teeth are in much better shape now than they used to be when I was younger and would breathe only through my mouth - because I'm a clencher these days rather than a mouth breather.
Ach I aim to make people smile - hopefully at my own expense!
The dental student used this term when I went to get the results of my lip biopsy. I had to show her my well chewed mouth guard to see if I could get another made. "Ah so you're a nose breather are you?" she asked. ππ¬
Heck yes me too - and I say this as a former mouth breather with many fillings and root canals of old etc! A dentist once told my son that the reason his teeth were so much worse than his brothers' was because he was the mouth breather of the three - just like me. He also had a permanently blocked nose - same as me - due to allergies and dryness . It must have made a deep impression on us as we are now both nose breathers with jaw clenching tendencies!
Can't offer any more advice than the excellent stuff that Twitchytoes has, but just thought I'd offer an understanding extra ear.
I was 30 when I originally became ill with what is currently diagnosed as RA (not convinced), so know how you feel in one sense. It feels like someone pulled the rug out from underneath your life.
Like Twitchytoes I buried my head for a few years when it all started, places like this weren't so popular 17 years ago and even those that existed frightened me, partly I think because I didn't want to be one of those 'sick people' and partly because I was terrified of what I might find out.
You on the other hand are looking for answers. Kudos. You are being far more proactive in the circumstances than you are giving yourself credit for. This place (and other social media) can be of great comfort sometimes, it just helps to know that someone gets it.
It's also a bit like crowdsourcing knowledge, we may not be doctors but have an unfortunate wealth of hands-on experience between us, and the chances are someone will recognise your symptoms (however diverse) and relay their own experience.
For me, you are doing the right thing; it's so confusing at first and trying to understand all of the medical jargon and what the different tests are for and mean etc is daunting in the extreme. Couple that with brain fog, fatigue and all of the other nasty symptoms then mix in a hefty dose of denial and shock and it's little wonder we feel overwhelmed initially.
But you will 'get your head around it' and you will move on. As others have told / will tell you friends come and go. We love them to bits at the time and then when we need them, well. But the ones that stick around or the new friends that fill the gaps more than make up for it, and we are left wondering why we ever liked such selfish people in the first place. One of my 'best friends' told me I had a 'psycosomatic illness' about two years before I had my first joint replaced. We haven't spoken since.
Oh and what Matilda said about dry eyes, you can't always tell without a test to determine it. I've luckily escaped that one so far (only knew for sure when I enquired about contact lenses and the optician explained that RA often = dry eyes but cleared me after tests).
So much hard earned knowledge here. Research and take control of your illness and your life.
My research turned me from being housebound at easter to walking over 10 miles yesterday in beautiful countryside. All done by treating the cause of RA - bad gut flora.
Welcome Karilynn
I read your post just after returning from a doctor's appointment where it was confirmed that I have a neuropathy, mostly likely related to my RA but I'm awaiting to be seen again by rheum in a few months. In the mean time, my GP has prescribed gabapentin. I've not yet had the courage to try it because I'm worried about the sedating side effects. Apparently it can be quite helpful, so I was wondering if you had tried it?
I think people often underestimate the emotional impact of having a disease that affects you in so many different ways. There is also research that suggested depression is linked with inflammation, although it is all a bit complex for me to understand!
I'm sure that you will find this to be a great place to be. The people are wonderful, so supportive and you'll never see a post go by without someone trying to help.
We are similar ages. I'm 28 and was diagnosed 7 years ago. I do strongly think there is an extra added element when you start off adult life like this as the future can seem long and scary. I'm happy if you want to chat - about anything - so feel free to drop me a message. Don't be alone. We get it and we always will be here.
I just wanted to add that I had a better experience with azathioprine than Twitchytoes. I'm still on it and my neuropathy symptoms have been much improved, as has the arthritis. But I wish I didn't feel as if I have morning sickness all twenty-four hours.
I am just overwhelmed by all of the replies here. I can't tell you how comforting every contribution has been for me. Honestly, such a relief. I don't know a single person in my real life who has an autoimmune disease. My grandmother "had" RA - it's been in a long, long remission. I'm assuming I had this genetic disposition and something flipped it on. I've read theories galore now about gut health and cigarette smoke and environmental pollution. I go back and forth between being afraid to eat anything now to fully rebelling and stuffing my face with whatever I want. I'm not in a good place yet, but I hope to find some kind of bittersweet balance between accepting what is happening to me and doing all I can to help myself.
I am so hyper-focused on my body now, it's odd. I've never felt so acutely aware of the fact that I exist in a body and that something is now wrong with my body. It's a very strange reality because I feel like I have to force myself to be IN the moment now, trying to enjoy things, when all of that came naturally to me before. And then to have people who either don't believe you, or don't understand, it's just upsetting. It's devastating. I look at healthy people now and think, they don't even know what they have. Because I didn't know. When I was spending my twenties crying over a man losing interest in me or not getting a job I wanted, I never for a single second appreciated my health. So, if anything positive is to come of this, I have an entirely new perspective on life.
Again, I have to thank everybody here who has taken the time to reply to me. This is the hardest thing I've ever gone through but I do feel like I will find a way to navigate through it in time.
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