Newly diagnosed and unsure

Recently diagnosed with RA after an acute flare affecting both ankles, wrists, right hand and left knee. With lingering stiffness, swelling and aching, decided to see a rheumatologist. A mild case, with out definitive blood tests. Started Plaquenil 7weeks ago. Not much changed. I have been having cramps in my neck/shoulders, including an acute bout of bursitis. Normal? Not sure what's common, normal or expected.

35 Replies

  • You want to ask for xrays and ultrasound on your hands and neck to see what is going on inside your body darling. Hugs

  • Sorry you have this, I was diagnosed last month with aggressive rheumatoid arthritis after specific blood work done for rheumatologist, x rays and and a ct scan. I was asked a whole bunch of body related questions and put on methatrexat and folic acid. I take 4, 2.5mg tablets at once on the same day once a week. I will be taking my 4th dose tomorrow. I had to have my blood tested again before I see her in a couple of days and had that taken care of last week. I didn't have any of the side effects that were talked about but

    I had 2 flare up and had to take the 6 day pack of prednilisone. This week, no flare ups, maybe little twinges to remind me it's still there. I had pain in my hands wrists, shoulder and once in my foot. It travels. Hoping my bloodwork will be good so I can continue with this. I went from a 40 hr week to 3 days. spaced, because I also have osteoarthritis in my knees. It will get better, it just takes too long and I am an impatient person by nature. Only problem I have with the methetrexate is heartburn. Don't know if taking prilosic is ok but I know that it is a side effect. Good luck

  • Exactly what is "aggressive" RA? It generally rears its nasty head suddenly, overnight, so I wonder what the different forms are.

    I went to bed one night and woke up in the morning with one paralysed hand, wrist and lower arm. Later in the day I had a frozen shoulder. During the day I had weakness in both lower arms accompanied by severe pain. I had severe stabbing pain in my right hand, shifting around from one finger to another.

    10/14 days later my left hand was paralysed. A couple of weeks later I screamed at sudden pain in my right elbow. there was nothing visible there but two hours later I had a hard lump the size of a plum. Over the course of a month from the initial onset, I had nodules appearing all over the place - fingers, wrists. I also had the same stabbing pain in the feet.

    A few weeks later, I had severe knee pain which woke me up in the mornings and I could not walk properly. A week or so later, my lower left leg went completely numb.

    For six months, my hands were paralysed.

    This is a typical case. Can you explain therefore what you mean by "aggressive" RA. It is news to me.

  • Hello, so sorry f your diagnosed, but this website is pretty informative and the RA community compassionate. I am two years with RA and have only bee on Hydroyiglorene. So hopefully others will chime in. Since this site is international, so far I think treatment are a smidge varied. I am from USA.

  • With these inflammatory diseases there's no set pattern....sorry! The most common experience seems to be wandering aches that move from joint to joint, but shoulders are rarely one of them. So it could be coincidental, or just a different variant of the disease.

    However, I think the one thing that we all struggle to come to terms with is how long everything takes. It's often up to 6 months before you really recognise the positive effects of the drugs, and they work so slowly that you also often don't notice immediately - but for example suddenly realise you've opened a jar without pain for the first time in months.

    The best thing is to keep reporting all new symptoms to your rheumy team for them to advise. I hope you have a follow up appointment soon so they can take another look at you.

  • How do you know that the shoulder is not a commonly affected joint? Two rheumatologists told me it was. I had severe inflammation in the shoulder and after ultrasound was told it was commonly RA and, in particular, RA usually started in the upper body (hands, arms, wrists, elbows and shoulders). The neck, which has a direct impact on the shoulder, is usually affected in psoriatic arthritis. I've been told this by numerous professionals.

  • Merely a presentation at the EULAR international conference of rheumatology that I went to, which set out the most commonly affected joints in early arthritis (which is the stage the questioner appears to be at) and sequencing of them. Plus I read a lot of research papers.

    However, as we all know, this disease is very variable which is why I said "could" be coincidental or "a different variant".

  • I was referring to your comment "shoulders are rarely one of them" which is quite the opposite of what I was told.

    I can't quite decide which is more disabling - paralysis of the hands or shoulder disability. Most people seem to think the knees are the most disabling because they can't walk but I have suffered with my feet for decades and often had to take taxis. It just does not compare with shoulder or hand disability.

    Are you employed in the medical field? Just wondered as going to a conference is the last thing I would want to do.

  • No I went as a patient, out of interest, as I believe that I have responsibility for my own health alongside the doctors so want to understand the disease. Patients get cut price tickets, so not a huge investment apart from my time.

    And I wasn't saying that shoulder involvement doesn't happen - just that it is not common in EARLY arthritis, which is where Leroa seems to be right now. Which also doesn't mean it never happens, as Matilda7s experience shows. It's easy to blame RA for all our ills, but sometimes useful to keep an open mind.

  • You have not actually stipulated early arthritis in your initial post so I wondered. However, it is common at the outset. I had it at the same time as one paralysed hand and then the other and know a number of people who had it straight away. This was confirmed by two rheumatologists. For me, the worst aspect is not excrutiating pain but the total disability it causes.

    All I am pointing out is that your post is misleading.

  • The shoulder is a commonly affected joint for those of us with R/A, well, some of us anyway. There are times all I can do is to put my arm in a sling to take the weight of my arm off my shoulder to get relief, then the trade off is a stiff immovable arm. Oh well, so after a day or so, it just flips to the other shoulder, then goes away for however long it decides to come back to bother me some more.....hahahahaha, :). I have to laugh this off or just sit there and cry (kidding, well almost). I honestly did not know pain until R/A came into my life and affected me. Keep Looking Up, my friend and I trust relief will come your way soon. We all just have to find our own way to beat this....if we don't quit, we win!!!! Ha! Amen!



  • I agree that I didn't know pain until RA. So when I went to the ER for my bursitis attack I found it difficult to rate my pain on a scale of 1-10. I was in a lot of pain, but I kept relating it to my flare. Of course, looking back, I wouldn't have gone to ER if it wasn't a 10 at some point that night. Thanks for your insight and well wishes. I hope you get relief too

    As an aside, I am thinking therapeutic massage may be helpful. Have you any experience with that

  • I don't use massage as usually I'm too tender at that time, so I just wait it out with 800 motrins, that seems to help a little and I do use pain medication when necessary. Once I'm better I do stretch exercises sometimes, all that seems to help some. Physical Therapy can help too, they can show us all kinds of stretching methods etc..

    Blessings, Once Again,


  • Yes. Just to clarify, the shoulder is often involved in inflammatory arthritis at the outset, and the only certain way to diagnose a shoulder problem (and confirm inflammatory arthritis, is to to have x-rays and ultra sound - as one blogger Sylvi has stated. The ultrasound has the benefit of enabling treatment by injection to be given at the same time.

    In my experience, the disability was more of an issue than the pain.

  • One of my very early symptoms, which landed me up being hospitalised for several weeks, was excruciating pain in one shoulder!

    By the time I came out of hospital every joint in my body felt as if it was affected....this was 1978 and they thought I had foot and mouth and isolated me. An unusual start...I'd just come back from a skiing holiday....went from being fit and healthy to needing a blue badge in just a few weeks. Wouldn't happen these days....they really were pretty clueless and made things much worse by their treatments and cack handed efforts to diagnose me.

    Nothing is 'normal' but you get to know your own patterns after a while.

  • What's a blue badge?

  • The Blue Badge Scheme is a UK scheme which provides on-street parking concessions for disabled badge holders. There are very strict eligibility criteria.

  • What a great system!

  • We dont want you here!. What i mean is we would rather you never had cause to find this forum, but now you have a warm welcome. I hope for you that your flare is a one off but if you join the RA club you will find good advice and kindness here, we have been there, done that and now struggle to put on the T shirt, but your experience will be different to everyone elses and no one will eventually know you better than you. We will cheer for your good news and hate your bad news, keep talking my friend and ask anything you need to, we will listen and we will answer as best we can. Good luck. Leon.

  • Hi Leroa,

    Welcome and would I be correct in saying you are perhaps in another country other than the UK?

    The reason I say this is the way you describe the reaction to your onset, was it a GP who diagnosed you and told you it was mild?

    I think most would agree that there is no such thing as mild RA, I'm very sorry to say it is currently incurable and also progressive.

    Having a negative Rheumatoid factor or anti CCP ( sero negative) sadly does not mean you will escape severe RA symptoms or the joint damage that can come after chronic inflammation.

    Hydroxychloroquine ( Plaquenil ) is one of the front line DMARD's Disease modifying anti rheumatic drug, it is also widely used as it is well tolerated, you just need to have a yearly eye check.

    Like all DMARD's they take their time to show any positive effects.

    Here in the UK in case you are not from here the current standard is to treat aggressively which is why the first drug of choice in most cases is Methotrexate and or another DMARD.

    I myself had a pretty explosive sudden onset last summer, similar to the symptoms you describe for yourself, I too am sero negative and have now been on Hydroxychloroquine and a Biologic Enbrel for a year and eight months respectively.

    I wish you the very best of luck with your treatment and you have come to a very good, helpful place with people who have vast experience.

    It is very hard to come to terms with a diagnosis of RA which actually can often change as time goes on.

    There are many different types of inflammatory autoimmune diseases that can have arthritic symptoms of joint inflammation, pain and swelling so sometimes it can take years for a confirmed diagnosis.

    Look forward to hearing your progress.

    Get some good anti inflammatories and read as much information as possible.

    All the best

    M x

  • I'm still waiting on a diagnosis myself and found your comment about there being many joint inflammation illnesses interesting. Sometimes I think I have RA and other times not. Maybe it's some other autoimmune disease I have.

  • I feel exactly the same way. Hopefully we will both be treated well enough to despite the lack of a "definitive " diagnosis

  • Sorry you have to be here im too newly diagnosed and only by gp i had a very negative experience with a rhumy and im looking for a different one. So needless to say mine is not controlled and as worse as it has ever been my shoulders hands wrists feet and back have been in really bad pain i have swelling in hands and feet and now as of yesterday its affecting me knees. The first rhumy i seen told me i had no swelling i want red in the joints and basicly he wasn't going to help. Im a little person and so i may not look swollen to someone who don't know me but we know are bodies better then anyone and i know i have Ra i even have nodules and my joints are getting knobby.

    I hope you get the help you need and the respect you deserve this is a terrible Disease but as others have said it can be controlled ots just alot of trial and error.

  • I had a hard time convincing my GP that I had swelling at first. I'm not thin but have "boney " hands and feet. So I took pictures to demonstrate the progression. Hope you have better luck with your doctors.

  • Thanks everyone for your companionate and informative responses. Yes, I'm from the US. I am currently working as a Veterinary Technician- very physical. I guess I'm mostly unsure because so many people have posted about how exteme they're symptoms are, yet my symptoms are very subtle. I'm almost embarrassed to say, apart from my "flare", where I could barely walk, I feel pretty good. Comparitivly speaking. I have the beginnings of dry eye. I have some aching in hips, ankles and hands, one hand being mildly stiff and painful. I still can walk a 50 minute 5k, haven't any real difficulty with exception of my shoulder cramps and pain. Should I assume things will get worse? Will I have another flare like my first? How often? Thanks again for all your support

  • Leroa, I am also from the US. I responded to you earlier. I work in retail and I am on my feet and moving the whole day. When mine first started I just knew that I had pain in my hands and wrists. I thought it was carpal tunnel and went to orthopedic and had xrays for that and he said there was no arthritis there, go to a rhematologist. It is like a wave gradually getting worse, so your hand feels swollen and your skin feels like its hot . After 3 Advil every 4 hrs pain will ease up and go away but not necessarily leave your body but just move to another spot. I couldn't work a full day without being out of commission for 2 days. I am 69 years old but reasonably healthy and within my weight range.

  • My story is similar to yours, I had wrist and hand pain. GP thought it was carpal tunnel. Referred to an orthopaedic surgeon. MRI and nerve conduct studies and 6 weeks later and 6 months since onset of symptoms. Referred to Rhuematologist and diagnosed with sero positive RA, Now on methotrexate injections and hydroxychloroquine. I have been quite well recentlyjust the odd ache and pain. But stiffness continues.

  • Dear Leroa,

    This disease is hitting you hard and fast, therefore, you must act aggressively hard and fast!!! You need to get this under control as soon as possible and it is possible. I'm not a Rhematologist, but starting with Methotrexate along with folic acid is typical. Enbrel along with it or possible Humira are also used in some instances. If success then you may be able to back off one of them and see how it goes??? Then a good quick acting anti-inflammatory medicine might help as well, like Motrin or indocin and please all these suggestions should only be used under the supervision of a good Rheumatoligist along with proper bloodwork being done. Seek a good Rheumatoligist and find one who works with you. My RA hit me many years ago and it hit me hard and fast and I was put on Methotrexate right away with almost immediate success.

    Blessings, and do let us know how it goes,


  • It is a shame that the newly diagnosed are almost exclusivly encouraged to start with a aggressive treatment right away. True that this is the official protocol but as we can see from the experiences of those on this forum, some get help and others do not. Many change from med to med and still suffer and have progression year after year.When I was diagnosed 8ms ago I had pretty much the same symptoms as you have Leroa. Since RA is such an unpredictable disease with a variety of outcomes I wanted to try the nontoxic treatments first. AIP elimination diet decreased my inflammation and pain and fatigue to feeling nearly normal. Taking LDN to support my immunesystem along with supplements have turned out to be the treatment that keeps my RA under control. Everyone is ofcourse different and the disease has different faces but the fact remains that there are a great number of AI patients that have had success with nontoxic treatments and everyone newly diagnosed should be given all the information there is not only what the official protocol offers. I hope you will receive all the help you need to see the big picture when you decide what treatment path to take. The best of luck, it's not an easy journey.

  • I am from the UK. What is LDN and AIP elimination diet. I have been on unsuccesfully Sulfasalazine and Methetrexate also Prednisalone all of these causing me dreadful side effects. I Would like to find a kinder treatment if possible.

  • Low Dose Naltrexone. That was my first choice of immune-modulating drug, but had to go private to get it. (Clinic 158 are very helpful and knowledgeable about it.) It is a very safe drug, unlike the standard RA drugs. It is helpful for various aspects of RA and other auto-immune diseases. Lots of testimonials. Google it, or join some of the LDN forums.

    An anti-inflammatory diet is worth looking into - the AIP is a Paleo one, but there are others. (Paddison, GAPS, Amy Myers, McDougall, Budwig Protocol etc.) Whichever you try, you'll probably need to experiment to find out which (if any) foods affect you. I was in a lot of widespread pain last summer - not my joints, but much more diffuse. The GP gave me Naproxen, which didn't help. It was only when it caused me to wheeze and I had to stop taking it, that I decided to change my diet, took supplements and started juicing. For the first time in many months I was finally free of pain and my left wrist cool again. I can't say anything other than gluten seemed to affect me badly, but then I have kept pretty much off sugar and processed food, have limited dairy and I was vegetarian already. (Some forms of alcohol seem to affect my shoulders the next day, but not all!)

    In January blood tests indicated that I would develop RA, so the rheumatologist advised me to take Plaquenil. He now wants me to take a second DMARD to stop the "flares" - by which I can only assume he means my tendon problems as I don't have swelling, redness, joint pain, morning stiffness or fatigue. So I'll be on Sulfasalazine once I have seen my GP. I don't want to take them, but I know it is important to control the disease.

    I am sure everything that I do myself must be having some effect. Whatever you do or take, let your rheumatologist know just in case anything conflicts with your medication. Good luck!

  • Thank you for that . I tried to get that in the UK but need a prescription for it my doc doesn't want to go against tried and tested uk treatment so I gave up. I have anti inflamatory diet anyway and take supplements too.

  • The GP I saw at our local surgery didn't want to either - wanted to give me the contraceptive pill or anti-depressants or pain killers or anything other than what I was asking for! But although she didn't want the responsibility of prescribing an off-label drug herself, she had no objection to me going elsewhere. So I did. I have to pay, but consider it worth it.

  • would you email me and tell me how the LND works?

  • I'll do that when I get in from work!

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