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Negative Bloods in RA

Posted , 11 users are following.

oliver45760
oliver45760

Hi all.

I've been struggling with joint pain for about 3 years. 27 year old male.

The pain is mainly located across my knuckles, wrists and ankles when it comes. The latest lot of pain was enough to almost reduce me to tears. All the common signs are there (my mother has RA so I've seen first hand). Very stiff in the mornings etc.

I've seen a rheumatologist twice over it who isn't convinced it's RA as my bloods keep coming back normal.

My latest GP visit was last Friday, who gave me a week of prednisolone to take, on the logic that, if the pain and swelling dissappears, there's obviously something wrong. So I had a blood test before starting them to check for RF etc, all of which are normal. The Prednisolone has gotten rid of all the pain completely (it's blissful!) The swelling in my hands has come down. Only swelling that remains is a puffy tendon in my wrist.

Has anyone had a similar experience? I'm waiting on a call back fron my GP but I'm getting fed up of not knowing what's going on.

Thanks

Ollie

1 like, 28 replies

28 Replies

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  • deborah80143
    deborah80143 oliver45760

    Posted

    Hi I was in exactly the same position bloods negative but had multiple joint swelling and pain. My rheumatologist put me on reducing steroids trial and worked a dream.

    When I went back to see her she diagnosed seronegative ra as I had such a good response to pred. I am now on hydroxychloroquine which helps 50% improved unfortunately I can't tolerate 400mgs. Hang in their sounds like you have a good GP. Hopefully they can write to rheumatologist explaining how better you are on steroids.

    • oliver45760
      oliver45760 deborah80143

      Posted

      Glad it's not just me. Thanks for your reply.

      I didn't realise how much pain I was in before I started taking these Prednisolone. Work has become a lot more enjoyable. I'm dreading stopping them though, after a period of relief i imagine the pain will feel 10x worse when it returns.

      Once I've spoken to my GP I will post an update.

  • max007007
    max007007 oliver45760

    Posted

    Hello oliver my name is max i had the same problems blood keeped come back OK so they used a ultra scan over hand feet arms shoulder came back RA thats what what they said and its around my knees making hard to walk even with all the pain killers like prednisolene they told be start me off on high dose of prednisolone that 6 tablets all at once every day for a week and 5 tablets for a week and so on does anybody know what happpens  when you are down to zero prednisolene  because they not really working now if they are its  a little bit maybe , get back to Oliver ask for ultra scan its not joke they should be on the ball mate you should not need to ask all the best max
  • anni_04141
    anni_04141 oliver45760

    Posted

    Hi Oliver 

    currently in same situation as yourself. I have pain and swelling for passed few years. Which hasn't gone I have been on prednisolne for asthma so all my bloods come back normal no RF factor and all my inflammorty markers are normal as well as autoimmune. I'm on my fourth rheumatologist. Been given two different diagnoises one being seronegative and one fibromyalgia.  Have you had any other tests MRI? Ultrascan too see if they can see any Abnormalities?

    I understand your frustration and I'm still waiting for tests with no treatment at the moment as unclear to what is going on. It's fustrating when everything isn't black and white and sometimes medicine isn't and these doctors forget it. I would get on to your GP get the referal for a rheumatologist appointment perhaps a different one than you have seen before or another hospital which is more specialist? And demand tests bloods can not confirm nor rule out RA. Maybe look for a doctor who specialises in seronegative ? Hope this was helpful. 

  • mary76396
    mary76396 oliver45760

    Posted

    Hi Ollie it took two rheumatologists several years to diagnose my RA because although my bloods showed auto immune problems it didn't show where. I think they are cautious in diagnosing as there are several diseases that mimic symptoms. My RF eventually showed high readings but although my Rheumy put me on Predislonone and MTX I don't think she was fully convinced until my inflammatory markers still showed high levels of inflammation and she ordered a bone scan which showed high inflammation in my wrists and fingers and ankles and toes. She then put me on a biologic. It's frustrating to wait but hopefully they will find the answers they are looking for soon and you will get some relief. Good luck.

  • ihavenonickname
    ihavenonickname oliver45760

    Posted

    Not every person with rheumatoid has a positive rheumatoid factor. Was you sed rate tested? Do you have uric acid....especially because of your family history you need to be sern by a rheumatologist.

    And knowing all of the adverse side effects of steroids, I question that decision.

    After 54 years of living with JRA I just want to scream sometimes....today's medicine can do so much for everyone with rheumatoid. Early intervention by a rheumatologist can be the difference between pain, suffering, and deformity and rheumatoid disease in remission.

    • lauraine33392
      lauraine33392 ihavenonickname

      Posted

      Hi. I've no idea what's happened to Patient in my email system . I don't seem to be getting any notifications. I think I'll install it on my laptop rather than my cell. Just to let you know I went to the gp Monday and I'm being treated for a blood clot. I'm not convinced. But seems my thyroid function test came back normal. Apparently I was left with a small portion of thyroid when I had my op in yr 2000. So I'm off to the hosp in a min to have anti coagulant injection. My tummy is a mess with bruises lol.

      And thank you for your advice .

  • timothy11402
    timothy11402 oliver45760

    Posted

    I have had the same experience with prednisone. I could fall in love with the stuff, but unfortunately it is only for short-term use. And knuckles, wrists and ankles are my epicenter also.

    ​I have RA but am one of the 30% (thereabouts) whose blood does not test positive but he says I do have RA. 50% of those who do not test positive will eventually test positive and a new phase of RA kicks in. But there is no predicting who will be included in that 50%.

    Hang in there and take good care of yourself.

  • lorraine74484
    lorraine74484 oliver45760

    Posted

    I was diagnosed about 6 weeks ago. I had pain in my hands, wrists, elbows and ankles. I went to my GPA who did a smattering of blood tests. My RF factor was normal but my sed rate and WBC count was high. After waiting 4 months of waiting to see my rheumatologist, more blood tests and x-rays I was diagnosed with seronegative RA. I have been put on 6 2.5mg methotrexate a week, however I basically have to live with the pain and swelling until the meds kick in as I cannot take prednisone because I am diabetic as well. I go back to the Rheumatologist on two weeks so I will interested to see if there are changes in my blood work too.

    I guess we just have to hang in there. Take care

    • max007007
      max007007 lorraine74484

      Posted

      Hello max back again was was diagosed about 8 weeks ago they diagnosed me though ultra scan the pain is bad feet hands knees every joint they also took a piece of my new total knee replaemment out skin tissue which was done 18 months ago  for diagnostic that came back with cronic infamation of the knee which he agreed with ra consutant it is Ra THE BLOOD TESTS came back ok weild are what can any body tell me whats happening now with the prednisolene started high dose , now one a day , after tusday none its doing no good anyway now i'm in more pain then ever what do i do i'm getting to the end of things good luck everybody i really had it with being mess out about and being used a lot as a lab rat that what i think it might be my mind i don't no i do wish everybody best of luck and best regards and have a nice christmas love you all max 

       

    • timothy11402
      timothy11402 max007007

      Posted

      Hey, Max......I hope you have family around you to support you. The early months of this disease are not pleasant until the docs can regulate your regime to control the symptoms. Just don't push yourself physically at this time and have faith that it gets better. And it does.

      Have a comfortable Christmas and think positively. And love is what this website is about.

    • ihavenonickname
      ihavenonickname lorraine74484

      Posted

      You might consider compression sleeves...Amazon or a pharmacy or Walmart...and a heating pad. Keep your hands, arms, elbows covered while you sleep. Locate an electric mattress pad. Put your topper on top of it. Sleeping with heat on will reduce morning stiffness. I keep mine on year round. 1-2 in thesummer, higher as it gets coldet. Nice to never crawl inbetween cold sheets.

      I have had JRA since I was 11, 54 years ago.

    • ihavenonickname
      ihavenonickname max007007

      Posted

      Rheumatoid is a dynamic disease that morphs....this is why a medication that helps today may not help tomorrow.

      By observing a person's reaction to a drug, we can learn a lot about the rheumatoid in that person's body...Both Enbrel and Humira are TNF, tumor necrosis factor. Individuals whose rheumatoid responds well to either Enbrel or Humira are said to have TNF driven rheumatoid. Rituximab is a monoclonal antibody against the protein CD20. For those who respond favorably to Rituximab, we say their rheumatoid is CD20 driven.

      Sometimes rheumatoid arthritis can be successfully treated with an NSAID...non steriodal anti inflammatory drug...such as Orudis, Feldene, Naprosin, Naproxin, Motrin, Indomethacin, Butazolidin to name just a few.

      Steriods...not to be confused with anabolic steroids...prednisone, budesonide, methylprednisolone are three of many steroids. Many decades of study have taught us to use steroids judiciously because steroids cause unwanted side effects such as bone density loss. Today, steroids are prescribed using a burst approach...high dose fast start, immediate graduated decrease, off.

      DMARDs & Biologics... disease modifying anti rheumatic drug...

      This class of medications modify, literally change the way rheumatoid behaves... Methotrexate (now the gold standard), hydroxychloroquine, sulfasalazine, Orencia, Remicade are all typically oral.

      Rituximab is delivered by infusion.

      Enbrel in the mid nineties was the first DMARD. I still remember watching the television news that night with tears running down my face. Those of you who face rheumatoid today should never face the full fury of this disease. Nevertheless, matching a sufferer with the best medication to defeat their rheumatoid continues to take time. As the class of medication used increases, so too do the possible adverse side effects. Be patient and work with your rheumatologist, only a board certified rheumatologist, to fine tune a treatment effective against your rheumatoid.

      54 years of severe juvenile rheumatoid has left my body permanently damaged and deformed because medicine did not have the wealth of knowledge it has today.

      I am grateful for all of the analgesics, NSAIDs, and steroids that made it possible for DMARDs & biologics to modify even my severe juvenile rheumatoid. Today my JRA relatively quiet. And once my rheumatoid quieted down, I forgot about the really tough times it raged.

      kind regards

    • max007007
      max007007 timothy11402

      Posted

      Thank timothy for those good words its hard for me 2 relpy to this as my son died on april the 18th at 34 years old his name was timothy  i still find it hard looking at pictures are names of him so this could be a start for me thanks max have a great christmas and newyear all the best 
    • ihavenonickname
      ihavenonickname max007007

      Posted

      Max,

      I am so sorry that you lost your son, Timothy 34 is mighty young. And no father should lose a son.

      May Timothy forever live in your heart and when you smile may Timothy smile through you.

      I wish you a peaceful Christmas and a new year full of healing

    • max007007
      max007007 ihavenonickname

      Posted

      Thanks for your kind word its been the worse year ever if you only knew but i'm still here fighting thats the secret don't give up even when things are really bad in you life keep going have a little faith in what you belive in i lost everything in my life when my son died thats when RA started thats what they say i don't know its a funny old thing when i think of my son the pain easys have a great Christmas and newyear all the best to everybody max 

    • ihavenonickname
      ihavenonickname max007007

      Posted

      Max, here you have friends.

      I have had juvenile rheumatoid arthritis since I was 11...65 now...and I refuse to allow this damnable disease to beat me.

      hugs

      judith

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