Negative Bloods in RA

Bones, joints and muscles
1

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

2

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.

3

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.

4

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

5

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. 

6

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.

7

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.

8

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 .

9

UGH!!! been there, done that ..I was black for months...but I look okay now...hugs

10

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.

11

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

12

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 

 

13

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.

14

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.

15

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

16

I've been battling to find someone to listen to me about the pain, swelling and stiffness. My GP finally did. Did all the required blood work, convinced I have RA or some other autoimmune disease and referred me to a rheumatologist. Told me to take 2400mg of ibuprofen a day for the pain.

All my blood work is normal...the ibuprofen isn't touching it. I scheduled another appointment with my GP since my rheumatologist appointment isn't for another 4 weeks. She then tells me she doesn't think I need to see the rheumatologist because my labs were normal. I lost it right there in her office. Broke into tears and shoved my red, hot, swollen hands in her face and said "look at my hands, something is obviously wrong!" She decided to keep the rheumatologist appointment and prescribed prednisone.

I know about seronegative RA. Why doesn't she? I am 38 years old and I am struggling to work, drive, bathe....my fingers and feet are changing shape. No one has ever taken an xray of any joint to see if there is damage. I am angry and I will no longer be dismissed.

17

hang on...the diagnosis process is awful...how long have you been taking the ibuprofen? This is not like a narcotic giving results in about an hour. Ibuprofen is about treating the inflammation. By getting the inflammation down, the pain will also come down. Sadly, no medication knocks rheumatoid out with any rapdity.

18

Dear Alamode i find that when i worry about something large are small  i can watch my self flair up its not nice driving the same i don't no why but it there RA even food ,. my advice would be see your rheumatologist see what he as to say and go from there it take time there are some really nice people on this site and the advice they give is good sometime they need to talk as well when sometime deaf hears around you seem like your moaning all the time people on this site will listen i am  in the same boat it not nice at all if you need to talk loads of people on here really nice just ask all the best loads of love goes your way max 

 

19

I've been taking ibuprofen forever. The pain and inflammation have remained persistent. I've dealt with this off and on as long as I can remember, but the last 3 years have been horrible. I've gone to numerous docs that tune me out as soon as I say pain, assuming I am a pill seeker. The appointment with the rheumatologist is a light at the end of the tunnel. I hope I get some answers. In the meantime I am taking prednisone that my GP prescribed and it's starting to work. It's just utterly frustrating when you've known for years something is wrong but you

20

i don't no how long they will keep you on prednissone for they took me off after 6 weeks  got to go and see the main man again on the 21st of this month see what he says i think he is adding to the mix of what im on now don.t get low when the start droping the dose of prednisone i no it will be hard other wise make yourself worse honest they start you off on a high dose then drop it down every week until  you are off them if someone else out there would like to add to the mix would be good all the best to you max