Still no real answer.

[Nutteratnutwood]

I was hoping to see if anyone else has had a similar journey.

I wrote last week that I had a long time between my scans and my next appointment. I found the reason was that my scans came back "Normal Study".

The rheumatologist could clearly see my swelling and pain, and has put me on a course of sulphasalazine to see if I have any improvement. If I have improvement in the next 6 months she will continue to treat me for Psoriatic Arthritis (not Rheumatoid despite my RF being 251?!). If it doesn't affect anything then she will stop all treatment and send me back to my GP to start again. I spent all Wednesday sobbing over that last sentence. Neither outcome is great really. Either the medication works and I have arthritis for the rest of my life. Or it doesn't and I've suffered 6 months more pain with no further progress in diagnosis.

So, a couple of questions. Is it usual for scans to come back negative? Is psoriatic arthritis really that different to rheumatoid? Also, what else could be giving me such a high RF? I've had a google, but it's hard to know what to put in that will actually get me accurate answers without being overly complicated and aimed at doctors.

[nomoreheels]

Before I start I must just say I was diagnosed with seropositive RD not PsA so this isn't my most confident answer, there are others here who'll be able to explain better. RD can be difficult to diagnose, PsA even more so but obviously she suspects inflammatory disease of some sort with starting you on SSZ, but I can see your point, it must seem a lifetime waiting for a diagnosis & that can make a difference in coping, knowing what you have. I think I'm right in saying that generally testing for RF comes back negative, yours isn't overly high but certainly not negative! You don't say if you have any signs of psoriasis but it's not a given you need to, then again even if you do it may not be that you have PsA. I take it you were asked if there was family history, but then it's not a definitive you have it if there is. You see, not straightforward.

Quite why your scan results were negative I'm at a loss with. If you have visible swelling it would suggest it would be shown on the results but, again, she's not relying on them she's working off visible evidence & your pain so I wouldn't concern yourself to much about that.

Again, your RF isn't overly high, mine was over a thousand & I've known of others being as high if not higher. Add in that a high percentage of the population also test positive for RF & don't have inflammatory arthritis so this test alone isn't taken as wholly reliable.

I hope some of this helps (& is accurate). I'm sure someone with PsA will be along to share their personal experience.

[Nutteratnutwood in reply to nomoreheels]

Thank you so much for the information. I do have a family history of Psoriasis, so I guess that's why they're going down that route.

I'm coming round to the positive side that at least she's trying something. It's just frustrating to keep being told that I'm normal when I'm quite clearly not!

I guess it's just part of this whole new world of inflammatory diseases which I'm so new to. I've always thought that medicine was more of a binary field. You have flu or you don't. You're sick or you're not. It's so much more blurred than I ever realised!

Thank you again for taking the time to give such a detailed response!

[Nutteratnutwood]

I've had ultrasounds and an mri on my worst hand.

It's so frustrating when they say there's nothing wrong!

[Lorin]

My sister has Had Multiple Sclerosisfor the past 6 years. Last year her hand and buckles swelled and she could barely use her hand. Looked broken based on the swelling X ray showed nothing. They caver her steroid injections which helped a little. Finally they sent her to rheumatologist. Diagnosed her with Seronegative RA. Meanwhile I had struggled with back problems and plantar fasciatis. I had been walking 5 miles a day and blew out my foot. Then started developing lethargy and stiffness all over as well as numbness in hands and feet. Eventually diagnosed with Seronegative RA. My aunt was diagnosed a few months later. None of us have positive RF but we all have elevated ANA. My rheumatologist said many patients go on to develop psoriasis or eventually develop a positive RF. The treatment is relatively the same. Best of luck to you. Take care.

[Chez1]

I know how you feel, I have raised levels in blood test but when I see consultant no swelling or pain so won't start me on medication, next appointment is February. Now waiting for mri on hand and physio hopefully they will show something as fed up now, if not ra what could it be, oh well time will tell. just have to take every day as it comes. hope you are sorted soon

[Hidden in reply to Chez1]

I can understand why you are finding this distressing because of the comment about being handed back to your GP. This would concern me too - because there are other types of connective tissue disease that can cause a high RF and much pain and visible swelling occasionally.

Mine is called Sjogrens and it is a rheumatic disease and can overlap with other autoimmune diseases, including RA, MS, Addison's, Vasculitis, Sarcoidosis, Scleroderma and Lupus. None of these necessarily would show up in an MRI of one limb because the inflammation is systemic.

But Sjogrens can also be a primary disease and can cause a high RF often and mimics RA and even MS for some. It takes most sufferers 5-6 years to get a diagnosis.

So I would fight not to be dismissed from the rheumatology list if Sulfasalazine doesn't work for you. It is really not used for connective tissue diseases such as Sjogrens or Lupus - only for RA and PsA. So you may need to do some research because something is obviously wrong for you. It could be inflammatory Osteoarthritis but with a high RF and swelling I would still want the rheumy to monitor it sometimes if I were you.

[Dodo1943 in reply to Hidden]

I agree with Twitchytoes 100%! Six years ago a RF 500 reading brought the comment to my clinical record 'All RF results should be interpreted with clinical findings and inflammatory indices. Dr. David Sinclair'

Six months earlier I had tested negative for RF and antinuclear antibodies and, as a consequence, I requested an anti-Tetanus jab. I was advised a single vaccine was no longer available and all that was offered was the triple against Diphtheria, Tetanus and Poliomyelitis. I don't know if that was the "trigger" but I was dismayed to subsequently read the leaflet for the REVAXiS vaccine that it was only suitable for people who have had previous vaccinations against these infectious diseases. I had stated clearly when enquiring and repeated prior to injection that I had never previously received anti-tetanus vaccine. To cut a long story short, no-one - not even the manufacturer - was prepared to put an assurance in writing that my immune system had not thereby been compromised.

Further subsequent dresearch revealed that insofar as that high RF result was concerned, there was no recommendation for periodic re-testing! Kept in ignorance of my supposedly 'false' reading cost me 6 years of extreme discomfort until an almighty flare I would not have wished on my worst enemy!

[DelicateInput]

First, I would order a copy of the ultrasound scan (ie the CD disc which you can insert into your computer) and the written report. Usually, copies of written records incur a fee of around £10 but copies of scans are a lot more - around £40.

In the meantime, go on the internet and find out how to read ultrasound scans on the hands. It is quite easy. The scanner will highlight areas in red where there is something abnormal (inflammation, synovial thickening, effusions, ie liquid). Abnormal areas in the knuckles (ie inflammation) will show up as black triangles, and this is particularly indicative of RA. Hopefully, your ultrasound was done of the wrist. My MRI only showed the hand but the ultrasound showed the wrist. I can't think why only one hand was done on ultrasound because it is just as easy to do the two and more beneficial.

Were you taking any anti inflammatories when you had the scans done? How long did the scanning take? I have noted people on here say their hand MRI only took 20 mins and I question how thorough it was because mine took an hour and then an extra 30 mins for preparation and getting in/out of the scanner = 90 mins, and dozens of images were produced. Conversely, an ultrasound on the shoulder took a few minutes because it is a large joint with large tendons showing massive inflammation. Also, did the sonographer or radiologist not tell you what they had found as they were going along - mine did.

As regards swelling, my hands were very badly swollen and I could not move the fingers but apparently no "synovitis" was visible. However, the joints of the hands are miniscule compared with large joints like knees and shoulders and inflammation is not going to show easily or at all and joint inflammation is (in my view) not going to cause massive visible swelling. What will cause massive visible swelling is swollen tendons and this is indicative of RA or psoriatic arthritis. Most importantly, the sonographers will only report what they are requested to report: if they are only asked to report on joint swelling they will not report on tendon swelling.

I'm not fully familiar with what causes a high RF but a lot of people have this and they do not have any form of arthritis.

I would take what the rheumy said about sending you back the GP with a pinch of salt. It sounds to me that if you say there was no improvement in the drug, it is a veiled threat. A lot of people don't want to take these drugs so they say they don't work - the next step being biologics. If the damn drug does not work, she will legally have to try something else so don't worry too much. Remember, being well informed is being forearmed. You have to handle some of these characters carefully - if you say anything out of place, they are likely to take advantage so be assertively and pleasantly questioning. I had to pin mine down and it wasn't easy albeit so far as doctors go he is extremely affable and pleasant.

Best of luck.