Welcome to the monkey house ...

[Catwoman66]

As a terrible Goth in days gone by the above song was something I danced to frenetically every week. I hated it, still do, but everyone else loved it and I didn't want to be the odd one out.

Now, about 25 years later, I've spent most of the morning at what passes for a monkey house, only the monkeys have letters after their names. That's right, today I got a definite, definitive and all encompassing diagnosis. I,without a shadow of a doubt, have seronegative inflammatory arthritis. My symptoms press every button, tick every box, strike every chord. I've failed on the RF factor, Crohn's Disease, Psiorasis, Reactive Arthritis and Ankylosing Spondilitis questions and tests so there cannot be any other diagnosis. It's impossible. Absolutely.

"So what's the difference between that and rheumatoid arthritis?" I asked.

"Your form is not as disabling as RA. It's unlikely to get to the worst-case scenario stage of RA," the consultant reassured me. "However, we treat it the same; try to reduce the inflammation and associated joint damage."

I left, a little smile on my face at the thought that things might not be *that* bad, with the recommendation to try biologics and was given some leaflets to mull over before reaching a final decision on which one to take (probably Humira if anyone's interested).

Now, when SIA was first bandied about I did some research, or tried: there was very little information about it, so this morning I tried again and now I'm more confused than ever. Not one website, not one leaflet, not one consultant nor rheumatology expert can actually agree on what SIA actually *is*. Everything I read contradicts what I read immediately before. Here's an example:-

* SIA affects mainly men

* SIA affects only men other than exception circumstances (which is weird considering a woman I spoke to in the toilet at the hospital also has SIA)

* SIA doesn't affect the joints, only the tissues

* SIA affects the joints, tissues and cartilege

* SIA isn't as severe as RA

* SIA is worse than RA because it affects the joints, tissues and cartilege

* SIA only affects one side of the body

* SIA can affect both sides of the body and half of those affected on both sides of the body will become severely disabled. That's me potentially buggered then.

How am I supposed to make sense of all this? Am I better off or worse off? Can anyone tell me? Hello? No? After two hours of frantic and frustrating research apparently not.

Maybe I'd get more help from a house full of monkeys. Ooh oo oooh haah haah haah!

[Hidden]

Hi!

Sense ... it does indeed not make! I'm not sure what you are expected to take away from all this because I imagine confusion reigns amongst the grey cells.

I was diagnosed with sero-negative RA 23 years ago. There were little or no antibodies found hence the Rheumatoid Factor was negative and the resulting diagnosis. Last week I was told that I am now weakly positive (I guess they have found a few antibodies at last!). Have you had the anti-CCP test done? This is used more accurately for diagnosing RA.

RA can be sero-negative (no antibodies) or sero-positive. Both are types of Inflammatory Arthritis. You can also have Inflammatory Arthritis which is not RA and indeed this 'version', which two of my friends had, can actually burn itself out within two years of onset. Theirs did, mine didn't! It is sometimes considered that sero-negative RA is a less aggressive form of the disease ... I am yet to be convinced of this 11 operations later (including replacement and fusions) and awaiting a total knee replacement! I have plenty of damage to display to anyone wishing to follow this tack of 'non-disabling'!

Biologic Therapy is used to treat moderate to severe disease that cannot be brought under control by DMARDS. Have you previously had other drugs unsuccessfully? I'm surprised they intend hitting you hard with invasive cell changing treatment so early on! Would be very wary of this way forward without very good reason.

Perhaps appropriate to say at this juncture that what you read on the internet is not always reliable at best but often is a veritable source of errors and misinformation. I'm sure you know this already from your research.

NRAS might have some helpful publications to assist you finding your way around sero-negative disease. Have a look at the website. Alas, sadly I think, only the monkeys may have the answers Bunch of bananas perhaps?

Lyn x

[Catwoman66 in reply to Hidden]

Thanks for your as usual incredibly helpful response

My history in a tin can: Basically the disease has nibbled at me since 1995, only I and everyone else thought they weren't linked. A catalogue of arthritic knees, dislocated toes, Meniere's Disease, shoulder impingements followed an initial, crippling attack in both knees in that year.

Since early 2008 a very rapid domino effect of extremely painful, swollen thumbs, index and middle fingers, 'dislocations' and 'gout' in toes led to a rheumatology consultancy. They suspected psioratic arthritis due to asymmetry of attack (only knees, toes flared at the same time - everything else was asymmetrical) but a lack of family history (psiorasis), lack of recent virus and no RF in bloods led to suspected seronegative RA diagnosis pending further investigation. Other symptoms (deformed middle left finger, horrific night sweats, regular feeling of 'fighting something off', feeling fluey, exhaustion, weight loss (woo hoo! Clouds, lining, silver etc) severe anaemia, unbelievable joint swelling that even freaked the rheumatology team out) etc supported this tentative diagnosis.

Allergic reactions to sulfasalazine and plaquenil led to immediate withdrawal. MTX appeared to do nothing and then I had a toxic reaction after 6 months (and subsequent withdrawal led to all over flare which made me realise it was actually working). Leflunomide is about 70% better than not having it but it's having limited success (not stopping the spread around the body. It's now attacking sacroiliac and all other joints it hasn't attacked before). I've difficultly walking, in some form of pain constantly. This pattern of asymmetric attack, taking a nibble at one joint before moving to another, and the permanent disfigurement of my finger has led to the firm conclusion that it's seronegative inflammatory arthritis and the lack of progress with DMARDs has led to the suggestion of Humira or its ilk.

I've managed to get some sense out of my very confused mom who was diagnosed with RA (without the RF) 25 years ago. She had two very bad years but made do with ibuprofen. Then it went! At first I thought they'd misdiagnosed but what she describes is pretty much the same as what I've described above, only without the associated symptoms of exhaustion, anaemia, constant 'flu, night sweats etc. The 'burning out' fits the pattern of your two friends and would give me hope if I didn't know that without 'something' I'd be bedridden, based on the MTX withdrawal. At the time I thought it wasn't doing anything but my God I realised just how effective it had been once it had been withdrawn!!!

My options are to try Penacillimine which another SNIA patient said fixed her for 14 years until she was taken off it, or go for the biologics. To say I'm very, very confused and in between the Devil and the deep blue sea is understating it. If I reject the Humira and try the Pen then I risk further joint damage and spread of the disease, if I try the Humira I've not given something less toxic the chance to work.

Looks like it's down to a throw of the dice

[Hidden]

no give them peanuts lol, my gp is in the process of withdrawing pct funding from my current monkey house.. the contract has gone out of the county... not sure which hospital your is but if it is no good ask to change,, my gp had taken the problem out of my hands, I went to discuss the thorny issue that i have been a liitle unhappy about a few issues!!, and he took the wind out of my sails with telling me that little gem.. the funding goes with the patient../. is how it now works.. we have ££ attached to our heads lol

[Hidden]

the best guess for me is was./is rhueamtoid artthiris and fibromyalgia... ooh bbep beep typing fingers bad aaagh

[Hidden]

Hi Pussie

Long time no blog. Glad to see you back in fine form. Enough to make you want to spit though.

One thing is for certain and that is unpredictability!! You only have to read the blogs and stories of people on here and NRAS site to see that everyone is different even when we have the same diagnosis. It is all so confusing and it takes the power away from you. How do you know how to fight something when you're not totally sure what it is. Like fighting cotton wool.

I think it remains that we have to keep a constant check on how we are feeling, how we are being treated and speak if when you feel it's not right, one way or another. It's not easy. She says stating the bleeding obvious!

How does he know what is bad pain and disabiling, when he hasn't had to deal with it. We all have different pain threshholds, just look at how men cope with a cold! Rest my case.

Keep on keeping on and keep posting and in touch.

Take care x Julie

[Gina_K]

Hi CW,

Can see why your confused! I was straight forward bog standard RA, but they did some further checks for Lupus?? thank god don't have that too. I can't help you with info I thought it was just harder to diagnose RA if the marker was not in your blood (but what do I know?) I take Humira injections twice a month and am on them over a year and have had no side effects to date, injecting yourself is a piece of ... easy peezy, but make sure injections out of fridge for half hour or else stings like f... crazy. The Humira is the business and I have had great relief from it, I take a couple of other things too like methotrex & plaquinil, my consultant says immune system v clever and the plaquinil is a decoy (explained to me in laymans terms) My advice is don't dwell on internet stuff and have faith in a good consultant and go with that. Stay in the day you are in & don't go racing ahead with worse case scenarios!

Good Luck . x

[Gina_K]

Is the next line of that song 'welcome to the lions den'? or is that from House of Fun?