How do I get a diagnosis and treatment if I have Seronegative Rheaumatoid Athritis?

[Anastasia484]

When taking Inteferon Ribervarin treatment  6 years ago I suffered terrible pain in my knees, feet, hips and thighs and suddenly became unable to walk through an inability to move my legs - this lasted 6 months and after treatment (for Hep C, the treatment was successful) the symptoms did not go away. There where periods when I was better able to walk, periods where I was almost entirely mobile..  but I've spent a total of 18 months in a wheelchair, and as years went on the pain entered my hands and shoulders, now it frequently becomes so bad I can not move my fingers, or bend my knees. The pain is disabling and often associated with fevers. It is much worse in the cold and I use products such as deep heat and compression bandages and gloves to prolong my ability to move. No medical cause was found and I was told it was psychosomatic - a possibility I entertained for some time. Now my psychologist believes I have a medical condition and my GP thinks I have an auto-immune disorder, but it is beyond his specialty to know how to help. 2 years after my reaction to Inteferon, my mother (also had Hep C- a coincidence) also went on the treatment and suffered pain/ loss of mobility that lead her to be wheelchair bound, this was put down as Interferon exacerbating her Rheumatoid Athritis and Cyroglobumeania. A google search shows that Inteferon has induced Athritits in those susceptible to it, although this is rare. 4 months ago I had a horrible flu that lead to a flare-up of my symptoms, and haven't yet recovered. During this flu I also got genital ulcers (embarrassing! Sorry for details!) - these tested negative for all STDs and the sex health clinic told me it was most likely to be a result of auto-immune disease. I was given Presnidone which worked instantly, but to my amazement - it ALSO stopped the pain and mobility problems I was having in my joints... amazing! After 6 years this is the ONLY drug that has had any real effect. So I finally saw a specialist, and he has taken me off it - saying I shouldn't be on such a strong drug when I don't have a real diagnosis that warrants it. I believe it's likely I DO have Rheumatoid Arthritis, but I do not know if it will ever show up in blood tests... I understand this can happen, the main issue for me - is getting treatment so I can have SOME control over my body and mobility. After 6 years of this condition that has been utterly debilitating and disabling, I have lost almost everything in my life. Presnidone had terrible side-effects (particularly tummy problems), but it WORKED... which leads me to believe there is a medicine that can help my symptoms. I want to trial other arthritis medicines. It has taken years to have doctors acknowledge that the condition is even 'real', how can I get treatment without RA being indicated in blood tests?

[TheLightSeeker]

Hmm, your Endo was correct to take you off Prednisone.

It is designed only for short-term treatment, mainly because it is an immuno-suppressive synthetic corticosteroid  drug.
When taken long-term, the adrenal gland  has reduced ability to produce cortisosteroidal hormones, due to the HPA axis negative feedback loop.
One of the most serious health complication risks of this is Secondary Adrenal Insufficiency.

Coincidence is not a concept anyone can use to explain
the concurrence of your mother's Hep C treatment complications and yours, since there's strong suspected causal association. This is NOT a coincidence!

In the Journal of Clinical Rheumatology, there's an article (of specific interest to you perhaps) tilted:

"Interferon Alpha-Induced Lupus Proof of Principle"

Following there's an excerpt FYI:

"Although clinical SLE is relatively rare during IFN-α therapy (<1% of patients treated with IFN-α),8 a greater number of patients develop a “lupus-like” syndrome, meeting fewer than 4 of the 11 formal criteria for SLE.9 Studies of patients receiving IFN-α for hepatitis C suggest that individuals with a positive antinuclear antibody test before therapy may be more likely to develop autoimmune complications while receiving IFN-α therapy.10 There are also reports of IFN-α therapy worsening pre-existing autoimmunity,11 and due to these reports autoimmune disease is listed as a relative contraindication to IFN-α treatment".

There are genetic factors predisposing Hep C patients
on Interferon therapy to Systemic Lupus Erythematosus.
I can supply a ref to a study on that. I have it at my office somewhere. (I'm a medical research and study buff, lol!)

I'll post additional information when I have more time.

Best wishes,
Niko