Achille, fingers and now eye Inflammation need hope it will stop.

[Shadow35]

Hi. I'm counting the days to see the rhumathologist. I'm starting to get really discourage. The list of problem can't stop getting longer. I got 5 day only of prednisone for my achille tendonitis. It's was the best days of my last two years. But as soon as it stop the pain and stiffness come back and now, it's affecting the eyes also. I have cortisone eye drop for at least a month. Just to get a little bit of hope. After a diagnosis, do you get a medication that solve almost all your problem or i should start thinking to change career again because i'm close to use a wheelchair. I'm presently walking with a cane at 36. Three years ago i was a carpenter moving non stop.

[Runrig01]

It sounds more like spondyloarthritis than RA. It’s a long slow journey to diagnosis. When you see the rheumatologist they will likely order a special MRI that highlights inflammation. First line meds are NSAIDs, naproxen, celebrex and Etoricoxib are common ones. You usually have to have tried and failed 3 nsaids at full strength, before progressing. Some rheumatologists also like to try a dmard like methotrexate, which are very good for peripheral symptoms, but not spinal symptoms. Then if your MRI shows significant active inflammation, you may be offered biologics. These are very expensive and have strict qualifying criteria, and they need to apply for funding which costs around £8-12,000 per year per patient. Not everyone needs to go on biologics. If this is your first appointment you are unlikely to get a diagnosis, but a plan for further tests to confirm their suspicions. They will possibly try a different NSAID whilst awaiting test results.

[Shadow35 in reply to Runrig01]

Hi. I'm already on naproxen and i had the mri for my finger and my back. The back came out clear for now but they saw something for the finger but they are not sure it's inflammation. I am waiting for my second appointement with the rhumatologist to learn what he found but it is so long i develop other problem. The podiatrist confirm the achille tendonitis and try different thing without any improvement. The previsone help but temporary. I also went in the emergency because of thoracic pain and pain in my jaw. They ask for me to see my rhumathologist in two weeks and gave me some morphine. I was able to get an appointement in three months. And now the eyes if affected. I'm really started to get discouraged. I need to be at school it's like a working place. I need to walk and wear security shoes. I strap icepac everywhere and walk with a cane but i'm short of idea. Every specialist think it's the spondylarthritis.

[Runrig01 in reply to Shadow35]

Please be careful, AS can cause uveitis which is a medical emergency and should be seen asap, if their not improving please get them checked. You say your on Naproxen, but it doesn’t sound like it’s helping much, Etoricoxib is a stronger nsaid for AS. Also who ordered your mri?, it needs to be a Stir sequence mri to highlight inflammation, other specialists and gps can only order T weighted MRIs which are looking at structural / mechanical issues. You also need the stir sequence one of the spine and pelvis, it’s the result of the pelvic one that can lead to diagnosis, as 100% of patients will have inflammation, erosion or fusion of the sacroiliac joints. Here’s a screenshot showing what’s required for diagnosis. Hopefully not too long till your seen by your rheumatologist 🤗

Criteria

[Shadow35 in reply to Runrig01]

It's the rhumathologist that ask for the mri but i don't understand for the fingers it written the mri machine is not good enought to see what the problem are. All the mri was at the same place. I didn't wait for my eyes. I paid for an emergency consult and i now have cortisone drop to put in my eye with other stuff. Last year i had worst and they did nothing. I still have floater from last year but my vision came back. This time it was more dryness like crazy and blurry vision but less pain and no floater. I have the back pain and the chest problem. The only thing is my pulmonary capacity was better than normal so when i have a problem it's like the others normal. I have 10 days lefts to wait. I'm more exited than a child for christmas. At least they cannot say that it's my head anymore. But all the blood test came back negative. It's worry me.

[Runrig01 in reply to Shadow35]

I’m surprised if it was a rheumatologist that they didn’t mri your pelvis. About 10% of people test negative for the gene, so I wouldn’t worry about that. Also not everyone has raised inflammatory markers. You may find that the oral prednisolone contributed to the blurry vision. Fingers crossed for you 🤞

[Shadow35 in reply to Runrig01]

Yes i had the pelvis exam but it's say everything is fine. But my concern is the mri is not precise enought to find the problem with my finger maybe they miss something for the pelvis. And the blurry vision start before the prednisone. The inflammatory marker are alway a little bit higher than the normal range. I'm crossing everything i can hoping he can found the problem. The neurologist put in my file FND like it's in my head. But the rhumathologist was surprise by it. For me it's a good sign.

[medway-lady in reply to Runrig01]

Are you sure? It’s 3 DMARDS not NSAIDs as the DMARDS should elimate the need for NSAIDs. After failing 3 DMARDS then it’s biologics but the pathway has recently changed and people may only be offered 3 DMARDS dependant on severity of disease.

[Runrig01 in reply to medway-lady]

For spondyloarthritis, dmards do not help spinal symptoms, they are prescribed for those of us with peripheral symptoms. So it’s definitely NSAIDs. I know the RA criteria is different.

Biologics criteria

[helixhelix]

don’t get too discouraged yet. When I was diagnosed I could hardly walk, cut up food, wash properly, dry my hair - nothing! Once settled on drugs I was amazed that I was able to get back just about to where I was. So stay hopeful.

[Shadow35 in reply to helixhelix]

Thanks. Everybody talk of where they gonna work and i'm concern nobody gonna want to hire me if i can't walk.

[KittyJ in reply to Shadow35]

Have you spoken to your employer about this? I know you’re not in the UK but is there an organisation like NRAS that could advise you regarding what help your employer should give you to enable you to stay working?

[Shadow35 in reply to KittyJ]

I'm not working yet. I'm finishing school in april. But i change carreer because of an accident at work and covid happen so they push in Québec for everybody to get vaccin to work so i did it and feel ill few hours after that. It never stop. It's been a little more than 2 years now. I pass many specialist that just don't know. But i feel i'm close to get a diagnosis soon. It really look like a kind of arthritis. Problem with finger, back, feet, eye, ribs, jaws, fatigue. I have to add this to my permanent sequel from the accident that was suppose to heal but because the doctor miss it i'm stuck with it. I'm starting to be scare nobody gonna want to hire me. With all...this

[KittyJ in reply to Shadow35]

Ah sorry , I thought when you said school you were teaching, my bad. I hope you get some answers soon. 🤗

[medway-lady]

I’d be staggered here if you got an MRI for RA it’s a blood test and examination. I’ve never heard of anyone having an MRI ! It’s a road best travelled with optimism as it can take time but it’s far from hopeless.

[Shadow35 in reply to medway-lady]

I got the blood test. I thinks it's negative so the mri is for spondyloarthitis.

[medway-lady in reply to Shadow35]

To get confused you can have RA and be negative on blood tests. Lol