Rheumatoid Arthritis

[blamelouis]

I being tested for some pretty grim auto immune diseases. Blood tests due back Thursday (its been a long ten days I can tell you) Although my major symptoms are sinus and respiratory I am now getting swelling of all my bendy joints and redness over all my joints which Dr Google suggest is a sign on Rheumatoid Arthritis? Pretty stiff everywhere too.

I had a lot of sinus problems for years ..stopped dairy products cheese yoghurt and milk about two months ago and theyre gone.
I take a calcium supplement instead

 

[blamelouis]

I dont think the sulfalasazine is doing much now 10 months later...sore knee and feet make it hard to walk at moment and if it wasnt for celebrex i wouldnt be able to work.

 

[vickster]

I being tested for some pretty grim auto immune diseases. Blood tests due back Thursday (its been a long ten days I can tell you) Although my major symptoms are sinus and respiratory I am now getting swelling of all my bendy joints and redness over all my joints which Dr Google suggest is a sign on Rheumatoid Arthritis? Pretty stiff everywhere too.

RA can affect the lungs, heart, eyes and other organs as well as the joints, just less commonly

Have you seen a rheumatologist or ENT?

 

[Andrew_P]

RA can affect the lungs, heart, eyes and other organs as well as the joints, just less commonly

Have you seen a rheumatologist or ENT?

Been misdiagnosed for years with atypical facial pain. had a constant runny nose for years, and I mean constant. that was diagnosed as unknown allergies. Seen loads of consults. Immunology suggested my swelling facially was Rosacea so my GP sent me to a Dermatologist. She spent 10 minutes looking at my skin with a massive magnifying glass and then started to ask me lots of completely non skin related questions such as rash and swelling elsewhere, stiffness my dental history (which has been awful in the last 3 years) The sinus symptoms and pain and my eyes swelling. She then wrote to my GP (Private referral form my GP they seem to know each other) using a word a had to Google destroyed capillaries in my face I can't see them but I have a butterfly rash. Requesting loads of blood tests unrelated to skin disorders and also seemed very critical of NHS immunology writing off some unusual blood tests as due to Inflammation.

She is focusing in on Autoimmune diseases but mainly Churgs Syndrome and GPA, which I can't deny is scaring the life out of me.

 

[vickster]

Sounds like the derm I saw at Parkside (referral from rheum)

Hope you get some answers soon. It is probably as bad not knowing

 

[lutonloony]

I dont think the sulfalasazine is doing much now 10 months later...sore knee and feet make it hard to walk at moment and if it wasnt for celebrex i wouldnt be able to work.

I stayed on sulphasalazine, worked for a while, but then had to change

 

[blamelouis]

I stayed on sulphasalazine, worked for a while, but then had to change

To methatraxate? Did it work mate?

 

[lutonloony]

To methatraxate? Did it work mate?

I switched to methatraxate, it worked in as much as it seemed to keep the RA at bay, but it made me feel so bad generally that I asked to be taken off it. I was on the self injection type. Just one of those things that it didn't agree with me, but many have no problem.

 

[lutonloony]

3 steroid injections into right foot, due to inflammation of tendon sheaths. Hopefully will be able to start getting out on club runs again. ATM I can just about manage 8 mile commute, although not allowed to ride til Monday now

 

[SpokeyDokey]

Been misdiagnosed for years with atypical facial pain. had a constant runny nose for years, and I mean constant. that was diagnosed as unknown allergies. Seen loads of consults. Immunology suggested my swelling facially was Rosacea so my GP sent me to a Dermatologist. She spent 10 minutes looking at my skin with a massive magnifying glass and then started to ask me lots of completely non skin related questions such as rash and swelling elsewhere, stiffness my dental history (which has been awful in the last 3 years) The sinus symptoms and pain and my eyes swelling. She then wrote to my GP (Private referral form my GP they seem to know each other) using a word a had to Google destroyed capillaries in my face I can't see them but I have a butterfly rash. Requesting loads of blood tests unrelated to skin disorders and also seemed very critical of NHS immunology writing off some unusual blood tests as due to Inflammation.

She is focusing in on Autoimmune diseases but mainly Churgs Syndrome and GPA, which I can't deny is scaring the life out of me.

@Andrew_P

How are you getting on now? Any progress re a diagnosis?

Your post stuck in my mind since I read it a while back - I think it was the Churgs Syndrome bit that registered with me as I'd never heard of it before.

 

[Andrew_P]

@Andrew_P

How are you getting on now? Any progress re a diagnosis?

Your post stuck in my mind since I read it a while back - I think it was the Churgs Syndrome bit that registered with me as I'd never heard of it before.

Thanks for asking! Nothing conclusive, borderline ANCA test first one was lower. All other blood tests they did for autoimmune (10!) came back normal. My IgM is still high, which consultants view varies on from due to the swelling or like the last consultants view that my immune system is doing something/fighting as it is your bodies first line of defence. I think ultimately they will have to biopsy my Sinus, which I may arrange privately.

I think the joint pains and swelling on this post was due to the high dosages of Cortisone Steroids I was on, and tapering off too quickly.

Waiting on an appointment for St Johns institute which I have now but for the 3rd of April, which I cannot believe and I am going to try with my GP to get that improved. Cannot even circumvent it privately as apparently nowhere else like it in the UK. Been the worst year of my life since the swelling randomly started, made a lot worse by no one having a clue what is causing the symptoms and long waits in the NHS. The sensations in my facial\sinus area are unbelievable when its going mad and then it can be agony.

When I looked at both the things she focused on, my symptoms over the last 5 years have matched, so I can see her conclusion plus a birthmark type rash on my neck that I ignored for the last two years according to this lady is a Photosensitivity rash, also a sign of Autoimmune problems apparently.

I had never heard of any of this stuff before, and if I am honest always thought nothing much about autoimmune diseases being quite as serious. I still believe I have a sinus issue, but they don't!

 

[SpokeyDokey]

Thanks for asking! Nothing conclusive, borderline ANCA test first one was lower. All other blood tests they did for autoimmune (10!) came back normal. My IgM is still high, which consultants view varies on from due to the swelling or like the last consultants view that my immune system is doing something/fighting as it is your bodies first line of defence. I think ultimately they will have to biopsy my Sinus, which I may arrange privately.

I think the joint pains and swelling on this post was due to the high dosages of Cortisone Steroids I was on, and tapering off too quickly.

Waiting on an appointment for St Johns institute which I have now but for the 3rd of April, which I cannot believe and I am going to try with my GP to get that improved. Cannot even circumvent it privately as apparently nowhere else like it in the UK. Been the worst year of my life since the swelling randomly started, made a lot worse by no one having a clue what is causing the symptoms and long waits in the NHS. The sensations in my facial\sinus area are unbelievable when its going mad and then it can be agony.

When I looked at both the things she focused on, my symptoms over the last 5 years have matched, so I can see her conclusion plus a birthmark type rash on my neck that I ignored for the last two years according to this lady is a Photosensitivity rash, also a sign of Autoimmune problems apparently.

I had never heard of any of this stuff before, and if I am honest always thought nothing much about autoimmune diseases being quite as serious. I still believe I have a sinus issue, but they don't!

What a frustratingly slow process.

Good luck and I hope next year gets you a good resolution.

Hopefully some better news from you in 2018!

 

[Andrew_P]

What a frustratingly slow process.

Good luck and I hope next year gets you a good resolution.

Hopefully some better news from you in 2018!

Sorry RA sufferers last post from me as off topic on here but just to update the much maligned by me NHS performed and I have no clue how or why.

Almost as if by magic, having got to see my GP yesterday as I woke up and was looking and feeling like I had just done ten rounds as a punch bag and my GP saying doesn't think they can improve the appointment and giving me an industrial dose of Steroids out of the blue had a text message late yesterday another appointment was given to me at the Urticaria\Angioedema dept at St Thomas this one for the 4th of Jan. Not even the GP has any idea why or how.

 

[blamelouis]

HAPPY XMAS to all my fellow stiffs.
May your swelling be temporary and your relief long term

 

[vickster]

Anyone out there taken/taking hydroxychloroquin? Just started and wondering what anyone’s experience has been (esp. regarding effect on vision)