Damage done early in the disease

[Kittykatxxxxx]

I have read in several places that a lot of the damage occurs in the first few years of the disease one study says the first 5 years . Has anyone else heard this? Or had experience with this?I have had this 3 years untreated and I wonder what kind of prognosis someone like me has as most things talk about early diagnosis being essential. Any thoughts welcome X

[PB1950]

Hi Kittykat

I was diagnosed in 2006 started on Methotrexate took other drugs over the years Sulfasalazine ,Celocoxib, Prednisolone, Naproxen, Declofenic, Humira, Enbrel, Infliximab, In 2010 ended up having surgery, shoulder resurfacing arthroplasty because the disease had damaged the shoulder joint to the point of loosing much of the movement, now I have 75% use of the shoulder.

I hope this helps Paul

[Kittykatxxxxx in reply to PB1950]

Sorry to hear about your shoulder Paul

[Philip]

I was diagnosed 2 years ago and for me it was much too late, the damage yo my ankles and my feet is beyond help apart from fusion, I'm on sulfasalazine but I'm at the rheumy on Saturday and I'll talk to him then about all the probs lol, keep him busy.

Philip

[Kittykatxxxxx in reply to Philip]

sorry to hear that Phillip hope you can get sorted soon

[Philip in reply to Kittykatxxxxx]

Thank you Kittycat and I hope your gonna be ok.

[Ronnie63]

Hi

When I was first diagnosed (Jan 2012) I too read a lot. Most talked about the most damage being done in the first two years of symptom onset and the 12 week golden opportunity from symptom onset to treatment starting. I remember being anxious t get started ASAP on the drugs

. Anyway, my first set of blood tests showed I had a very high rheumatoid factor and very high anti-CCP levels. Interestingly my first set of X-rays showed I had no damage, so I started on MTX in Feb 2012, introduced hydroxy, then sulphalalazine (the latter f which I'm no longer on). I have since had all the bloods and X-rays repeated in August 2013 and I still have no damage which is great.

On reflection I had symptoms years before I noticed anything major r sought advice (especially the early morning stiffness), the fatigue I attributed to my under active thyroid, busy job etc. my point is that mine s a story of success in spite f arguably getting a diagnosis later than i could have done, so please take heart from my experience

I wish you all the best

Ronnie x

[Kittykatxxxxx in reply to Ronnie63]

Thank you Ronnie x

[Hidden]

Hello BOB here

I was diagnosed thirty years ago. with good treatment they can suppress a great deal of problems. If you have failed to treat for a long time the problem will most probably be worse although everyone is different

Good luck, keep taking the tablets

BOB

[Kittykatxxxxx in reply to Hidden]

Thanks Bob

[Hidden]

It seems to be a very individual disease and the emphasis now is on early diagnosis and treatment in order to prevent joint destruction. Everyone's onset is different, for some it's dramatic and disabling and for others it is a more gradual process. My personal philosophy is to not worry about what I can't change - you say that you've had it for 3 years untreated, is this 3 years undiagnosed? or 3 years not requiring treatment? Whichever it is, you can't now change that fact and many of us went a long time before being conclusively diagnosed.

With all the modern drugs - and more coming on stream all the time - the levels of joint damage and disability that were seen twenty or thirty years ago are largely a thing of the past. Yes, some people have an aggressive onset and severe disease but others have their lives revolutionised by anti-tnfs or biologics and the disease is put into a drug-induced remission.

Try not to scare yourself with what 'might' happen, rather try to stay in the here and now and live your life as it is now:-}

Cece x

[Kittykatxxxxx in reply to Hidden]

Thanks Cece unfortunately 3 years untreated but you are right what is done is done X

[francherry]

Hello, Cece has put it very well about it being an individual disease and the modern drugs we have available now. Personally I have sustained damage within the first 3 years of the disease, when I had a long break from drug therapy (my choice, due to previous bad reactions to drugs) during which I sustained bone erosions. Sometimes I wish health professionals had been stricter with me about the implications of holding off treatment but then I think I have to look forward and aim for drug-induced remission, however long it takes. Have you mentioned your concerns to your rheumatologist? They could always do an ultrasound or other scan if you wanted one. I agree it's important to focus on the present and stay positive, as there are lots of treatment options

[Kittykatxxxxx in reply to francherry]

Thanks I havn't but I have an appointment so maybe I will tell him my concerns x

[calflo]

Hi Kittykat,

My illness started in April 2009, before I went on holiday for a week. I was having difficulty walking far, as though I was walking on a golf ball, I was also very tired and lacked energy. I put it down to being a little overweight and decided to start the gym when I got home.

I promptly joined the gym to lose weight and try and get fit. During the three months I attended the gym I started having problems with my knees etc. Collar bone, shoulders, hands etc, so I attended a private physio for treatment. During one of our sessions I told her both knees were affected, she then told me it was a multi muscle problem and she could no longer treat me, I needed to go to the Doctors and ask for blood tests to rule out RA! It was the best advice I ever received.

By December I was diagnosed with RA and put on a course of anti inflammatory drugs as I wanted to put off treatment as long as possible. Then in the February 2010 my consultant told me I could not put off any longer as this could result in permanent damage to my joints. I was prescribed MTX from March 2010. I went through a few more flare ups, but have not had any since May 2012. In May 2012 I have been attending the gym, and eating healthier. I am a firm believer that this has contributed to my good health presently, and consider myself very very lucky when I listen to some of the problems other people have. Be brave and go for the treatment. Do not live in pain any longer. Big hugs Carol x

[Kittykatxxxxx in reply to calflo]

Thank you Carol X

[Hidden]

I'm 25 and was diagnosed 4 years ago in Oct 2009. I was told, at diagnosis, that I had all the factors for a positive outlook - fairly quick diagnosis, RF negative, anti CCP negative, normal CRP although my ESR is almost always incredibly high. My rheum (at the time) felt he didn't want to treat aggressively because although he said it was seronegative RA, he felt it was more Lupus-like, so he didn't want me to be on such toxic meds. In hindsight, his decision was very bad and I should have pushed a little harder for better medication. Within 3 years, scans showed really bad damage in my jaw and a fair bit of damage in my feet and ankles. I've been on anti-TNF treatment since August and the change has been phenomenal. I'm only sad that this wasn't offered sooner, instead of messing around on DMARDs. I hope that it will prevent more damage from occurring.

[Kittykatxxxxx in reply to Hidden]

Sorry to hear about the damage you have suffered I feel they should be offered sooner to people. I hope that the worst of the damage that has occurred has been done and the anti-tnfs will prevent more :).