Hi Shenac

Glad you've put up a post. I've found this forum really helpful. My biggest joint problem is my right shoulder! Also my knees and wrists. I was diagnosed just over a year ago - and am also a failed MTX person, I could only tolerate low doses of sulfasalazine - so then they tried Leflenomide - which had too many side effects for me. So tomorrow I start on Humira! Hoping it will work! In the meantime, while waiting I was fortunately given steroids to keep me going. These worked really well for 2 months, but not quite so good now as my joints are all hurting again. They also lose their effectiveness the longer you are on them! I've also had lots of steriod infusions and joint injections, which work for a short while .

I agree it is a horrible disease and it has taken me a long time to come to terms with it (or try to!). I'm 49 and have been off work sick for ages now. So it has been a complete change in lifestyle. I am just beginning to find things I can manage to do.... but it has been a slow processes as I've been very down about the whole thing. I have been so encouraged by people on this forum - and have started helping with making coffee for a toddler group, which is something I can just about manage.

I am very lucky as I have some really good friends and an amazing husband... who has really helped with taking on a lot of the practical duties in the family. Even my 18 year old son has mastered the washing machine! I had to split up the jobs between the family... but they have been amazingly good about it all. In return, I restarted making the lunch sandwiches - which is something I can manage - and they all seem to really appreciate it. It also makes me not feel so guilty asking for help on other things!

Staying positive definitely helps and adjusting and finding new ways to do things has proved interesting! I even accepted special assistance on a flight to Majorca last October - a hard step to take, but well worth it! I also got an automatic car which actually helps the shoulders as well as knees!

love Anne xx

Hi Shenac

Welcome to the forum. A great place to be for support and information; lots of folk, lots of knowledge and a wealth of tried and tested experiences!

I'm Lyn, married to Mike, we have four children, Abby 23, Ian and Jake 17, and Louis 16. All four in various stages of education! We live in Thornton Cleveleys in north west Lancashire. I was diagnosed with sero-negative RA nearly 23 years ago and have since run the gamut of medication and had several surgical procedures along the way. Currently on Enbrel, Leflunomide, Prednisolone and Naproxen, Nortriptyline and a jolly assortment of pain killers! Struggling somewhat at the moment after knee surgery last summer, two lots of knee aspirations and joint injections in 7 weeks and a further referral to Orthopaedics, this afternoon, oh joy! But heyho...

How long have you been on sulfasalasine? It may need something additional adding to the mix such as hydroxychloroquine or similar, or if the sulf. is failing perhaps consideration of anti-tnf. I wouldn't put up with ongoing problems for more than a couple of months as uncontrolled disease can lead to long term joint damage. I suggest seeking an early appointment with rheumatology.

Try not to feel daunted by this disease. You may find that when the disease is well controlled you will once again be able to do the range of things you used to do. You may feel that your life has been stolen but what it has done is opened new doors to an assortment of life's wonderful things. Basically, look at your life and see what small adaptations you can make to make things that little bit easier. Be positive, state of mind can make a big difference!

Hope you start to feel better soon. Keep posting


Lyn x

Hello Shenac

Welcome to the forum. It took me a few months before I plucked up the courage to post and so glad I did, that was back in 2008.

So much advice from people here that know exactly how you are feeling. Once you do get your drugs right I am sure that you will begin to feel much better. I was lucky and the first ones I tried helped alot. I think the word 'patient' really does refer to us with RA because thats what lots of us have to be while we wait for the right combination of drugs to work.

Keep posting.

Paula x

Hi Shenac, and welcome to the forum - lots of friendly advice and understanding here, not to mention useful info.

It`s very frustrating waiting for the right drug/combination of drugs to be found, then for them to start working - it all seems to take forever, when we just want a quick fix! Once your RA is under control things will improve.

I was diagnosed 5 years ago, and after trying & failing on various meds I am now on humira, and doing reasonably well.

Keep posting,

Kathleen C x

Hi Shenac

Welcome to the forum. As has already been said you will find the information and support from this site invaluable.
I am 56 and I was diagnosed nearly 5 years ago and have recently started on Enbrel but am still taking methotrexate and sulphasalazine at the moment/
Look forward to hearing more from you in the future.
Hope they soon sort your medication out.

Best wishes

Sue

Hi Shenac
Welcome from me too, Im Ceri diagnosed nearly 2 years ago im 42 and totally understand about the change in lifestyle and the difference this horrible disease causes (I am nothing like the person I was 2 years ago!) This site is a lifeline though, really dont feel so alone.. Im currently on methotrexate and about to start infliximab infusions as well. Like you I suffer a lot with my shoulders and have had one failed operation on my left one. Really hope the sulfasalazine helps and look forward to hearing more from you take care xx

Hi Shenac - glad you found us and have started posting. It really helps to "speak" with others who understand as it is tough when no-one else really gets what you are going through.

I'm Ailsa, living in Warrington, Cheshire. I teach English and have 4 teens/20s at home and another nearby. I was diagnosed last year too and started Enbrel 5 weeks ago as MTX, Leflunomide and Hydroxy didn't do enough. I;m still on MTX but hope to at least lower the dose eventually.

Looking forward to getting to know you better. XX Ailsa

Dear Shenac,
Hi there!
Sorry to hear your in pain and hoping that it
will soon be brought under control.
My name is Fiona and I am 53 too!
I have been diagnosed since the age of 38 and
still coming to terms with it!
I take Hydroxychloriquine for R.A and although
hardly a wonder drug it takes the worst away but
it still takes me 3 hours from getting up in the morning
to moving like a reasonably normal person!
But hey, thats been my choice so far because I am not
the worlds bravest when it comes to taking drugs.
It does stop that all over pain that you are describing though.
I have experienced that in the early stages (when I was refusing all drugs)
and ever since that day I have known that drugs are neccessary.
I am hoping that your loads better soon.
Best wishes,
Fiona