Rheumatoid arthritis

Thanks for your post Teetime. I left the psoriatic RA support group for similar reasons to those you gave about the Lupus group.

I absolutely agree with your comment about the importance of patient and clinician working together. I overheard the physio telling her student about me, and commenting that I remained actively involve in my treatment. A close relative who has the psoriatic/ra has had a much longer wait for effective treatments than I have. She was told not to take anti inflammatories, to use ibuprofen and paracetamol. Now she's on proper treatment, including a biologic, she's got her life back.

You're spot on about the risk of depression with any chronic health problem. It's a great pity the rheumatology clinics don't involve psychologists early in the treatment regime. Yes, you have a chronic condition but it doesn't need to have you!

I am sorry del and hope you are not in too much pain at the moment. my mother had RA and I have SLE (Systemic Lupus Erythematous) and OA on top my eldest daughter has psoriatic arthritis. I have nursed many patients with all forms of arthritis and have learnt a number of things about it.

The first thing is that pain is not good and does not have to be endured. I have seen so many people who say they are 'saving' their painkillers until it gets really bad. You have to keep on top of the pain so taking the medication as prescribed is imperative.

Secondly depression is a common feature of many long term illnesses and also needs appropriate treatment. If you are in pain and depressed then its extremely difficult to maintain a good quality of life. I used to manage a large team of specialist nurses in a number of long term conditions and what we used to tell patients 'You have a long term condition don't let it have you'. By that we meant don't make this illness your personae and that is why we resisted labelling people. You may hear people say for example I am a diabetic- this is a negative frame of mind and we tried to change this around to ' I am a person who has Diabetes'. It may sound trivial but in terms of how the mind deals with things its a powerful way of thinking. My mother made a 'career' out of her condition, brought it into every conversation, manipulated others through it and used it to get her own way and to excuse her bad behaviour and generally made everyone's life a misery. My daughter tried some of this but realised it was cutting no ice although she does lay it on thick with her consultant and has a result has ended up with many treatments she didn't really need and which had little effect.

I'm sorry this is a long posting but I do feel that long term conditions need active management on the part of the clinician and the patient in partnership. Co-operation with the management plan is vital in terms of keeping to the prescribed regime of medication, taking exercise as able, eating healthily and staying positive. I have recently stopped my membership of a Facebook Lupus UK site as all people seem to do is winge- that's not helping anybody. Yes there are good days and bad days and coping strategies are largely personal but know when to rest and when to play and try for a balance if you can. Gransnet is a great place to get support for the bad days and to share the joy of the good ones. Here endeth the lesson. I wont apologise for banging on though I do feel really passionate about this. Good Luck del and all others and please try not to think 'victim' or 'sufferer' think survivor!!!

My eldest daughter, now aged 50, was diagnosed with rheumatoid arthritis around her 20th birthday. At the beginning, she had 2 weeks in hospital for complete bed rest, with her legs resting in special moulds, and over the years has had both hips, both knees, and one wrist replaced, plus a bone removed from her elbow, but apart from that, her only medication has been Sulfasalazine(sp). She saw the same consultant for over 20 years, till he died, and she was put into the care of a much younger man. He was horrified when he first saw her, and how badly disabled she was, he said he couldn`t believe that she`d had no other treatment or medication over all those years, said that he could have helped her greatly if he`d seen her years ago, but that it`s too late now for anything to help. Hopefully Del, you`re seeing a more enlightened consultant than she got, and that your illness will improve over time, my best wishes to you.

I do not know anything about this disease, except that it can be painful but I wanted to send you healing and encouraging thoughts. I hope they get a good treatment sorted for you and that you fare as well as Cate's DD.

My daughter was diagnosed at 30, 10 years ago now. It was dreadful. She couldn't button her shirt, put on her shoes or lift a kettle. She was put on methotrexate and then put onto Humira (an injection every 2 weeks) and her life changed spectacularly. She is now fabulous and travels internationally in an exhausting job. I am so proud of her and even she cannot believe how her life changed so dramatically after Humira. She is still in remission and tested every 2 months. Good luck to you Del. BTW, she found the RA groups very helpful.

Del, I have inflammatory arthritis, psoriatic and rheumatoid. I'm fortunate in having a GP who worked with my consultant, and my treatment regime has been good.

The advice is the disease is aggressive, and has to be treated aggressively. The earlier treatment starts, the more effective it is. I'm on a low dose (previously very high dose) of methotrexate, and a weekly enbrel injection. It's a biological treatment, and gave me my life back. Good luck Del

Del I am really sorry to hear that you have been given this diagnosis. I do not have it myself but I know a fair bit about the subject. Where have you got it and what type do you have?