RA - What Else ?

[lizcoll2312]

Last night I watched a Disney movie with my son. It was Snow Dogs starring Cuba Gooding Jnr and James Coburn. It was the first time I became aware that James Coburn, the 'King of Cool', had RA. I noticed his poor hands had skewed into 'flippers' with this horrible disease. He suffered from it for over 20 years, but still lived into his 70's. From time to time I see what RA can do, particularly when I see older people who missed the modern drugs like sulfasalazine and methotrexate. My own mother for one. Her hands and her feet look so sore, I don't know how she has coped with the gradual deterioration as she never complains about it. Surely it must be such a painful process. I have two joints in my fingers which are very painful, so having every digit twisting and swelling must be agony. I would like to know why GPs who can see the physical effects of RA i their older patients have never tackled it and allowed the joints of their patients to be slowly destroyed. My mother's GP has never diagnosed her with RA, nor has he ever offered her DMARDs or anything else. He has told her that her problem is 'in her head'. She has told her doctor about her neck being stiff for 20 years, but has always been sent away with the same advice, that there is nothing wrong with her !

[Hidden]

so wicked, my mum's hands are bent and swollen, think they dont bother much with older people though she is only 68 -69 not really old, she came with me to one of my rhematolgy appts, but the consultant showed v liitle interest in her hands....., her probs started early 50s...., mine was diagnosed eventaully at 44, think it really started at 42 or even earlier but i ignored it and the drs ignored it..............

[Tricia-P]

I met an old lady who had just been diagnosed because she had changed Drs..

The Rheumy when she met him said that her old Dr should be struck off for ignoring her condition. She is now 76 and started noticing signs of RA when she was in her 40's

Made me feel ashamed to moan after what she had been through

[Hidden]

Unfortunately it is the same story over and over. When I was diagnosed 23 years ago I was perhaps lucky; I was 31 and it was unusual, it sparked an interest. It was quickly recognised by my GP and although I had to wait 9 months for the rheumatology appointment it was acted upon.

The drugs then were poor and did little/nothing to slow the disease process. Anti inflammatories, pain killers and steroids were the order of the day. By the time the more modern drugs appeared in the 1990's, methotrexate, gold etc the damage was already done. Many 'older' people will have been considered to have arthritis, and indeed many do, auto-immune disease has only really come to the fore in the last 10-15 years.

RA is difficult to diagnose, there is not one single test that says you have RA. Going back 20-30 years people didn't toddle off to the docs as readily as we do now, you went because you were ill not because you had sore hands due to 'arthritis', which it was accepted everyone got as they got older.

It's like any disease, time brings with it heightened awareness and better treatments. I am not saying more couldn't be done for elderly patients and indeed we should all have access to appropriate services. However the fault for non treatment of possible RA isn't entirely down to the medical profession.

Alison and Liz your Mum's need to be seen by rheumatology and a proper diagnosis made. GPs cannot initiate DMARD treatment but they can refer on. Nothing can be done about the joint damage, except surgery, but further problems and deterioration can perhaps be slowed down. If GPs won't do the basic blood tests to check for inflammation etc. or refer now is the time to change GP. I wish them well

Lyn x

[Hidden]

Hi Liz, I have very much the same experiences as Lyn, had first symptoms at the age of 28 but only in my finger s and was given steroids and anti inflammatories. Then getting pregnant made things even more difficult was eventually referred to a Rheumatologist but continued to have it through pregnancy. hence, late diagnosis as having RA through pregnancy was literally unknown. Didn't take anything through the pregnancy either so the RA just went out of control.

I agree with Lyn get your mom to change GP. Shouldn't matter how old someone is they still have a life and a right to treatment.

mand xx

[lizcoll2312]

Unfortunately, my mum has been 'fobbed off' for so long now that she has developed mental health problems from no-one listening to her. She is 81 now. I don't know what to do for her as she no longer has the mental capacity to take advice and act on it. All she talks about is her neck and bought herself a cushioned neck brace which she wears now and again when it is particularly bad. It is SO obvious that she has progressive and deteriorating joints, that I do hold her GP responsible for not prescribing medication for RA. There may not be accurate testing for it, but when twisted joints are glaringly obvious, there is surely a case of negligence when GPs don't act ?

[Shelley1701]

My GP was really on the ball. My hands and feet suddenly swelled up and he straight away got my bloods tested and as soon as they were back he started me on sulphasalazine. He suspected my condition because my mom has it, and my gran had it. I was referred to a specialist then changed to methotrexate as the sulphasalazine stopped working. Unfortunatly my hands still got damaged, dislocated knuckles on one hand, slipped tendons on the other but they are not painful. I had been complaining about swollen hands before this but the consultant didn't do anything. I am also now on Humira to hopefully prevent further damage. I saw an interview with actress Kathleen Turner and she had a helluva game getting diagnosed and treated. When she complained about swollen feet she was told to stop being so vain and go buy bigger shoes!

[lizcoll2312 in reply to Shelley1701]

Hi Shelley, are you South African by any chance ('mom' and 'helluva' give me clues) ? How long did you take sulphasalazine for before it stopped working ? I think it might have stopped working for me as my fingers and feet joints are getting swollen and sore. It will take two months for me to see a local RA specialist. 2 months is enough time for irrepairable damage to be done. Hope there is a cancellation. I have also been getting burning pains in my groin/pelvis area for years now, but there is no sign of anything in MRI scans. The pain keeps me awake at nights sometime. Does anyone else have this ? I think it might be RA in my hip joints.

[Shelley1701 in reply to lizcoll2312]

No I'm not South African. I was on sulphasalazine for 5 months. My GP phoned me to say my blood results indicated it wasn't working anymore and referred me to the hospital. I know that it doesn't take long for irrepairable damage. My hands went so fast I can't remember when exactly it happened. It was sudden and not gradual.