Encouragement for the younger ones

cherrybim

I read gickygawky's posting on kmr's thread 26/01 and couldn't agree more

"I think it is vital to try and control arthritis as quickly as one can as studies have shown that early intervention is the key to delaying its progression and severity later down the line."

Yep, I first had RA when I was 32 and it was absolutely ***** hell. Spent a month in hospital but............... I had a wonderful rheumy. It took 4 years but on my last appointment with Dr Wotjulewski he said "I don't ever want to see you again"

Well, he didn't I'm now 66 and it's come back to bite me big time on the bum and everywhere else but luckily enough I do have the most lovely rheumy and rheumy nurses. How fortunate can one be?

I owe that man my life. I had so many years in remission all because I believed implicitly in his treatment.

I truly feel for young people with families who have to cope with the pain of RA. It's just not easy.

Because of the intervention in the early stages of my RA by my Rheumy, I have no joint deformities.

I am so very blessed

So my message would be. Go with what a Rheumy says and if it means oral or injectable drugs, so be it. I ain't dead yet

Cherry x

tkachev

I agree with you Cherry but unfortunately there can be a long wait for some new patients and also there are those who have GP's who are not clued up about R.A or tell the patient it is all in their head.
Despite my R.A being well controlled I have been left with many damaged joints that require ongoing replacements. This was because I waited a whole year to be diagnosed. This is stated on a letter my rheumatologist sent to the DLA.

Hope you are well in sunny Eastbourne. I shall be visiting in April R.A permitting!

Elizabeth

cherrybim

I'm sorry to hear of your mismanagement with the RA Elizabeth

I'll be happy to show off Eastbourne to you in the Spring We can potter about together, the seafront is quite user friendly

dreamdaisy

I agree with you cherrybim, I wish it had been so for me, it wasn't, it's too late now and I no longer care. My rheumatology nurse told me recently that they now start people on meth/sulph straight away, and if there is no appreciable difference in their conditions within six months then they are whacked straight onto the anti TNFs. That is some culture change.

You were lucky that you were referred early, found a good rheumatologist, and have had a number of arthritis-free years. We are all so different in how people react to our conditions in the early stages. There are still GPs out there telling people in their twenties that they are 'too young' for arthritis. Utter rot.

How's the foot? Behaving? Looking elegant? It's Friday night, shall we head for the den? I'll dig out barbara12. DD

spacey

years of being fobbed off by the gp has unfortunately led to damage and additional problems for me, my advice definately persevere. My other health probs have tended to take presedince and I am guilty of not adressing my back pain early enough and just not having the strength deal with any more! but now onwards and upwards x

frogmorton

Hi cherry

Wise words from you - thank you so very much for taking the time to post.

I sencerely help he will be able to get things back under control for you very soon.

Love

toni xx

Starburst

I agree with what you're saying and my heart goes out to all those who are suffering badly with joint damage.

I don't know if I count as young enough but I was diagnosed a year ago, aged 21. I've been fighting hard with my rheumy to be treated aggressively because I don't want joint damage when I'm older. He's been fussy because he says I'm too young to be on steroids and drugs that may affect my fertility. I totally am with him on that one but I'm scared of joint damage. I know I am seronegative and my arthritis isn't very severe but I don't want to have any regrets. I hope to live till at least 90 or so and I want my body to be as healthy as it can be.

From being on these boards, I've reached the conclusion that arthritis sucks whatever age you are!

gickygawky

Hi Cherrybim,

Thank you for taking the time to post and offer your 'encouragement for the younger ones'. I am heartened to read that your believe that you owe your lengthy time in remission to your rheumy and the treatment you decided to accept. This is the first time I have read of a person 'the generation before me' reflect on their condition and comment on the effectiveness of early intervention based on first hand experience.

I sometimes find it hard to accept that it's necessary for me to have the treatment I do and I admit I find the strength of the drugs and the long list of side effects daunting to say the least, however these things pale into insignificance when I consider how much worse my condition may become in the future without doing these hard yards at this age.

It sounds like I am being pessimistic about what my future health holds but I would rather think of it as being realistic. Given that in the handful of years I have had arthur it has managed to affect almost every joint possible, even with such treatment, I dread to think what I could be like later down the line without such treatment. I know only time will tell but at least I know I have all my bases covered and if I go down, I go down fighting!

Cherrybim I hope you are feeling better shortly and even better, back in remission!

Arnax

cherrybim

Hi Spacey, Toni, Starburst, Arna and DD,

Yep, we all have options in our choice of drugs offered by the Rheumy but we have no alternative other than to accept them (DD will love the pedantry in that )

What I really don't fathom is why nowadays the Rheumatologists don't go straight in with the big guns. That is a very naive attitude on my part I know and naturally it won't be effective in every case. The NHS has gone backwards rather than forwards. I was one of the babies who benefited from the inception of the NHS.

At the time I was first diagnosed with RA I was fortunate enough to have private health insurance, the top whack scale and my Rheumy said it didn't matter a jot, he'd put me in the local hos and treat me as an NHS patient so he could keep a daily eye on me. It was brill

I'm a bit flarey at the mo, despite the Cimzia so I'm giving DD the nod for the Den tonight

It'll be a celebration for my right foot. I've never seen it so perfect and joy of joys if the pre-op assessment goes well my dishy Orthopod is going to do my left foot on the 16th Feb. I only regret that despite having well manicured hands with devilishly red painted fingernails at my age he's not going to kiss my hand. Well the veins and wrinkles would be a bit obstructive wouldn't they

dreamdaisy

It comes down to who listens, who realises that there is a problem and who cares enough to do something about it. I lost three years (97-2000)because I believed my GP who said that my fat left knee would 'sort itself out'. It never has, but I believed her 'cos she was a doc and therefore I thought she knew stuff. I have learned that lesson.

I was finally referred to the hospital by the physios at our local football club - I was that desperate for help that I went to see them, because, as my friends reasoned, 'if anyone knows knees they will' - they were horrified by mine and took action. Bless Dave, Steve and John. That was 2000.

I then lost another year whilst orthopaedics and rheumatology fought over whose pigeon I was: ortho took the initial steps and rheumo then took over. I did not start any medication until February 2002, four years and ten months after it all began. That was sulphasalazine, which was far too little and far too late.


I am glad that the new ones to this are 'fast-tracked' - but awareness must still be raised as there are too many GPs out there who still associate arthritis with older folk. I don't think it right, however, to begin with the anti TNFs - they are far too patchy in their effectiveness. Some react very well to meth and the other early meds, so I think begin with those then build if necessary. We are bugged by arthritis, and think yes, plunge in with the expensive stuff, but trusts have to spread their money very, very thinly. And that spread is set to get thinner.

I'll answer the pedantry point tomorrow - there is rice to be cooked! I am pleased about the foot tho, cherrybim, that is wonderful news. DD

cherrybim

dreamdaisy wrote:

I am glad that the new ones to this are 'fast-tracked' - but awareness must still be raised as there are too many GPs out there who still associate arthritis with older folk. I don't think it right, however, to begin with the anti TNFs - they are far too patchy in their effectiveness. Some react very well to meth and the other early meds, so I think begin with those then build if necessary. We are bugged by arthritis, and think yes, plunge in with the expensive stuff, but trusts have to spread their money very, very thinly. And that spread is set to get thinner.

I'll answer the pedantry point tomorrow - there is rice to be cooked! I am pleased about the foot tho, cherrybim, that is wonderful news. DD

I agree with that DD, the anti tnfs aren't necessarily the right guns to fire immediately. It's more the modern shilly-shallying about with "We'll have a go with cortisone (in your bum and every other joint we fancy) and see how that goes. That way we don't have to see you for another 3 months at least, phew" I would add that it's not happened to me. It's cast in stone on my ancient notes "no response to cortisone"

FGS arthritis has been about since the ancient Egyptians. I don't need a lobotomy I need HELP

tkachev

I agree too. It is always best to find a level of meds that work starting with the sulfa's, plaquenils and then up to MTX and then anti-tnf's. But you need to give the meds some time to work.

Hi Cherry,
It is my brothers 60th so in the early planning stage at the mo. I haven't been down the promenade for years but thought nothing of walking right along the seafront in the good old days.

Elizabeth.

cherrybim

tkachev wrote:

I agree too. It is always best to find a level of meds that work starting with the sulfa's, plaquenils and then up to MTX and then anti-tnf's. But you need to give the meds some time to work.

Hi Cherry,
It is my brothers 60th so in the early planning stage at the mo. I haven't been down the promenade for years but thought nothing of walking right along the seafront in the good old days.

Elizabeth.

Well there you go or come then Elizabeth

We always show off down here 'cos it's said that we're the sunniest place in England. The Eastbourne Tourist Board is quite superiously sniffy about it

I can make a lovely hamper for our promenade but your brother will have to carry it. Then the best place to enjoy it must be just before we get to Butt's Brow. It'd be a heck of a long walk if we were to start from the beginning. The choice is yours

tkachev

I am under orders to visit Drusillas. We went last time I visited in 2009 and my daughter loved it.

I remember Butts Brow from when I was a child. And I love all the Bluebell woods at Arlington.

It will be a busy visit.

Elizabeth