are our american cousins more on the ball???? RA treatment

earthspirit

http://rawarrior.com/the-10-fundamentals-of-rheumatology-care-for-rheumatoid-patients/#.T_IgwacwicM.facebook

stickywicket

Maybe. Maybe not. You have to bear in mind that, in the States, everyone pays for all their medical treatment and consultations and forms one way or another. (I doubt any of us could afford to live there with all our meds, appointments and operations.) Also the USA is a very litigious society so they are very into reports and form-fillings and covering their backs. I've no complaints about the treatment I've had in UK. I'd once to see a GP over there and wasn't impressed.

Starburst

stickywicket wrote:

Maybe. Maybe not. You have to bear in mind that, in the States, everyone pays for all their medical treatment and consultations and forms one way or another.

I agree with this. I visit an American RA board and I did notice they press ahead with the newer drugs far more quickly, change them more frequently and seem to hit the disease harder. HOWEVER, even those with medical insurance pay a lot of money towards their treatment and I'm not sure they necessarily have much better outcomes than we do. I do think the NICE guidelines need to change though, as accessing the newer treatments are not easy, although I understand why.

earthspirit

what i took from the report is that a lot of the meds really dont work for that many people and even when they do reduce or slow down the disease, they can cause untold damage and do not help much with the pain factor.

ive had RA a very long time and really my bones and joints are showing minimal damage, without any treatment as i did not have a dx. this came after an appropriate blood test which had never been done.

have spoken to numerous american myself with RA and after years of all the meds, have resorted to other methods to deal with the disease and pain.

ive been told by rheumatologist that i am probably correct in my assumption that dmards wont work very well with me as the disease is way past its early stages. due to medical ethics, i cant be treatet with the tnfs until at least 2 dmards have failed. after 3 weeks on suflasalzine my liver counts had risen quite steeply (as well as some other nasty side effects) i am not prepared to risk further damage to my body which is already seriously attacked by this disease and rheumy admitted that i am correct in my thinking with that too. he aint got a choice though as its not him who makes these ethical decisions.

i just feel that many of us are not getting the best possible treatment.

dreamdaisy

I posit that you did not have a diagnosis as your RA was not troublesome enough to you to merit your pursuing one - your various physical exploits demonstrate that. I began the DMARDs five years too late (it took the medicos that length of time to accept that a knee that was over 24" in circumference a problem) the same with the anti TNFs but at least my PsA is currently being held in check by the meth/humira combo. I know that my hospital now has a policy of introducing TNFs after six months if there's been no progress with meth or lef etc, and people are benefitting as a result. DD missses yet another boat. :roll:

People who are experiencing success with the meds probably don't have much to do with AC, let alone post on here. This is the forum for those who struggle with the meds because, as we all know, they don't work for everyone. This is the forum for those who have failed with the treatments, or who are getting on as well as they can with the meds. This is the forum for those with doubts and qualms about starting a new course of meds and it's the place where we try to answer the unanswerable. DD

earthspirit

i like your posts DD - they are interesting & informative and provoke further thought. (leading to more points for you to then comment on )


the psa that you have sounds really awful for anyone who has it and its good that you have this under control. i too would have taken whatever meds i could get to treat this.

i didnt have a dx but i did have major issues with my neck (made worse by serious accident) and i did take high strength ibuprofen for many years, as well as being prescribed other meds to try to hep with pain but not to treat RA. the osteophytes have been present since 1998 at least. these caused almost intolerable pain and imbalance and i ws reported to police numerous times for going into car drunk due to huge lurching sways.

the focus of my own treatment has been on neck pain and so this masked the other things like the huge knees and sore wrists and swollen knees. ive had periods of what were obvious flares and ive had long periods where the only pain was my neck - these periods allowed me to remain otherwise superfit and active as i could be.

my issue with meds to treat disease now is simple - they are to help prevent joint damage primarily and even though untreated i dont have a great deal of joint damage.

this is why i have challenged the benefit of the RA meds and why the rheumatologist accepted me challenging his opinion - he has agreed with me. its a difficult situation to be in DD! in this mega 18month flare, there have been points when i was unable to use either arms legs hands or feet and that prostration and immobility were quite frightening. its been the toughest challenge i have ever had in my life.

if i didnt now know i had RA i would be in blissful ignorance about something this bad happening again. obvously i do know and i am trying to work out what the best course of treatment could be.

for all the people who are not on the forum, they probably take meds or can manage without them, but technically are the ones who were like me without treatment. there are lots of apparently joint damaged people on here who are in 40sor over - perhaps the ones not on here dont have this joint damage??

i, like you, missed the boat quite a lot over the decades, but am i in a better situation for having done so? being totally honest, i suppose i am here so you can catch me again if i fall or maybe i should be saying when i fall...but that is a totally negative outlook.

dreamdaisy

Cor, thank you for the compliment about my posts! That's cheered my day no end. One of the biggest problems we face is that every one is different in how the arthritis presents and its effect on the body. Your RA is different to Wonky's and Tilly's etc, my PsA is different to Dorcas' and Scorpio's etc. Every version of arthritis is horrid, and even if one is not too badly touched by it (yes, I mean you williamlargs! ) it's still a huge injustice. OK, my PsA is controlled at the moment but that is cold comfort. It has come far too late for me to 'recover' my life, the damage is done and cannot be undone. Even new knees won't make that much different to the other bits that hurt and I need those now, not in two years time. Hey-ho. I bet if I won the lottery my orthopaedic surgeon wouldn't hesitate to operate.

I think there is a greater awareness amongst GPs about arthritis, and I would support that statement by the increasing number of people who join us having been diagnosed within even a year of the first symptoms appearing - or even without diagnosis. The dread word is mentioned in the surgery and then they are on the net and finding us. There is no alternative to the meds - well there is but as you are finding out it's not all that it's cracked up to be. Ignoring something does not make it go away be it arthritis, debts or an irritating child. It also depends on what you class as 'success' with the meds. For me it means five or six days of being able to walk with the crutches rather than the rollator. Does the pain reduce? Of course not, bone-on-bone in joints is going to hurt no matter what one flings at it. You just have to get on with it, is all. It is what it is and it will do what it will do, meds or no meds. DD

earthspirit

regardint this site - i was referred her by doctor rheumatologist rheumy nurse and physio dept so in aberdeen at least they are trying to help people get the support and information they might need to help themselves.

i did see some posters on walls somewhere but as it was "just" arthritis i dont think i paid much attention to them as i had been quite clearly told i had something different to "just" arthritis.

the government NHS need to put more focus on this awful disease affecting so many people worldwide and also including poor little furry animals too.

dreamdaisy

Right, I tried to post this reply earlier but the interweb failed. I'll try again.

How does one start to prioritise illness? I don't think one can. Cancer has an aura that other diseases lack but that doesn't mean that they are not worthy of consideration. There are many difficult (but not necessarily) life-threatening illnesses that affect one's life, and of course it is easy to champion a cause that is close to one's heart, but surely doctors have to specialise. I would not expect a heart specialist to know about arthritis or a rheumatologist to be au fait with the ins-and-outs of diabetes. I prefer my consultant to know a lot about a little rather than a little about a lot. DD

earthspirit

one of my doctors whoed me her "pile" of reading to do updating her on new medical research, new drugs etc etc - in 6 days she had a pile about 30" high and that she said, was much less than normal.

what i have found very often, is that consultants can be expert in their own field but have very very limited knowledge in how other body systems work. this has sometimes meant that they cant connect one group of symptoms classic in your illness to other things that might also be wrong in your body. i suppose this is where we have to be proactive in finding out all we can about our diseases and illness in order to be able to ask the right questions which in turn leads to better treatment for our whole bodies rather than just the bit that is presenting as the problem at that moment

doctors are scared sometimes to say too much in case we sue them

lizzieuk1

earthspirit wrote:

what i took from the report is that a lot of the meds really dont work for that many people and even when they do reduce or slow down the disease, they can cause untold damage and do not help much with the pain factor.

ive had RA a very long time and really my bones and joints are showing minimal damage, without any treatment as i did not have a dx. this came after an appropriate blood test which had never been done.

have spoken to numerous american myself with RA and after years of all the meds, have resorted to other methods to deal with the disease and pain.

ive been told by rheumatologist that i am probably correct in my assumption that dmards wont work very well with me as the disease is way past its early stages. due to medical ethics, i cant be treatet with the tnfs until at least 2 dmards have failed. after 3 weeks on suflasalzine my liver counts had risen quite steeply (as well as some other nasty side effects) i am not prepared to risk further damage to my body which is already seriously attacked by this disease and rheumy admitted that i am correct in my thinking with that too. he aint got a choice though as its not him who makes these ethical decisions.

i just feel that many of us are not getting the best possible treatment.

its important to balance this by remembering there are many people who are helped by the dmards etc and doctors are not miracle workers they can only work within their best ability, i really don;t think its all about joint damage its also about helping people regain their independence and live as normal life as possible, i am lucky to have had a much improved life since starting mtx 8 years ago and although am now flaring post baby i will certainly give the other meds a go yes i feel rubbish at times due tot the drugs but really theres no contest for me, without them i can;t do anything i did before the ra and i still have so much living to do am damned if i will give up!

stickywicket

earthspirit wrote:

ive been told by rheumatologist that i am probably correct in my assumption that dmards wont work very well with me as the disease is way past its early stages.

I know I'm only one person but DMARDS work fine for me and I'm 51 years in. I'd much rather go with stuff that's proved its use over a long time than leaping straight into the newer meds. If the time comes when I need them then I'll take them and be grateful but, to give them to me now would be the classic sledgehammer/nut scenario and not good use of NHS resources and funds.

salamander

I think I'm getting the best possible treatment. My consultant is very experienced and has checked me for heart problems and other things too and I have the most fantastic rheumy nurse. They got me on anti tnfs as soon as they could. I don't think I could ask for better - apart from advances in medicine or a miracle

dreamdaisy

Wouldn't it be helpful if those who are helped by DMARDs bothered to take the time and trouble to post (more than once in a blue moon) that they are doing OK? That could help others - and before people grouse I am aware that's an old-fashoned notion. (Sticky, you are so NOT included in this gripe.)

I wonder if there are more of us who, on being helped byt the docs to the limit of their abilities, still find that life is difficult. No matter eh? At least the medicos are trying their best. :roll: DD

earthspirit

i think you got something there DD. i guess what i am looking for is the ones who are being helped big time by the meds. i accept that there is always likely to be pain, but reduced inflamation would allow this to happen.

ive been on so many forums but i am also looking for real life people who lead more or less normal lives while taking meds. i find stories or blogs about some of these people but not before they have some joint replacement which has changed their life or better on the meds but now they got diabetes or other organ issues.

there is some guy who climbed everest, an american and i thought hey this is cool he is doing really well on meds. however it turns out that when he is flaring and taking meds, he spends a lot of the time sick and in bed.

i want to find the people who still swim who have no mobility problems and who had more than a couple of sore fingers to treat. i want to find people who had flaring in many joints, the ones who lost heaps of weight and got messed up blood and who could barely walk. i want THEM to post on forums and tell me how much the meds revolutionised their lives.

i can find lots who do not post and who exist a bit better on the meds, but i cant seem to find any successful women who take the meds and still manage to work full time 10 years after starting treatment. we know we wont find "cured" people but where are the ones all doing so well??

the consultants and scientists are doing all they can....i think?

tillytop

Fippin eck Earthspirit! You don't want much do you ? If I could climb Everest between flares I would think I was doing pretty well! (Mind you, I told Mr TT yesterday that I was going to erect a flag every time I got to the top of the stairs cos that's my equivalent of climbing Everest at the moment :roll:)

As for the effectiveness of DMARDS - I have taken many - if not most - of the available DMARDS over the past 16 or so years and all of them have helped me to some extent and have kept my joint damage to a minimum. And I was able to carry on working in a stressful, full-time job for many years. No, it wasn't always easy but without the DMARDS it would have been impossible, so for that I am hugely thankful. And with the advent of the biologics I had 5 virtually RA free years thanks to Infliximab and a couple more hugely improved years on Humira. OK, so things aren't so good for me now but I know things would be a whole lot worse now if it weren't for the DMARDS. So that's my attempt at positivity - and in my current head-state I think that's pretty damned impressive !

Re the original subject of your thread - have a look at the NICE guidelines for management of RA (which you can find by typing "NICE rheumatoid arthritis" into Google). As you will see, the recommendations for management of RA in the UK do include many (most) of the issues addressed in the RA Warrior article. So the intentions are there but, for whatever reason, they do not seem to have been widely implemented.

Tillyx

stickywicket

Oh Tilly, bless you - for several belly laughs, the best medecine going in my book (though I'll keep taking the meth ) It's even more impressive given your recent, and current, state of health. I shall forthwith buy a set of flags to help out. Well done you for attaining the peak of TT mountain on so many occasions!

Earthspirit, I'm usually regarded as an optimist but I'd guess that people who lead near normal lives, with no prostheses, after many years of RA are not exactly in plentiful supply. It is possible that, with more aggressive initial treatment, there would be more of them but the more aggressive treatments have their own drawbacks.

My advice would be to live in, and enjoy, the present but with a view to how that will affect the future. If we expect too much (from docs, meds, whatever) we'll always be doomed to a life of disappointment and rancour.

dreamdaisy

So what if some bloke can climb a mountain? Bully for him. My 'Everests' are putting on my knickers on, cutting my toenails, peeling veg, lifting saucepans, trying to get some decent sleep etc. Does the nirvana of being seriously ill but leading a normal life on minimum meds exist.? Is the Holy Grail of being healthy whilst ill just a pipe-dream? I reckon so. As I said somewhere else, I have a life which is hampered by arthritis, I am not an arthritic who is hampered by life. DD

CALETA

Earthspirit, with the greatest respect to you, I, as someone on the cusp of starting on the medications being discussed, find your posts, and opinions regarding consultants, somewhat overly pessimistic.

I do not post very often, but I find looking into the Forum invaluable for realistic information, and, more importantly, positive support. Long may that continue.

theresa4

Dd and earthspirit in response to your request from more dmard peeps
Mtx for me is a lifeline. Don't get me wrong I never seem to stop flaring for more than a day or two but after being ill and off Mtx for 4 weeks I couldn't walk, dress or feed my self and other elements of self care :oops: so it's. Not a super response but it's the difference to a little life and "independence" or none at all.
As for anti TNf I've had 5 biologics now 4 did nothing, the last seemed to have worked but I reacted to it with an itchy all over body skin rash even with half dose and steroids and anti histamine so looks like that's over for me.
I'm just starting with joint damage 6 1/2 years in I was put on Mtx within 6 months even though I'm sero negative as my consultant felt I had classic symptoms and wanted early treatment to prevent my condition worsening.

So the drugs aren't stopping it but probably slowed it down a bit. Without them I might as well not be here and with theme not really much better.
Sorry so negative just having bad few months and increasing pain and feeling very low.
Everyone is different and will or won't respond to the drugs I never thought I would find an anti TNf that worked but for 3 days other than itching and looking like I had measles I felt WELL, that may sound weird but I wasn't tired, didn't feel yuck, little pain, I felt alert things I haven't felt in years. So you can't write them off without giving them a go. Shame my body didn't like the drug though I couldn't continue as the itchyness was too bad I wouldn't have had any skin left and even a half dose produced a worse rash.

As for American treatment take a look on some American RA forums. People who can't afford the treatments but had a good response to their 3 month free trial are now having to go without as they don't have insurance. Give me the NHS any day.
Theresa

dreamdaisy

Theresa4, the majority of us auto-immune bods on here are on DMARDs, but what is lacking is posts from those who are doing well with them; because the meds are doing what they should be they are out there, getting on with life, living it to the full and have little to gripe about. It's not surprising they're not posting on here, they don't need to and to keep reading the moans and gloom of those who are not doing well is not what you need if your life is OK. As a result the forum does give a skewed view of the meds and what they can achieve and I for one find that a shame, but I can understand why it is as it is. If every other post is about the evils of meth or the others drugs it must be difficult to bounce in and say 'For me it's a wonder drug that's changed my life. I'm off now to run a Marathon.'

I also think that some may have too high an expectation of what the meds will achieve. They do not provide an answer or a solution to the problem, they only ease the worst of the symptoms and try to slow the progress of the disease. They don't make it go away. Nothing does. DD

earthspirit

thank you all for your very insightful replies.

im coming at this from a person who did not have a diagnosis for decades but did have the disease going rampant through my joints at times. this was treated with pain meds (too much ibuprofen by far which dries up joints used long term), my own homeopathic intervention to reduce swelling and pain, along with a lifelong habit of yoga & swimming along with a very healthy diet.

for well over 10 years i went day after day month after month with what was obviously a major flare in my neck but showing only very minimal wear and tear of cervical vertibrae. at one point i was in so much agony and masses of other symptoms that i was pleading with doctors to do any op regardless of the consequences. i was warned off this numerous times due to the risk of total paralysis and eventually realised i would just have to live with "my neck".

the major flare which i now have has subsided somewhat in my hands and now i really can wipe my own **** but unlike DD i am completely unable to to cut my toe nails

i do have trouble in one knee but this was a result of actually injuring it and then walking up a hill on hogmany to watch fireworks. i spent the next month being given totally contradictory information & advice on how to deal with this. my ankles hips feet and both knees now involved in mini flares as i cant walk at all properly. i can virtually not walk any steps at all. HOWEVER.............ive gone from being told i needed a knee op as a matter of urgency to not being in any qualifying need for op and this is due to intense physio. so the walking issue will probably slowly resolve.

so.....the point is, what treatment can i have when the rheumatologist himself (head of uk numerous research units) says that dmards are most likely going to have no effect on my condition and progress of RA.

i feel that i need more physio help, i feel that the hydrotherapy which was very effective should be more freely available & i need more therapuetic massage. i have tried to get some joint massage and manipulation but in the private sector i have struggled to find anyone who wants to take this on for fear of causing further damage. i do get dla and would happily use this and my own money to pay for treatment or relief. im saving nhs a fortune in not taking any meds but there is no option available to really help.

my feeling right now is that i have just to muddle away as best as i can, but that is what many of you meds are doing too. many are far far worse than me with joint or other bone damage so i should be lucky for this situation. i also suppose that lots who dont post on any forums are also in the same situation. the question is: are those on meds muddling away doing better that those who are not on meds??? i was quite speicifically told that there is no follow up at all on people not on meds. those must be the people like me, who have not been so troubled by multiple joint flares and real illness.

i have to say quite categorically that during the major flare that started last feb i did not feel ill at all and suffered no tiredness or any other symptom. this only came when my movement was totally restricted after damaging my knee. i started on sulfasalazine and felt more ill and closer to deaths door than at any time in my life. maybe the people who try every med going are the people who feel the most ill as oppsed to those who only suffer the pain?

i am not too familiar with the new PIP payments gov are going to introduce but surely things like this will give us greater choices in what forms of treatment we may take to make us feel better?

anyway.....im fed up so off to support scotland in the tennis

dreamdaisy

We do have choices and a fair number of them to boot. The meds don't provide the whole answer but they are an important tool in fighting the depredations the disease can incur. Diet may play a part, exercise too, but generally the more pernicious the disease the stronger the meds have to be. As for the toenails, well, the window of opportunity to do them doesn't open very often - I have to seize the opportunity when it does! DD

salamander

have they ruled out biologics then earth spirit?