Descenting voices?

jasminej

Are there any descenting voices out there? I have had my condition for 20 years. It has been called ME, fibromyalgia, sjogren's syndrome and most recently, 6 years ago, RA. Before those 6 years I was left to cope alone with the pain and deformity and discovered accupuncture, which worked to some extent, for me and enabled me to be freer of pain. When i was diagnosed 6 years ago my consultant insisted that anti inflammatories were the only way. I was on Vioxx and hydroxychloroquine for 2 years and then vioxx was removed from the market. I tried other NASIDs and developed stomach ulcers. I was encouraged to continue regardless. I didn't. Now I am told that the guidelines have changed and the new guidelines discourage the use of anti inflammatories because they damage the stomach. (?) Now consultants are encouraged to attack early onset RA agressively with DMARDS. But there seems to be no accounting for individuals circumstances or the nature of their particular RA symptoms or the history of their illness or their wishes or the history of their reactions to drug therapies or other health conditions that they might have. Its a one answer suits all solution. This troubles me. And it troubles me that guidleines for treatment are so absolute and yet can change within a few years. Does anyone else feel similarly? Has anyone travelled abroad in search of safer/better treatment? Has anyone tried minocycline, an anti biotic? Is anyone else not enthralled by the current thinking on how to treat RA?

elnafinn

Hi Jasmine

I do not have RA but I feel at the moment we are all guinea pigs and yes, guidelines will change as more is learnt about the drugs and how the human body reacts to them. I feel things have improved to how they used to be years ago. RA can be kept under control. It is often difficult to be diagnosed with what type of arthritis one has and this all takes time. Now that we have the internet we can find out information for ourselves easily and go armed to our gps with much more knowledge, often more than they know as they are not specialised in every field of medicine and I would not expect them to be. This forum is a mine of information and has helped many to get back on their feet again and obtain information from us based on our own experiences. They take this info to their gps, rheumies, consultants. People learn from others on here what questions to ask the medics. I am interested in all forms of arthritis and from being on here for a couple of years I have learnt, looked up and passed on so much info when people log on here. Some people, for whatever reason, do not wish to find out the information themselves but are grateful to receive it.

I feel there is accounting for individual circumstances but it is all down to who you see - luck of the draw really. We often go for second opinions if we feel we are not getting the attention we require.

We are offered pain clinics, acupuncture, physio, the gym, hydropools, alternative medicine, it often depends where you live, who you see and where these facillities are.

It is not perfect by any means and you often have to fight for the right attention but I still feel it is much better than it used to be for RA sufferers.

I apologise if I have completely misunderstood your questions and am barking up the wrong tree :oops:

I wish you the very best

Elna

daisychain

jasminej wrote:

Are there any descenting voices out there? I have had my condition for 20 years. It has been called ME, fibromyalgia, sjogren's syndrome and most recently, 6 years ago, RA. Before those 6 years I was left to cope alone with the pain and deformity and discovered accupuncture, which worked to some extent, for me and enabled me to be freer of pain. When i was diagnosed 6 years ago my consultant insisted that anti inflammatories were the only way. I was on Vioxx and hydroxychloroquine for 2 years and then vioxx was removed from the market. I tried other NASIDs and developed stomach ulcers. I was encouraged to continue regardless. I didn't. Now I am told that the guidelines have changed and the new guidelines discourage the use of anti inflammatories because they damage the stomach. (?) Now consultants are encouraged to attack early onset RA agressively with DMARDS. But there seems to be no accounting for individuals circumstances or the nature of their particular RA symptoms or the history of their illness or their wishes or the history of their reactions to drug therapies or other health conditions that they might have. Its a one answer suits all solution. This troubles me. And it troubles me that guidleines for treatment are so absolute and yet can change within a few years. Does anyone else feel similarly? Has anyone travelled abroad in search of safer/better treatment? Has anyone tried minocycline, an anti biotic? Is anyone else not enthralled by the current thinking on how to treat RA?

woodbon

Hi, I've had problems with Nsaids, and as soon as the problem developed I recieved life saving care and advice about future drug treatment.

When a new drug comes out it takes on avarage 10 years from test tube to patient. By then the doctor will know some of the side effects both good and bad, but some may only show up after years of use ie penicillen resistance. The only way anyone is ever going to find out what long term effects a drug has on humans is be using it. Computer models will show some side effects, animal trails are very valuable, although politically now, and financially they are not used so much. No one pushes a tablet down your throat, it is your choice to take it or not.

I don't meat to be lying down the law or picking arguements, its just that I've worked with scientists and my husband is a biochemist, I've seen the work that goes into producing the best quality medicines. Well, I'll put my soap box away for today!!! Love Sue PS One thing we often forget, doctors are not true scientists, they work with people and give them drugs provided by science. A busy doctor needs help to keep up to date with the output of new drugs, thats why they need guidlines. Some I agree are too ridgid and if we feel that we should fight them.

livinglegend

jasminej wrote:

But there seems to be no accounting for individuals circumstances or the nature of their particular RA symptoms or the history of their illness or their wishes or the history of their reactions to drug therapies or other health conditions that they might have. Its a one answer suits all solution.

As my Rheumy says, "If we knew what caused RA, we could find a cure for it". Until then, they have to try a range of proven treatments which have slowed the disease, even though they may not work for you. If you try a particular drug or combination that doesn't work, then request an appointment to review your treatment. But, give the treatment a reasonable time to start working.

All consultants should have access to your files and therefore a history of your illness and your stated wishes regarding treatment. When you discuss your treatment with your Rheumatologist, then if there is any reason that you don't wish to take a particular medicine then no-one can make you take it. Except in exceptional circumstances, it is your choice!

Many people also refuse to try new, well tested, drugs or agree to, then don't take them. This creates problems for everyone. Drugs that could save the suffering of many people are blocked, because some say a particular treatment doesn't work or claim side effects, yet haven't taken the prescribed medicine.

May I suggest that you go and see your Rheumatologist and sit down and discuss your thoughts on the treatment or ask to see a specialist nurse who may have more time to listen and offer advice. If you can, take along a printout of your full posting above, as it helps to remember.

There is also the free confidential helpline given at the top of this page: 0808 800 4050. I would suggest that you give them a ring first and have a chat to someone who understands how you feel.

Joseph 8)