I have had RA for 5 years & despite prognosis I'm doing

Posted , 19 users are following.

I have had RA for 5 years & despite prognosis I'm doing very well.

The information on this site, in my opinion, is very good.

I would like to add that the outlook for those newly diagnosed now is probably better than it ever has been. This is because of the rapid advancement of new drugs. But don't hang around for a diagnosis, move quickly! Form a good working relationship with your doctor but if you really can't - find another doctor equally quickly! I recommend the National Rheumatoid Arthritis Society which offers excellent support for people with RA.

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  • Posted

    I am posting this comment on behalf of my 75 year old wife, who has suffered with R A since she was 40, & was in a terrible state for many years. It used to take her an hour to get out of bed & get dressed, but she forced herself to carry on working. I insisted she went to see her doctor, which she did under duress, & he prescribed steroids, & for the first time in years she was free of pain. BUT within a week, she had to have her wedding ring cut off due to putting on pounds in weight, so she stopped taking the steroids, & continued with paracetimol to releive the pain.

    In 1986 a friend suggested she went to see an Alergist which she reccomended, & we made an appointment to see her. She tested her for quite a lot of things, & found she was most alergiC to WHEAT, but advised her to keep off alchohal & red meat, which she did of course.

    Within ten days of going on the diet the allergist had recommended, my wife was walking up & down stairs like a normal person. To me this was either a miracle or an answer to a lot of prayers, but beleive me it is true. Before she went on the diet, we always had an aperitif prepairing our evening meal, wine, & a tot of brandy afterwards.......all the wrong things!. In 1994 my wife had her two elbows replaced, as they had seized up, & she was having great difficulty doing lots of things including feeding herself. She now has about 20% movement in them, & doesn't take any medication at all, & only has pain if she deviates from the diet. SO ARE WE WHAT WE EAT??.:D

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  • Posted

    This diagnosis has been terrifying for me. I have not idea what the prognosis could be for me. I have had the condition for several years. But reading all that I have the only time this disease is acknowledged was in an autopsy. It is not very well known and not may Rheumatologists seem to be able to help in treatment. I am using a Pulmonologist and I think he is treating me for the experience. I wish I could find someone going through this experience since I am scared that it is slowly killing me and no one seems to be able to help.:ill::ill:

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  • Posted

    I am at present investigating how diet can help my 89 year old Mum. She had a successful knee replacement some 9 years ago, but has just developed a painful condition in that ankle & leg. The medication, anti-inflammatory drugs, prescribed, have side effects and cause stomach problems. I have the same problem with these drugs prescribed to me for Gout, so I tried control through food. I have proven that certain foods can trigger a gout attack. eg. Bitter beer, red wine, offal, red meats, pulses, asparagus, spinach, and the nightshades. I don't have to go without these foods completely, but be very careful and cut them out for a while when I get tingling or bruised feeling warnings. However Cider and apple products are excellent and help me, as I believe do cherries.

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  • Posted

    I write this as an bystander to the condition of Arthritis (Rheumatiod): My wife is 32 years old and has suffered from the aggressive form of sero positive Rheumatoid Arthritis for the past twelve years. She has undergone two wrist replacements and reconstructive surgery to the left foot and is soon to have the same operation on her right foot.

    Throughout this time we/she have tried every conventional and unconventional treatment, change in diet and lifestyle. These however have provided no enhancment to the way she lives or the pain she suffers.

    The continued hope and belief I hold is through strong support on both a personal and medical level, in particular the new developements, practices and treatments, of which her medical team are at the foremost.

    I am acutely aware of the increase in Rheumatiod Arthritis amongst the younger generations and the impact it has on daily life. However this condition is still associated with those of later years and I feel there is little to explain the riggers of day to day life whilst coping with RA.

    There are many helplines which are readily available and are great but a modern and inovertive approach to these are needed.

    To this end (a life celebrating one), we are lucky enough to have a daughter who is about to celebrate her 4th birthday growing up with a 100% mum.

    My wife and I always have and will continue to do so, live our lives to the full.....parking spaces permitting

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  • Posted

    I was finally diagnosed with RA in 1967 (I was 32) after several years of joint troubles which started after the birth of my daughter in 1960.

    Over the years I have had several operations - synovectomy on the right knee, removal of the head of the radius on the right elbow and joint replacements on my left hand. In the past I have tried just about every kind of diet and "snake oil" remedy, but I have found the best approach for this disease, as with most complaints, is to look after your general health - that is, maintain a healthy balanced diet. Not too much animal protein (but favouring fish) and lots of fruit and vegetables. Also moderate excercise, especially stretching.

    I have been lucky in that my response to medication as been very good, and medical science seems to be one step ahead of me and comes up trumps each time.

    I found the article informative and was interested to read of the possible effects on the lungs of long term RA. My grandmother also had this disease, but the poor woman had none of the help available today and died in great pain. Her lungs were badly affected - this was in the 1930's.

    It is always helpful to share experiences with other RA sufferers, but, I must say, most of my socialising is with non-sufferers and I never talk about RA with them; simply because the subject never comes up. That is how I like it; and so must they!

    Life is good. I have an excellent helpmate in my husband. We make no forward plans; we just savour every day.

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  • Posted

    I read this comment with interest, as I, too, was young when this disease was diagnosed in 1967 (although I had had symptoms for several years before). At the time I was told that the disease was a "young person's" disease, striking in the prime of life. I feel that the reason why the complaint is associated with older people is the name "arthritis". Few people make distinctions. My rheumatologist always refers to it as "Rheumatoid Disease" - omitting the "Arthritis". Of course, it can appear at any age, like most diseases, but I was told that 15 to 30 are the crucial years. Perhaps it is time for a new definition and title. I think I'm right in thinking that the disease was given its present title before the characteristics which make it different from, for example, Osteo-arthritis were fully understood.

    Whether the incidents of RA are on the increase or not I can't say. At one time I had understood that the advent of the contraceptive pill in the 1960's had had a beneficial effect; this effect was not clearly explained, so perhaps that idea has sunk without trace.

    But it can't be emphasised enough that quick referral to a good rheumatology department is essential. Most GPs are aware of this now.

    I wish this young mother all the luck in the world and great joy in her young child; it is not easy as I know from personal experience.

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  • Posted

    My Wife recently passed away.She suffered with RA for many years and attended our local hospital's RA clinic on a regular basis.She was diagnosed with lung cancer in 09/05 (non smoker) although one specialist said that she had doubts butwould administer Chemo. immediately.This led to a very rapid decline in my Wife's condition and she survived just 5 months.I asked the RA consultant if there was a connection between RA and lung cancer and he said ' quite definitely no'I mentioned that USA medical websites said otherwise and he dismissed that.your website says that there is a connection. I also asked why my wife did not have chest xrays and blood tests and was told they were not considered necessary.I am coming to the conclusion that she did not have cancer and died because of the effects of the Chemo which caused massive breathing problems (PEetc.)

    Have you any comment?

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  • Posted

    Please help, when i drive for about 45 i get severe pain in my left knee, i drive an automatic car so it not the clutch. it is always on the left side of my knee.When it gets sore the pain seems to travel into my shin bone and my thigh goes a little numb. The pain gets that bad i cant touch it.

    Anyone have any ideas please

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  • Posted

    I RECEIVED A BLOOD THINNER. FROM MY DOC BECAUSE I HAD A SEVERE ANGINA ATTACK, I BECAME SEVERLY ALERGIC TOO THIS MEDICINE I HAD MASSIVE ATTACK OF THE HIVES THEY COVERED MY WHOLE BODY, I ALSO FELT VERY ILL AND HAD DIFFICULTY WALKING AND MOVING AROUND . MY HANDS BECAME VERY RED AND PAINFUL ALSO MY SHOULDERS AND WHRISTS . MY HIPS AND 1 KNEE , I ALSO HAD A BAD ASTMA ATTACK , 2 WEEKS LATER I WAS ADDMITTED TOO HOSPITAL BECAUSE I HAD BECOME VERY ILL HOT AND MY BODY WAS VERY SORE ALL MY JOINTS HAD BECOME INFLAMED , MOSTLY MY HAND-- SHOULDERS --AND ELBOWS --WHRISTS , I HAD TOO BE PUT ON ANTI- INFLAMITRYS . AND STERIODS, AND STRONG PAINKILLERS, WEEKS LATER I WAS TOLD I HAD REUMATOYD ARTHIRITIS I HAVE ALSO BEEN LEFT WITH CARPAL TUNNEL SNYDROME IN MY LEFT HAND AND HAVE DIFFICULTY USING THIS HAND, I AM STILL VERY STIFF IN THE HANDS AND SHOULDERS AND AWATEING TOO SEE THE HOSPITAL DOCS ABOUT THIS .REGARDS MARY

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  • Posted

    I was diagnosed with RA in December 2006 and started treatment immediately with Methotrexate. After 10 weeks of treatment I feel a slight improvement but only in the symptom of stiffness in the mornings. I must say that it is not really the pain with RA that I cannot cope with because my GP gives me strong painkillers. But, I am finding it increasingly difficult to cope with the fatigue and tiredness that comes with RA. It stops me doing so many things that I used to enjoy that I sometimes get really down about it. I am wondering if, when I am further on with my Methotrexate treatment, that these symptoms will improve. Has anyone out there suffered this problem? Surely I am not on my own!

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  • Posted

    I very much sympathise with S Guest in finding fatigue a prominent and disabling symptom of RA. In my case it only reaches disabling levels during a flare-up. While methotrexate at 15-20mg/week controls the inflammation reasonably, it appears to have no effect on the systemic effects of RA, ie fatigue, malaise, depression, sleep disturbance even in the absence of pain, and in my case interstitial lung disease. What I have found though is that on two occasions since starting methotrexate treatment a year ago, I have contracted an infection that triggered a flare-up but did not produce the typical symptoms you would expect ie fever and severe malaise. Nonetheless, self medication with amoxicillin at 750mg/day sorted both infection and fatigue.

    This can't be a panacea, though, and I'd be grateful for other less radical solutions to the immense lassitude that comes with RA!

  • Posted

    Hi

    I get exactly the same pain sometimes and it has nothing to do with my knees.

    I have arthritic hips and it is called pain transference.

    Get your hip and knee checked out, it could be the joints or the cartlidge.

    Good luck

  • Posted

    I was diagnosed with arthritus at the age of 11 in my left knee. I am now 24 years old. When I was first diagnosed the specialists at the hospital called it \"juvinile arthritus\" and she suggested that as I get older, I could grow out of it. As I have got older, the condition has now been diagnosed as \"rheumatiod arthritus\", and is getting worse each year. It is so frustrated as In have 2 young children, one aged 5 and the other is 2. I also attend university and simple things like getting out of bed on a morning seems like a task and a half. I have had many treatments from the speialist at the hospital, ranging from being in a wheel chair for 6 months when I was first diagnosed, tablets (anti-inflamitory and disease fighters), fluid being drained from the knee joint, steroid injections, bandages and alternative medicines. Nothing seems to be working. My knee keeps flaring-up and is extremely disfigured. I can't help thinking \"WHAT AM I GOING TO BE LIKE IN 10 or 20 YEARS?\" My life is so badly effected at the age of 24.

    Is there anyone else out there that has experienced similar things at such a young age? Or does anyone know of anything I can try that may help me?

  • Posted

    I was diagnosed with R.A in 1989, at first thought that I would be in a wheelchair by the time I was 50, but here I am still fighting, although I now find that I am getting increasingly depressed and so tired I just want to go to sleep and never wake up. I suppose to anyone reading this I seem quite depressed, but I have gone through a lot over the past 18 years including three operations to my feet, and a carpel tunnel opration. I have tried almost all of the medicines available and have recently started the new anti-tnf treatment. I had hoped that it would be the miracle treatment I had heard of, but it does not seem to be working for me and am hoping that there will be something else available. Have just spent 4 days in hospital for pain relief and bedrest, brought on mainly because after suffering a DVT in February I have been unable to take anti-inflammatories as thay are not compatible with warfarin, and I had been taken off my leflunomide in preparation for going onto anti-tnf. I have continued to work throughout these years with RA but have had to give up a full time management role and reduce my working hours to part time. I now feel that if this treatment does not work I may have to give up that job too, and the thought of being house bound and becoming totally dependant on my very caring husband (he has been an absolute angel) is just too much to contemplate. I have only recently aquired this computer and am thrilled that there are people out there who I am able to share my feelings with.
  • Posted

    This may seem a bizarre experience to post here, but I will try to explain.

    Twenty years ago, I was diagnosed with RA, which has been, thankfully, reasonably easy to manage and symptoms do not seem to have worsened. I always have background pain, mainly in the hands and feet, but relatively few very bad flare ups. When things do flare up, it can be managed by diclofenac and rest and warmth and usually improves after about 7-10 days.

    I avoid raising this issue with the doctor about this as I dread embarking on strong medication, with associated side effects, whilst I can still cope. I am very sensitive to medication. As I can cope by myself, I am assuming that my condition is mild, but I do wonder whether I should be getting an assessment and whether delaying this will cause problems in the future or damage to the joints.

    I find it difficult to know when RA is bad enough to see the doctor about....

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