I see people on here mentioning remission, this confuses me, i thought there was no cure for RA? As for myself disgnosed Sero positive 3 years ago, been on steroids,methotrexate,Sulfasazaline for 3 years didnt work!!! Now on biological therapy for 4 months not working just had shoulder surgery and need other one done, also showing joint degeneration in hips and knees, im really happy for those of you who have it under control but i doubt such a cruel disease can every be controlled forever.

15 Replies

  • Do not be mislead by remission. Unlike cancer patients, for us it simply means inflammation is temporarily , under control. The disease is always present and drugs continuous. For the lucky few who respond well to drugs , the pain is far less invasive. There is no cure disputed claims that diets can cure all.

    Like you I have not responded well to any drugs. When I stopped the drugs my body triggered a reduction in CRP but only after sixteen weeks of vey high inflammation. Currently on Rituxan and MTX injections. It is Heidi us for many or lest be real most of us. Hang tuff is a moto I like. Not that I have given any options lol

  • Many (most?) of us who are in remission are in medically controlled remissison. In other words it is the drugs that are keeping us there. There are a couple of people who post from time to time who have been diagnosed for over 20 years.

    A few people who have shared their stories on here have been able to taper off the drugs completely and stay in remission for a while - but I think they are the lucky few. It would be good to get some stories from people who have been off the drugs for more than 3 or 4 years and had a confirmed diagnosis of sero-positive RA or PSA - but I guess they have little interest in this site any more so don't post.....

  • I'm in remission it means that because of the medication LEF that my DAS is just 2. Stop taking it as I had to a while ago it was 75 in weeks.

  • You are right to say there is no cure for RA, ....but i'm sort of in sporadic remission on RTX. For about 4 months after the infusions I'm mostly pain free, with little stiffness...& my blood results show lower inflammation.

    But with two months to go to next infusion, I'm stiffening up, my hands & wrists are painful & go into it's back to the Melamine crockery as I drop everything.

    But after 18 years of almost constant pain I'm grateful for the pain free periods.....& just pray the RTX won't stop working!

  • That's me too AC! I am good for 6 months then the last one before infusion is lightning flashes in the back of the hands which lets me know before any raised ESR.

  • Hello, I am in what is called remission for my RA. I have been on the pharmaceutical merry-go-round for many years before finding a drug that works for me, currently Enbrel with strict diet has put me in remission, the drug alone did not do this. Its the combination of medication and diet, mainly avoiding any foods that cause inflammation, and for me its most foods. I also have Inflammatory Bowel Disease 'Crohns' which is currently not controlled, but I am able to really help my symptoms through diet. I am waiting for an MRI in November to determine if I will have surgery to remove a portion of my colon where there is a stricture or I will be put on a maintenance Remicade. Enbrel only works for RA. Remicade works for both RA & Crohns.

    This is where my anxiety kicks in....Enbrel works good for me, it was a very long process of many different drugs, loosing almost all my hair, to finally find a drug that guarantee Remicade will even work for my RA.

    I know everyone has their own opinion and experience, but I wouldn't discount diet, unless you tried it. No one knows what causes RA, its believed its a combination genetic and environmental factors or triggers, but really they dont know, thats why there is no cure. I personally do not believe I can be cured by diet alone, but I can not discount that diet definitely helps control my flares and symptoms. I think diet does play a big part, at least this is my personal experience, but the medications also play a big part.

    I am 100% sure that if I stopped taking Enbrel for RA, I would flare like Daenerys Stromborns fire breathing dragon...

  • May I ask what foods you avoid for inflammation please Hobbits

  • Everyone is different so doing an elimination diet is best, so that you learn your own triggers. What affects one person may be perfectly fine for the next.

    I eat chicken and fish, some fruits and some vegetables, coconut oil only to cook with and sea salt and cinnamon. I only recently reintroduced back glutin free oatmeal.

    I avoid all nightshade vegetables like potatoes, peppers and tomatoes.

    I don't eat dairy, soy, corn, legumes, rice, pasta, most grains except GF oatmeal, refined sugar, artificial sugar, all sauces and spices except sea salt and cinnamon. No processed foods.

  • Are you in the US ? What do you mean by legumes? In Europe that is French for all 'vegetables'.

    What does it include where you are?

  • I live in Canada.

    Lugumes are beans, lentils and peas. They include kidney beans, fava beans, Lima brand, black beans, soy bean, split pea etc.

  • Thanks.......frankly I'd pay NOT to eat any of those!

    Apart from Hummus....loaded with lemon juice & garlic.....I never knowingly eat them!

    I'm just experimenting with Rice milk...I do seem less stiff, but as I am very sceptical about exclusion diets I think I may be imagining it. But I'll stay with it until (?if) the stiffness returns.

  • Haha love your humour. I am not a fan of lugumes either

    Some people can eat just about anything, and others have many foods that cause issues from allergies to intolerances to sensitivities and inflammation. I only shared what works personally for myself and unfortunately for me there are very few foods I can eat that don't trigger a flare with my Crohns or my RA

    go for whatever works for you, just like all the different drugs we take, everyone is very different

  • Remission for most is 'chemical remission ' .

    I was very lucky to be in remission for about 18 years ( or so consultant said) ,yearly appointments & life back to normal bar the odd flare & a rubbish hand .Then bam - it came back with vengeance . Medication chopping & changing now, 2 weekly blood tests , now anaemic & feel so ill .

    So remission is definitely possible - and when it does - enjoy it . Do all the things you want to do 😊

  • The medication keeps me in remission but the disease is always there. I work full time as a teacher, but there are some things I know I can't do due to the limitations of the disease. I had both hips replaced at age 26 and 27 and cataracts removed when I was 18 and 19. I am currently in Remission and have been on and off since diagnosis 22 years ago. My last flare was in 2015 when the Humira stopped working, I'm now on Tocilizumab which has been working very well for me. My previous flare was 2010 when the Enbrel became ineffective. I just hope this biologic doesn't stop working too!

  • Hi AJhowell - There is no cure for RA, and probably not for any of the autoimmune diseases. The dictionary says about remission, in part:

    A lessening of intensity or degree; abatement... That is really all we mean when we say remission. It means that the disease process has either slowed down significantly, or stopped, and while we probably still need medications, we are usually not in the position of having to try new ones all of the time. I still have pain and fatigue, but my joints don't hurt much and I can walk without problems, work (at a slower pace for me with frequent breaks). I still require a lot of sleep. Hope you are doing well..

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