Hello all,
Please is anyone feeling good after the Meds we are all taking for this illness?
This site is great and helps us all a lot with our stories and responses 👍😀 so thanks to all ❤️
Just wondered is it just people who are suffering that share notes? Or is there not any happy feel good stories out there? Maybe people that feel good don't come on here?
What do you think guys and dolls 💕💕
Well doughnut I'm feeling pretty good at the moment and I'm here😁
Me too!
For the last couple of years I've generally been in remission thanks to the drugs - and with virtually no drug side effects.
I've been using this site for years now, and there are a huge number of people who appear at the early stages of the disease in pain and misery but 9 months or so later once they're settled on drugs that work they vanish... Sometimes they pop back to say they're doing fine which is so nice to hear.
Thank you x that is great to hear 😘👯
And me! Whilst it's true most people who use forums such as this are struggling with meds or the disease itself there are quite a few of us here who are doing well, I can count myself amongst them the majority of the time.....& when I'm not quite as good (it can throw us curve balls from time to time) that's not always due to RD, I've usually overdone it because I feel ok! It's also a good resource for people such as yourself who are to quote your good self "newly diagnosed & very scared". Those of us who've lived with the disease longer aim to ease your fears, I hope we do anyhow! Do remember too that we are coping with varying severities, not everyone's experience is the same.... or are able to cope as well as others.
Humira is working well for me!
Me too, I'm pretty good right now and I'm still here. When all this kicked off a few years ago, people on here gave me hope. I was in a really bad way and very scared about the future........lovely people on here assured me it would get better, and it certainly has. I told myself that once I improved I would stick around and try to reassure others and give them hope.....I hope I do that from time to time.
Thank you xx you just have helped me 😘😘😘
1full year in and settled in on methotrexate, a stomach pill to ease nauseous feeling, an anti-inflammatory and a strong version of folic acid and pain pills to get through any uncomfortable days. Compared to where I was, I'll take it. I always now have 5 good, almost normal days out of seven. For all those newly diagnosed, please try to relax and let the professionals help you figure out the best routine that works for you. It gets better.... alice
Fantastic to hear? Do you ever have a glass of wine or beer ?
Not on a regular basis. Occasionally ( 1x a month) a juice glass of beer. I'm a scardycat.
Hey Alice - It's funny - I noticed the exact same thing. When I first started, I would have an hour good, then two, then four, and got to the 5 out of 7 you are talking about. When the MTX wasn't enough is where it started reversing again. For a disease that is such a different experience for each person, it's interesting that there are so many things similar.
My RA is in remission thanks to Leflodamide, all is great except for a broken toe. But no housework so every cloud etc xx
Hi, I am here. This site gave me so much support and information when I first joined. I was like many ,struggling with pain and the effect It was having on my life and body.
Contributors on health unlock actually educated me in so many different ways, helping me understand the mental impact as well as the physical.
I have been on a biologic for 3 months,it has had a very positive impact, and apart from a couple of days a fortnight I am in a good place.
I still gain a lot from this site, and it is always good to hear how others are doing. And if I can in some small way share my experience and others find it helpful then that is great.
Take Care
Smithfield.
I'm always here, I don't post that much, but if I can help someone going through something I have some experience of I will.
This site has helped me so much. When I was first diagnosed I was scared, bewildered and confused. Just knowing others feel the same, are experiencing the same things and that there is decent life after diagnosis is wonderful and has helped me so much.
I understand all the things my GP and Rheumy tell me, but this site adds the human factor, the everyday ways to cope.
Such fabs peeps - long may it continue.
I'm relatively stable now , I've had about 18glorious months of remission, then about a year of misery again - just about stable again now.
Thank you everyone! It's hugely appreciated.
Hi what are you taking?
I'm on 22.5 mg Methotrexate, 200 x 2 daily hydroxychloroquine, frolic acid 6 days a week and I use Naproxen with Omeprazole when I need some anti inflammatory help.
I also take multi vitamins, cod liver oil, evening primrose oil and glucosamine & chondroitin.
I rattle when I walk!
I think it is important for this site to reflect good news experiences as well but equally I can understand that most people post when they have a problem and/ or are really struggling.
I have only recently found the site, really by accident just browsing on the net and I think it's a brilliant resource. Was diagnosed (RA factor and Cpp positive) in February this year after my stiff knees suddenly got much worse and in a matter of a few weeks severe pain in many joints and could hardly move. Steroid pill plus mtx and hydro chloroquine dampened everything down quickly and so far ( touch wood) I have been well and mostly pain free.
When an inc in my mtx dose made me feel grotty it was so useful to read of other people's similar experiences but I can understand that most people post when they are really struggling - which perhaps doesn't really reflect the whole experience of RA.
I am not very good at the moment,but i slept well last night thank heavens.xxxxx
I try to post my good experiences when ever I can especially when people post concerns about treatments and side effects. I encourage people to have an open mind about any new treatments and not to focus on the possible side effects.
I have got on well with all of my treatments over the years and have been well supported by my rheumatology team.
It is important to acknowledge that some people have serious problems with side effects or cannot find a treatment that works for them.
Of course most of us post when we have a problem! But if you do a search for good news or words like "brilliant", you will find that people do post positive things on here too. I posted about my sister who also has RD, she recently celebrated her 80th birthday with two family parties, a walk along the lake, a lunch with old colleagues from work and a holiday in Spain with her man friend! She's on a biologic and has done really well after two knee replacements and a recent wrist operation.
That is so cute and wonderful - With her man friend. My mother in law just passed in June, but she was living in assisted living, and during her time there had a couple of "boyfriends" (her words). How sweet is that?
My medication is controlling my RA very well. I was diagnosed with JIA when I was 14 and 20 years later I'm a teacher and I teach my Reception class full time. I cycle and have completed 60 mile sportives. I lost my fitness after a huge flare 18 months ago but I'm in remission again after changing from Humira to Tocilizumab. I've just joined the gym and have my induction in about 30 minutes! My current cocktail of meds is Tocilizumab, Methotrexate and Folic acid. In the last year I stopped using Leflunomide and Meloxicam. In general people only tend to post when things are bad, it's human nature I think, but those of us who are well are about to give support to others when they need it. Ruth x
i was happy ie v little pain on methotrexate and steroids!! then they weaned me off prednisolone which i had for 15 years for pmr but had got down to 5mg daily. pains began again then after 6m of mtx - a cough... now in limbo land . had 2 xrays n breathing tests n waiting 4 lung scan nxt week. i know they have to be cautious re mtx but the cough went after gp gave me steroid nosedrops..... so now on ibuprofen and shhhhh 2.5 mg - 5mg pred. til they get it together and hopefully give back mtx. then i will be happy again.... lol.. interesting the only bone scan i had was after the15 years - and they cdn't believe my bones were so good. no sign of osteo.. so - song of the39-45 war babies... dem bones, dem bones etc. they gave mums to be calcium tabs at that time, cd there be a link? meanwhile rheum arthritis racing round my body 1 day hands then wrists 2day its ankles as well is this rapid transit common? sorry no caps 1 finger typng 2 day.
so ... was happy - learned much from site - will be happy again. soooooon please lol. luv to all
Hi Doughnut im feeling ok to apart from the daily aches n pains that RA shares with us all but we just have to get on with life. In my opinion everything stems from being as positive as you can, coping with the pain isnt allways easy but there's allways painkillers n hot baths. Couple of beers n a laugh with mates now and again is a winner to. Stay well n keep smiling.
Hi. Good point and as i have been on methtrex and hydrox for 5 weeks now i have to say my hands are so much better in the morning, i can do the simple things again without so much pain, i can dress easier, without too much info deal with loo paper without pain hold tooth brush and coffee cups so i am thrilled. I have struggled with these things for years. I went to restaurant a few days ago and after 2hrs + seated i would have had to use my hubby, the table and anything else to hand to get up and stay upright and i stood without thinking and walked away. My hubby stood there gaping! No obvious side effects head açhes little nausia day after methatrex. In the last few days i havnt experienced that wading through treacle feeling at all. So it can work have faithxx😃😆😆😆😆😆
Hi Doughnut61 - I am actually very happy, but I am not on the same meds at this time as most of the folks on here. I just like the support for the disease itself. I tried them, but they made me sick. I felt better for a while, but then they started talked about biologics (after a year on MTX). I refused those, and instead have been taking Minocycline for the last 10 months. It is working incredibly well for me with few side effects (other than sweating constantly - sheesh!), but I don't know your medical system and what you can and cannot do.
When I decided to switch, I went to my PCP (GP), took printouts from the Road Back Foundation (Dr. Thomas McPherson Brown), and asked for her to support me in this. Since this is what they give teenagers for zits, it seemed to me like she might approve it. She did, ran some blood work, admitted that she was scared, and I promised her that if in three years (it can take that long), I was not better, or is in a year I was actually worse, I would go back to the rheumatologist, and let her put me on whatever she wants.
In the intervening 10 months, almost all of my lab work has dropped into normal ranges. I am only a little over in the CR-P (inflammation) area, and the Sjogrens test is two points over. And that was last May, after only 6 months. My RA factor, sed rate, Eosinophil's, etc. are all back to normal ranges. And while my liver was never an issue actually with the MTX, it has dropped into the lower ranges as well. To say she was stunned is probably mild. When she first came into the exam room, she looked at me like she thought she might cry. THEN she looked at my lab work.
This was a very interesting question to ask. It does seem like we are all pretty miserable, but I suspect we are not across the board. More for the new people that have just discovered that they have dropped into a kind of living hell in some way with the gift that keeps on giving...
Hope you are happy today too!
Im not on any meds but I treat self with Acupuncture and supplements and highly recommend getting acupuncture. Diet and allergies are huge factors that trigger inflammation. I stay gluten free and minimize sugar and when i eat an allergic food lije tomatoes even tiny amounts or eat gluten I have a severe reaction the next day. I do take some specialty supplements that help minimize inflammation .
Hi Lucyacudr, very interested in your message. I am avoiding med if I can, and have been on a uric acid free diet for over a year. No tomatoes, certain fruit, drinks etc. Cider vinegar regularly and honey. It hasn't stopped progress of the disease. Now reading about a starch diet for Gout particularly. Reading a lot of peoples messages gives me some hope that if I have to resort to medication, the side effects could be manageable. Any further information on diet you have found helpful?
I felt like my ra went away 5 months ago after suffering first from the pain in my hands for 2 years and feeling like a zombie from the oral meds they gave me. then i had fevers and infections for two years from the mtx and humeria. then by chance it was discovered I had an accessed tooth...never any pain in the tooth. just huge swollen lymph nodes moving all around my jaw and mouth. my niece was a dentist in an oral surgery residency a day saw her last Thanksgiving and she figured it out in about 3 seconds. I had developed sinus channels all over my mouth and the infection had been moving around for about 3 months. something my doctor didn't pick up on even though I seemed to see her every week for 3 months. see the dentist every 6 months and take good care of my teeth. that tooth had been discolored for years and was never loose or caused any pain. well turned out it had a huge access that was munching away at my jaw and had no root left. after it was pulled I gradually started to feel better. The feeling that went along with having ra went away. My energy returned. got out of a bad relationship. Cut down on the stress in my life and quite taking all my meds. fussed up when I saw my rheumatologist and told her i was cured. She is one of the best and when she finally took me on as a private patient she had told me that I had the worse kind with the worst prognosis that had never been treated correctly. so she made me add methotrexate. had been on the pills twice and failed due to the terrible side effects so she put me on a small dose of 5mg. That i gave myself as a shot. Well she told me i wasnt cured but said i didnt have to take the humeria unless I needed it and then i had to go back to every two weeks. but i could ease off of it and take it once a month or not at all but that i couldnt stop taking the mtx because the humeria wouldn't work if I did and she would have to give me something worse. she said going on and off the mtx just made the fatigue worse. so i had bloodwork done and hand xrays and everthing was all good. Of course the xrays still shied damage but it hadn't changed. so i have been complying with the mtx. so when I see her again in six months and still feeling good maybe she will believe I am cured. I listene to what my body is telling me. it is not as hopeless as what I once thought.
Hi
I'm fairly new to RA and I suppose they are finding the right treatment for me at the moment. I'm feeling nauseas together with fatigue a few days following MXT injection. I also am also suffering from mouth ulcers and recurring cold sores therefore lack of appetite too.
Have a telephone review this week so hope this is a positive assessment. Not sure how this will go as my first telephone review since diagnosis and been some months since my last review.
Have a lovely evening
Ps taking an anti emetic and folic acid 6 days a week
Also drinking copious amounts of water
Hi Doughnut61 ! I hope you are getting a lot of good responses. When the meds kicked in and I first got things under control, I felt amazing and was able to start indoor rock climbing, got back into running, and even toyed with tree climbing and monkey bars! Several factors led to a nearly year-long flare, then I got better again (but had developed lazy habits). Now I have been off MTX for nearly 7 months and as a result am flaring again. I am waiting (impatiently) for a normal lab result so that I can try Arava. Knowing I was able to feel as well as I did, I am hopeful to get back to that! In the meanwhile, I am living my life as best I can! This week I will start Beaver Scouts (as one of the leaders for my 5 and 7 year old boys) and Girl Guides (where I get to mentor other people's children!). I am also working full time (though thankfully most of it is from the comfort of my own home!). Good luck to you. There is light breaking through those clouds!
Hi,
I'm not too far along on this journey but after months of hurt, then 12 weeks of MTX and Hydroxy and steroid injections, I now feel great. I am crossing my fingers, gently(!) that it's not still the steroids and the meds have now kicked in...Sounds like lots of people have 'happy right now' times. I have decided to focus on that when I feel it! x
i have been on so many drugs. Started on Humira 6 weeks ago. I have been basically pain free. We are slowly removing the first tier of drugs. My lab are all within normal and all I can say is thank you God
I wouldn't say I feel terrific, but I'm finally getting my head round the whole thing and feeling much happier about the illness and treatment so to me, that's a huge improvement.
I think that counts as positive!
Also, yes, I go to the pub and have a beer or two from time to time! And I'm feeling ok with that, when it was one of the things that really freaked me out about the meds. Had a good straight talk with a friend who's had RD since she was a teenager and she told me to stop worrying and fixating on things and to just carry on with my life. Helped a lot.
So, all in all, pretty good.
I'm one of those who only usually post here when I'm having a bad time, and because I'm quite new and pretty ignorant about the illness, I don't feel I know enough to comment on most things, so it's nice to share some good(ish) news! Thanks!
Hi
Well done for a keeping things on the bright side.
I have just started Abatacept, been on it for 2 weeks, and apart from a cold sore thats just broken out, all is well "so far so Good" touch wood and all that.
I was diagnosed 3 years ago and have had some difficult times I had to retire due to RA but I'm 64 so it was my time. I manage to have early morning swims and take my dog out for walks, things are ok at the moment and long may it last.
good to read that so many of us are doing well and thanks again of the positive post and vibes
best wishes
kay
Thank you all so much for replying. You are all so lovely and have made me feel so much better about my future life with RA . I to will listen to my Rheumy as I had a grandmother and an aunt whom had such awful deformities as they had not got the choice of taking the Meds we have today. Love and hugs to you all and positivity 👊🏻⭐️⭐️⭐️👊🏻
Feeling good most days ,taking my supplements and eating very healthy and doing Acupuncture, and meditation, cutting out as much stress as possible ,thinking positive, if anyone wants supplement help reach out ,
Its very easy to get into a negative cycle and I am so happy that so many people here are able to help break that cycle. Whilst the goal is remission (until they find a cure) finding joy in everyday is my way of sticking up my (wonky) middle finger to this horrible disease.
In many ways the best thing that happened in my journey was the jerk of a rheumatologist who told 19 year old me that I would be in a wheelchair by age 30. That made me do everything in my power to make sure it was not my reality. So here I am at 52, living on the other side of the world, exploring what we can in lockdown and meeting lots of amazing people.
So now what?
My first post, any advice appreciated!
