Hi all, I'm Dominic, I was recently diagnosed with seropositive RA, I am/was a keen Marathon/ultra marathon runner and competed in an off road ultra marathon as recently as July, I then developed a pain in one toe which I presumed was a stress fracture from said run, over the next few weeks, this spread to both feet and both hands, I went to my GP for blood tests, these came back as raised and I was referred to rheumatology, my appointment took approx 5 weeks, and during this time my symptoms spread to, both feet, both ankles, both knees,both wrists, hands, shoulders hips and knees, I also have swelling and pain in neck and upper jaw, I have started taking Naproxen twice daily, hydroxychloroquine twice daily, methotrexate and folic acid, I also recieved a steroid injection, my rheumatoid factor was 159 anti-CCP was 116 and my CRP was 40, are these considered high? as I have no real bearing of what they should be, also are there any runners on here? I want to get back to running, but it seems like a long way off, lots of information and questions, but this is all new and would be nice to find out more from others. Thanks.
Newly diagnosed with RA: Hi all, I'm Dominic, I was... - NRAS
Newly diagnosed with RA
Hi Dominic so sorry you have had to joins us. A great bunch on here and you will get a lot of support here and many great answers to your questions.
Your blood test show the disease is very active and I personally would say aggressive.unfortunately this disease is very individual although we share common symptoms.
Treatment is very trial and error and you may find you have to try a range of drugs until you find the right combination. Management of this treatment really helps . Keeping a diary and photos of swellings etc will help you with what triggers a flare and also the information will be helpful for your consultant.... will you be able to run again I can’t answer . Some people go into remission and can carry on pretty well. Others aren’t so lucky... I’m one of the latter. I was a real exercise junky . Did ok the first 12 months then noticed I had to stop certain classes now 3 years after diagnosis I can barely walk the dog and have reduced my working day to one and a half days and I still struggle. Hoping to start a biological soon and can start to exercise again.
Keep asking questions there’s always someone who can help.
Don’t mean to sound gloomy there are some great success stories but it won’t happen quickly.
Hi Dominic - sorry to hear your story, J1707 articulates the journey well. I was diagnosed November 2016.
Although not a runner - I was extremely active. I too was diagnosed with aggressive RA RF 200 and high markers of inflammation in the blood, CRP 39. (Normal less than 10 mg /L. ESR was high too (Norm results is 1–13 mm/hr for males and 1–20 mm/hr for females).
RA impact everyone differently. Do become your own health advocate - insistence pays off when dealing with your consultants. I put together a team that could help me.
RA caused destruction to my ankles and feet, with tendonitis. I went from being unable to walk, crawling to bathroom, using my bum to drag myself up and down the stairs to now with the right medication able to tackle stairs much improved.
I am not writing this to scare you as everyones story is different. Just don't be in denial as to how quickly RA can swoop. I was in denial that I had it until slowly things started to alter. The sooner you find the right medication for you the better. There are many people on here who are perfectly fit and well who live with RA, just do your due diligence 😌
Wishing you a faithful and thriving journey - Hessie
Welcome to the club Domonicveal as others have said everyone’s different and getting that magic combination is difficult but you’ll get there I’m Sero negative and have been retired medically for 4 years now and it’s taken me this time to get some sort off normality but I still have off days but have learned not to fight this disease when I’m weak and glaring and to pace myself, there’s a lot off people on here with plenty off knowledge who can give you advice and the helpline personnel at NRAS are brilliant so don’t be shy to give them a ring if you need advice or even a shoulder to cry on xxx
Hi Dominic like others I’m sorry to hear of how quickly your RA has progressed. You can get record books to chart your bloods and inside they tell you what the normal range is for each test. CRP is listed as between 1 and 10. Everyone seems to be started on Methotraxate. I couldn’t get on with it because it made me feel so sick. It’s worth knowing you can get it by injection. It’s simple and easy to use. I’m on a biologic and that’s worked wonders. I also follow the Paleo Auto Immune protocol.
It’s a tough regime but it’s only when I introduce stuff that isn’t on it that I suffer more. As an athlete you’re probably used to eating healthily but it’s worth looking this up. Sarah Ballantyne’s book is really good. A dense start about science but still easily readable. There’s websites about it and a squirrel in the kitchen is a good one. I saw a nutritionalist that specialised in auto immune conditions. It’s just an extra support with the medication.
Good luck and keep us in touch with how you’re getting on x
Hi Dominic - sorry to hear that life has bought you to our side of things but glad to extend a warm welcome! 😎
The good news is that you are being treated robustly- if your first and only symptoms started in July you have had one of the (if not ‘the’) fastest turnarounds I’ve heard of - hats off to your GP.
Some tips that may help - ask for a referral to podiatrist who will assess your feet and hopefully will refer on to orthotics who will draw up insoles to protect your toe and feet joints.
Ask to see a OT who will advise re hand joints and offer further support if needed. Get the support in early for both of these as early prevention is better than later protection.
At this stage rest, rest and then rest some more. Drink extra water as the methotrexate can be dehydrating - I don’t know the other meds as I’ve not taken them. Keep in touch with mates etc - even though your not running etc.
If you are up for it do ‘aqua jogging’ - serious aqua joggers wear belts that keep them at an optimum angle in the water - I’ve no experience of using one but this activity could keep you moving whilst also keeping weight off your joints but go steady for now as your condition settles.
Being a ultra runner suggests that you probably eat ‘clean’ already but there might be ways to reduce sugar and processed foods in your diet and that may help - unfortunately I can talk the diet talk but personally find it hard to eat squeaky clean 🙃
I use meditation to reduce my stress levels and to boost my coping skills - there is a free app out the called Smiling Mind it’s aimed at schools. I teach hence I found the App for my class - it’s not ‘little’ and is a good starting point. For the past 3 years I’ve attended a 10 day silent retreat and after each one I’ve noticed a marked improvement in myself so worth considering if your up for that kind of thing.
Well that’s it for now I think.
All the best
Ali
Hi and welcome,
Sorry you have had to join the club. You seem to have been treated very quickly and early intervention is very important for limiting the affects of this disease. I found these articles that you might find interesting:
healthmonitor.com/rheumatoi...
jointhealth.org/programs-jh...
Good luck
Thanks guys, I have a podiatry appointment on the 20th, also my second hand therapy session earlier that day, I'm wearing a night splint for left hand as two fingers already have flexor tendon damage, my feet have been kind of messed up since early childhood, deviation to toes, and bunions, I did eat healthy, right up until my diagnoses, I'm vegetarian, and from January 1st I cut refined sugar from my diet, I was feeling great, steady energy levels throughout the day, but no feel like "what's the point" my friend sent me a good book on healthy eating, specifically for auto immune disorders, so will give it a shot, my eldest brother also has RA, he was diagnosed approx 4-5 years ago, in both knees, his has recently started to affect fingers, interestingly we both worked together in the early 90's, working with silica sand, there is apparently a link between silica exposure and sero positive RA, his RA isn't as aggressive as mine, but I did most of the work with the sand! The NHS have been amazing from day one. Thanks all, so many questions.
Wow you’ve definitely got the measure of this..... sorry I wish I could add further advice.
You and your brother might be in a position to claim re industrial injury around the silica sand exposure (I know those with silicosis can) but not if you were self employed. This may help gov.uk/industrial-injuries-... But alas it won’t cure the RA!
Ali
Dominic, welcome to the community. I have ‘Strongly anti-CCP Positive’ RA ie aggressive and hard to treat.
I was very active though not an athlete. Changing what I eat has helped maximise health, meaning my body might be able to repair itself better between flares and is less likely to give in to other auto immune diseases.
You have indeed been very fortunate to get quick diagnosis and early treatment.
Wishing you all the best with medications.
Dominic I am sorry you have joined us. You have come to the right place. I am sorry, but I am not a runner, but I am sure there are some here who are. It is trial and error with the drugs yes your readings are high, but given time and with the help of the drugs you will get back to some normality. Anyway a warm welcome from me. xxx
Hi Dominic, I was nowhere near your level of athleticism, but very active, hiking, cycling, swimming etc. Diagnosed in 2009 after like you deteriorating rapidly, since 2014 I'm in remission and hardly think of having RA in my life.
It was a long and hard journey. One of the things I found really helpful is to know as much as possible about RA, the medications and self management. The best source of information for me was NRAS. I also became a volunteer. Look on their website, inform yourself. Ring the help desk if you guidance. There is so much to take in and learn, but RA is not the end, it's the beginning of a different life. All the best.
Hello Dominic,
As the others have said, we're all different in the way our RA progresses (or not) and in responses to various drugs. This is my experience, which of course may not be the same as yours. I'm not an athlete, but I'm a keen hiker, especially in mountains, and I danced regularly and had a very full life.
I started with RA last year aged 70 and it took 2 months to get to a rheumatologist and virtually another 2 months to get a diagnosis from her. (Partly this was because I'm sero-negative. It sounds as if you got into the system very quickly. )
While waiting for the diagnosis, I went almost overnight from just having stiffness in the knees plus swollen ankles to a full-blown attack, with terrible pain in my arms, badly swollen hands and absolutely no "spring" in my knees. I could not stand up from a chair or the toilet, I could not turn over in bed. At one point I sent my husband out to buy a wheelchair (fortunately never used). My rheumatologist said it was unusual for the RA to be so aggressive so early on.
That was back in February, March and April. I was put on methotrexate, hydroxychloroquine and prednisolone and amazingly, at the end of May I travelled with my family by train from Manchester to Carcassonne for my niece's wedding and then went on to Lake Annecy for a week's holiday and managed to walk a good 5 miles a day on level ground.
In August I went to Germany for 2 weeks and did a week's walking on heathland, up to 7 miles a day. I'm not yet back to being able to tackle what I was doing last year (up to 10 miles daily in mountainous country), but maybe I'll be able to get back to that.
I'm telling you this just to say the way ahead is not necessarily nothing but things getting worse and worse. You're in the very early stages at the moment and I'm sure you've been told that the methotrexate can take a long time to start showing any effect. If things are still bad, ask about prednisolone. It has absolutely worked wonders for me and, although it takes a long time to taper off it, I think it has been worth it.
Personally I refused a steroid injection as I'd read off-putting things about it, or the anaesthetic used with it, destroying cartilage and also they are less and less effective as time goes by, but that is a personal decision for each of us.
Sorry this is such a long post. I wish you well. Let us know how you get on and let's all do whatever we can to defend our wonderful NHS.
Hi Dominic
I was diagnosed with RA in 2013 with an RA factor 151. Started on Hydrochloquin, and went vegan. He told me changing my diet would not help do don't bother. 3 months later I saw another RA Dr for another opinion and he started me on methotrexate. I could barely walk or get out of bed. The bed covers felt like they weighed 50lbs. I lost weight and muscle and went from 130 to 110 in weight. The drugs take a long time to start to work especially if you have a lot of inflammation in your body. 3 mons later I went to another RA Dr who started me on Humira injections. She said I had a very aggressive form of RA.
I too was active with swing dancing twice a week and tennis twice a week to barely able to step up one step to get into my house. I asked if I would ever play tennis again and she that would be her goal for me. She drew fluid off my knees to test for gout that was Neg.
Two yrs ago I went on a Raw green smoothie diet which has seems to help. I've been back to playing tennis now for 4 yrs. A friend of mine told me about Dr Goldner who gives all her information for free on YouTube. She encourages green smoothies daily and raw diet.
Eliminating sugar (I have a sweet tooth), any processed oils.
I am off the Humira now and have lowered my hydro and methotrexate doses all under RA Dr approval. And I'm back to playing tennis and dancing weekly. I was 62 when dignosed and the first Dr said I was a little old to be getting this because usually it's between 20-40 that people get RA. Even though he said diet doesn't help I believe that it does. I believe that you have to fix the gut and stabilize any microorganisms and take probiotics and keep the colon clean. Good luck.
Hi Dominic, I was very fit and healthy, a long distance and nordic walker rather than a runner. I'm working my way through meds at the moment, some of which have helped , but the side effects have been prohibitive and I've had to stop taking several of them.
You might get back running, but don't put stress on your joints too soon, it's a slow process to get well again, but with modern meds and early treatment , which you have had, you could do that. Stay positive, but be prepared let things run their course.
So sorry Dominic about your diagnosis. I was diagnosed at 50. I was very active (not to your extent) and my ra was sudden and severe. I was diagnosed with autoimmune hepatitis at the same time as ra. I think you have to have a period where you grieve for the person you were and the life you thought you were going to have and eventually accept that it will be different. I'm 5foot 6inches tall and at one stage weighed less than 8st. I was so ill. It took 6 years to find the right drug for me and now I walk miles and do at least 2 Pilates classes a week and work part time and am back to 9st 7lbs. I have learned so much about myself and those close to me (some of whom no longer are and some of whom are much closer ) that I can say that having ra has enriched my life in ways I never thought it would. It has made me realise what things are really important in life. It is a lifelong condition and after being stable and well for 2 years my white blood cell count is too low so my meds are being tweaked again......!
Hi Dominic, don't get upset, I was diagnosed about 20 years ago, I went to the GP, endless times, and when I said to them, what have you done for the last six months, I was a bit firm(not rude). Then I was sent to the hospital. I think sometimes you have to be firm, no harm at least you they sent you an appointment. I had to wait for SIX MONTHS, for a hospital appointment.
You were lucky to get an appointment after 5 weeks, don't worry medication takes a while to work, at least 3 to 6 months. Keep Positive everything will work out, have you tried hot and Cold therapy on your hands and feet, also on your shoulders, it might bring the swelling down.
Everybody's body is different, don't despare. Thinks will work out. Hope you can start running soon.
I was only 33 and was very active before my son came, I was diagnosed after he was born.
Hello and welcome Dominic to this friendly informative group. Feel free to post or ask anything you want as there’s lots of us who have been where you are now and with a wealth of knowledge 😊 It’s great that you were seen in rheumatology quickly and you have already started on meds. Early detection and treatment can have good results. Hopefully it won’t be too long before you start to feel the benefit.
Hi, I also have RA and have run 3 half marathons since diagnosis (the longest run pre diagnosis was 10 miles). I find the healthier and more active I am the better I feel overall but you have to listen to your body. There is a private Facebook group that I have found to be very good for motivation called "runners with rheumatoid arthritis". Its a great community with lots of runners of all levels and are all very supportive of one another.
Thanks for that, I have requested to join the group,and it's nice to know you have made it back to running, I'm not expecting or if I'm honest, wanting to get back to the distance I was running before, it's hard work under normal circumstances, but doing 5k several times a week would make me happy
Hi Dominic
I was an ultra trail runner up until three years ago. I ran 2 hours every other day and one 5 hour run once a week. I was a national level flatwater kayaker in my my younger years, as well as national ranked squash player and orienteer. I have done many sports in my life, and continue to mountain bike and xc ski.
I stopped running when it was determined I needed to have a total hip replacement due to a fall in speed skating. That is when my entire life turned upside down.
I had the hip replacement in December of 2017, and four months later I was diagnosed with rheumatoid arthritis. What I thought was tendonitis in my elbow (which I had for months previous to my hip replacement) was actually RA. There were other signs like pain in my feet, which I just brushed off from perhaps stepping on a root or rock when I was running.
I know better now. There were signs, I just didn't realize it was RA.
As you have read from others, RA is different for everyone. My experience with RA is it can be extremely exhausting.
Be aware that strenuous exercise can affect your liver enzyme ALT and AST results. This is what I am battling with at the moment. My liver is trying to flush out the RA medication and also what the muscles are secreting, so my ALT and AST levels are higher than they should be. I was taken off methotrexate this past June after my levels increased too high. In October I was put on leflunomide and now the same thing is happening. My Rheummy wants to put me on a biologic, but I have to try at least two DMARDs before I can receive coverage for the biologic. (I live in Canada)
Exercise has and always will be a part of my life. I just have to find the right medication that works for me.
I hope this information helps!
Being diagnosed with RA is horrible and I'm sorry to hear that it happened to you. I also have Seropositive RA and my Rheumatoid factor was 314 when I was first diagnosed. My CRP is usually normal (common for us Seropositives). I've been on MTX since 2013 and it's worked fairly well for me. (Take it by injection - you get more of the medicine and it's far easier on your liver.) If you feel that folic acid isn't helping you, switch to the liquid folate version - some people don't absorb folic well. Tumeric helps. Also, find a doctor who will check all of your mineral levels - your Rheumy probably won't care about this but it's very important. I discovered that I had very low Vit D and Zinc levels. Zinc is very important for your immune system and Vit D will keep you healthy. Last tip: MTX wasn't getting me into remission and I was afraid to try Rituxan (Humira, Embrel, & Xeljanc all failed me) because of the potential side effect called P.M.L. Earlier this year, I decided to do Rituxan infusions and it's been a bit of a miracle drug for me. I am now close to remission and can do all of the things that I want to do. My Rheumy believes that Rituxan is a good choice for Seropositives. Good luck to you!
Dominic like you I was a runner, when I was stopped in my tracks with a diagnosis of sero positive RA. Like you, running has been a big part of my life, so I was determined to never say never. We blasted the RA initially and after a year cut back on some drugs.
Through the whole time would go to a hydro therapy pool. and and run in there, very slowly. One year on I am cycling, swimming and running, but only on soft surfaces. No, the pain has not gone away, but I am of the opinion whilst I have movement I want to use it as there may be a point in my life in the future where I will only have minimal function. I wake up sore everywhere, everyday, but I will always be A Have a go Henry, good luck on your RA journey.
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