Login required to started new threads

Login required to post replies

Rheumatoid Arthritis
Quote | Reply
My last IM was Copenhargen last August. Great day for a 62 year old that loves life.
November: developed sore neck and Intercorsals. Put it down to my poor swim technic and over energetic gym session
December: right elbow swollen for no apparent reason
December: both ankles swollen and by Boxing Day cannot walk. Difficult to get out of bed. Nightmare.
January: my GP takes bloods and my inflammation markers are sky high and positive ANA autoimmue
February: first appointment with Rheumatologist. He prescribes Methotrexate and Prednisone.
I have modified my diet starting with a two day fast then a basic bland food programme cutting out:-
Sugar, caffine, alcohol, meat/fish/oil, gluten and dairy.
I started my diet change before getting diagnosed and I am on Day 31 on this regime and my blood markers CRP dropped 26% and I'm walking again and training on the Tacx in the garage.
My next appointment with my Rheumatologist is next Wednesday with an up to date blood test.
I am going to try and avoid taking the heavy drugs, at the moment since changing my diet to plant based I'm managing on 2x500mg Paracetamol and half a 500mg Naproxen per day.
Neck still sore, intercorsals ok, elbow ok, ankles are still sore but swelling has reduced.
I have been in some very dark places recently and considered some awful ways to end the pain I was in...I know my IM career is over but I have hope. If I can ride my bike and swim in the ocean then I will be happy with that...
I just write this to hear from anyone going through the same thing...cheers
Last edited by: c'monvatu: Feb 20, 18 21:05
Quote Reply
Re: Rheumatoid Arthritis [c'monvatu] [ In reply to ]
Quote | Reply
About two years ago ran my best and hardest 70.3. 2-3 weeks after I developed some of the same symptoms as you plus had severe muscle pain from my Lipitor that I had been taking for 8-10 years with no problems. Did the prednisone and high dosage of Aleve while in and out of tests for 6-9 months. I am so far, more fortunate than you as after the race my thyroid went way north when for years I was maintaining my thyroid level on just slightly the low side. Once we got my thyroid back to where it once was then my RA number dropped and my Arthritis went to sleep. I have a permanent pain/mobility issue in my lower neck but knees, hips and elbows are back to normal. I've been able to complete two full distance races. Doctors assume that the training and hard effort threw off some of my chemical balances and my body starting attacking my joints. I have some other autoimmune issues as well. So now I'm getting away with training but I'm careful to make slow gains in strength and endurance and also to watch my pace at races and not push too hard. I'm sorry that you have this. It's frustrating and scary. I'm 54 now so I'm guessing as I get older my risk for it to return increases each year.
Quote Reply
Re: Rheumatoid Arthritis [jimmytheeagle] [ In reply to ]
Quote | Reply
We haven't managed to establish how I contracted RA. My GP thinks a bacteria was to blame but who knows.? Stress, training too hard, could be but no one knows...
I've finished 7 full and 3 half IM over the past 10 years and never been fitter or stronger...
I'm getting a little better every day using the plant based regime and its not too bad...the choice between a burger or murderous pain is not difficult to decide.
I wish the neck pain would ease up. It's muscular not in my spine and I just cannot shake it...
Thanks for your kind words...we fight on..!!
Last edited by: c'monvatu: Feb 18, 18 13:05
Quote Reply
Re: Rheumatoid Arthritis [c'monvatu] [ In reply to ]
Quote | Reply
Rheumatologist / triathlete here. Happy to weigh in as needed. With effective/early/aggressive treatment RA can be placed in remission and function can hopefully be near normal. Best of luck!
Quote Reply
Re: Rheumatoid Arthritis [doctorchris1979] [ In reply to ]
Quote | Reply
Hi.....please any help would be welcome, I'm a little dazed and confused to be honest.
RA hit me fast and hard. From IM finish in August to bed bound by Christmas.
I'm scared to death of Methotrexate but I'm been strongly advised to start 15mg per week.
My strict diet regime has given me hope...my pain levels are way down and I'm cycling and swimming again although walking is still a challenge.
Any advice would be very very helpful especially from an athlete....I look forward to hearing from you.
Kind Regards
Quote Reply
Re: Rheumatoid Arthritis [c'monvatu] [ In reply to ]
Quote | Reply
Don't put your IM goals aside.

I was diagnosed with RA in 2001 ... very similar symptoms as you: One day the pain was in the ankle and could not walk, the next day the ankle would be fine but then it was the knee, then the hip - the pain literally passing from joint to joint. I felt like I was going crazy and had no idea what was going on.

Once diagnosed, I felt a bit of relief knowing that what was going on was real - but then I found out there were very few treatment options (early 2000's). But that has changed - there are more options now that you can explore. The problem is, there is no way of knowing which med will work for you.

It took me about 10 years to find the right med - it's a long process because each med you try takes about 4-6 months to determine if it is going to work.

There were some dark days ... hard to explain to people what RA is like.

To get through those days, you need a few people around you who understand - my wife was/is my best rock. I also had to have some real serious discussions with my RAdoc regarding where I wanted to be - I finally learned to use the catch phrase '... My pain is not being managed ... ' He and I have a great working partnership now - he 'gets it' with what I do.

I've done 10+ irondistance (qualified for Kona M50-54 in 2016 and earned a black shirt in Norseman 2017) races since being diagnosed and really enjoy sprint races too - so you can still keep your IM / endurance goals. But, you've got an added challenge in getting your RA managed - which can take some work and time.

It's not always easy ... there's good days and bad days. I DNF'd one race because I had a flare up during the run and literally could not run or walk. There are days that I struggle to do anything ... Right now, I'm dealing with some RA issues and I don't know if I'll hit my goals this year. But ... I need that endurance goal to keep me going and to force myself to work through the RA. I'm not going to let RA keep me down - maybe I'll just end up being a bit slower.

I could write more ... but I'll end here and simply encourage you to continue to work with your doc to find the right med. If the one you are on is not working or the side effects (read up on these) are not acceptable, move on. There are more options today for RA then even 20 years ago. Also, learn what triggers a flare up ... foods, stress, certain activities ... lots of things to pay attention to. In my training log, I keep track of any flare ups (and used this to find some patterns).

Feel free to message me ... there's a few people with RA on this board and it is sometimes good to connect.

When I cross the finish line of races now days - I am often overwhelmed with being thankful that I can still race. When you finish your next race (any distance), it will have that much more meaning to you.

Best,

John
Quote Reply
Re: Rheumatoid Arthritis [doctorchris1979] [ In reply to ]
Quote | Reply
Hi Chris...when you refer to: Early/Aggressive Treatment what exactly do you mean..? Multiple combinations of medications..? I've been given Methotrexate and Prednisone but I can ask for something else if a better outcome is possible.
I look forward to your reply...Vincent
Quote Reply
Re: Rheumatoid Arthritis [Jmercer] [ In reply to ]
Quote | Reply
Hi John....thank you so much for your inspiring message. You have made me feel much better.
I know what you mean about 'dark days' and I'm very lucky to have my wife/training partner with me to help...
I've started cycling on the Taxc in the garage and I had my first swim today in over 4 months...I managed 20 lengths of our 25mt pool...not a bad start.
I need to gain weight and get some strength back but first I need to get my inflammation down.
Any help or advice is a huge boost and I thank you for your brilliant message.
Kind Regards - Vince
Quote Reply
Re: Rheumatoid Arthritis [c'monvatu] [ In reply to ]
Quote | Reply
Hi. Yes I prescribe a ton of methotrexate. Its a great drug though admittedly not always tolerated. Its (serious) side effects are overblown (though its annoying side effects i.e. nausea, are not denied). Just watched an Olympic snowboarder with RA, just making point that its livable. The right treatment can place disease in remission. Thats different for everyone, and the path to right treatment may vary based on disease severity (stronger drugs for more severe disease) or unpredictable/idiosyncratic drug side effects. Ie, for patients not responding to MTX, we will usually advise a biologic drug, of which we have 9 or 10 these days, they are life altering for many patients and frankly if I had new onset RA and was hoping to compete competitively as I do now, I would be treating myself (or asking someone else to is the better way to say that) very aggressively, quickly moving to a biologic within 3 to at most 6 months if MTX did not work, with understanding once again that reported side effects may be overblown and might appear more likely to the outside observer just reviewing the internet, and less likely when a careful review of peer-reviewed literature is undertaken (i.e. the data clearly suggest benefit >> risk with these drugs). I am a huge fan of "clean living", diet changes etc, and advocate them to my patients, but am also quite clear with them that data does not support the idea that simply changing diet or lifestyle can suffice to eradicate / treat a very complex molecular immune system disorder which appears based on current data to have its roots in genetic and environmental risk factors which may brew for years before onset of disease. Anyway thats long winded the bottom line is, pursue the clean living, take meds, and continue talking to doctor about changing/adding meds until or unless disease is in remission. Its not possibly for everyone but is for many. It may take 6++ months, or if issues finding right drug a little longer.
Quote Reply
Re: Rheumatoid Arthritis [doctorchris1979] [ In reply to ]
Quote | Reply
Hi thanks for your reply: I started the Methotrexate this morning...15mg once per week. I only developed symptoms in November and although my CRP was 85 reducing to 59mg/l and ESR 85 down
79mm/HR I'm not in too much pain. I take the occasion Paraceatmol or Naproxen.
I tested positive ANA autoimmue and HLA-27B.
I'm not tired, I trained every day 50/60mins on the Tacx plus core and strength work.
I will ask my Rheumatologist about the Biologicals.
Q. Is 15mg per week methotrexate enough.? I don't care about feeling sick if I can hit this thing hard.
Thanks again for your reply.
Last edited by: c'monvatu: Feb 19, 18 0:19
Quote Reply
Re: Rheumatoid Arthritis [c'monvatu] [ In reply to ]
Quote | Reply
Hi. To the point of the other commentor, I don't want to seem to provide you specific medical advise, what I rather want to emphasize is that there are effective treatments for this disease and you may have plenty of reason to hope to keep doing what you love, and that the general plan you reference having been given is, in fact, in line with evidence based treatment guidelines. I wouldn't want to get into dosing specifics without personally caring for you. To the point of the other commentor, fortunately we try not to treat based simply on personal opinion, there are pretty clear treatment guidelines (check out ACR RA treatment guidelines or EULAR RA guidelines (American College of Rheumatology, European League against Rheumatism)), we always try to follow evidence based medicine, so I'm simply suggesting that the plan so far seems fairly in line with these guidelines. Frequent visits to rheum, frequent treatment adjustments (increasing doses, or adding meds, or switching meds, whatever is appropriate to your unique case) if needed until or unless a disease remission is achieved- if that "treat to target" approach is followed then many people can do quite well. Best of luck!
Quote Reply
Re: Rheumatoid Arthritis [doctorchris1979] [ In reply to ]
Quote | Reply
Thanks Chris...I understand completely. You have provided me with valuable information which is inline with other advice I have recieved. This is a massive learning curve under very difficult circumstance. Athletes are not normal people. At 62 I was fitter and stronger than many 30 year olds until recent events. Even now with this damn disease I'm training harder than many 30 year olds.
My active life means everything to me and I don't plan on giving up anytime soon.
Thanks again for your most valuable advice....cheers
Quote Reply
Re: Rheumatoid Arthritis [c'monvatu] [ In reply to ]
Quote | Reply
I've had RA for about 15 years now, initially Naproxen was enough to keep it under control. But after a few years it wasn't helping so my doctor prescribed methotrexate, once a week injection (he said it was more effective than the pill form). He also had me taking B12 injections (two days before) and folic acid (two days after).

After 3 months I saw no improvement so my doctor added Arava and those two combined worked really well for me (but it took about 2 months to see the full benefits). While on the drugs I was having monthly blood work done to monitor my liver and a few other things. Unfortunately my liver couldn't tolerate the combination of the two drugs and knowing that methotrexate on its own didn't work we stopped it and just went with Arava. That though didn't work.

I'm now on Humira (a biologic) and it has been a game changer, within 24 hours I saw noticeable improvement and have been symptom free. It's not a cheap drug (in Canada anyway) and initially my insurance denied me coverage but the drug manufacturer gave it to me for free until they helped sort it out and get me coverage. Physically I haven't felt this good in 15+ years (I don't think I realized how bad RA was affecting me) but mentally there's been a significant increase in how good and energetic I feel.

Hope this helps, let me know if you've got any questions.
Quote Reply
Re: Rheumatoid Arthritis [c'monvatu] [ In reply to ]
Quote | Reply
Hi, I was diagnosed with RA a little over a year ago. Took a few trips to the podiatrist and sports medicine doc with what I believe was some wrong diagnoses. I am in early treatment and all the info I have read on here is what my rheumatologist has gone over I have even reached out to Jmercer to talk and vent as I was in a low place. I am 34 years old and I had to quit my job due to foot and hand pain.
MTX was a no go as it made me very sick, then doc put me on Leflunomide for 3.5 months with no improvement. And just last Friday I took my first biologic med(Enbrel) and within 24hrs I could feel it helping it was amazing feeling, the first time in over a year I could make a fist with my left hand. And yesterday I even ran 1/2 a mile! I may have over done it a bit.
It does feel like my joint pain is coming back slightly since Friday, but It may take a few injections to start feeling my best(on 50mg once a week.
Sorry I am not much help, just letting you know my story so far, and I have hope that along with this med and a better RA diet I may be able to run or even just keep up with my kids again.
Take care!
Last edited by: kjones: Feb 21, 18 10:05
Quote Reply
Re: Rheumatoid Arthritis [amos] [ In reply to ]
Quote | Reply
Thanks Amos....I did not want to take methotrexate because my radical diet change was starting to work...working slow but reducing the inflammation all the same. Problem is high levels of inflammation create more leaky gut so I've decided, reluctantly to start the methotrexate.
I took the first 15mg on Monday and so far no noticeable side effects.
I'm cycling on the Tacx and just started swimming again. It's all very feeble as I've lost 7kg and a good deal of strength. If withdrawn from Kalmar IM my A race for this year...
I have a rheumatologist appointment today and I will discuss Biologicals with him...
My plan is to get the inflammation down, any which way, then establish a plant based programme and try to regain some of my active life.
I don't expect to race full distance IM but I love cycling and open water sea swimming...I will be more than happy with that....cheers Vince
Quote Reply
Re: Rheumatoid Arthritis [kjones] [ In reply to ]
Quote | Reply
Hi kjones....you cheered me up..!! I blamed my sore feet on some new running shoes I had bourght.
Size 44 as normal I was raging why they Asics would mess around with their shoes.
It was very scary on Boxing Day when I could not walk from my bed to the toilet. My wife had to put a potty next to the bed. Talk about dark places...!!
My neck and intercorsals with so inflamed it was impossible to get up or move around.
I started on a very strict plant based diet before I was officially diagnosed and was able to walk within 3 days of starting. I'm on Day 35 of that. The inflammation is coming down but slowly.
I started Methotrexate 15mg on Monday 19/2/18 and so far no noticeable side effects.
I'm cycling on a trainer in the garage and just started swimming again. Walking is still a challenge.
My plan is to reduce the inflammation any way I can then stop the Meds and try to maintain a low inflammation base using the diet. Might work but might not...I rather avoid staying on Meds long term.
I have an appointment with my rheumatologist today and I will ask him about the Biologicals and I'll post any progress...
I have withdrawn from this years Kalmar IM. To be honest I don't think I'll be 'going long' again.
Stay in touch - Vince
Quote Reply