Rheumatoid Arthritis

[RMJacobs]

I have RA and I haven’t taken prednisone since the first year (I had first huge symptoms in April '97 and was diagnosed January '98). Prednisone is NOT my friend as even a tiny dose turns me into a raving lunatic (even more so than usual). So I quickly learned I could not use pred.

I was on plaquenil back at the beginning, and I think it took several months to start working. I didn’t get great relief until I started on Humira (but remember that each person’s response to drugs is different).

The cool thing about Humira is that it is the best for me at controlling the “I just feel like crap” part of RA. Since spring 2003, I’ve been on injected methotrexate, Humira and an anti-inflammatory, and for the most part the combo does the job.

What I think is hard to wrap our heads around is that we will never be the people we were before this hit. Each individual has differing abilities to keep going with things we did pre-RA. Often expectations must be adjusted, which is very disheartening and I wish it weren’t so.

Equisusan, you sound like you are at the beginning of this adventure. I’d say the jury is very much out on your long-term abilities. Try to take it a day at a time and do as much as you can. It’s hard to find the balance between doing enough to keep your capabilities and overdoing, but you will gain some of that knowledge with time.

With the right meds, your hands will get better. I found it easier to hang onto things I was already doing than it was to start something new or go back to something I hadn’t done in years. For example, I was a long-distance bike rider throughout my adult life. I kept biking but cut way back on my mileage. Now I do ten-mile rides and I’m happy. After RA hit me, I tried to go back to riding horses, and that didn’t work out so well. I think the outcome would have been different had I kept up with riding all along. So now I drive a wonderful pony instead.

Best of luck.

Rebecca

[equisusan]

[QUOTE=RMJacobs;7218679]

Equisusan, you sound like you are at the beginning of this adventure. I’d say the jury is very much out on your long-term abilities. Try to take it a day at a time and do as much as you can. It’s hard to find the balance between doing enough to keep your capabilities and overdoing, but you will gain some of that knowledge with time.

With the right meds, your hands will get better. I found it easier to hang onto things I was already doing than it was to start something new or go back to something I hadn’t done in years.[/QUOTE]

Thank you Rebecca. Appreciate the support. Yes I’m at the beginning but its already changed my perspective on lots of things. If I’m going to get worse and not be able to compete hunter/jumper then maybe I should do more now… that’s what I’ve been thinking. I’m at a point in my life where I could stop working for a year and ride full time. I can’t retire fully yet but maybe I shouldn’t save it all for when I may not be able to do what I love???

I’m told that sero negative versions are usually milder but either way I can tell its going to impact my abilities in some way. Quite scary. I feel like a rattlesnake trying to wiggle my way out of this box.

I’m not someone who ever takes medications and as a rider I’ve always felt I had a high pain tolerance. Those two things have changed already.

[VCT]

Checking back in.

Still doing pretty good here. Still on Methotrexate, Daypro, Flexeril, and occasionally tramadol. Doc tried adding Plaquinel but it made me wicked sick. So just staying on the same meds for now. Have my next appointment in a week or so.

Been riding all summer, 2-4 horses per day. Worse thing is dismounting - hurts my feet. Competed a lot this summer - eventing. Pretty sure I won a series award with my younger horse for his division and moved up (finally) to BN with my older, but quirky, horse. It’s been a good year!

As far as tack that I’ve found that helps - the WIDE TRACK carbon fiber stirrups make a TON of difference for me. I just have the inexpensive non-flex ones, but they are a life saver. Regular stirrups feel like they are going to break my feet in half or something. The wider tred really makes a crazy amount of difference. Mountain horse or Ariat boots with the really good footbeds are a must. The thickest rubber reins available also make things much easier for my hands.

I’m not planning on quitting or easing up. I work and move all day around my farm and I credit that with contributing to my well being. Motion is the lotion and all that. I’ll modify things as much as I need to but I’m not giving up.

[equisusan]

[QUOTE=VCT;7219552]
Been riding all summer, 2-4 horses per day. Worse thing is dismounting - hurts my feet. Competed a lot this summer - eventing. Pretty sure I won a series award with my younger horse for his division and moved up (finally) to BN with my older, but quirky, horse. It’s been a good year!

As far as tack that I’ve found that helps - the WIDE TRACK carbon fiber stirrups make a TON of difference for me. I just have the inexpensive non-flex ones, but they are a life saver. Regular stirrups feel like they are going to break my feet in half or something. The wider tred really makes a crazy amount of difference. Mountain horse or Ariat boots with the really good footbeds are a must. The thickest rubber reins available also make things much easier for my hands.

I’m not planning on quitting or easing up. I work and move all day around my farm and I credit that with contributing to my well being. Motion is the lotion and all that. I’ll modify things as much as I need to but I’m not giving up.[/QUOTE]

Thanks VCT. That gave me the hope I was looking for. I got a pair of the orthaheel inserts for my paddock boots and they’ve been great. I also got a pair of their sneakers for running around. Stopped my foot pain. If my feet act up again I’ll try the wide track stirrups. Unfortunately I show in the hunters so no rubber reins for me but I suppose I could ride in them at home. Wearing gloves helps me a lot.

[aqhadreamer]

An update from me, I ended up showing all summer, doing the all-around events (everything from Showmanship to English to Western) for the first time since I was diagnosed. I ended up Reserve Champion in the Equitation/Horsemanship at our county fair in August. One of the 16 year old kids beat me I did show for 3 days for several classes all day and I survived!!

Over the past two months I’ve been starting a coming 3 year old. Got her used to wearing a saddle, lunging with tack on and ground driving. She has carried the trainer around on her back a couple of times now, just on the lead line, and 2 weeks ago I got to get on her for 5 minutes as I was led around. It was very exciting as I hadn’t ridden a young green horse like that since well before I found out I had RA.

Going (processed) sugar free and as free from Gluten as possible has really helped me. I’ve actually found that lately if I have a bunch of sugar/pop on the weekend I almost get a hangover when I try to stop on Monday.

I did have the flex stirrups on my english saddle and felt like they helped my knees, but I recently went back to a plain old heavy set of stubbin irons and the difference in my lower leg stability was amazing. I would like a set of the comfort grip pads though.

[TeeJaysRider]

Checking in also. I too have found dietary changes have helped. I’m on the 3rd week of a 30-day Paleo challenge (no grains, no legumes, no dairy, no refined sugar), which I’ve been about 80% loyal to, and I definitely have more energy. Still having some flare-ups, but in general I’m also more comfortable.

I found my back bothers me less if I ride regularly, so right now I aim for 4-5 days per week. I also wear Ariats for the comfort factor. Haven’t switched to rubber reins yet, but I think I’ll try that too!

[VCT]

For those of you who show in Hunters - Laced reins that have rubber in the inside only! Shazam!
http://www.doversaddlery.com/circuit-rubber-lined-lace-rein/p/X1-03165/?eid=X18A00U1000&utm_source=froogle&utm_medium=CSE&utm_campaign=MerchantAdv&zmam=1460880&zmas=1&zmac=114&zmap=0003165000540X1-03165&gclid=CJ684KnxnroCFQik4Aod21IAUw

[VCT]

Also I really really encourage anyone with foot or knee pain to try these:
http://www.adamshorsesupplies.com/Equi-Wing-Wide-Track-Stirrup-Irons-P3804.aspx?gclid=CJjEjPzxnroCFWpk7Aod8SgAPg

You can swap the cheese graters out for black treads that come with them. I have bad knees, arthritis in one ankle from a talus fracture, and the RA is playing havoc with my ball of foot/toe joints. These are better than ANYTHING else I have tried and I have tried just about everything - flex stirrups, cushion pads, etc. I like the cheese graters cuz they stay put with less pressure against them.

[RMJacobs]

Wow, it is great to see so many folks with RA living their dreams! I’ve always believed in pushing the envelope, and you guys bear that out. Rock on!

Rebecca

[tuttifruitti]

Just a quick note…I had read this post yesterday and it dawned on me that no one had mentioned Folic Acid and the energy it gives you while taking methotrexate. When I was diagnosed with psoriatic arthritis(RA cousin) at Duke 2 yrs. ago, the rheumatolgist prescribed folic acid(3 mg) a day to give energy and prevent hair loss. It has surely helped me as I only have a few days a week when I’m zapped in the afternoon. I was on oral metho for 2 yrs. but just started on injections this summer - not nauseous as much as I was with pills.
I truly FEEL for all you young people with RA but I think the early diagnosis is so key to delaying RA effects. Best wishes.

[equisusan]

Well after experiencing 9 months of excruciating pain… Hardly being able to ride on many days… Having to stop working… And taking prednisone and immune suppressors for months and months I don’t have this sero negative inflammatory arthritis. I have carpal tunnel. My doctors including the rheumatologist kept telling me I didn’t have carpal tunnel because I didn’t feel tingling in my fingers with their little in office test. After weaning myself off prednisone and researching everything myself because I NEVER accepted I had this thing they diagnosed me with. I read more and more about carpal tunnel and finally slept in wrist splints one night to find that I could move my fingers easily without pain all night. I had not been able to do this for months. I am so happy but very frustrated with the rheumatologist who clearly didn’t try hard enough. Now I’ll be seeing the appropriate doctors about whether I need surgery or not. Thank you for all your support on this thread as I struggled with it. Question everything and research things yourself when they don’t seem right.

[downen]

I’m so happy you finally got your diagnosis! I feel your pain… back in 2008 I was struggling with horrible symptoms… edema, weakness, hair falling out. My doctors kept telling me my labs were in range so I was “fine.” I broke down and cried when my rheumatologist told me I was just getting old (I was 48 at the time) and then he LAUGHED at me and said, “It’s not like you have CANCER.”

A few months later after much internet research and finding a new doctor who would run the tests I requested, I received my diagnosis of Addison’s disease and slowly began to get my life back.

I don’t think I will ever trust a doctor again. Question everything is absolutely the truth.

I wish you the best!

[grayarabpony]

[QUOTE=equisusan;7355057]
Well after experiencing 9 months of excruciating pain… Hardly being able to ride on many days… Having to stop working… And taking prednisone and immune suppressors for months and months I don’t have this sero negative inflammatory arthritis. I have carpal tunnel. My doctors including the rheumatologist kept telling me I didn’t have carpal tunnel because I didn’t feel tingling in my fingers with their little in office test. After weaning myself off prednisone and researching everything myself because I NEVER accepted I had this thing they diagnosed me with. I read more and more about carpal tunnel and finally slept in wrist splints one night to find that I could move my fingers easily without pain all night. I had not been able to do this for months. I am so happy but very frustrated with the rheumatologist who clearly didn’t try hard enough. Now I’ll be seeing the appropriate doctors about whether I need surgery or not. Thank you for all your support on this thread as I struggled with it. Question everything and research things yourself when they don’t seem right.[/QUOTE]

Oh wow. :eek: I’m sorry you didn’t get the appropriate treatment right away. The proper diagnosis for carpal tunnel involves a test using electrical shocks to test the nerves, as you probably know by now. I have carpal tunnel and had that test done to get the clear for the hand specialists to inject my wrists. I often use the wrist splints at night too and they help a lot.

[equisusan]

Thank you downen and grayarabpony. How is your health now downen?

The only test they did for carpal tunnel was one where you hold your elbows out and put your knuckles together and let them know if you have tingling in your fingers. I didn’t. I think they also didn’t take it seriously because it effects all my fingers except my thumbs on both hands equally. I am getting scheduled for the EMG. Did you have surgery or just the injections grayarabpony?

[Claudius]

I was diagnosed with RA in 1988. I was in my forties and having a very stressful time with my youngest son. I went a different route…no prescription drugs. I did everything else. Hot tub so that I could sleep at night. Every topical there was for my swollen joints and shins. I always rode, though less well much of the time. I lost as much weight as I could. I went gluten free and sugar free for the most part. I used herbal remedies.
But perhaps the oddest thing I did was visualization. I would lie in bed at night and visualize the RA as a lion in a cage. I would watch it walk/slither into the cage where I stood with a whip and a chair. I never moved until it moved in my direction menacingly. Then I would swing my whip and poke at it with my chair as I had seen in the circus. I was in control. I never let it get near me. I would fall asleep with it slithering back into its smaller enclosure. Night after night, week after week, month after month.
When a close friend called and said he had been diagnosed with RA I told him of my experience with the visualization. He went the Doctor route and the surpression of his immune system led to his demise from what started out as a cold.
I believe this helped me to feel empowered. RA can paint you in to a corner if you let it. Whenever “it” said, “YOU can’t do that…you can’t bend your knees that way…you can’t you can’t you can’t…” I would visualize the cage and I would whip it into a corner and think, “I CAN.”

[downen]

[QUOTE=equisusan;7355182]
How is your health now downen?[/QUOTE]

Thank you for asking, Equisan! As my doctor likes to say, I’m in pretty good shape for the shape I’m in! My recovery involved a multi-year process of tweaking my thyroid medications along with my Hydrocortisone that I take for the Addisons. In general, I feel pretty decent. However, I am very careful not to overdo. Sleep is very important to me, and I make sure I get all that I can. I have two kids, 14 and 16, so they are pretty self-sufficient. I care for my three horses and pony at home, but my husband has been stepping up and doing more and more as I get weaker each year. I still ride, but only in good weather and no more than two times a week or so. I also groom for my daughter at her occasional open shows which is tiring, but I wouldn’t trade it for the world.

So life is good, really. It took feeling like I was going to die to really give me an appreciation for life. Now I slow down, don’t sweat the tough stuff, and really appreciate all that I have.

I wish the same for you… the fact that you took control of your health care bodes well for the future! Keep us posted on your progress.

[grayarabpony]

I had the injections, 18 months ago. They have helped a lot but were not curative. Celebrex helps too but stuff is so darned expensive!

[catzndogz22]

I’m a fellow RA sufferer and thought I’d throw in my two cents worth. I was diagnosed in the spring of 2002. I’ve been on 1500 mg of Sulfasalazine (Azulfadine) 2x per day since the initial diagnosis. We added plaquenil 2x per day a few years ago. I also take a Naprosyn every night - except when everything’s really really good, then I can skip it. My RA has been very well controlled, but if I do have a more severe flare-up, I add prednisone and stop the Naprosyn. The two together are very bad for the liver. I’ll do 10 mg of prednisone for a day or two and then reduce it to 5 mg per day until my symptoms are under control, at which time I taper back down to nothing as quickly as possible. I really hate the prednisone, but it does seem to be a miracle cure to get things under control.

I find my RA to be triggered by stress more than weather. Wheat beer definitely makes my joints hurt, which is a bummer because I really like wheat beer. I also find that red wine can make my wrists a little ouchy. Sometimes regular beer does as well. Tequila is just fine! I can’t say that I’ve noticed any specific food triggers. I do find that exercise helps.

I’ve been lucky that my RA has been sufficiently controlled that it has never interfered with my riding, or anything else, for that matter. My rheumatologist is also a dressage rider, so when I go in for my exams, we chat horses while she checks my joints.

[equisusan]

[QUOTE=downen;7355583]
It took feeling like I was going to die to really give me an appreciation for life. Now I slow down, don’t sweat the tough stuff, and really appreciate all that I have.

I wish the same for you… the fact that you took control of your health care bodes well for the future! Keep us posted on your progress. :)[/QUOTE]

I hope for your continued happiness. What you say really are the cornerstones of living. As soon as ones health is threatened all becomes quite clear doesn’t it? Very best wishes to you.

[equisusan]

[QUOTE=grayarabpony;7355698]
I had the injections, 18 months ago. They have helped a lot but were not curative. Celebrex helps too but stuff is so darned expensive![/QUOTE]

Did you consider the release surgery at all or were you not a candidate for that? I learn more about my next steps on Friday. Who knew I could be so thrilled just to be able to wiggle my fingers in the middle of the night? I have some Celebrex and Voltaren to try.