Tackling Rheumatoid Arthritis

[RMJacobs]

fxhtr:

I find driving to be a lot easier than riding. Once I’m done grooming, I can harness and hitch in about ten minutes, about the same amount of time it takes me to saddle and bridle. My cart is light and I can wheel it around easily. My harness is on hooks against the wall in my tack room, which is right near my saddling/harnessing area, and my cart is in the carport which is also very close to where I harness. It also helps that I currently drive a 13.2 HH pony (used to drive a 12.2 HH pony, but sadly he had to be put down in October).

Unhitching and unharnessing is just as quick. And as for care of my cart and harness, it’s a breeze. I might occasionally wipe the cart down; I think it’s been about a year since I did it. It stays pretty clean in the carport with a barbeque cover over the seat (fits pretty well and keeps bird crap off the seat). When my tires get muddy, I just keep driving on them until the mud wears off (usually just going down the driveway will do it). Occasionally I will get the cart really filthy driving in slush, but it can just be hosed off if it is really gross.

And harness care–that’s about five minutes after each drive. I have a wonderful synthetic harness that feels like leather. I wipe it down with a damp paper towel after each drive, and that’s all the care it needs. It is so much easier than cleaning and oiling a leather harness like I used to do for my smaller pony.

The absolute best part of driving ponies is that their size cuts down on how often I need to walk around them while harnessing. I can reach over Salt’s back from the near side to do the far side shaft. Then it’s just a matter of a couple of quick attachments (three per side) and we’re ready to drive off.

The total cost of each cart and harness (I have two of each, both bought new) was less than a lot of people’s saddles. I don’t have anything fancy; nothing is show quality but that’s fine because I don’t show.

Now, if you’re talking tack for showing, that’s a whole different price range! Makes me glad that we just rocket around our little horse community and don’t need anything fancy.

Rebecca

[Hilltpr]

I guess around here Ive only seen big “rigs”; even a 2 seater with huge wheels or the kind where there is a navigator behind, i hear is quite spendy. I took a ride years ago on a driving day event with the president of the club. I have no idea of the type of carriage i was sitting in, but going down the sandy paths, the jerkiness of the ride kept slapping my lower back - in fact, i told her, great thing i dont have RA there just yet!

Maybe u get used to it, but i thought- glad i wasnt born in the 1800s and had to ride carriages all day! But get this, ive also tried sidesaddle for a couple of months! Ladies back in the day were not allowed to ride astride. My girlfriend still foxhunts aside- she is amazing. One ss judge told me tho over the years her back/spine needed surgery bc of the twisting…& i can understand why.

I also have trouble holding double reins in my hands, hence never use a pelham for hunting or hacking. somedays, my ra prevents all my fingers to close completely around the reins. Does that happen to you?

[RMJacobs]

I have an easy entry cart. Some people look down on them (both literally and figuratively) but I love my carts. My head when I’m sitting in the cart is at the same height as if I’m standing, so it’s easy to get in and out. The carts have bike tires (especially frowned on by driving purists) and suspension. I drive over rough ground most of the time and it doesn’t bother me. But if I go out with my neighbor on the road in her Meadowbrook, I feel shaken to bits. And the times I’ve ridden in a stagecoach–I don’t know how people could stand it! I took a stagecoach ride on pavement once and still felt broken afterwards. And on rough ground–oh, my! My cart is much more comfortable.

As for hand problems, I’m right there with you. My hands suck. If I’m having a really bad day I’ll wear wrist splints to help support my hands. But both my ponies have/had very soft mouths and my crappy hands are usually not a problem. It would be different if I were properly driving a draft horse–they can feel like you’re trying to hold freight train in your hands. If you look at the people who compete with the big hitches, they have amazing muscles in their hands, forearms and shoulders. I don’t, although driving has certainly helped my hand strength and flexibility.

I also have my horses trained to verbal commands, and can drive with little contact if I need to. My style horrifies driving purists, but it works for me–I run the lines between my thumb and index finger in each hand and loop the byte (excess reins) in my pinky if it has any feeling that day, or through whatever fingers work if my ulnar nerve entrapment is causing a lot of problems.

I use fairly broad lines–they just feel really good in my hands, but because they are synthetic, they aren’t super heavy.

I also don’t hold my whip all the time, which is bad form, but works for me. Again the verbal commands take the place of both rein and whip cues. It would never work if I showed but since I don’t, I just do what works for me.

I just find it’s so much easier to make disability accommodations driving rather than riding. Of course, the horse makes a huge difference. When I drove Crackers, my dearly departed Hackney, I would come home pretty wrung out because he was very hot and spooked at everything. When I drive Salt, my Welsh, I come home relaxed because he is very mellow in harness. Which is pretty odd because he was the hottest thing on four legs under saddle–go figure! He just likes to drive, and hates to be ridden for some reason. And he will let you know his likes and dislikes every minute. He is quite a character, and way too smart for his own good.

Rebecca

[myvanya]

I also have RA. I was diagnosed I guess three years ago but have had symptoms for at least 6. For a while I could barely even sit on my old Morgan. Thankfully I am back to riding, to some extent out of sheer force of will because after having on treatment be briefly succesful (enbrel and MTX combined) I have yet to find anything that works aside from a drug I had an anaphalctic reaction to on the second dose. So I am on Remicade, MTX, supposed to be doing Pred but refuse (it makes me a basketcase and causes me horrible problems…so I think though it reduces pain it causes more problems than it solves), vicodin when I can’t stand it…lots of tylenol. I also am having a bunch of other side issues that leave me doubled over in pain most of the time that the docs are trying to figure out (major GI pain with no cause they can find).

Lots of fatigue for sure. I recently concluded that really most of life comes down to my determination to do things. Some things I am just physically not able to do or need modifications to do, but so much of RA is pain and fatigue and I have to decide if I will keep living or if I will let it prevail. So even though often I am exhausted and miserable, I ride, even though I can barely walk. I still run when I can possibly tolerate the pain, because I want to be fit. I am thankful though because my husband tries to be supportive. A lot of people in my life don’t get it, and that is often hard to deal with, but you just keep going.

RAwarrior is a great resource. There is a lot of support all over the internet and it can be helpful just to see how other people survive. Kelly over at RAwarrior is defintiely onto something in that raising awareness and having an active online community is not only helpful for hopefully someday finding a cure but also helpful for providing support.

Lots of jingles for everyone…hoping for more good days and good rest so we have some energy to love our horses :yes:

[Hilltpr]

MyVanya - so sorry to hear what you’ve been thru; I had a terrible anaphalactic reaction to Remicade - after they loaded me, 2d visit i didnt feel too well - they told me come to the next visit with benadryl in my system b4 I started the drip…did that however I think it was the 3rd visit…immediately turned beet red, couldnt breathe to tell then what was happening, couldnt stand up to egt to the bathrm, thought i was loosing my bowels hoooked up to the iv- - lovely. What made it worse was the Dr. stepped out of the ofc! I could see in the nurses faces i was in trouble. Luckily I made it thru; was wiped out for 72 hrs. Switched drs…had to suffer many months to clear the system so to speak and my current Dr. found a dosage of Humira and MTX; thats was 4 yrs ago i think. Now the RA is raising its ugly head again so im back to 4 MTX once a week and every other week Humira, plus vicodin as needed, tylenol pm for evenings.

WOw u r still running; i had to give that up in my mid thirties…the balls of my feet show the wear and tear and the bunions on the side have fun in my field boots. Now my dress foxhtg boots always have a zipper and foot insert in them. Ive come to the conclusion most friends dont care until they get old enough and have something hit them, then they seem to have empathy. Most dont get it, unless they are hit with some disease or ailment - maybe its then they can see how fragile and short life really is.I thank goodness everyday I dont have something else added to this, but i hate feeling like im in my 20s in my brain and my body can no longer do those kinds of things. I just came up from the barn, rehabbing my girl and checking on my boy. The heat really is oppressive; between mucking, watering, hand grazing, it takes me quite a bit of time. I sometimes wonder where did the day go! Ill check in with kelly on rawarrior tonight…time for a cat nap, fluids and then back to the barn! I only have one daughter, married and out-of-state, but even b4 then, she never understood. Now that she is a mom and has terrible psoriasis & in a stressful job, I think she is beginning to see things differrently. Ive always told her to be careful because it can be genetic- but at 28, she is slow to learn and take care of her body. You are an inspiration in mind and spirit. s

[2BayPonies]

Hey R - I’ve been lurking here for years, finally decided to make a profile

How are those cranky knees?

[RMJacobs]

fxhtr, I had an extreme reaction to Remicade too. I still shudder to think about it, and I have a freakishly high pain tolerance. A couple of hours after my last two infusions, I started getting muscle spasms that began in my toes and worked their way up my legs and throughout my body. I’ve never run into anyone else who had this reaction. I came very close to going to the ER the second time but didn’t go because I couldn’t imagine what they would do for me. I can’t tolerate Benadryl or steroids, so what’s left? So I toughed it out and never had another infusion.

I’m a little concerned about your daughter having psoriasis. I’m hoping you know about psoriatic arthritis? Since it’s an autoimmune disease and the propensity for those disorders may be hereditary, I think she should be on the lookout for further symptoms. I hope it’s just plain old psoriasis that she is dealing with.

I live in fear of my daughter following in my autoimmune footsteps. She is 18 and I’ve seen a few things that have me mildly concerned. I just keep an eye on her and make sure she’s aware of symptoms that would indicate a problem. Had I known that I had RA, I might have decided against having kids at all. There are a lot of autoimmune diseases in my family, but before I got to share the joy I wasn’t really aware of the hereditary issues.

It’s too bad we all have this stuff in common, but at least we also share some positive things, such as love of horses!

Rebecca

[Hilltpr]

Rebecca - me too about not having kids ; had i known, and at least i only went & had one! I grew up hearing grandma had arthritis and thru hs never paid much attention to it bc kids on the hs teams were getting arthritis in their knees etc but I left home at 19 and never saw her again (bc i married and went to Europe) and after she died heard she had “rheumatism” - she was born in 1907 i think.

then when i was diagnosed, (it finally showed in my blood after years of them telling me i had carpal tunnel bc i worked long hrs on a computer and yet couldnt turn the key to start the car nor open a those heavy lever handled doors) a couple of years after me, Dad was diagnosed with it (grandmas son), but he was already in his 70s.

im going to call my daughter today bc i think all these years she has only been going to a dermatologist. I hate the fact some Dr.s dismiss it bc your sed rate is normal & doesnt show in ur blood per se. I am flaring so badly in my hands and wrists this am; too much work at the barn yesterday and had to move the round pen to a new location all by myself. I started yesterday at noon going off most sugar, (i.e. chocolate, sweetners, desserts, snacks),had severe headaches, only decaf coffee and sugar will only be in the form of fruit/carrots! Im even squirting the cold pressed flax into the back of my mouth twice a day. Within one day I see the bloatedness of my stomach gone. I hope I feel MUCH better by Sunday. If I can find time to get away, am going to the herbal fitness store today to buy a good multi (these one a day womens over 50 OMG stink and taste nasty u the minute u put them in your mouth!) and liquid minerals/vitamins. I want to see what they say based on my age and health. I teach zumba and took a 6-8 week hiatus bc of caring for my mare, so have to get back in shape!

ooooooooh my gosh, sounds like that Remicade did the same thing to me when I went RED; tingling yet numbness over my whole body! the girl in the chair next to me said she had had that too but “not to worry” bc they were dripping her too fast; she said her entire drip those days took her 4 hrs! i thank god everyday we live in a time of all this technology and HUmira. The only thing I dont like is we have to order it straight from Washington state and it has to be delivered to me fresh via FedEx. I wish I could pick it up from my local Walgreens and save all this waste of money shipping and freight. My ins stinks and have to pay $50 a box for the pens.

[myvanya]

Actually RA is one of the reasons my DH and I are not having kids. Certainly not the only one (I never really wanted kids and neither did he) but his Dad has RA and I have RA.

I take claritin and pepcid constantly to prevent drug reactions and before my Remicade infusions they also give me steroids to prevent reaction. At this point my doc isn’t messing around. I just wish they Remicade was more effective. We are hoping I can get in a late stage drug trial eventually but so far all the ones my doc is involved with are still in early trials so I would be at risk for getting placebo. He also is going to have to work hard to get me in with my history of drug failures as I have been through Enbrel, Humira, Orencia, and a couple others now.

As far as running it hurts a lot- I get hard swollen bumps on the bottom of my feet a lot even when I don’t run. They come and go and podiatrist said they are from the RA. They feel like I am walking on a rock basically. Running on them isn’t fun but it doesn’t damage anything. My philosophy is if I am not damaging anything I will try to push through.

I know many of my barn friends won’t get it-but sometimes I think they start to get flashes…I have a tendency to kind of waddle when my knees and feet and hips and low back are bad and some have seen that more than a few times now when I am grooming at shows. I bet it looks pretty funny :lol:

One thing I have done is I use rope reins now. They are fatter and softer so I can hold them as grip for me, especially over long periods is hard. I also use plastic cups at home because they are lighter. I can’t wait until our house finally sells though so we can move somewhere without stairs. Stairs are my nemesis :lol:

I try to focus on my keeping up with my “new” (started riding him in 2009 right around when I was diagnosed) horse’s training. We do dressage and I haven’t given up on jumpers for him. We are getting pretty solid at 1st level- I am so proud of him The horses really do help keep us sane and motivated!

[Hilltpr]

I am so proud of u!!! 1st Level in Dressage…i piddled in the past with training level tests; we have alot of big trainers in my town, i quickly saw how much WORK dressage is, not only for the animal but u - legs, hands, & Im lazy about practicing something so detailed, so I only seem to enjoy dressage schooling now and then…it really knackers me. Foxhunting on the other hand, the sights, smells, fall-winter colours, comaderie, squeal of hounds, that gets your adrenaline going, and a good run does wonders for my heart and mind. Its like a roller coaster ride, u scream thru and when its over (at a check) u cant wait to start moving and do it again. Of course we always have the hunt breakfasts afterwards, where long tales get longer and grand stories are told! We meet so many people from all walks of life, foxhtrs that come in and visit not only during hunt week every Jan. I must say u probably do waaay more work than I do riding. We have a 50acre farm and want to downsize too now that I only have 2 horses but in this market, who knows when we will put the farm up for sale. I hope within this decade since we just turned bt 50. I used to ride the tractor more than the horses, when I had 6 horses! And dragging my dressage ring, bc the deer like to practice it daily but at night!
Tell me how was the Orencia, is that a drip too? Theres a new RA drug out, I forgot the name; I keep thinking Ill prob have to change at sometime bc ur body builds up antibodies to it. My daughter works for IVP Care in Frisco, TX; they deal with the drugs. She says the Humira is best bc it is made from human cells where the Enbrel is made from rat cells. I thought pig cells were closest to human bc thats what they use to use for heart graphs? oh well. I havent met any men who got RA under 40 - so far- but im sure they are out there. You are blessed it didnt hit your husband. I just found out about the Opus plan (helps pay for Humira) and want to look into it. Is your Humira shipped to you monthly? or do u get it locally?

[myvanya]

I used to think I could never do dressage and it was boring…little did I know! I love it! It fits well with my personality I guess. It has its own special kind of thrill. I love jumping and the few times I have gotten to hunt I loved it too but I think my current horse would be a handful out on the hunt and my older horse is 26 so I am over protective of him. I really do want to get back in the jumper arena someday though.
I definintely got my RA under 40…I still have a ways to go :lol: I was right on th edge between ra and jra actually.

As far as drugs…when I was on humira it was shipped to me. I think it depends on how your insurance prefers to work though. The orencia is an IV but it is a short one and it seems to be tolerated well- I never had any side effects or reactions. Enbrel was great but some people develop immunity to it. Usually it takes a while- unfortunately for me my body is really fabulous at that so I developed immunity in 6 months. Humira is excellent and many people respond very well to it. It seems very versatile. I never did very well on it, but I am a terrible measuring stick for that. Kineret and Actemra are both new. I seemed to respond fabulously to Actemra until I had an anaphalactic reaction to it. Seems I am allergic to it. However, I don’t want anyone to avoid it based on my experience. Reactions like mine are very rare. (I think there have been less than 5 since trials on it began- including mine) It is also a humanized drug and is IL-6 targeted so depending on the person can be a Godsend. Like everything else- it depends. Kineret I am less familiar with. I know I skipped it because it was unlikely to work for me but as always its good to have options. I keep hoping the Remicade will work for me soon…its not looking too good but maybe higher frequency or dose. My doc and I keep trying.

[My2cents]

have any of you tried this site? www.roadback.org it’s an interesting take on antibiotic therapies.

[RMJacobs]

foxhtr, the weird thing is that my Remicade reaction happened many hours after my infusion. Hope to never have something like that happen again.

I changed jobs due to a change in insurance coverage for Humira. My company’s plan went from a $60 copay for a 90 day supply of Humira to a huge deductible and 20% copay. It was going to cost me over $10,000 a year to stay on Humira. I got lucky and found a job pretty quickly with better prescription coverage–for the last four years it’s been $40 copays for a 90 day supply. I have to buy it mail order but I don’t mind when I get it 90 days worth at a time. The only problem was when my refrigerator died and I didn’t know it. I had a ton of it in the fridge that went bad.

My2cents, I did antibiotic therapy twice. I quit the first time due to outrageous yeast infections, but then learned to control them with acidophilus, and did it successfully for two years (which is the usual limit for it to work according to my rheumy). Then I went into a major flare that I couldn’t get out of until I started Humira–haven’t had anywhere near the pain since then. Unfortunately the antibiotics only helped with the pain and not with the exhaustion. Humira helps a ton on both for me.

Rebecca

[Jay-N-Jete]

Coming in late, but I was diagnosed with RA in my early 20s - now 12 years in.

Did MTX therapy for 3 years, then added Enbrel.
Did SUPER on Enbrel until I seemed to plateau about 2hrs in.

BUT - the combination of MTX and Enbrel got me to a point where I could ride again! (Didn’t ride for the first 3 years - could barely live my life)

Humira didn’t do much for me.

Got a pacemaker b/c RA put a nodule in my natural pacemaker and heart stopped = fainting and crashing with my just started youngster.

Once I got over the flare from the surgeries, I did pretty well for 2 years, then gradually got worse and worse.

Back on MTX - highest does possible for the last 2.5yrs.
New rheumy is reluctant to give me any of the biologics b/c I’m still in my “child bearing years.”

Looking at antibiotic therapy - rheumy started me on doxy 100mg last week.

Haven’t ridden in almost 2 years now, but just started my TB homebred - 3 rides in so far, just walk and trot, but it’s a start!!

Interestingly, I went to a reproductive specialist and she researched to find that my children would only be 2-3% more likely to get RA than anyone else in the world.

Still not sure I’ll have kids, though…
My paternal grandmother had RA and sister has JRA from age 3.

As for the horses - I’ve decided I just want to RIDE!
So, I’m in the process of looking for a “been there, done that” dressage horse for me. I like hot, but don’t need anything jumping out from under me anymore.
Need LIGHT in the hand and narrow…so still hunting!

[Hilltpr]

Jay - bravo for you pushing thru it; big kudos to getting back in the saddle and doing as much as u can.
BTW what is the max dose of MTX Im on the 7.5mg btl, then I heard theres a 10mg btl and then I heard there are injectables of different strengths.

When u plateaued on Enbrel was it pain& swelling was constant? I wonder about when my Humira wont work anymore. How often are u slated for the doxy? Do u give it to yourself? I wish u much success with that. I cant imagine going thru the process of new drugs, its really a pain in the ##$! I was lucky enough all we added was Humira to the MTX and I was functional. Bad flaring and tiredness for the past 3 days tho, im taking afternoon 3 hrs “naps”. I think its a combo of the heat and rehabing my mare…just handwalking her even in shade midday, early am or pm, is wearing me out.

Have u heard anything about these drugs ruining our hearts? Ive always heard it can wear on the lungs and liver.

[RMJacobs]

I think the maximum mtx dose is 25 mg/week. I’m on the injected equivalent of 20 mg/week.

Rebecca

[Xfactor]

Has anyone looked into Dr. Mercola’s RA protocol?

This summer has been a deflating one at best ( RA has decided to visit my spine) and I am just sick to death of ingesting, injecting and infusing.

Mind you I am not tossing current therapy aside (yet) but I just ordered a ton of stuff thru Dr Mercola. Worse case, I’ll be healthier otherwise. =)

Some folks think he is a nutcase; I was one of them!

But I did see him on Dr Oz (ok don’t gag) and he, tho a bit rabid, did make a great deal of sense.

[Hilltpr]

XFactor: How did u learn RA has set into your spine; got me kinda worried; symptoms; prolonged pains??? My Dr hasnt taken xrays on me in years. All Ive had xrayed are my feet and hands years ago.

I am so stiff neck, head occipitals, shoulders, chiro, acupuncturist say I hard as a brick…I wonder now???

[Xfactor]

I also hadn’t had updated X-Rays but the pain has been pretty unbearable since about April. I had a major vasculitis blow up in May and all hell broke loose.
So…rheumy decided to do a thorough once-over with new bone scans, x-rays, mega labs etc.

My gift for underexaggeration makes me say I was “bummed” to hear the news. My cervical spine is not my issue, it’s my lower T spine and L and into hips. Hands, knees, affected but not my main problems at this time.
More systemic issues than anything; until this.

The good part is that she did say whatever it is I am “doing” for my overall physical fitness is great. Well, it’s farm chores and riding as I can, even tho I am certainly not as supple as I’d like to be.

She asked if I wanted an RX for physical therapy; I asked if I could get riding lessons paid for…lol
Not so much.

Short answer is, the pain was just too too much to go unchecked. I am pretty stoic, a total type A, and have an uber high pain tolerance (3 kids, not even a tylenol) so I knew that sort of pain could NOT be a good thing. Pays to listen to the body when it speaks…or yells.

Good luck.

[Xfactor]

Oh and i wanted to add, the odds of having it in the spine is low…so there is a very good chance that is not your case, so positive thinking!!!

My rheumy was pretty sure it was NOT going to be an issue as odds-wise it’d be pretty unlikely. So here’s hoping the odds are on your side!!!