I'm interested to know how many people started off so severe and made a comeback. Did you stay strong or did it come back and take you out at the knees again?
Always enjoyed good health. Felt 30 was 47. Went to bed healthy & strong. 11/7/07
Woke up with all joints aching- thought I must have the flu. No fever, no upper respiratory problems. By day 3 joints hurt so much more went to my GP. Naproxen was prescribed.
The blood tests began...the pain became intolerable. She was able to secure an RD appt. for me even though there were 1 month waiting lists.
Got my dx about 3 weeks into this- not too bad from what I hear. Prednisone did nothing. MTX nothing. Swelled up like Shrek- looked like my skin was going to burst and spew water. Had 12 hr. pain cycles from 11 PM til 11 AM- off the friggin chart pain and this RD didn't believe in giving narcotics. Didn't sleep at all for 2 weeks. Got so weak I couldn't sit up or stand unassisted. Felt like my feet and ankles were broken- only walked with help to the bathroom. Hands were so painful and weak could do nothing for myself.
I was absolutely terrified. I thought I was never going to get better. I wanted to die. On top of feeling so sick I was worried about the family finances as I contribute more and help 2 kids in college, have 1 starting in a couple years and help out my mom. My company employs less than 50 people so I now had no medical insurance because I was out on leave.
Husband told off RD. She got mad and called my GP. Then came back in and said GP wants to send you for a CT with contrast. You may not be getting better because you have an underlying malignancy. Gave me oxycontin FINALLY! GP gave me Lunesta. Got some sleep and got a little better. CT Scan came back clean on Christmas Eve.
Had an appt. for a 2nd opinion Jan 4. Dr. increased prednisone to 40 mgs.- the very next day I was a new woman and I have been GREAT ever since! Love my new RD- communicates well, thorough exams. Went back to work 1/28 and haven't missed a day yet.
Will be down to 6 MGs prednisone come Thursday and still feeling GRRREAT! Still take MTX.
But...I have this fear that one morning I'm going to wake up and all my joints are going to be hurting......
I don't have one. Awww I bet your mom has one......I plan to come back to this post one day to share. Let's be optimisitc everyone, we will all have a happy ending story to share in the near futurewantobeRAfree, I was also miss health america, jogging a few times a week
walking just about everywhere. Working 60 hours a week and loving my life.
It all started in my feet, hurting so bad and moved real fast (within a month)
that my hands started hurting ,I could not even hold a pen without it hurting.
I woke up one day with every joint hurting that I could not even brush my
hair because my shoulders,elbows really everything was so bad.
I thought maybe if I walked more that I would feel better, I went for a long
walk and it started raining and I could not even run to a shelter, I stood
there and just cried.
By the time I made it home I drove to the Drs office and they get me in right
away and did the blood work.The Dr was real sure I had Ra because my
mother had it.He made an appt. with an Rd for the next week.
I went home and cried and cried thinking my life was over.
When I went to my Rd he was just so wonderful and reasuring that there
were so many options out there that were not when my mother got Ra.
I can't remember the exact spelling Salfusalizine was what he put me
on and it worked real good with 7 mg of predizone.Within a week I was
heading into a good place.
2 years later it quit working for me and we went to Enbrel with Arava.
that has been working real good for me. He switched me last fall to
Humira and Mtx I dumped the Mtx within a month went back to Arava and
still wanted back on Enbrel , he asked me to try it for 6 months of which I
did , I was so swollen and hurting That he agreed that it was not working
and put me back on Enbrel.
My knees and ankles are still a problem , I swell so much that people look
at my real fat parts on this skinny body.
I will do anything to be in a good place again. I think Orencia is next
11 years of wondering "what more can happen" .
This got kind of long didn't it?
I'll make a 10 year story short. Blew a disk in my lumbar back, awaiting surgery date when I was diagnosed with a severe onset of RA. I was bedridden, had surgery, still had to deal with RA post op. Nothing worked, saw several RDs. Finally put on 40 mg. of Pred. and tapered finally to 35 mg and stayed there for almost 5 years. Tried a multitude of dmards and biologics with only about a 50% decrease in symptoms, still on 35mg of Pred. Finally came off Remicade and went back on Humira with an increase in MXT and added Sulfasalzine. Have tapered off Pred. and am in CLINICAL REMISSION for the first time in 10 years.
I now can golf and hike. I planted a small garden yesterday and it's the first time in over 5 years that I've been able to garden. I have damage and complications but for the most part I'm better than I've been in years. Not all days are great but there are a lot more better days than bad ones. Remember there's always hope. Lindy
Very short....I was showing horses and playing rugby in college. I thought I just had a number of sprains and strains...sports injuries. Started skipping morning classes. I thought my cleats had shrunk cause I couldn't fit my feet in at practice. Went to ER with what I thought was a knee injury due to a game. Ended up getting referred to a RD.
It makes sense. I would have period during middle and high school where joints would swell. Dr. kept saying it was something inflammatory but nothing would show up.
I have been through Enbrel, Humira, Remicade and now Orencia. The first few were all great meds-they did their job for years. The Orencia is doing pretty good right now. I am hoping it will be effective for a while--at least until my little one starts school. I am pretty optomistic about RA. I had an extremely aggressive RD and was on Mtx. as soon as she got my x-rays back. I wanna say I was 19. Since then I have had 3 different RD's due to moves. I have had my current one for a number of years and he is awesome.
My biggest advice to any newbie is to find a dr. that you can work with. You are stuck with this illness so you need someone who you can deal with, and who can deal with you. There are people at my infusions who drive hours just to be a patient at the practice. And, don't hesitate to get second opinions. A good dr. will respect that. After all, it is your life.I was in pain during my teeneage years and had a swollen pinkie knuckle but nothing that I went to doctors for, I also suffered severe stomach pains that the doctor put down to exam stress, I can also remember looking back now that some mornings I just didnt want to get out of bed as I was exhausted but put it down to being young and burning the candle at both ends. Then things were ok and I lived very actively, horse riding, ice skating and scuba diving. I met and got got married to my husband, had 3 kids, felt really swollen in the knees and hands during pregnancy but not just pregnancy swelling. I was always tired and suffered with anemia but not much else and other than that I ws never sick, never even suffered with colds and flus. One day about 12 years or so ago I was walking and my shin bones felt they were going to pop out of my skin and my feet hurt really bad, by the following week i couldnt walk at all, I went to see my old g.p. who sent off bloods but said it was stress, the bloods came back and i was referred to a rheumy who diagnosed RA. I had xrays etc and they came back with severe erosions. I then got better, so much better that I thought they had made amistake so I stopped all my meds and thought I knew better. I then woke up one day and couldnt move at all, hubby called the emrgency doctors and I was wheelchair bound for 6 months as my RA came back with avengence, I was put on a variety of meds and since then it has been up and down. Now im waiting for a miracle.lolWow! These are some scarry stories! My heart goes out to all of you!! Seems like no one ever writes about "mild RA" - ya, there are a few of us reallllllllly lucky ones around. (Isnt it 2 out of 10 have a mild course of the disease?) I have constant joint achiness that is worse in the AM and comes back in the PM, better after I swim each day, and better in the middle of the day. I seldom swell (months or yrs apart) and when I do it is much milder than any of you are describing. I am taking only Celebrex 2 x day currently, but the dr threatens to add a DMARD, like pacquinil, but hasnt yet. Thinking back, there have been episodes for quite a few yrs. First, it was just my fingers and hands; then I had carpel tunnel in the wrists which required surgery; then feet , knees, elbows; and now my shoulder and hips are starting in. All of it always has been very symmetrical with infrequent, little or no swelling. I keep hoping he made a mistake that it is not RA, but he insists that I have it and that it's mild. I wrote in just so some of you will know that RA can have a different course than the sever type.
hi all i find it very interesting that the biologics are used straight away nowadays..
and the use of the older dmrds is dwindling fast.. i wonder if it is the same in the uk
Boney
Hi Boney, I was started on mild meds at first, sulphasalazine, avara arthrotec and gold injections, only after a few years was i put on MTX and then biologics..........My story is similar to Rebecca's. After several years of nagging painful joints that I easily blamed sports, one particular day the inability to move my shoulder without excrutiating pain sent me to urgent care. after a tendonitis dx and ibuprofen script, that same night my wrist swelled so badly that I went to the emergency room ( i thought i had a bloodclot or something). They ran some tests which showed a through the roof sed rate and sent me to an internist. He had it pegged as lupus or RA at the first visit. I was 22 at the time. My current rheumatologist beleives I had JRA due to the pattern of damage ( hindsight showing symtoms for at least 10 years before dx) not that it matters nowI was started off on asprin and sent to a rheumatlogist. Through the years I've been on just about everything with mixed results.
For the person who commented on the lack of mild cases...they're out there but those people don't tend to spend a lot of time on message boards. here is where you will see more serious cases and new cases
my ra came on fast.. whithin 4yrs near all my joints were ruined...
despite mtx and pred.. i have little visible inflamation now .
i hope whith new meds people have a better outcome whith
severe erosive disease..
Boney
Well so far it seems even half had a severe sudden onset and half had symptoms come on over years that got progressively worse. At the time of my dx the RD practice and my GP seemed to be perplexed about how sudden and severe my symptoms were. I think they told me that only happens in 10% of cases. I find this hard to believe given the number of people who have reported the same beginning.Mine didn't come on severe - or at least not when I read these stories. Started in my hands first (summer of 06) one side at a time every few weeks. In Oct 06, my feet started and I went up a shoe size and it hurt to walk most of the time. Around the same time, I'd get the shoulder freezing up - again not both, just one or the other. I actually thought my shoulder pain was from a new work-out program that I finally decided to start. By December, I figured something was wrong, so had some tests down and SED and RA were up, but just slightly, so was told to wait it out for 3 months and get re-tested. Shortly after that, both hands were swollen all the time and I had two episodes of extreme pain in my hands two weeks apart, so headed in while it was still painful and swollen and was sent to a RA and diagnosed in Jan/Feb 07. Didn't start meds until March as I was going on a cruise with my mom and wanted to enjoy it and not worry about any side effects. Haven't had any of those painful, painful episodes since being on meds - aches and pains (especially feet) but very lucky for the most part.
I always have had some swelling problems...especially in hands and feet. After marrying and having four children, a little back pain wasn't uncommon. One morning six years ago, shortly after moving to a new town, I woke up in extreme pain. Could barely walk. I had been walking up to 3 miles a day, and thought I had injured myself. GP did blood work, found a high ANA reading but a negative RF. He thought I had Lupus. RD said that a negative RF will often turn positive over time. He treated the flare up, but once it ended, he stopped the meds (Celebrex, Mobic, etc). The common thought at that time was to only treat the patient's symptoms during flare-ups. We now know that damage can be done to the joints even when there are no visible symptoms of pain, swelling, etc.
When another flare occured about 18 months ago, my new GP suggested a new RD, who did very indepth blood word.....RF had turned positive. X-rays revealed a few nodules in hands, degenerative back nodules/spurs. I tried MTX for a year, at increasing doses until I maxed out. It kept the disease under control, but my pain was still severe. Next, I tried Arava but to no positive effect. I just completed my fourth Ebrel injection...tremendous pain relief with this drug. Relief within first week. A few sides effects but nothing too serious...probably will subside with time. If my immune system can handle it, this may be the one for me.
The secret for anyone new to RA? Don't give up....hang in there. There are so many treatments available....keep trying them. I was very discouraged at various times, but my (new) RD has been so devoted to helping me...he has pushed me on and I really appreciate it. Remember, You're not alone!
My story is convoluted. No diagnosis for years although I had even had joint replacements.
1998 November- Right knee blew up like a football, hot, swollen, painful
1998 December- Arthroscopy- Ortho said I had OA Live with it!
1999 November- Left knee blew up like a football, hot, swollen, painful
1999 Saw a couple of Rheumy's and Orthos's no real diagnosis of anything else
1999 July- Partial Knee Reconstruction to relocate my kneecap where it should be
2000 April- another Arthroscopy
2001 July- Total Knee Replacement Right knee
2002 July- Total Knee Replacement Left knee
Throughout this time it was only the knees
Fast forward....
2005 July- swollen painful left wrist
2005 October- Finally saw a Rheumy who diagnosed RA....Sero Negative. MRI of wrist showed what looked like mashed potatoes instead of seperate bones.
She started me on MTX right away and Prednisolone.
Over the last couple of years things have slowed down but I still have pain and swelling. Have added in Arava for about the last 8 months. We are now talking about Enbrel or Humira but can't start til I get a couple of surgeries out of the way. I have had the first one, a Bursectomy on the left hip. In a couple of months I'll be having a spinal fusion at C4-5. That is from a ruptured disc.
I don't think I've ever really experienced the flu like symptoms that many have but I do suffer with the fatigue. Sometimes I get sweats for a few nights.
At the moment the left wrist is still the worst and the right wrist is very mildly affected. My thumbs are painful but the rest of my fingers work fine. My hip joints are OK although recently my right one has been causing a lot of groin pain, the left one with the busitis seems to be OK at the moment as far as the joint itself goes. My feet are up and down but I can usually walk OK.
In all it took 3 GP's, 3 Rheumy's and 5 Orthopedic Surgeons before I was finally diagnosed.
Life can suck at times, but in general I just get on with things and do what I can. My family has been very supportive and helpful. I still work 2 days one week and 3 the next. I will keep going as long as I can and keep enjoying life to the best of my ability.
One morning last summer I woke up and felt like I'd been hit by a bus. Everything hurt... my neck, my back, my feet, it even hurt to chew food. That gradually got better but then very specific joint pain set in... first in the wrists, then shoulders, fingers, knees, and standing on my feet was excruciating. Plus all I wanted to do was sleep. My kids were 2 and 1 at the time and I remember them running around while I could barely get off the couch. The final straw was when my husband and I went to see a movie one night. My knees hurt so bad after sitting for 2 hours, I limped out of the theatre like an 85-year-old lady, hanging onto his arm so I wouldn't fall down. Rx'ed within the next month and have been doing exceptionally well on Plaquenil alone. I'm very lucky to be responding so well with such a mild medication. Praying it stays that way.What strikes me is how many of us were extremely active at the time of onset, and time and again we write of the symptoms as something else.
I had been experiencing mild knee pain in October, and thought oh great my walking is catching up with me..OA. Then we went pumpkin picking and that night my right wrist and hand were completely swollen. I thought again that maybe middle age was catching up with me. I had to carry that huge pumpkin quite a distance, and I figured I sprained my wrist. Trust me I became the big joke around here.
Within the next month the wrist would come and go, my shoulder started hurting and froze, and my feet started to bother me. My GP was great, but nothing spectacular was happening so Motrin and "Off you go." Looking back I consistently had low grade fevers as well.
I kept thinking I was getting better until Thanksgiving. Even with days of rest my feet were killing me and I could barely get a shoe on in the morning. The final straw came the first week in December. I fell asleep on the couch, and when I tried to get up I couldn't. My husband helped me, and got me up the stairs. The next morning I could barely walk, or get a shoe on. I knew that something was dreadfully wrong. I made an appointment for that morning. After spending time on the internet, I gave my doctor a list of things that I wanted to be tested for: RA, Lupus, Lyme disease...she added Fibromyalgia, Gout, and a vitamin D check. I thank God for her. She never hesitated.
I am grateful for many things. One is that I not only have a positive RF, but it is relatively high. I also have a high CCP. These tests meant that there was no messing around. I'm not in love with my RD's personality, but he is fairly aggressive. I started on plaquinel right away while waiting for the CCP and other tests to come back. The month that I was on that alone with motrin didn't do much. Then MTX was added and within a month of that I felt great.
I'm still working on my frozen shoulder, but at least I sleep pretty well and function pretty well. I have periods of low grade fevers that make me feel crummy, but I know that compared to many...I'm in a good place.
In 1998, I was an active person, in good shape, was hiking, walking...hot weather, summer and started getting bad headaches to the point of debilitation by summers end. Had low grade fevers, continual nausea to the point of not being able to work. Over the next four to five years, went from doctor to doctor, specialist to specialist. Was all but told it was in my head...antidepressants, muscle relaxers, nerve pills, pain pills, beta blockers, ace inhibitors, accupuncture, PT, massage therapy, TENS unit, spend 9000 on my teeth, TMJ specialist...you name it. Was not until December 2005 that I got the diagnosis. Went from being very active and normal weight to very sluggish and overweight from inactivity and meds. Am seropositive RA and I guess I now have resigned myself to this and am going to be compliant and stay on my meds. I've basically lost and now have to take the pills or not move. This disease sucks. I hate it but I'm honestly trying to have a good attitude. I was like some of the others in that I was very active and rarely ever even caught a cold. I went years and years between doctors visits. One day I woke up and my wrist was sore, not a big deal, I hardly noticed it. I thought I must have "done something" to it. By late afternoon the next day it was red and inflammed and hurting really bad. I then thought I must have REALLY done something to it and went to urgent care. The dr there thought it was cellulitis and gave me an anitbiotic and told me to follow up with my GP. Later that night my wrist was so painful I was balling like a big fat baby, so I went back to urgent care. The doc still thought cellulitis but this time gave me Tylox for the pain. By the time I saw my GP the next day, my right wrist started swelling up too. My doc agreed with the dx of cellulits and told me to stay on the antibiotic. I thought it was weird that an infection could spread from one wrist to the other but not touch anything in between, but he said it could happen. Probably their was something in my wrists that was vulnerable to this particular bug. I was back at his office a few days later when my ankles joined the party. He thought it was Parvo, but sent me to an RD friend of his just to be safe. The RD squeezed me in the next day, said on the spot that it was RA and wanted to set me up on MTX injections. I said no way (scary drug) and asked my GP for a referral for another RD. In the meantime, whatever he tested me for, parvo included, came back negative. I saw the next RD and he was very thorough, asked me a million q's and took gallons of blood and told me to come back in 6 weeks for the results. But a few days after that ALL my joints went bad (except my jaw). Feet, ankles, knees, hips, hands, elbows, shoulders, & something thing in my throat. I could not stand up, my husband could not even help me up because to even touch my arms cause the most unbearable pain (that you all know) so I ended up going off in an ambulance to spend a couple of days in the hospital. That's where I met the RD I have now. He took xrays, re did all my blood work, he said he tested me for everything it could possibly be and even some things it couldn't be. He said he never saw anyone with the inflammation tests (ESR and CRP?) as high as mine were. Anyway, it took an IV of steroids to get the swelling down so I could walk (move) again. Over the next few weeks it was more of the same, although not to the degree of when I went to the hospital. My Rd finally dx'd me I guess about 4 weeks later with sero neg RA, and I started MTX. It helped, but not really enough. I mean, I could walk sort of, but still had a lot of pain and inflammation. Then we added Enbrel, and I went almost back to my normal self. I still have flares, but they are not as bad as before. I think that's mostly becase when it's just a couple at a time it's easier to handle than when it's your whole body. I still pull the occasional all nighter, sitting up with a bad joint. Still over all I'm way better.Like many of you I just woke up as stiff as a board. I felt like I was run over by a truck. This was 2 years ago.
I was put on pred and finally MTX and Enbrel. In just about 2 or 3 months I was feeling much better. Once in a while something strange will happen, like my finger will swell up. Just one finger right before my eyes. Then in a few days it's normal again.
I have the usual aches and pains and some stiffness but, many of you suffer so much more, that, I think I am in some kind of remission or something.
I am still uneasy about the meds though.
I started last fall with problems with intermittent pain in hips, shoulders. Hip joint was so tender I couldn't even lay on it! That seem to resolve for a few months and now I've had problems with my left hand. My hand pain also includes redness and swelling and decrease in range of motion. I've had days of extreme fatigue where I could barely drag myself up the stairs. All the pain and swelling magically appear and suddenly disappear in 2-3 days. They are asymmetrical. I've also had intermittent facial (chipmunk cheeks) when I wake up in the morning for the past 6 years. No one has been able to tell me what causes this. I'm thinking it may have something to do with RA. I've been to FP, Allergist and Dentist. I haven't been formally diagnosed yet. My Rheumatologist initial appt is July 16. See my post on my RA factor level.
1st DX in 1996 RA for 12 years now and it happened after the birth of my son. I was fine up until 3 months after the birth. Docs don't know how I got it I have no family history of RA in my direct or of my past family line.
I had flown to San Antonio TX and my knee was very red/purplish looking. The next day I could barely move it. I had to fly back to the Pacific NW with a 3 month old and a pain in my left knee which in 2003 was replaced with Titanium. It seem my pain got worst when I reach this cold area of Pacific N.W. After the RA blood test I had a definate diagnosis.
I have been on most of the meds out there . I am on the newest biologic to date as far as I know is Orencia. It is helping me to get back my life.
I still have pain and my joints due ache from time to time.
Thanks for asking the great question
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