HealingWell
Search Close Search
☰

New to this forum, but living w/ this disease all my life & in need of advice

Support Forums
>
Rheumatoid Arthritis
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 9/23/2013 5:20 PM (GMT 0)
I'm new on here & looking for info on multiple arthritis. When I was 3 I kept breaking my right foot, it took until I was 10 before the dr.'s knew what it was. Children don't get arthritis was how it was back then. But they finally figured it out. I was on so many meds & the ones that seem to help most I'm allergic to. Methotrexate I vomit 6 days out of 7, humira attacked my nervous system (most painful side affect I've lived threw to date) anyway I had corrective surgery last fall on my right food & my big toe fused, within the next month I'm having total wrist replacement of my right wrist. I'm 34yrs. old w/ 2 kids of my own, & also care for 6 nieces & nephews all together I have what's now called J.I.A. (formaly J.R.A.) & sense then diagnosed w/ osteoarthritis, osteopinia, osteoporosis, degenerative bone disease, & chrones disease. I've looked every where I can think of including the Arthritis Foundation for info on multiple arthritis conditions & keep coming up w/ nothing. Is their anyone on here w/ same, or similar problems that can share info, or tell me what the future holds other that pain, swelling (flare ups), fatigue, steroid shots, & draining of my joint, cause I know plenty about that lol. When one med helps one it does nothing for the others. Can anyone out there relate or advise?
Posted 9/23/2013 9:20 PM (GMT 0)
Hi! I'm sorry that you're going through all of this. You are not alone. I was a kid with J.R.A. I developed Crohn's as a teen and later in my 20's got thyroid issues. My arthritis dx was changed to psoriatic arthritis and I deal with psoriasis as well. Multiple issues, all autoimmune problems. So, I feel for you. I'm 40 and I just had a total knee replacement this year.

It's so hard to find the right meds that will work or at least help. Have you tried any of the biologics like remicade, enbrel, or cimzia? Remicade helped me for 6 years, but I built up a tolerance to it. Have you ever considered making dietary changes? I have found that the Specific Carbohydrate Diet was very helpful in calming the Crohn's disease and it helped my arthritis too. It's a very strict diet, but it was worth it for me to try because it helped so much. Im not on it any more, but I find that eliminating refined sugars helps a lot. Sugar is very inflammatory so it makes your diseases worse- at least it does for me. As far as your bone loss goes, steroids can really damage your bones. Have your doctors talked about putting you on a bone builder like fosamax? There are some newer ones out that you only have to take once a year.

Are you really getting a wrist replacement? I think I'm going to end up doing that in the next year or so. Both of my wrists are destroyed. I have kids too so I know how tough it is to have to take care of them when it hurts just to brush your teeth!

I'm sorry for what you're going through. I know it's difficult and exhausting. You're definitely not alone.
Posted 9/23/2013 11:15 PM (GMT 0)
I actually stopped seeing the only Rheumatologist in my area over a steroid disagreement. She had me on a high dose for almost 2yrs. w/ cortisone shot every visit & it got to where I couldn't walk, I had so much pain in my hips. I dosed myself down & stopped seeing her for a few yrs. then other problems & lack of Dr.'s that specializes in the area had me going back to her & again same treatment. I did Embrel injections for a year, but it stopped working. As of today I'm going back on a high dose of diclofinex for a trial period until surgery along w/ the highest dose of calcium I can take. I have to take Pepcid cause diclofinex makes the lining of my stomach bleed. Its just trail period to try & strengthen my body & bones before surgery, but 1st. sign of problems I'm to stop & go back to what I'm currently taking which isn't helping either. 600mg 3X's day ibuprofen. I have been havibg trouble w/ my wrist sense Jan. at first I thought it was a flare up but it didn't go away, it took 5 months to figure out what's going on. I have gangleion cysts on my bones & was getting steriod shot weekly & biweekly trying to desolve them. Finally I was refered to a surgeon who did xrays & said removing them will do no good they'll just come back & the shots I was getting were too often & took what cartilage I hadleft in my wrist & not I'm getting bone spurs. The surgeon wanted my Rheumatologist to sign off on the surgery & she looked at me like I was crazy & said no I don't need that done, so I ased what's my other options? She didn't have an answer til blood work & her own Xrays were done, that was 3 weeks ago & I still haven't heard back from her. While waiting to hear back my palm got to where I couldn't touch it & had like tooth ache pain running down my last 2 fingers & up my elbow. I went to urgent care & the Dr. said I have nerve damage & forget what my Rheumatologist said & go see the surgeon. Getting so many do it/ don't do it I was conflicted on what to do, so I went to the nurse practitioner at my regular Dr.'s office for some advice. She said how many times have you been seen the past 9 months over your hand? My answer was countless. She asked what's my quality of life now compared to after getting it replaced? My answer was my kids have been helping me get dressed & I'm in nonstop pain & after I've been told I'll be pain free. She told me she's putting me on high dose meds & getting a bone density scan & she'll tell me how well I'll be able to heal from surgery. After 9 months on dealing with this & so many different answers on what to do I've heard after replacing a joint its a miracle how much better I'll feel. I see my surgeon the 26th & were setting the surgery date then.
Posted 9/23/2013 11:40 PM (GMT 0)
I am one of those people who research as much as I can to find out what to expect. My chrones is mild & controlled w/ over the counter meds. I've meet a few people w/ Rheumatoid Arthritis who seem to be in much better shape than I am, & it makes me feel like I'm being a baby lol & sometimes get looked at from others w/ R.A. as that also, & it got to where I was ashamed of myself for even admitting to myself I am different. It took awhile for me to accept my limitation & be ok w/ this. Then after finally accepting it I find out I also have osteoarthritis, osteoporosis, & the others which actually made me feel better as to why I was in worse condition as the others I had meet threw the years. The osteoarthritis is something I just learned about, but the Rheumatologist I was seeing had it on file from the first time I started seeing her, she just neglected to tell me about it. I've been looking everywhere to find info on J.I.A., O.A., & the others all in one body & have yet to find anything helpful
Posted 9/25/2013 3:05 PM (GMT 0)
Man, you sure have been through a lot! It's hard when you live in a small town. How far away is the nearest big city? Would it be worth it for you to make the trip once a month just so you could see a better doctor? It sounds like the doctors you've seen aren't willing to collaborate and that's making it harder for you. Maybe the surgeon can recommend a different rheumatologist? I hope you get the help you need. Sometimes you can feel so helpless when you don't have good help from the doctors. It's good that you are proactive in researching and learning. I learned a long time ago that no one is going to work harder to take care of me than ME! So, I always speak up for myself. Push for the help you need. Keep us posted on how you are doing!
Posted 9/25/2013 4:50 PM (GMT 0)
Thanks so much for the support. Its awful so many are going threw the same or similar problems I am, but its nice to finally find someone that can relate. I have been reading other posts & finding out I'm not alone is such a weight off my shoulders & for the first time I'm finding that telling my story can help another just learning how to deal physically & emotionally. As far as a place that has other Rheumatologist the closest is almost 3hrs. away & I tried that as well looking for a second opinion on my wrist about surgery & the only other place is Columbia University Hospital & the Dr.'s their are fresh from meds school, don't know how to listen or relate to the patient. They tried telling me 1st. J.R.A. isn't J.R.A. its J.I.A. now & I might not even have any of the health problems I told them I was diagnosed w/, & they can't put me on meds, or believe I have any health problems until they get the Dr. notes & run their own tests. Then told me I had 2 options on what meds I can take & would have to choose between the 2. Humara or Embral. I told them Humara attack's my nervous system & was told it could kill me if I continued to take it & I have Chrons & Embrel flares that up. Their reply was choose on & Humara won't kill me & they dout it attacked my nerves like I said it did. I had one visit & won't go back to that lol. As of now I do research on meds weigh the pro & cons & if its one I'm comfortable trying I take it to my PCP & have him write me a script, when I have a flare I self medicate w/ steroids I have my Dr. keep me in stock of 100tabs of 5mg & 10mg. Your absolutely correct nobody has worked harderto get this under control that I have. I've had the Diclofinex script sense Fri. & not real big on starting it again cause it makes my stomach bleed, even tho its just temporary so build up strength for the wrist replacement I'm scared to take it cause what happened the last time & how long it took to heal from it.
✚ New Topic ✚ Reply