Hi All:
It's been difficult trying to comb thru all of the message topics to find what I need, so I'm just going to put this out there as a new topic:
I was just diagnosed today with RA, had to stop working in July as a dental hygienist because of the pain in my wrist, fingers and the numbness. I never even thought about the pain in my ankles, especially horrible on the right because I had sprained it quite badly last year, or the discomfort in my hips. I only thought, well, I turned 40, it's the beginning of aches and pains. But the hand drove me to the doctor, and after two and a half months in, excuse me, HMO HELL, I landed with a hand surgeon who shot me right to the rheumatologist. Test, test, test, RA. I was also diagnosed with Hughes syndrome in 1998 (another autoimmune), and my brother has RA affecting his feet horribly. He's only 29. Doc has me on a medrol dose pack for right now, next Wednesday I go in and we decide where to begin with drugs.
So the questions: Does exercise, like swimming, help? I can't walk far or do stair climbers, etc. What about diet? Memory loss is a side affect of Hughes, what about RA? ( Hey, maybe I'll forget I'm in pain!) Do other's of you have a hereditary link? Can disfigurement be prevented? (I'm not shallow, just asking.) What about PT or OT? My hand guy has me seeing a hand therapist, but I don't know if I should continue. Is there any other "beginners information" you can share with me? OH, and one more thing: is the fatique a part of the RA, or a side effect of the meds?
Thank you so much.
Lisa
Hello Lisa,
welcome lisa, the fatigue you are feeling is a symptom of RA, probabley the worst part of it for me. Ra does also run in families. I have a brother with PA, and a sister with RA. What is hughs disease? I am 41, and the first year of this disease has been horrible for me. with pain,fatiuge, feeling ill. but i can say that i have turned the corner, as you will. It takes a while(months) for the meds they give you to work,or,and to find the right meds. prednisone is a life saver until the meds work. But very difficult to come off. You have found the right place, and your brother should be of help with all your questions. it is a long haul with dought,discouragment,and pain, but you will feel better in the end. Im not saying all your pain and other symptoms will go away, But hopefully manageable. well this is my story, everyone is unique to this disease. But one thing i know for sure , this board is comforting,supportive,and informative. so learn all you can from this disease and the meds.
kel
Hey Lisa, and welcome. I am sorry you have to be here.
Yep, my PA(a slightly different kind of autoimmune) was passed to me from my dad. My sister has it as well.
Water areobics is the way to go. I do some lifting when I can. If I am in a lot of pain I don't work out, but I do walk and try to do some chores in the house. Fatigue is huge for me, and the memory stuff as well. I used to be able to remember everything, but not any more unless I have time to think. (NOT good for a teacher)
Yes, the meds are hard on the system, but you have to ward off some of the damage and that is the only way to do it. Try to stay on the Prednisone until you are fully on the drugs you decide. I am on Methotrexate, and it was built up over time. I just started Remicade infusions.
I do not know all of the answers, but I am here for you. I have only been dx for about seven months...have been suffering in silence for about ten years. I have damage because of it, and we are playing catch up. I am glad that you stuck with it and got in to see the Rheumy! Continue with the PT or OT they are some of the best help I have had.
Take care. shel
Hi Lisa! Welcome!!!!
I am so sorry for what brought you here. But I have found that there are a lot of knowledgeable people here and they all are eager to help and listen. So feel free to ask anything or even if you have a gripe, we listen to everything!!!!
My RA was inherited, my mom has it. I have extreme fatigue with mine. My memory sucks cause of the RA. I am 36 and I have had this for 3 years now. As for the meds...get on a biologic as soon as you can, they can slow the progression down significantly and they help with the fatigue. You can see at the bottom what meds I take, these seem to work well for me. I still have flares but not as often and I can live a semi-normal life. Good luck and please keep posting!!!!
Hugs
There is a genetic link (OK, peeps, you never thought you'd here me say that, right?) but if I remember correctly it's only something like 15% for identical twins.
Water exercises are the best - almost 0 strain on the joints.
Diet has a huge connection to this - but it takes a lot of time and effort on elimination diets to figure out what works best for your body. I have one friend that had put herself into near remission on diet and supplements alone. There is also a couple of 'diet' people that post here. Hopefully they'll see this post.
I and a few others on this board use antibiotics (Minocin) to treat our RA. Check out www.roadback.org if you want, or just ask questions.
Hugs, sorry you had to find us, but you'll love it here,
Pip
Hi and Welcome, Lisa. As you can see all of us are on different medication cocktails. RDs usually start you with a DMARD and then work up to a biologic if needed. Some RDs will start AP Therapy like Pip mentioned. Some will start you on a DMARD and a biologic. It's all over the board, depending on your insurance and what they will authorize, stage of the disease, lab markers, general health, etc., etc.
The most important aspect of this disease is to have a great working relationship with your rheumatologist. You also need to have, or to develop if it's lacking, patience. Patience is a top priority in dealing with RA. The meds take from 1 month to 6 months to see changes in your condition. Those weeks will seem like years, you just have to be patient.
Swimming/aqua exercise is probably one of the best, if not the best exercise you can do for RA. The next is light weight bearing exercises. Not everyone can do weight bearing but it's worth a try. Water not only helps physically but emotionally as well. Water is a great soother and calmer. For me it's better than any mood altering drug. If you can walk it's a good minor cardio workout. Not the best cardio workout but better than none at all.
RA brain fog is a true medical condition, I don't care what the doctors say. It exists and each of us has it to some extent. Mine was pretty severe but as my meds began to work, the fog lifted. My memory is back and I'm able to think. For me the fog and the loss of my cognitive state was the worst of the RA symptoms. I hated not having my mind.
Yes, the damage can be prevented with early medication intervention. It may take awhile to find the right combination of drugs. Don't go into denial. Stay the course with your RD and your damage will be minimal. Some of us had years of denial and the damage is done and can't be reversed. Remember damage can never be undone. The disease and damage can be slowed or you can have possible remission, but damage is damage.
PT/OT can't hurt, so why not continue? Use every medical resource that you can to beat this disease and to keep damage to a minimum.
Please keep us posted. We're always interested in how other people are progressing. Lindy
hi Lisa, WELCOME to the board, sorry you must be here with us, but as you already have found out this is a great, supportive, understanding bunch of folks.
Your doctor is your lifeline at the moment. It will take a while for you to sort out how much pain, people here keep a journal, sometimes so they know how much, were, etc. (apparently the insurance co. wants to know that you have multiple areas of concern and then you get the treatment you need!, keep a log of your pain and where it is. A scale of 1-10 the worst is the 10! for amount)
Prednisone , I took 15 mgs at the beginning., is the best to help before the real medications are given and begin to work well. It could be months! , sorry to tell you that. I took plaquinel first, then methotrexate with folic acid. I felt pretty good for years until an operation caused me to have to go on more Prednisone and add Remicade, this was in Dec of last year. It is only now beginning to work well!!
I inherited it from my grandmother.
I don't exercise when I hurt, but I have no swimming pool, that could make a difference. Gentle excercise not the sort that 'exercises it away'. Everyday life seems to be enough exercise for me when I am hurting. (just getting to walk around WAlmart is a treat when I'm in pain!)
I am allergice to the nightshade veggies. Tomatoes, potatoes, bell peppers, eggplant. Some people are and some not. I can't eat them without stiffness, swelling and pain developing? Just me!?
Memory loss is scary, be careful driving, and doing things that may result in injury. (I ran a stop sign, no one was in the intersection, but I'd be careful driving). Memory loss and fatigue are a major part of this disease.
Now, that you are about to take drugs that prevent damage to your joints, you should be fine. It all depends on how much you had before you've gotten the meds (as Shelly said some of us got the damage before we got to the meds!) I have damage to my hands and feet. I'm hoping the Remicade/Methotrexate chemical cocktail will eliminate my pain? Soon!! (I still have trouble with my left foot in spite of these powerful new meds?!)
This is all very complex and I'm so glad you've found the forum to begin to ask questions and read. There are loads of websites with info about the drugs you will be taking. Your doctor , I hope is very good, helpful and will listen carefully to what hurts you and that you will begin treatment with one of the 'super drugs' real soon. As everyone told me, "be patient' for them to work for you! Please stay in touch so we can hear what you are taking and how it is working for you.
Good luck and Nice to meet you, Lynda
Hi, I've been viewing this board and messages for several months and decided to post a reply. I'm not sure if I have RA, but I have some of the pathological symptoms of it despite negative tests (inflammatory poly arthritis with migratory pattern, appears non-damaging non-RF non Anti-CCP and non HLA B27). RA can manifest itself in many ways and sometimes other diseases can be confused with it for example lyme disease. I think that if a genetic basis for RA does exist then the person is usually positive for HLA B27. HLA stands for Human Leukocyte Antigen and are molecules displayed in the body that are used for recognition of self. Last year I had extreme amounts of swelling and inflammation (particularly in the hands and knees and was almost to the point where i could not longer walk and barely write) and was nearly bed ridden. I was not on any medication at the time other than NSAIDS and pain killers. I have had some pretty good success since my first visit to the rheumatologist and can now function normally for the most part. I started off on sulfasalazine and eventually moved up to where I am now at 1500mg twice a day along with Etodolac 500mg twice a day. I have slowly added on dietary and supplemental changes over a period of time to see what effects they have. I tried to do these one at a time in order to be able to judge what works and what doesn't. I started with fish oil which has worked quite well for me. I used to buy the normal 1000mg pills, but I find that the 1200mg double strength pills work best (takes at least 12 wks to work usually). I take about 10 of these a day (5 in morning and five at night). The fish oil works good on it's own, but works significantly better when combined with approximately 10mL of cold-pressed olive oil per day. I take a vitamin D supplement usually just one a day and this has also seemed to help. It has been shown that vitamin D levels as well as EPA/DHA is usually very low (particularly in the joints) in people with auto-immune diseases. I also noticed a significant change when I switched to a vegetarian diet that was high in fish, grains, fruit, and olive oil on top of this. Fish oil in high doses not only prevents macrophages from releasing inflammatory mediators, but also inhibits an enzyme which is necessary for degradation of cartilage (protective?) I know this is a long post, but I will add some things that did not help or seemed to aggravate the symptoms. Bromelain did not appear to help. Eating a large amount of high-fat dairy products or meats aggravated the symptoms significantly. Probiotics seemed like a practical measure to try but also seemed to greatly increase the heat and swelling (perhaps due to leaky gut syndrome). I hear that very light exercise is good for this disease, however it seems to make more sense to reach the lowest level of inflammation possible first before attempting this. Swimming may be ok to start off with and then switching to a heavier exercise such as brisk walking etc. I have had what I consider great success so far using these measures, but I have only been instituting them about about 4-5 months so far. I will keep you updated if my symptoms continue to improve or I try something new (Grapefruit seed extract?).
Yo RX2Heal -
Dude or Dudette - welcome!
You've been reading science! Want to be my new best friend? :-)
What do you have on macrophages? I've just run across them and would love to see anything you have on them. Pretty please!
Your migratory pattern? Single joints at first?
Non-everything? I didn't know that was possible!
Welcome and Hugs,
Pip
Wow! What a welcome wagon! Thank you all for sharing your information/stories. It really helps to know there are such kind people out there.
Hughes disease/syndrome is an alternative name for Anti-phospholipid antibody syndrome. I was diagnosed with it after multiple 12 week miscarriages. After dx., I was able to be on blood thinners and deliver 2 more healthy babies (I had one already!) No one told me at the time that THAT's when I should have been referred to a rheumatologist, but I didn't really have any other S/S (signs or symptoms). It is an autoimmune disease, as well, and causes the memory problems that RA does, blod clotting and clots, etc. Daily 81 mg. of aspirin is helpful. Higher risk of CVD and stroke. My dad had a massive one at the age of 46. He's alive but paralyzed on the right side, 18 years later.
My younger (half)brother is not a very responsible individual (I believe that would be putting it mildly) and does not have health insurance. Therefore, he does not take meds and is not managing his disease. Doc's gave him samples at one point and he was doing better, but he has no ambiltion or drive to DO something about it. We are truly night and day.
How wonderful it is to meet each of you. I'm going to try to take a positive outlook and make my life work well for me, as much as possible. Like many of you, I have young children, and I don't want their lives defined by whether or not I feel good.
Lisa
Hi Lisa and welcome.
I haven't been here long. But you have picked a good place to come to. So much knowledge on this board and the posters are so kind.
Hi Lisa, and welcome! I'm pretty new to RA too, and have found so much info here on this board and some very cool people too. Everyone has something valuable to offer and I'm glad you found us.
RA hit me suddenly and with a very big bang, attacking pretty much all my joints, starting with my wrists and making the rounds. It took about 4 months till I was dx'd and then I started on methotrexate and a bit after that enbrel was added. I am now almost normal again, with only minor pain in some joints and the occasional flare.
I don't think it is one bit vain to worry about disfigurement. No one wants that to happen and it wouldn't be normal if it didn't concern you to some degree. But try not to let yourself get to proccupied with what negative things might happen, because it also might happen that your RA will be well controled with the meds and who knows? Maybe you be cleaning teeth again before long
Linda
Hi, Lisa! Welcome!Hey Lisa -
Was there a test for the Hughes disease? I had multiple 12 week miscarriages - and they ran something like 17 genetic tests when I did conceive (on antibiotics!) and developed a pulmonary embolism after my babies birth.
I'm getting all my records together to try and figure out where things started going wrong and making a list of how many doc's missed something.
Sheesh!
Pip
I’m a former Dental Hygienist too. I had carpel tunnel surgery over 15 years ago and tried to go back to work afterward. But, even though the pain was mostly gone, I had lost a lot of the tactile sense in my hands. So, between the neuro-surgeon telling me he didn’t recommend I do that kind of work, and my fear of hurting a patient, I quit and begun teaching Pre-K. It was very sad for me to make that decision as I had worked very, very hard to get through DH school, and I loved it so much. I imagine with the RA (if you also have it in your hands) you are considering a possible career change. I remember the anguish I experienced making that decision. All I can say is that life has many twists and turns and each brings a new adventure. (As it turned out, I surprisingly developed a passion for teaching Pre-K too). I was diagnosed with RA about 2 months ago, shortly after our move from TX to Panama. So far I am only on Celebrex, but anticipate a visit soon with one of the only 2 rheumatologists in Panama. Evidently, I have had this for some time and it has been progressingly getting worse. I am sorry that I can not be more informative as I am a new learner like you. This forum has been great help. I wish you well! (PS -- my general doctor told me that swimming, tai chi, and comfortable walking on a treadmill were great exercises. So, I am doing all 3 six days a week. It has helped with the achiness.)
I'm so happy to hear of another RDH on this forum! I, too had hand surgery about 13 years ago, not CTS, but an injury to my wrist and thumb (door slammed, ruptured tendon, cysts formed). Now RA in both hands, neck, ankles and one hip.
It took about a year of therapy to get back to work, and I do primarily perio, around 6 quads SRP/day, with regular pxs in between. The cavitron became my best friend (esp. w/ all of those slimline subg tips!!!) I actually bought my own so I didn't have to share it. Worked 3 full days and 2 half days/week.
So, I'm done now. Just have to figure out what to do with the rest of my life. I'm not interested in disability at this point. Maybe the Mega lottery game? LOL
Thanks!
Lisa
Oh, and yes, there is a test for Hughes syndrome...aka antiphospholipid antibody syndrome. Have the doc do the test...they are all part of the same family.
L
I really feel for what you are going through. I couldn't use a cavitron very well at the end of my days as a DH as it made may hands go numb. It is a tough call to walk away from such a great career--perio DH is the best! I worked for a GP and only 2 days a week--still I had trouble with carpel tunnel or the beginning of RA? (Who knows?) Anyway, I looked into Public Health, working for a supplier, and even going to nursing school. However, what I really would have liked to do was teach DH, but no program was near by. Maybe that will give you some ideas, if it becomes necessary. We have such a terrific science background it's really sad to go in a totally different direction. Fortunately, there are lots more options now than 15 years ago to use your RDH. I wish you lots of luck in finding just the right fit. Best of all, I hope the RA goes into remisssion so that you can continue being a DH.Hi Lisa,
Welcome. I can definitely state that the fatigue is from RA and not jut the meds. I'm not on any meds now aside from OTC Naproxen/Aleve and there are times when I have terrible fatigue. For me, there is no hereditary link however for others here there is. I don't honestly know why that occurs. For your other questions, I don't really know the answer but I'm sure considering my late reply that most of them have been answered. Again, welcome to the board.
Steph
Lcarter: I know, the cavitron is supposed to make things easier, but in the end, I couldn't even hold on to that! I'm going to hang back awhile and see what happens with the meds. Then I'll decide which way to venture (again, Lottery winner comes to mind LOL).
Steph and everyone else, again, thanks for such a warm welcome. I picked up some books tonite at the bookstore before my OT appointment. I'm even putting off the OT til I get better. I'm 40 and walking like a 90 year old right now!
Lisa