I know some of you are shy out there and maybe afraid that you won't be welcomed or we won't think that your problems are serious enough. But when people post, it really helps all of us to understand this illness so much better.
And, if you are just lurking out there, you are denying us the opportunity to get to know you, for you to help us and us to help you.
Besides, the more posters, the more interesting it gets. So, don't be shy.
I agree, introduce yourself!!! That's right! We learn so much from each other's stories.Welcome!!!
some of us like a good lurkI'm Brenna, 37 and I was diagnosed 2 yrs ago after numerous surgeries on my hands, wrists and right hip. My GP finally thought it would be a good idea to do bloodwork and my results came back 270 range for RA. Finally an answer. I think I have had RA for 7yrs total, 5 yrs not knowing what was wrong with me. Started on Prednisone and Sulfasalazine. That worked okay for about a year and then started having real bad flares. Hands, wrists, shoulders, hips, knees, ankles, bottoms of my feet and toes. Rheumy just switched me to MTX 3 weeks ago and I have seen no results and it makes me very sleepy and SICK to my stomach. I think I have lost 10 pounds since starting MTX. Taking Prednisone and Folic acid also. 2 weeks ago I was in so much pain that my rhuemy gave me a cortizone injection in the right booty cheek and said that you should feel some relief in about 24-36 hours. I am still waiting 2 weeks later for it to kick in.
But...I will not let this beat me. I have 4 kids, 5 horses, 2 dogs and a cat. Oh there is a husband also but he works nights so I only see him on Friday-Sunday.
The mtx can take a bit to really kick in. If you are getting that sick to your tummy, maybe ask about doing the injections of mtx instead of the pills. I take a shot of humira every Thursday and a shot of mtx every Friday. The mtx injections make me a little dizzy and some nausea but its doable and I can usually go to bed and sleep it off!
I have 2 dogs, one fat, orange cat and one loving hubby!
I had carpel tunnel done on both hands, growths removed from my left wrist, 75% of the cartlidge in my right hip was removed because it was torn and hanging and with every step being pulled and it wasn't until my last surgery to remove a growth on the palm of my right hand that someone spoke up and said "this looks like the work of the RA monster".
How do you manage to take care of so many critters and kids? I love horses. I think it's awesome. But can you still ride with your hip problems?
Its not very easy but my kids are wonderful and help me out so much. I will hold onto my horses for as long as I can. I have not ridden since my hip surgery but want to so bad. I show them in shows in halter classes. You can see them on my website. I got 2 babies coming in spring.
RA Dr just called me and has called in a prescription for something to stop the nasua and I did ask about the MTX injections and she said that we could try that but not until the nasua goes away. I just want relief so that I can move. Suppose to call her tomorrow with an update.
I've been on mTX for a little over 4 years now I guess. At first it made me sick to my stomach too; but over time that's gotten better. ALTHOUGH; I'll admit the night I take it my stomach sometimes gets a little upset. Not bad enough to stop taking it though. The benifits way out way the side effects for my. That's not the case for all though.
What your doctor says about waiting until the nasua goes away doesn't make any sense to me at all. The point of the injections is that the medication goes straight into the blood stream verses settling in the stomach first. Seems a little odd that she'd make that comment.
The nausea is constent with me and MTX. If I was only sick to my stomach on the day or 2 after taking she wouldn't be concerned but I have been constantly nauseas since beginning MTX 3 weeks ago and when I took my 3rd dose this past Sat I threw up about 30-40 mins after and am still so sick to my stomach now. Have not eaten for almost 2 weeks now. I think that is what she meant about waiting to see to try the injections. I took a dose of the promethazine she prescribed about 2 hours ago and nothing. Still sick to my stomach!Is that the same thing as compazine? They've used that with my daughter with some success. There is another very effective one called Zofran, but it can be expensive. But it does work. It sounds like your body has stared some kind of cycle that sometimes is hard to stop. It is important to find out if anything else could be continuing to cause the problem beyond the MTX. My daughter was having problems with her meds (totally different kind, although she takes pain meds). They put her in the hospital, gave her fluids, the Zofran, and medication like high-powered Prevacid because she also has an hyeanial hernia (sp?) and acid reflux. They did an Endoscopy, CAT scan and xray to look for problems. Fortunately, they only found abrasions from being sick so much and the medicines healed her. They also gave her an antibiotic to rule any infection.
She had a similar problem that led to them taking out her gallbladder.
If this continues, I'd see your regular doctor for a workup. Pain medications can certainly damage your digestive system, but they can counter that with things like Prevacid. While the MTX might be triggering it, something else could be making it worse. It could be worth checking out. Maybe you could talk to your Rheumy about that as well.
I watched my daughter get sick like that for about 3 weeks straight. I really feel for you.
I guess you could say i'm a lurker...
I really belong on the JRA board, but its so much more lively over here. I am Kadi, 18 with JRA diagnosed at 16. I was a national artistic gymnast before I got diagnosed... and now i'm a first year university student. That was one of the hardest things for me, was losing my passion... gymnastics. I trained over 20 hrs a week, then my body shut down on me, I still trained and made it to nationals up until last year. i was going to get a scholarship for gymnastics, but i was too sick. Now i'm just taking it day by day. i'm on 25mg MTX by injection and folic acid. One of my biggest problems is fatigue, i'm always tired. I have alot of hand involvement, errosions in my wrists... and some hip involvement. I like to think i'm doing better now then i was around 6 months ago, but there is alot of room for improvement.
I just like reading and "lurking" here cus you guys are actually involved in the board... even though it would be great to have an active young people's discussion section. I'll try to post more often.
HI KD - I am so sorry about your gymnastics. I can imagine your heart break. I was a passionate hiker and I was blessed that I got to do it for 40 years or more. You will find a new passion and I hope we will be fortunate enough to hear about it from you.
There are lots of young people on here. You are an inspiration!!!!!
Hi All!
I am a long-time lurker from Windsor, Canada. (Right across the river from Detroit) Here's my story:
I'm 49 years old, married, a mom and a grandma. I was diagnosed with fibromyalgia in 1991 and over the years have gone through ups and downs with that. About 9 months ago I started having new symptoms that I was pretty sure were not fibro related. (I actually thought it was MS) I finally went to family doc and after x-rays on hands came back as showing RA, was referred to a rheumy. I asked to be sent back to the rheumy who I had seen for fibro even though she is two hours away. The doctor situation in my city sucks!!
I've seen the rheumy twice now and although family doc is calling it RA my rheumy has only labelled it a sero-negative, RA-like inflammatory arthritis for now. I'm taking MTX injections weekly, diclofenac, folic acid and plaquenil daily (since end of Oct. '06). I also take amitriptyline at night for sleep (have been on that since '91). I have seen some change (mostly morning stiffness is not as bad). My feet, hands, shoulders, and hips are the worst areas and pain does seem better some days but I'm really not seeing that great of a change. I see my rheumy again in two weeks.
I remission a realistic goal? I know we're looking to delay the damage that RA does but with the right meds can I expect to have the pain under control?
I also had to quit my job as a cashier and am currently on unemployment sick benefits. They run out in a couple of weeks and then I guess I'm in limbo. Hubby is not exactly supportive in that area. I think he thinks I should just suck it up and get back to work. He doesn't come right out and say it but the hints are certainly there.
Anyway, I just wanted to introduce myself - finally. I think you all are just about the nicest group of people I've ever come across.
Thanks for listening and God Bless!
KD, that is awful to have to give up such a beautiful gift. I can never really understand because I am a physical clutz. But I think of gynastics as an art form and not just and exercise. There is real beauty in it. What you can do is learn to use your body in new ways. With PT, I have to relearn the simplest things, but it is well worth it. I also have had ups and downs where I have been able to return to former things and hopefully that will happen with you. Still stay as physcially active as you can and don't give up hope.
Cathy, glad to see you surface. Remission is realistic but usually is most obtainable in early RA that is treated aggressively. However, technically, I might be in remission right now. That would be amazing. I'm certainly not having the constant flares that I had before I quit working. And, with the right meds, you are going to get your pain to a tolerable level or maybe no pain at all. Lots of people do achieve that. When you are in pain, then you know you still need to find out why and do something more about it. Even with FM, there are things that can be done. PT today really took my pain levels down to about a 3. Yesterday I was at a 10. I haven't been at a 3 in I don't know when. I find that encouraging.
Oh my goodness!!! I'm so amazed we have so many lurkers!!
And I'm SOOOOOOOOOOOO glad you spoke up!! There are so many knowledable people here!!
KD- I am 23 and have had JRA since I was about 18 months old. I understand where you are coming from! The JRA board here is a little dull, you may find some more people you age on some other boards, I encourage you to stroll around some different places.
You can try www.rasushi.jconserv.net
Hope to see you around!! :)
Hello,
I am also a lurker
Trinity2005 Deanna, Coming out has a completely different meaning where I'm from.
Hi to all the lurkers. Pip GoGo, That article you posted about the ptpn22 - the supposed rheumatoid epitope. Notice 1) no mention of the infection connection - they don't even think about it as a possibility and 2) notice that it regulates much more than RA. Lupus, Diabetes, everything we've been talking about. Hmmmm. Pip oops - wrong thread Gosh I feel stupid. Pip Well, here goes another lurker!!
What an introduction!! Jeanne (NZ) Aww! It's okay. You have no idea how many times we all do the SAME thing. Grr Don'tcha love it? LoL Glad to have you! Do post a proper intro so we can get to know you!! Just - don't do it until you're feeling well! :) Hehe
At that time I was a teacher of children with severe multiple disabilities - school boards and health professionals recommended and funded these immunisations to staff working with these kids. Eventually, I decided to go ahead, and then 1 week later - ouch. The muscles in my arms became very tight and burning, and then I woke up with a stiff neck and shoulders, and by two weeks, could hardly lift my arms at all. Eventually, after doing blood tests, ESR was elevated, (but only to about 45), he phoned me to go in, and told me that he thought it could be Polymyalgia Rheumatica and referred me to a Rheumatologist, whom I saw in April. He immediately diagnosed Seronegative Arthritis with Polymyalgia Rheumatica. Put me straight onto Prednisone and Methotrexate,folic acid, & cortisone injected my shoulders and wrists. Of course, almost immediate relief, and I was happy. Gradually brought the Prednisone down to 6 mgs, A couple more shots in the wrists over the next year or so, but arms and hands were still quite painful at times.Later, last year, added Plaquenil, Fosamax, Losec, and after a recent flare on November 2006 (my first, and involving by now my knees and ankles as well as my arms, hands and wrists) upped the Prednisone in December, more shots and added Brufen. Now, also, it seems that the Carpal tunnel has returned, and possibility of another surgery. Aso possibly some Ulnar Nerve damage The shots I had in December had no effect on my wrists, and my arms still burn. I had, earlier in about 2000, had surgery for cataract removal (both eyes) and then bi-lateral carpal tunnel surgery early in 2003. Add to that bilateral trigger thumb surgery, and pinkie trigger finger surgery 4-5 years earlier. I also have osteoporosis in my hip and spine, and also wrists and fingers. Apart from that, I'm very healthy.
Except that just on this Christmas Eve, I developed an infected abcess on a root canal, and after antibiotics, I have to have that surgically removed in February. Joy! But, I think the drugs masked the pain, and I just thought I had a little toothache starting up, until Christmas morning when I had a face like a football on one side, and looked like a cabbage patch kid!! No wrinkles on one side of my face - better than Botox! Anyway, I got in to the dentist between Christmas & New Year - he gave me antibiotics and referred me to oral surgeon. The infection has cleared now, the tooth will be removed next week and the abcess drained. It will be good to get that out of the way. OK - that's the bad part of me. The good part is - I am a mother of 2 adult children and grandmother to three of the most amazing grandchildren. (Aren't they all)? My daughter and grandaughter live in Australia, and my son and his wife and their two boys live locally, near me, so I'm very lucky. I speak on the phone almost every week to my daughter in Oz, and see my son and his family almost every week as well. Love them all to bits, and really miss my daughter and grandaughter. Had to give up work recently, as a result of the flare, my Doc said I needed to have 3-6 months rest, and then not to go back to the 40hr week job I was doing after that. I was a Customer Service Rep.in a call centre (funnily enough with our Govt. Agency that funds Social Services, benefits etc). Sitting all day (not good) and at a computer all day, typing (not good). So now I am on the other side, and at the moment in receipt of one of the benefits that I was helping other people to apply for. I enjoy my family, reading, gardening (ouch) genealogy research, and am learning to pace myself - like a lot of you, I have been a high energy physically active person, trouble is, my brain still thinks I can.
Well, that's about me, I have rambled on haven't I. The one I wrote before wasn't nearly as rambly. I have been lurking around here since September, well, joined in September, and I must say this is an amazing little community. So supportive, and FUNNY - great humour, and someone always manages to come up with the right thing to say to someone who is hurting. It's just wonderful. Thank you for taking the time to read this. I hope you all have at least a comfortable happy day. Glad you're here Jeanne, and the rest....my brain isn't working to name everyone, Jeanne's was the last, lol. I know I was happy to land here on the forum. It's a crappy disease that I don't understand but it's nice to be in a group of people that know how you feel. Welcome to all of you!! We're so glad you're here and decided to join in on the discussion. You'll no doubt have much to contribute to the forum. Again; Welcome!!
Welcome Jeanne! At my rheumy appt. yesterday she was saying that she believes the Hep-B innoculations are responsible for RA. Personally I have never had it and now probably won't. I am glad that your meds seem to be working. Take care, Hi, I've been lurking here since I was diagnosed with RA in November last year - Thanks for this post, without it I probably wouldn't have had the courage to say anything to you all, despite the support I have been getting vicariously. My name is Laura and I'm a 19 year old student. In July I developed pins and needles in my left hand. I left it for a while (1 month) and when it didnt disappear I went to see my GP, who diagnosed Carpel Tunnel Syndrome and gave me a splint. In September I began to get shooting pains across my knuckles (again in my left hand) but ignored them as I was just about to start university. I had been at uni for 2 weeks before they became unbareable and I made an appointment with my new GP. He took one look at them, said I had some sort of inflammatory arthritis and sent me away for blood tests. The bloods came back with a positive RF, CRP and ESR and I was sent to the rheumatologist. At that point I was on Arcoxia and 20mg Prednisolone. The Rheumatologist declared that he 'had no doubt' and was 'absolutely sure' that I had rheumatoid arthritis and started me on methotrexate immediately. He found swelling in places I wasn't aware could swell! At that point I couldn't move my hands and had 2 big assignments due. He found evidence of RA in my fingers, knuckles, wrists, elbows, knees, toes and ankles. I had instuctions to have blood tests twice a week and to increase the dose of mxt every four weeks. After every increase of mxt I would develop a cough and fever for about a week and then a cough which would pop up intermittently. I saw the rheumatologist again today and he has taken me off the mxt due to this and put me on sulfasalazine. Currrently I take 90mg Arcoxia, 12.5mg prednisolone - we're trying to get that down to 10, emphasis on trying -, codeine linctus for the cough and, once the prescription comes through, sulfasalazine. I would be lying if I told you all I wasn't scared. I am. My degree is in English Literature and Creative Writing and while I try to keep as positive a spin on everything as I can, somedays are harder than others. I want to thank all of you for being such an unknowing support and comfort, especially when I feel frustrated and lonely. I can't thank any of you enough. Laura Laura, glad you decided to speak up. At your age, at the beginning of your preparation for your life's work, it is obvious why you would be scared. All of us here are. That's why we come. We're scared and we need someone to talk to about all of it. It's sad that it has hit you so hard and so fast. But at least you do have a doctor that is working to treat you. It sounds like a very good doctor. That's a big plus. Also, I am a writer. You are actually very lucky because there are ways to keep writing and teach even with this illness. College can be really demanding though. I suggest you see if your university has services for the disabled. Most campuses do and they can help you manage your limitations and help you work with your professors. If you need assistive technology for instance because of your hands hurting or because you have trouble getting around campus, they might be able to help. Also, your state vocational rehab might have aid too if you need it. Teach your friends how to help you with things. It's okay to let someone you trust carry your books. It actually makes them feel better to help you in someone. Again, glad you have come forth. You might also get a kick out of the writing section of rasushi at www.rasushi.jconserv.net. Alan, Katie and I all post some of our creative writing over there. It's a nice relaxing place to go to. Welcome Laura!! Glad you're here with us. Don't give up. You can do this. Hi Laura, I also just identified myself as a lurker. I'm Kadi, 18 with JRA. I know the same feeling you are having with school. This is my second semester at university, and around 2 years with arthritis. I'm just overwelmed with university life, let alone having this disease at university. Where I attend Uni, they have a great disabilities center that helps alot. I urge you to go research where you can get some help. I have a big problem with not finishing essays on time in class and writing tests. They provide me with extra time and a computer. I also have note takers in class. All of these are accomodations from the disabilities center. I know that at first it can be a bit daunting asking for help, or explaining to people why you get all these extra priveleges but it really helps in the long run. I hope you can find the right accomodations that can help you get toward your goal of your degree, I know I struggle with it everyday to. good luck Kadi Thanks everyone for such a great welcome. Kadi - thank you for your words of encouragement. One of the hardest things I find is asking for help - I'm used to being a very independant person! I have been to see the disabilities officer and they have given me lots of extra time for exams and the details of how to get extra funding from the government to pay for notetakers in lectures. I was really fortunate in that my parents brought me some voice recognition software to write all my essays with. It's great, you just need to remember to proof read very carefully! Laura
Welcome Jennee! Do you have the psoriasis at this time? I was told that one can have PA without obvious psoriasis for a while. I have been Dx'd for 2 yrs and I understand about the 6 million dollar question. Yesterday I acquired a rheumatoid nodule on my achilles tendon and it just kind of took away any further thoughts of just maybe I don't really have this even though I could see it on x-ray with the swelling and fingers changing direction. I am glad that MTX is helping you and so sorry about the Dx. Glad that you are here as we sure need each other. Glad you are here to Jennee. It is such a fight to get diagnosed and then the real battle starts. However, you have lots of treatment options left so there is plenty of hope for you to regain much of your life. Please keep posting. And, I have give you a welcome from Roxy as well. Here she is so sick and she still wants everyone to know she cares. Welcome, welcome, to all of you who have spoken up and joined us. Deanna, you're brilliant. (like anyone here didn't already know that
I've been away from the computer for maybe a week, and here I see that with one kind invitation you've brought so many interesting people to the party. Way to go! Hats off to all of you who are joining us, telling your stories, being part of the mutual support we all need. It takes a lot of nerve to join a forum for the first time. I'm not sure why that is, since very shortly you wonder why you were ever nervous. But at first, it's scary. Thank you all for taking the plunge.
The only psoriasis i have at the moment, is a tiny patch between my eyebrows that is quite manageable. The rest i think is pustular psoriasis (re post on pa board). The Drs think it is just a reaction to MX but they don't seem to hear me when i say i had it before the MX! I really couldn't be bothered chasing up any more answers. It seems every time i go to a dr they tell me i have something new.
Thankyou for the welcomes. It was exciting to turn the computer on and see your responses.
Oh my goodness, I don't check the board for ONE DAY and I miss so many people. HHEEELLLLOOOOO!!!! Glad you could join us!! Do stick around! :) Yay!
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