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Old 06-20-2003, 07:36 PM   #1  
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Smile Hi...Newbie with RA

Thought I'd let you know, I've found this board very interesting. I guess I'm needing to find a place where I'll be "understood". Can't excercise to lose weight......but sure do need to lose. Have lost a few pounds, with about 30 to go. Kinda stuck right now.

Anyway, hope you all are doing well. Thanks for letting me visit. Oh, & I collect angels!!
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Old 06-20-2003, 10:42 PM   #2  
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Hi there,

Wanted to welcome you to this weight loss group from one RA person to another. I have has this lovely illness for about 8 years. In the last year, I have able to do the Leslie Sansone's walking tapes. Funny, I have a hard time walking any distances but I can do the walking in place stuff. I am VERY grateful for that to be sure. You are unable to exerecise at all? I know it makes it a lot tougher to lose weight but you surely have been successful with a 30 lb loss.

Anyway, Welcome. I surely know how you feel.

Cheers
Rosanne
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Old 06-20-2003, 11:36 PM   #3  
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Understand only too well. have been in a nasty flare and reluctant to take prednisone as I don't want to put back on an oz of what I've struggled to lose. Have also been plateauing.
I exercise in warm water at a rehab center's wellness program. Have not been going very much lately and I guess that's part of the problem. Was there twice this week and it's helped.

I don't have fibromyalgia but post on that thread as the nice people there also understand.

If we'd get some nice weather that would help too. Just heard on the weather report we've had rain16 of the last 20 days. It feels like 20 of 20.

To better, leaner days!
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Old 06-21-2003, 09:17 AM   #4  
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& thanks for the welcome Jellybean & Anagram. Yes, this is a great illness to have, isn't it?! & part of the problem, is like my dr says, most people don't understand it IS a disease. When I told friends & family, they took it as they did my osterarthritis (which is bad, from car accident). It has me on disability because of my back.

I've never come across anything so scarey & hard to cope with as this. My RA only started about 1 yr ago, but advanced very rapidly. I started out on Azulphiside, then Methotrexate(type of chemo I take at home), now I'm on Methotrexate & Remicade. I go for infusions that take about 2 hours. It really helps, but if you don't have good ins or medicare(which I have), it's impossible to get. Each treatment is over $2,000. I'm so glad my medicare covered it. To me, it's a miracle drug. Only thing, I'm very sensitive to it, so I have to have Benadryl, Zertec, etc., the day of treatment. So, I sleep the day away & out of it kinda the next day. But, afterwards, soooo much better. Don't know either of your situations, but it's a thought for you, both.

I haven't lost 30 lbs.....that's how much I still WANT to lose.lol I've lost 16 lbs since the end of April. That isn't so bad, but I've come to a standstill. No, I haven't found any kind of exercise that I can do. Mostly because of my back problems.

Didn't mean to write a book.......sorry. Just wanted to let you know a little about me. Feel like I found a place to encourage & be encouraged.

Last edited by Angel-lover; 06-21-2003 at 09:24 AM.
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Old 06-21-2003, 10:58 AM   #5  
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I agree on the "understanding" thing. Most people figure "take an aspirin" or will say "oh, my knee hurts once in a while too".

My flare seems worse this morning - at first it seemed better but I'm still not up and at 'em. I've had the devil for quite a while. At first, they said it didn't matter because they treated both kinds of A. the same. Then about 8/9 years ago, I was put on Plaquenil and apparently I'm one of the people it works/worked for. I have been off it for 15 months now. Looks like I might be going back on. So as RA goes, I don't think mine's been particularly aggressive but nonetheless changed my life dramatically.

I also have OA - in fact, have had two knees replaced because of it. Also have arthritis in spine but that's also been good lately. Am taking Mobic for inflammation (doubled dose since last week) and take the supplement MSM which I've found helpful.

Am certainly wishing today I had called dr. yesterday for the "prednisone" rescue he offered me last week. Won't call him over the weekend though. Yesterday all seemed to be getting better. I think now it's flared up enough that just good weather won't help enough.

I've been able to lose 40 pounds in the past year while I was in only minimal discomfort but still have lots more than 30 to go.

I'm on Medicare as well - since last September.

I do have an Arthritis Foundation exercise tape which was helpful for a good while early on. Can no longer do the floor exercises in that one but I understand there is another one for people with even more restrictions. I can't do a lot of heavy exercising either and even in the water, I wouldn't say I overdo. I mostly like to hang in the deep water as it has helped my back so very much. But I do move my legs a lot which helps my lymphedema and I do stretching (very moderately) and arm curls and light stuff like that at home.

Anyway, we're expecting rain again today but should be better after that (hot and humid, if that's better). I hope you have a good, delightful weekend and can maintain the great loss you've had. That's a lot for a short time.
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Old 06-21-2003, 02:28 PM   #6  
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Sounds like you've had a rough 8 or 9 years. I'm sorry. My back problems (OA)are from car accident in '83. Been on disability since. I took those cordnizone shots in my back quite a bit & man, they shoot the weight on! I've finally settle on Lodine & manage with it. I'm also on Depakote, which puts weight on. Can't win, for losing, can we?!

Anyway, like I said earlier, the RA has really thrown me. I didn't know it could get so bad so fast! I have very good doctors, though, thank the Lord for that. They all cooperate with each other & take time to listen to me.

I wish I had a place to exercise in water. I believe I could do that. I DO have a jacuzzi tub, that helps on my worse days.

It's helped me, to talk to someone else, who really understands. Thank you so much. I hope you have a great weekend, & feel well.
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Old 06-21-2003, 04:12 PM   #7  
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Hi all,

Nice to hear from you two who really understand. I relly did have a very rough time when I was diagnosed . As bad as you feel one day you can feel twice as bad the next. I take plaquinil and methotrexate, 4mg of prednisone and motrin 800mg several times a day. My pain is more stiffness these days as opposed to sharp pain. My doctor wants me to try Remicade but I have been such a chicken about it. You are incredibly brave to take the infusion and take all that stuff so you will not have a reaction. I am surprised you only sleep ONE day away! I am so glad it helps you, it feels like a miracle when something actually helps.

I had my hip replaced a few years ago and that really changed my life. I have been able to exercise with the walking tapes in the last year because of the hip replacement. I guess that joint was something medicine was not going to help.. I have lost 25lbs so far and it is coming off a lot faster when I can do the exercises. I want to lose at least 35 more.

I am so sorry about your flare, Anagram! You have been lucky to be controlled with plaquinel. Call your doctor and get back on it before it gets any worse.


Hope you both have a great weekend and your pains are few.

Cheers
Rosanne
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Old 06-21-2003, 06:21 PM   #8  
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Jellybean....hang in there. It's rough, but we have to keep going. I decided whatever it took, I would. That's why I went on Remicade. I'm not at all brave. I stay scared......there's a lot of dangers to this drug. My dr keeps a very close eye on me, though, & I trust him. My stiffness had gotten to the point where I had to hold on to the walls, etc., to walk around the house. When you get desperate enough, you'll try just about anything.

I was on Motrin for several years for OA for my back.....now I take Lodine. Motrin was still doing well, just dr said I needed a change, because it could tend to aggravate stomach. I haven't heard of other medication you said you are on. How are you taking Methotrexate? I put mine in a needle & shoot it into orange juice to drink it. Dr said I could take shot, or drink it. I decided the orange juice was getting this needle. LOL I started out with the pill form, but it's a lot more expensive & I'm on several expensive meds, & no coverage for them.

You've had a good weight loss. That will help a lot. That's one reason I'm trying to lose. I'm not gonna say that's the only reason, because it's not true. One thing's for sure though, it does help with all physical problems.

Thanks for replying. You two have made my day just a little better.
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Old 06-27-2003, 11:23 PM   #9  
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Hi girls,

Just browsing around and discovered your posts. I have OA in my wrists and hands, as well as carpul tunnel and boy has it changed my life. I was just diagnosed with both a few months ago, but I feel certain I have been suffering from them for a couple of years. I just began seeing a rhematologist a couple of months ago and she did RA tests, but so far not that, although she did more blood work today to check again. Boy do my arms hurt. They stuck my 6 times to get 5 vials of blood for various tests. Lucky me...I have small veins. I really hate that is the only thing small on me! lol

Interesting reading about the different meds. I took vioxx for a couple of years, but quit working. I then took mobic, this week she switched me to bextra. Tried celebrex but caused me severe stomach pain. Lodine never worked for me.

Well, that's enough for tonight...my hands are swelling up and my needle pricks hurt. Ouch! I'm going to take my bextra and acetaminaphin (for the pin pricks).

Thanks for letting me join you. It does feel good to connect to people who understand.

Have a great weekend!

Debbie
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Old 06-28-2003, 12:11 AM   #10  
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Hi Debbie.....glad you joined us! Hope you'll post often...I come in every day. Don't have a lot to do. Also, get a lot of encouragement!

Sorry about your pain. I know how that is! Of course, all of us here know. I have problems with my hands due to RA, mostly can't seem to make my hands work right. They don't hurt though, like most of my body does. I know it must be very difficult trying to do things with pain in your hands & wrists. Hope you're able to rest tonight. I also hope they don't find RA. My OA is bad...but the RA has caused so much more problems. My nurse says I have the tiniest veins she has ever seen. LOL When I took my last Remicade treatment, they stuck me 7 times! The veins kept blowing, because the cathedar was bigger than my veins! She wants me to have a port put in....but I really don't want that, if I can help it. I guess it will really depend on how the next few treatments go. I'm not afraid of needles, but 7 times......sheesh!!

Hope you come & post often.....I was beginning to believe I was alone here! LOL Take care of yourself.
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Old 06-28-2003, 08:28 PM   #11  
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Hi, all. Flare has lessened but not yet all gone. Weather, extra inflammatory helped. Then, I finally remembered to double my supplement of MSM. This has been really helpful to me and seems to have done the trick again though I still have some residual swelling (but then I usually do). Felt good enough to play with granddaughters while we were away at DDs this weekend. I always say they're really my best medicine.
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Old 06-28-2003, 09:58 PM   #12  
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Hello girls,

Thanks for the nice welcome, angel lover. My arms are better today, but I have kinda laid low. Wow, 7 needle sticks. I don't feel so bad now. I meant to mention when I was writing last night that my doc has been talking to me on several visits about adding plaquenil but I am concerned about the eye thing. She said you have to have your eyes checked every 6 months. So, anyone taking it and finding it worth it? Also, I'm a little new to all of this, but what is MSM? What does it do? Anyone an advocate of coral calcium and gulcosimine...which I have been hearing about?

Thanks for the info and support!
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Old 06-29-2003, 08:01 AM   #13  
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Good morning Anagram & Debbie. So glad to hear from you.

Anagram....I'm wondering what MSM is also. Anyway, I'm really glad it helped you. Do you get these flare-ups very often? You may have already said, but I'm too lazy to go back & read.LOL
I agree, the best medicine is the grandchildren! Of course, I'm glad they have parents to take care of them. I have 11 & they are all beautiful (of course) & well behaved, most of the time. Of course, they do have their spells.

Debbie....I'm glad you are better. Sometimes I have to lay low, also...sometimes just plain "hide out" from the world. When I'm really bad, I come home & don't even answer the phone, unless it's an emergency. I let my answer machine screen my calls. As I said before, a lot of people don't realize how bad RA is. So, I just have to make sure I take care of myself, so I don't get worse.

I've heard of the Plaquil, but don't know of anyone that uses it. My pastor's wife's dr wanted to put her on it. She was too afraid because of the eye thing, too. He tried to reassure her that hardly ever happened. She is on Glucosomine, though, & says it helps her. It's not a miracle drug, but it does help. The Coral Calcium, I don't know anything about...sorry.

When I was reading of the pain in your hands & arms, I remembered something. I volunteer at a local christian television station, & one of the programmers sells a therapy lotion for arthritis. He has had to bring it to the station by several cases at a time! Everyone that comes in & trys it says it's great! They say when they are hurting (knee, hands, etc.)they can massage it on & get relief. I haven't tried it yet.....keep meaning to. I will find out the name of it this week & let you know. It's 2 bottles(each different) & only $5.00! Gotta be worth trying. It might help you, also...Anagram. You know, if it just gave you relief enough to rest at night, it would help. I hear compliments all day on it.....I'm crazy for not trying it yet. By the time I go home in the evening, though, I'm usually so tired (& hurting), I don't think of it. I'm there only 3 days a week for a few hours. It helps me to get out of the house.

I really like your dog & cat...here's you a little mouse to go with them.
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Old 06-30-2003, 07:54 PM   #14  
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Hi and welcome, Holly. The MSM is a supplement easily available. I started it after hearing James Coburn talk about how it helped him (on tv). I continued taking my meds and did talk to dr. about it.

I have been on Plaquenil. Started on it about 8 years ago. I've currently been off it for 15 months and was off it once before for a year or so. I did have a time when they were concerned about my eyes but it turned out to be something different. I'm also concerned about that because I think it can happen even years after you're off it. Both my dr. and eye dr. say they don't know anyone it's affected that way but I do. I have a friend who has lost her sight and she'd never talk much about it or how it happened. But a couple of years back she told me it was from medicine she took for RA years ago. She says it worked, she didn't have RA after that and the sight loss didn't show up for quite some time after that (although it was there 20 odd years ago when I first met her). She doesn't remember if it was Plaquenil or not. Dr. tells me they used to give it in much higher doses. Yes I had to get eyes checked every six months and they did an extra test (which of course my insurance didn't pay for - might now that I'm on medicare).

Anyway last bloodwork in March showed no inflammation, SED rate down, etc. so I think the Plaquenil has helped as well as the MSM. It does not help everyone so I was lucky there I guess. Last month when I saw Dr. he said even though I felt rotten, there was very little swelling so he just told me to double the Mobic. I've tried or been on so many ANSAIDs over the years. Some helped, some didn't. I just get so tired of the fatigue. I understand not everybody gets that part and they did last year put me on thyroid med. That helped for a while but not enough.

Sometimes I think the best thing would be a few stiff drinks but I almost never have any alcohol because of the meds.

I only have two grandchildren. Both girls, one's 7 and the other will be 3 in August. I would like to have more but it doesn't look like that's happening so I'll just be grateful for these two.
well, off to enjoy the evening (or what's left of it) on the patio.
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Old 07-02-2003, 10:48 PM   #15  
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Hi all,

I was just peeking in for a bit to read a little. My hands have really hurt me this week..i've had a lot to do. They hurt right now, so I will have to write more later. Just wanted to say hi and thanks for the info. I'll come back soon. Hope yall are having a good week
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