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6/1/10 12:27 A

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michelle well done on your 5k.i to have problem pouring milk from 2 and 3 litre bottle as i can not do it one handed any more need to hands like you michelle it is so annoying.

Edited by: MUSIC66 at: 6/1/2010 (00:30)
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TRAINOF4's Photo TRAINOF4 Posts: 2,650
5/31/10 9:11 P

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emoticon Congrats Michelle on your 5K! SO happy to hear that the PT at the end of the race was helpful & gave you some pain relief. Yaay you! I am sorry about the milk thing tho. I understand how frustrating that is for you :(

Today was my last infusion for the time being. Go back to hem/onc for review of labs & see how things are going. Hoping the get better news this time. Will have to insist on a PICC line if they need to do anymore infusions or stuff like that. The only IV they could get going today was one used for -literally- infants. It took twice as long to get my meds.

Have a good week everyone. emoticon

Stay calm and carry on.
1888MICHELLE's Photo 1888MICHELLE Posts: 4,529
5/31/10 7:49 A

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Hey everyone!! I can't hold a 2L carton of milk in one hand anymore. I can't believe it!! I know it's been sore while doing that for a couple of months, but now I'm a strictly 2-hand kind of gal. I no longer have the same spread/reach while playing the piano...I've lost 2 keys worth. GRRRRRR. I can't wait to see my rheumy next month.

On the good side...I did a 5K yesterday, but didn't push myself because of my foot. They had a physiotherapy stand at the end of the race, so I took advantage of it. The therapist asked what parts hurt, so I told her about my hip and my bad foot. Instead of stretching out the foot, she stretched out the calf. Oh my goodness!!! The pain relief was amazing. I knew my calf was stiffening because I haven't been able to flex the foot and tend to the calf, but I had no idea of the relief I could get. My foot feels so much better!!!

Michelle


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5/31/10 12:12 A

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Still waiting for surgery dates .

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5/31/10 12:11 A

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the weather still cold and miserable and joints are painful tody.

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TRAINOF4's Photo TRAINOF4 Posts: 2,650
5/30/10 11:31 P

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Elisabeth, that hormone treatment is a fascinating idea. Sorry it stopped working emoticon

Bookwrm your play sounds like fun - hope it's a good laugh. Sounds like it might be bittersweet in some ways. Looking forward to hearing your review!

Music - sorry about your weather. It's been hot & humid here. I'm not a summer person & it's just starting. yuck - but I guess it's not so bad. We've had some rain during the nights & so it has time to sink into the ground properly. The farmers' corn is growing like mad! I nver have gotten my tomatoes into pots or the ground. Bummed...but there's always next year!

Happy Monday everyone - remember to smile! As Dolly Parton said in the movie '9-5' "Smile! It improves your face value!" emoticon

Stay calm and carry on.
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5/30/10 1:54 A

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and it is windy.

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5/30/10 1:53 A

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the weather is cold here.

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UMBLAH21's Photo UMBLAH21 Posts: 116
5/29/10 8:36 A

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Hi guys, just thought I would join in the conversation. I was diagnoised when I was 19, am 24 now. I still do not have my RA under control. I have tried several DMARD's, NASID's, Antibiotic treatment, Prendisone, herbal remedies, and more but still havwe not found anything to help me.

I took hormones for 2 years. They worked well for about a year. I would rub a hormone cream concocted of estrogean, estrodol, and progestrion on every night. Took a while to find the correct dosage but it worked great for a while. The idea behind the hormones is that pregnancy makes RA go into remission. So the cream somewhat tricked the RA into thinking I was pregnant. It worked great for that year, I thought I had found my cure, but sadly it stopped working. If anyone is interested about the hormone treatment let me know.

I have a very aggressive type of RA so the doctors have said. I am going to try the injectables, biologicals... don't have much choice....want my life back. Hope everyone has a good day today. Pain free and happy. :)

Elisabeth



Much love all.

Elisabeth


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5/29/10 2:25 A

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Have a great week end.

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5/29/10 2:23 A

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i read those bites of paper but never understand them.i have never had any of the bad side affects they say about.

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TRAINOF4's Photo TRAINOF4 Posts: 2,650
5/29/10 12:19 A

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Yes, don't worry too much about the MTX. The drug companies & pharmacies HAVE to share that info. Even if only 1 person in hundreds of thousands dies as direct result of the medicine...sometimes the fact sheets can be scary. But it IS good to know what to look out for.

Your doctor will be testing your blood & urine to be sure there isn't anything going wrong. Hope that the results will be everything your hoping for!

Michelle -thanks for the info about gold. It might be just the ticket for me. Hope your foot is making improvement every day. emoticon

Stay calm and carry on.
IWILLDOIT35's Photo IWILLDOIT35 Posts: 109
5/28/10 2:32 P

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Helpful info on DMARDs. I'm supposed to start taking 4 Methotrexate pills once a week and work up to 6. When I picked up the medication today the first line on the information sheet told me that the medicine may cause fatal side effects. I feel a little better knowing that many of you are or have been on it before and have survived!! :)

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1888MICHELLE's Photo 1888MICHELLE Posts: 4,529
5/28/10 8:05 A

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Foot is still tender. Haven't got an appointment with the plastic surgeon yet, but the dreams are getting more frequent, so I'm not happy.

Train....gold injections are apparently coming back into "fashion", so if they work for you, talk to your doctor.

I'm starting the Peer to Peer Mentoring Program tomorrow. It should be an exciting medical study. I'm being trained to help people who have just been diagnosed. I'm really looking forward to this. Funny thing, but one of the women in the ASMP (Athritis Self Management Program) is also in the same study. We didn't find out until last night at our last program meeting. So it will be kind of fun going in with someone you know.

Michelle


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TRAINOF4's Photo TRAINOF4 Posts: 2,650
5/28/10 2:31 A

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I had such good results w/oral gold treatment. It's not used anymore apparently.

Can't sleep -again. So I'm up with the laptop, a cat in my lap & watching Cheers reruns. Hope ya'll have had a more restful night emoticon

Stay calm and carry on.
MUSIC66's Photo MUSIC66 SparkPoints: (0)
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5/28/10 12:55 A

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when do you see that plastic surgan? good luck for when you have appointment.

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5/28/10 12:53 A

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michelle hows your foot going.

Edited by: MUSIC66 at: 5/28/2010 (00:53)
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5/27/10 7:52 P

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thanks for that info i rememer now i was on dmards i was on methatrexate for a while one tablet on a sunday.

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1888MICHELLE's Photo 1888MICHELLE Posts: 4,529
5/27/10 7:31 A

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DMARDs are the disease modifying medications. I'm only on anti-inflammatories. Things like methatrexate and gold are DMARDs.

Michelle


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5/27/10 12:45 A

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its cold today.

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5/27/10 12:45 A

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michelle what DMARDS i dont think i have been on them either.

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1888MICHELLE's Photo 1888MICHELLE Posts: 4,529
5/26/10 1:18 P

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So I'm sitting in my Arthritis Pain Self Management program the other day, and all of a sudden it hits me out of the blue!!! I've had RA for 25 years, and I've only been on anti-inflammatories....never on DMARDS!!! What the heck??? I've been living in blissful ignorance...the pain has always been there....the flare ups come and go...this has been a normal state since my early teens. I've never stopped to question my treatment. Now I'm stopping. I've got a list of question for my rhuemy, and I want answers. I see him in a month, so I can hold off until then. But geez louise....talk about brain dead!!!

Michelle


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IWILLDOIT35's Photo IWILLDOIT35 Posts: 109
5/26/10 7:49 A

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Thanks for responding! I guess I'm in the right age range. Looking forward to seeing the doctor today so that I have an action plan and don't feel so helpless. Have a great day everyone!

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5/26/10 12:25 A

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it windy and cold today.

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5/26/10 12:24 A

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i was about 35 when i found out i had ra 42 when i found out about oa.

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5/25/10 8:41 P

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emoticon I was 44 years old and lots of Prednisone is what initially worked to reduce the inflammation (and pain). It's not very good as a long-term solution but it got me from walking holding onto someone's arm to walking on my own within a few weeks.

My name is Joanna not Joanne, please and thank you.

Dundas, Ontario, Canada
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Black Panthers Sleigh Bell Slim Down Winter 2019 Challenge
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RESOLUTE on sticking with the things that work, e.g. tracking, drinking my water, exercising, etc.

RENEGADE by limiting unhealthy food and moving my body as much as possible.


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IWILLDOIT35's Photo IWILLDOIT35 Posts: 109
5/25/10 11:07 A

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Hello all! I'm so happy to see a Spark Team for RA. I was diagnosed with RA yesterday. I'm going in to see my doctor and discuss treatment tomorrow. I feel a bit lost. I'm 35 and thought I was too young for RA. I would love to know how old others were when they were diagnosed. Also, what was your first step to get it under control?

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UMBLAH21's Photo UMBLAH21 Posts: 116
5/25/10 9:39 A

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Feeling a bit better today. Hope everyone has a good one. It is soooo ho here already 90 yikes.

Much love all.

Elisabeth


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5/25/10 1:13 A

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windy also.

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5/25/10 1:12 A

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it is cold grey and gloomy today.

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UMBLAH21's Photo UMBLAH21 Posts: 116
5/24/10 10:05 A

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Hope everyone is having a good moorning.

How is your cold doing Angel?

Much love all.

Elisabeth


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5/24/10 1:00 A

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its cold.

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5/24/10 12:59 A

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Its gloomy today and it rained.

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5/23/10 7:36 A

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the weather was nice today.

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5/23/10 7:36 A

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went to a bbq tonoght.

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ANGEL1066's Photo ANGEL1066 SparkPoints: (0)
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5/22/10 11:39 P

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IT STORMED HERE LAST NITE ALSO. BOTH CATS JOINED US IN THE LIVING ROOM & HUDDLED ROUND MY HUSBAND'S FEET. GUESS HE IS THE GUY IN CHARGE OF STORMS, AT LEAST IN CAT MIND.

"Mountains DO move...One stone at a time." ~Rick Beneteau
Do not let what you cannot do interfere with what you can do. - John Wooden, Hall of Fame college basketball coach
With exercise, doing some is always better than doing none. - Spark article
MAKE THE BEST FOOD CHOICES YOU CAN TODAY - and then, try it again tomorrow!- Dr. John La Puma, M.D.


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5/22/10 12:29 A

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we got 35 mm of rain but today it is sunny.

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5/22/10 12:28 A

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it stormed here last night and i poor new puppy got a fright and ran under the table and yelp .

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RESCUEME123's Photo RESCUEME123 Posts: 55
5/21/10 11:31 A

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I too was worried about getting sick while taking the mtx and embrel. My sweet son gave me a cold for mother's day. My first sickness since I started on the meds. I was really nervous as the meds had finally kicked in and I didn't want to have to stop them until I could shake the cold. Fortunately, most of the cold symptoms were gone by Friday night which is when I take the weekly meds so I didn't have to skip any. I never really got too sick either which was good as I was kind of spooked by what I was told.

I saw my doctor yesterday and she confirmed that my lungs were clear. The best news from the visit is that she is finally going to taper me off the prednisone! So in a couple of months I should be done with them, barring any flare! (fingers crossed)

I will also be able to start therapy in a few weeks. I hope to be able to use my hand again soon!

TINGRAE66's Photo TINGRAE66 Posts: 52
5/21/10 10:01 A

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Mine is $20 also...but my doctor gave me an embrel card..and with that they pick up the other half of it...so it doesn't cost me anything!!!! And No I am not on state assistance...Jodi

Edited by: TINGRAE66 at: 5/21/2010 (10:01)
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UMBLAH21's Photo UMBLAH21 Posts: 116
5/21/10 9:51 A

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Today my daughter is having her birthday at her preschool. She is getting so big. She will be 3 years old tomorrow but having the party today so she can see her friends. :) The new picture is of her this morning. Mommy's sweetness.

Much love all.

Elisabeth


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5/21/10 12:42 A

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Its gloomy and raining.

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5/21/10 12:41 A

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never tried the injections .

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5/21/10 12:37 A

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I hear you there. The Enbrel has stopped the signs of active disease in me. All the blood counters are down. I'm basically just dealing with old damage, of which I have a bunch, but still, lots better than the ol' wolf I used to feel gnawing away at whatever part of me felt tasty to him at the time. Don't know how long it will keep working, but I am very glad of the respite, & using the time to try to lose as much weight as I can & get as healthy as I can manage otherwise to ease the burden on my joints, maybe make myself less tasty to the wolf. New stuff is coming along all the time. Hopefully another will keep me going when this one's effectiveness fades. One day at a time, do the best you can do.

"Mountains DO move...One stone at a time." ~Rick Beneteau
Do not let what you cannot do interfere with what you can do. - John Wooden, Hall of Fame college basketball coach
With exercise, doing some is always better than doing none. - Spark article
MAKE THE BEST FOOD CHOICES YOU CAN TODAY - and then, try it again tomorrow!- Dr. John La Puma, M.D.


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UMBLAH21's Photo UMBLAH21 Posts: 116
5/20/10 3:36 P

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Hi Angel, that is great that you are doing so well with the shots. I feel a bit more confident in tryig it now, it is just scary ya know, especially having a baby, the risks.... Yeah, it would be $20 through my insurance also. Maybe I will give it a try, I just need to do something, I don't want to be so dibilated by the time I am 30 that I can't walk, ya know. Just scared I guess....confused...hurting...tired of hurting.

Much love all.

Elisabeth


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5/20/10 2:10 P

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I'm in my third year taking enbrel shots & this is my first cold. They told me all that scare stuff about lowering resistance also, but I find I am actually healthier overall. I work with preschool & elementary age kids every week thru my church, so am exposed to all the germs. Used to get sick a couple times each school year, but not since Enbrel. I do avoid as many especially germy spots as I can - no indoor basketball games or wrestling meets during flu season, for instance. I take my yearly flu shot, & the N1H1 too last year. Also got a pnuemonia shot. The Enbrel works great, not hard to take the shots - I do 2 a week. I refused the Mtx they pressed on me - it has bad side effects also, they all do, & I had already tried it with no benefit. So I just take a little prednisone with the Enbrel, & some supplements to counter what side effects I can. With my present cold, I am skipping the shots until it is gone. So far I can still move OK. If you need the relief & have enough insurance, I say it is worth the risk. It is very pricey - $10000 for a 3 month supply in my case. Fortunately we have good insurance thru the railroad & I only pay $20.

"Mountains DO move...One stone at a time." ~Rick Beneteau
Do not let what you cannot do interfere with what you can do. - John Wooden, Hall of Fame college basketball coach
With exercise, doing some is always better than doing none. - Spark article
MAKE THE BEST FOOD CHOICES YOU CAN TODAY - and then, try it again tomorrow!- Dr. John La Puma, M.D.


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UMBLAH21's Photo UMBLAH21 Posts: 116
5/20/10 1:17 P

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Rescueme, I have been thinking about taking something like it. I am just afraid of all of the side effects. I am still very young and have a young child who brings all sorts of germs home. The doctor said that the shots lower your immune system and even a cold could kill someone taking the medicine? Do you know how long one can take enbrel?

So many questions.........

Much love all.

Elisabeth


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RESCUEME123's Photo RESCUEME123 Posts: 55
5/20/10 11:00 A

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Hi Elisabeth,

Welcome! I am also new to the whole arthritis thing. It started at the end of January and I began taking mtx right away. I didn't see much improvement until I added the embrel 4 weeks ago and then I saw an immediate improvement and didn't have any problems with the injections. I see my doctor today and hope I can cut back on some of the other meds now that the embrel has kicked in.

Good luck to you!

UMBLAH21's Photo UMBLAH21 Posts: 116
5/20/10 10:36 A

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Hi everyone, hope everyone is having a good day. sorry to hear about your ankle michelle. I am new to the group.

I have lots of questions. Um, I have been having a rough go with the RA and wanted to ask everyone about the enjectables like enbrel, do they work...how long can you take them... and any other info anyone is willing to offer.

I am 24 years old and have a 3 year old child which is why I have been afraid to take the shots because of the side effects.

Thanks everyone. :)

Elisabeth

Much love all.

Elisabeth


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1888MICHELLE's Photo 1888MICHELLE Posts: 4,529
5/20/10 9:07 A

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Hey Music...glad the docs are finally going to be taking care of you!!


Michelle


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