Tattoo For U

Question:

- Hide quoted text — Show quoted text ->Too late! I am that high! LOL. We’ll porbably just add the arava to my current >meds and not take any away. > This is all still new to me.  For the RA, I started with Arava in > October, added Enbril in December, then mtx pills in February, > switched to mtx shots in March (.4 cc’s, whatever that is in mg’s). > The combination seemed to help, but I was tapering off prednizone at > the same time, then they had to take away Vioxx for the OA because my > blood pressure went sky high. > This is definitely not a controlled, empirical experiment! > Paul Rad

Hi Paul,  Your RD has really been trying to control what you have.  Do you have much joint damage or other problems? Harv

Response:

Krissy said, "the tattoo has given my immune system something else to do. We’ll see!" So you did it???? :O)  I must have missed the post! COOL!  You gonna post a picture??? Amy Amy I live in a world of mystery and intrigue. I teach kindergarten. Come see the "Princess of the Puddle" at http://hometown.aol.com/lkgoddess/index.html

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>So you did it???? :O)  I must have missed the post! COOL!  You gonna post a >picture???

I already did silly! http://www.arthritisinsight.com/community/photo/page40.html ~Krissy Akron, Ohio http://arthritisinsight.com Knowledge is power…support is essential. My daughter, Student Ambassador: http://members.aol.com/krissyjo/ambassador.html See my pond: http://members.aol.com/KrissyJo/ponds.html

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>I take Enbrel w/o mtx, and I’m even down to one shot a week. I’ve got my >fingers crossed nothing funky happens!!! lol! >Melissa

Oh Melissa!  I’m crossing my fingers too sweetie! Char "Remember, I’m pulling for ya’.  We’re all in this together."  Red Green

Response:

>Hi Paul,  Your RD has really been trying to control what you have.  Do >you have much joint damage or other problems? >Harv

Hi Harv, I am fortunate that I don’t have bent or twisted joints, or nodes like some of you.  I can hardly move when I get up in the morning, and I live with pain, 24/7/365. The RA is in my hands & feet.  I have pain and stiffness, and my RD examines the hands & feet every visit, and always finds areas of swelling that concern him.  My hands swell and hurt and lose their grip; the feet hurt a lot.  Sometimes I can’t walk. The OA is in the upper and lower back, shoulders and elbows.  I have slipped a disk a few times in the last 20 years, other disks are narrowed, and I have had surgery to remove spurs from one shoulder.   I just started seeing a RD last year, around April.  He didn’t put me on the DMARDs until I started the Arava in October. Actually, I tried plaquenil first, but I got a rash from it. He started me on the Enbrel in December, mainly because of the upcoming ban or whatever you call it.  Then I started the mtx in February, but the pills gave me mouth and tongue sores even though I was taking folic acid, so I switched to the shots. Between the prednizone (10 mg), the Vioxx (50 mg), the pain meds, and the DMARDs, I was experiencing a general reduction in overall pain. But then the blood pressure went up, so they cut out the Vioxx. I’m allergic to sulfa, so I can’t take Celebrex.  I don’t have any other alternatives because of bleeding stomach ulcers, so I’m taking more pain meds and have ramped up the prednizone again. Like I said, I have a general reduction of pain in the hands & feet, but I don’t feel like a teenager or anything, and I still experience severe pain during periods of physical activity.  I like to do woodworking in my garage, but I have just about eliminated it over the last 3 months.  That really sucks — woodworking was my escape; my therapy.  I also travel a lot for work, and that can be tough.  Last month, for the first time in my life, I got a wheelchair ride in Chicago OHare airport.  It was really depressing.  I felt like it was the turning of a page — like I had stepped through a door and could never return. As for my RD and the nurse practitioner, they are really special medical people.  It doesn’t matter how busy or tired they are, or how late in the day it might be, they always sit down and spend all the time in the world with each patient.  They ask a zillion questions, they listen to everything the patient wants to say, then they ask follow-up questions.  There have been times when I needed to see them immediately, like right after a road trip, and they always accommodated me.  They have gone as far as to call in a prescription for me in some far-off city.  They make sure that I understand that I should stick to the prescribed doses on the meds.  Every so often, I lay off the pain meds to see if I have any cravings, the way I used to crave a cigarette.  So far, I haven’t experienced any cravings — just pain.  I use darvocet first, then vicodin if necessary.  They don’t take all the pain away, but they take the edge off.  I also keep a few percocets on hand.  If I take two percocets, I can be blissfully pain-free for a couple hours — but I’m also stupid during that time, and I don’t want to get hooked on them.  So I only use them occasionally. My internal medicine doc and my GI are good, competent doctors, to be sure — but they aren’t in the same class as the RD & nurse practitioner.  I try to set my appointments for as late in the day as possible, so I don’t miss too much work.  The RD spends a lot of time with me and physically examines me every single time, even if it’s after 5:00.  The GI and the IM docs rarely examine me, and they tend to give me the bum’s rush so they can go home at quittin’ time.  All the GI wants to do is order hospital procedures, and the IM sits in a chair and rips prescriptions off his pad after the cursory stethoscope thing. Anyway, sorry for the long ramble.  Thanks for asking and for listening. Paul Rad – Hide quoted text — Show quoted text -> This is all still new to me.  For the RA, I started with Arava in > October, added Enbril in December, then mtx pills in February, > switched to mtx shots in March (.4 cc’s, whatever that is in mg’s). > The combination seemed to help, but I was tapering off prednizone at > the same time, then they had to take away Vioxx for the OA because my > blood pressure went sky high. > This is definitely not a controlled, empirical experiment! > Paul Rad

Response:

> >Hi Krissy,   Have you started Arava yet? > Nope….giving the increased azulfadine a chance. I see RD on the 23rd if both > of us agree I am no better I’ll start the arava. > I hate to jinx myself but I have just a bit better the past few days. Maybe the > azulfadine is kicking in or the tattoo has given my immune system something > else to do. We’ll see! > ~Krissy > Akron, Ohio

LOLOL  At one time, I was up to 6-500s on the azulfadine.  It was Walts dmard for a period of time.  It might make a really good combo for you with Arava and not have to go up as high as I did with it. Harv

Response:

>At one time, I was up to 6-500s on the azulfadine.

Thats the dose I am on now, along with plaquenil and pred. >It might make a really good combo for you >with Arava and not have to go up as high as I did with it.

Too late! I am that high! LOL. We’ll porbably just add the arava to my current meds and not take any away. ~Krissy Akron, Ohio http://arthritisinsight.com Knowledge is power…support is essential. My daughter, Student Ambassador: http://members.aol.com/krissyjo/ambassador.html See my pond: http://members.aol.com/KrissyJo/ponds.html

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I take Enbrel w/o MTX. but still on NSAID and pred. :O( Someday maybe!! Amy I live in a world of mystery and intrigue. I teach kindergarten. Come see the "Princess of the Puddle" at http://hometown.aol.com/lkgoddess/index.html

Response:

I take Enbrel w/o mtx, and I’m even down to one shot a week. I’ve got my fingers crossed nothing funky happens!!! lol! Melissa – Hide quoted text — Show quoted text ->I take Enbrel w/o MTX. but still on NSAID and pred. :O( >Someday maybe!! >Amy >I live in a world of mystery and intrigue. I teach kindergarten. >Come see the "Princess of the Puddle" at >http://hometown.aol.com/lkgoddess/index.html

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> >Is anyone taking Enbrel without MTX? > I know for a fact our poster girl, Gloria is only on Enbrel.  That is the only > thing she takes for her RA. > Char

Me too.  All I take for my RA.   Dropped atleast 4 prescriptions. Harv

Response:

Tell me about the Enbrel fade… does it just quit working? How many has this happened to? Gloria what about you? I remember you were doing so well. does it still work for you? Has anyone heard of a reason this is happening? Been gone so long I didn’t realize. Kathy

– Hide quoted text — Show quoted text -> I’ve only been on Enbrel without mtx since I was breastfeeding a newborn > when diagnosed. Even managed to get off steroids quickly (prednisone made me > a psycho). I am getting the Enbrel fade now after 20 months, although my rd > says it may just be the disease progressing. After I do research on Remicade > and breastfeeding I may switch. > Rebecca Ford > Is anyone taking Enbrel without MTX?  I have started Enbrel again after > being off of it for 10 days.  I have not started back on the MTX and so > far it does not seem to make any difference.  Am I setting myself up for > another flare if I do not start the MTX? > Dawn

Response:

>Too late! I am that high! LOL. We’ll porbably just add the arava to my current >meds and not take any away.

This is all still new to me.  For the RA, I started with Arava in October, added Enbril in December, then mtx pills in February, switched to mtx shots in March (.4 cc’s, whatever that is in mg’s). The combination seemed to help, but I was tapering off prednizone at the same time, then they had to take away Vioxx for the OA because my blood pressure went sky high. This is definitely not a controlled, empirical experiment! Paul Rad

Response:

> >My Sjogren’s is flaring more frequently, >too. > When I was on Enbrel I had more Sjogren’s problems. > ~Krissy > Akron, Ohio > http://arthritisinsight.com > Knowledge is power…support is essential. > My daughter, Student Ambassador: > http://members.aol.com/krissyjo/ambassador.html > See my pond: http://members.aol.com/KrissyJo/ponds.html

Hi Krissy,   Have you started Arava yet? Harv

Response:

>Hi Krissy,   Have you started Arava yet?

Nope….giving the increased azulfadine a chance. I see RD on the 23rd if both of us agree I am no better I’ll start the arava. I hate to jinx myself but I have just a bit better the past few days. Maybe the azulfadine is kicking in or the tattoo has given my immune system something else to do. We’ll see! ~Krissy Akron, Ohio http://arthritisinsight.com Knowledge is power…support is essential. My daughter, Student Ambassador: http://members.aol.com/krissyjo/ambassador.html See my pond: http://members.aol.com/KrissyJo/ponds.html

Response:

>My Sjogren’s is flaring more frequently, >too.

When I was on Enbrel I had more Sjogren’s problems. ~Krissy Akron, Ohio http://arthritisinsight.com Knowledge is power…support is essential. My daughter, Student Ambassador: http://members.aol.com/krissyjo/ambassador.html See my pond: http://members.aol.com/KrissyJo/ponds.html

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I’ve noticed in the past few months that my flares and pain have increased. I shouldn’t bitch because I’m still so much better than before I started Enbrel. I can lift my kids, drive and even teach  water aerobics classes. But I’m having problems with doing fine motor tasks , not to mention the fact that my energy levels are low due to needing more energy to deal with daily life in ever-increasing pain. My Sjogren’s is flaring more frequently, too. I do think that if Remicade wasn’t an option I’d stay on Enbrel until things got really ugly. Not there yet, but hoping to avoid going there. Rebecca – Hide quoted text — Show quoted text -> Tell me about the Enbrel fade… does it just quit working? How many has > this happened to? Gloria what about you? I remember you were doing so well. > does it still work for you? Has anyone heard of a reason this is happening? > Been gone so long I didn’t realize. > Kathy > I’ve only been on Enbrel without mtx since I was breastfeeding a newborn > when diagnosed. Even managed to get off steroids quickly (prednisone made > me > a psycho). I am getting the Enbrel fade now after 20 months, although my > rd > says it may just be the disease progressing. After I do research on > Remicade > and breastfeeding I may switch. > Rebecca Ford > > Is anyone taking Enbrel without MTX?  I have started Enbrel again after > > being off of it for 10 days.  I have not started back on the MTX and so > > far it does not seem to make any difference.  Am I setting myself up for > > another flare if I do not start the MTX? > > Dawn

Response:

Some of us are on Enbrel and another Dmard instead of mtx…I’m trying Arava with Enbrel and so far so good (3 weeks and feeling better).  My doc didn’t know you could use Enbrel with oanything other than mtx, but I covinced him to let me try it after I read that others were doing so. Jean Mc. – Hide quoted text — Show quoted text – > Is anyone taking Enbrel without MTX?  I have started Enbrel again after > being off of it for 10 days.  I have not started back on the MTX and so > far it does not seem to make any difference.  Am I setting myself up for > another flare if I do not start the MTX? > Dawn

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> After I do research on Remicade >and breastfeeding I may switch.

Dr. Hale believes that remicade is like enbrel in that the structure is too large to pass through the breastmilk…  My only hesitation is that supposedly it works best with mtx, which of course I can’t take while nursing life is what happens when you’re making other plans…

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> Tell me about the Enbrel fade… does it just quit working? How many has > this happened to? Gloria what about you? I remember you were doing so well. > does it still work for you? Has anyone heard of a reason this is happening? > Been gone so long I didn’t realize.

Oh there are a few that experienced a loss of effectiveness with Enbrel.  The joint swelling and stiffness started to return many intermittent flares.  It was still somewhat effective but I was clearly in a downhill slide, so I switched to Remicade. Gloria hasn’t been posting as much, but last I heard she was still doing great.  As you can see from the responses; many people are doing well on Enbrel alone. I am somewhat of an unusual case because my resistance is so high.  I had to take Enbrel with 30-35 mg of mtx, so don’t judge the long-term effectiveness from my experience. — MZ

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I am not on prednisone at the current time.  I did the push thing for six days and so far am only having the normal knee and ankle pain that I have even when I am on the prednisone. Dawn – Hide quoted text — Show quoted text -> Is anyone taking Enbrel without MTX?  I have started Enbrel again after > being off of it for 10 days.  I have not started back on the MTX and so > far it does not seem to make any difference.  Am I setting myself up for > another flare if I do not start the MTX? > Dawn > It usually takes about 3 weeks for a flare to show up after stopping > mtx.  I have never been able to do Remicade or Enbrel without mtx.  I > tried a 3 mg reduction in mtx with Enbrel and had a severe flare. I have > had a little more luck reducing mtx with Remicade.  Are you still on > prednisone? — MZ

Response:

Is anyone taking Enbrel without MTX?  I have started Enbrel again after being off of it for 10 days.  I have not started back on the MTX and so far it does not seem to make any difference.  Am I setting myself up for another flare if I do not start the MTX? Dawn

Response:

>Is anyone taking Enbrel without MTX?  

I know for a fact our poster girl, Gloria is only on Enbrel.  That is the only thing she takes for her RA. Char "Remember, I’m pulling for ya’.  We’re all in this together."  Red Green

Response:

I’ve only been on Enbrel without mtx since I was breastfeeding a newborn when diagnosed. Even managed to get off steroids quickly (prednisone made me a psycho). I am getting the Enbrel fade now after 20 months, although my rd says it may just be the disease progressing. After I do research on Remicade and breastfeeding I may switch. Rebecca Ford

– Hide quoted text — Show quoted text -> Is anyone taking Enbrel without MTX?  I have started Enbrel again after > being off of it for 10 days.  I have not started back on the MTX and so > far it does not seem to make any difference.  Am I setting myself up for > another flare if I do not start the MTX? > Dawn

Response:

Since I am unable to take MTX I have only been on Enbrel.  I was off Enbrel for almost a month before I started flaring but felt better after only one shot.  Unfortunatley I only two shots before I had to stop again. And……dare I say it?????  No, I’m gonna wait a little longer.  Don’t want to jink myself!  But so far soooooo…..wait…..you can guess the rest. But to answer your question, I did OK on Enbrel alone, but I still needed steroids to control the pain. DianeW

– Hide quoted text — Show quoted text -> Is anyone taking Enbrel without MTX?  I have started Enbrel again after > being off of it for 10 days.  I have not started back on the MTX and so > far it does not seem to make any difference.  Am I setting myself up for > another flare if I do not start the MTX? > Dawn > It usually takes about 3 weeks for a flare to show up after stopping > mtx.  I have never been able to do Remicade or Enbrel without mtx.  I > tried a 3 mg reduction in mtx with Enbrel and had a severe flare. I have > had a little more luck reducing mtx with Remicade.  Are you still on > prednisone? — MZ

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> Is anyone taking Enbrel without MTX?  I have started Enbrel again after > being off of it for 10 days.  I have not started back on the MTX and so > far it does not seem to make any difference.  Am I setting myself up for > another flare if I do not start the MTX? > Dawn

It usually takes about 3 weeks for a flare to show up after stopping mtx.  I have never been able to do Remicade or Enbrel without mtx.  I tried a 3 mg reduction in mtx with Enbrel and had a severe flare. I have had a little more luck reducing mtx with Remicade.  Are you still on prednisone? — MZ

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