Re: Remicaid vs. Humira...everything else has failed! long note

[Guest guest]

I'm just a caregiver, so I don't have any experience with either of these drugs, but wow, my heart goes out to you. Don't give up, ok? Keep fighting!

From: Rheumatoid Arthritis [mailto:Rheumatoid Arthritis ] On Behalf Of mpalevsky_bunnyloverSent: Wednesday, March 29, 2006 7:08 PMRheumatoid Arthritis Subject: Remicaid vs. Humira...everything else has failed! long note

I am 39 years old and have been diagnosed with RA since 2001. I believe I have had it since I was a teen, but it was never diagnosed and I had long remissions.My RA just keeps getting worse and worse and I am at my wits end! I was on Enbrel for 1.5 years, along with MTX, Bextra, Skelaxin and Prednisone. I had flares but things were basically under control and I was working. Last year, the efficacy of the Enbrel ended for me. At about the same time, Bextra was taken off the market and I was suddenly in horrendous shape. The Rheumy tried all sorts of things with no sucess. I couldn't sleep, and spent most of the time rocking myself because I didn't know how to stop the pain. On July 1, I stopped working because I couldn't even bend my arms to get them up to the keyboard, let alone type. I am the sole bread winner for my family and we have 6 children.The Rheumy gave me the option of joining one of the drug studies he was doing and I decided to go with it. I started on Abatacept infusions and began to get some relief. Suddenly, my back pain was much worse and I couldn't sit, stand or lay down without pain. Turns out that the facet joints in my back had deteriorated so badly that one of them cracked and opened and then it collapsed down on the next few levels of my spine. In Dec, I had back surgery where they did a laminectomy and used rods and screws to put things back together.Well...the surgery made my RA pain flair even worse than it was before. I ended up with pulmonary effusions (fluid on my lungs) that they said was likely from the RA. The Dr. started me on Oxycontin for the pain and I finally felt that I was getting some relief, at least to the point that I could tolerate the pain.I have healed from the surgery, but the Abatacept infusions are not giving me any pain relief at all. When they feel my joints for swelling at each appointment, they are all swollen. It is as if I am not on any meds at all. The Dr. added Lodine XL to my list of meds.I started going to a pain management center and they changed the oxycontin to Avinza and also added Lyrica for the pain. I also noticed than since surgery, I was having these tremors and jerking movements and at times would have difficulty with my speech. I was sent to a neurologist and am now diagnosed with multi focal myoclonic seizures which could be from the surgery but can also be caused by the immune system. This Dr. now added Trileptal to my meds. Of course I am still on MTX and Skelaxin plus meds to try and help me sleep.The Rheumy did a bone scan and found that I had considerable bone loss for someone my age and started me on Fosamax. I had xrays of my hands and wrists and it shows a build up of crystals that they believe are hydroxyapaptite crystals and said follow up would be needed. I just had an mri of my hand and wrists but no results yet.Meanwhile, my RA is still flaring and my husband and I have decided that the Abatacept is no longer providing me any relief at all, and its time to try something else. My options are Humira or Remicaid and I don't know which to try. What I would like to know is this: Based on all this history I provided, which of these might work better? Does anyone have thougts they could provide. Anyone tried both and had sucess with one but not the other?Just as additional info...in case you are still reading, I have a wheelchair and an electric scooter that was purchased by my ins. co. I wear braces on my arms to help with pain. I have done aquatic therapy 3x a week for months now. I am extremely depressed and see a psychiatrist for that and he has me on other meds. I am still mourning for the life I knew and realizing all the things that I will never be able to do again. I am only 39, I just can't take much more of this.My hubby is extremely supportive and he and the kids do everything around the house, I can't do anything to pitch in and that just makes me feel useless and more depressed.ok...all for now, I will stop my sob story. Thanks for listening.Miriam

[Guest guest]

Dear Miriam- From my personal experience I can tell you that Remicade does work for me. It works only with MTX. I started it in 2000 and am still on it. This isnt a shot. This is an IV. An infusion. That means straight into the blood stream. It is a TNF binding drug. It usually takes 3 hours for an infusion. You should keep yourself very well hydrated. This was originally RX'd for Chrones Disease and goes right to work. Being a sodium based solution you will appreciate a bottle of gatorade and a bottle of water. Be sure to get your husband to go with you to your first infusion. You will need to have your RD arrange your infusion at his office or an infusion center in your area. You can have reactions to the infusion but they usually make you take claritin and tylenol just in case. Everyone is different. I just go home and take a nap. I am supposed to have one every 8 weeks but am into my 12th week and am flaring to beat the band. Remember that there are new drugs called MRA and Rituxan. One is a B cell binding agent and the other binds to interlukin 6 protiens which are key in the inflammation process. Your arthritis is a parasite and it is literally feeding on you. You need something to interfere with the cellular messages that the disease sends to your immune system. Remicade along with MTX should do the trick. If your body just found away around TNF binding drugs then you do have options. Rituxan or MRA. Your body cant figure them out right away. We just need to keep one step ahead. Remicade will not prevent osteoporosis which I have, but that is because of a thyroid issue which is consistent with auto immune disease. Also prednisone adds insult to injury. I take oxazepam which is an ativan derivative to help with depression and sleep. I also take a little Soma (muscle relaxant) a bit of darvocet and 25mg of trazadone at bedtime. I was alone my first infusion. I was afraid, but I can tell you that after the infusion I felt numb. I was in so much pain, pumped up an arava and darvocet back in 2000 after cyclosporine just quit working after five years. Then within the first 48 hours after the infusion I felt literally numb. No pain. It was surreal. It was like a dream. Unreal. Within two weeks I could walk and shop and after a month I could exercise a little. My life on Remicade is better than without it, I dont have to do needles. My energy is affected, and I cant lift heavy things or do alot like I used to but considering how terribly aggressive my disease is, I am grateful I can have any quality of life at all. I have lost alot of strength in my hands and wrists over the last two years but its because I lift things and do things I shouldnt. I dont ask for help which I should. I am very stubborn and independent. Its my will again the will of disease. I have more bad days than good days. MTX days are just lost. Fatigue is a biggie. I sleep 10-12 hours. Remember than pain does things to your mind. It can make you suicidal. I cant imagine how hellish this is for you, but just take one minute at a time and push on through. I have to give myself permission to do absolutely nothing. Thats hard but I do it when I have to. Do one GOOD thing for YOURSELF every day and one USEFUL thing. Thats really the best you can hope for every day. Help one of your kids with homework for the useful thing, and treat yourself to a manicure or a good book. I would say take a bubble bath but if you got in, EMS would have to fish you out. Try and smile. You really are the best person you know. Remember that. Hugs, Deborah

On 3/29/06, mpalevsky_bunnylover <mpalevsky@...> wrote:

I am 39 years old and have been diagnosed with RA since 2001. Ibelieve I have had it since I was a teen, but it was never diagnosed

and I had long remissions.My RA just keeps getting worse and worse and I am at my wits end! Iwas on Enbrel for 1.5 years, along with MTX, Bextra, Skelaxin andPrednisone. I had flares but things were basically under control

and I was working.Last year, the efficacy of the Enbrel ended for me. At about thesame time, Bextra was taken off the market and I was suddenly inhorrendous shape. The Rheumy tried all sorts of things with no

sucess. I couldn't sleep, and spent most of the time rocking myselfbecause I didn't know how to stop the pain. On July 1, I stoppedworking because I couldn't even bend my arms to get them up to thekeyboard, let alone type. I am the sole bread winner for my family

and we have 6 children.The Rheumy gave me the option of joining one of the drug studies hewas doing and I decided to go with it. I started on Abataceptinfusions and began to get some relief. Suddenly, my back pain was

much worse and I couldn't sit, stand or lay down without pain.Turns out that the facet joints in my back had deteriorated so badlythat one of them cracked and opened and then it collapsed down onthe next few levels of my spine. In Dec, I had back surgery where

they did a laminectomy and used rods and screws to put things backtogether.Well...the surgery made my RA pain flair even worse than it wasbefore. I ended up with pulmonary effusions (fluid on my lungs)

that they said was likely from the RA. The Dr. started me onOxycontin for the pain and I finally felt that I was getting somerelief, at least to the point that I could tolerate the pain.I have healed from the surgery, but the Abatacept infusions are not

giving me any pain relief at all. When they feel my joints forswelling at each appointment, they are all swollen. It is as if Iam not on any meds at all. The Dr. added Lodine XL to my list ofmeds.

I started going to a pain management center and they changed theoxycontin to Avinza and also added Lyrica for the pain. I alsonoticed than since surgery, I was having these tremors and jerkingmovements and at times would have difficulty with my speech. I was

sent to a neurologist and am now diagnosed with multi focalmyoclonic seizures which could be from the surgery but can also becaused by the immune system. This Dr. now added Trileptal to mymeds. Of course I am still on MTX and Skelaxin plus meds to try and

help me sleep.The Rheumy did a bone scan and found that I had considerable boneloss for someone my age and started me on Fosamax. I had xrays ofmy hands and wrists and it shows a build up of crystals that they

believe are hydroxyapaptite crystals and said follow up would beneeded. I just had an mri of my hand and wrists but no results yet.Meanwhile, my RA is still flaring and my husband and I have decidedthat the Abatacept is no longer providing me any relief at all, and

its time to try something else. My options are Humira or Remicaidand I don't know which to try. What I would like to know is this:Based on all this history I provided, which of these might workbetter? Does anyone have thougts they could provide. Anyone tried

both and had sucess with one but not the other?Just as additional info...in case you are still reading, I have awheelchair and an electric scooter that was purchased by my ins.co. I wear braces on my arms to help with pain. I have done

aquatic therapy 3x a week for months now. I am extremely depressedand see a psychiatrist for that and he has me on other meds. I amstill mourning for the life I knew and realizing all the things thatI will never be able to do again. I am only 39, I just can't take

much more of this.My hubby is extremely supportive and he and the kids do everythingaround the house, I can't do anything to pitch in and that justmakes me feel useless and more depressed.ok...all for now, I will stop my sob story. Thanks for listening.

Miriam

[Guest guest]

Hang in there Miriam! I am so glad that your husband and kids are

there for you. I take Humira but haven't had any contact with

Remicade. I know researchers are coming up with breakthroughs in

cancer research so that means breakthroughs with RA and everything

else in my opinion. I know it's depressing and can be very

overwelming at times. It sounds like you are doing everything you can

to attack back in a positive way with your different therapies and

such. I am also 39, was diagnosed in 2002. Remission is something I'm

still hoping to know first hand. Try to keep your chin up and love in

your life. You are definately worth it!

>

> I am 39 years old and have been diagnosed with RA since 2001. I

> believe I have had it since I was a teen, but it was never

diagnosed

> and I had long remissions.

>

> My RA just keeps getting worse and worse and I am at my wits end!

I

> was on Enbrel for 1.5 years, along with MTX, Bextra, Skelaxin and

> Prednisone. I had flares but things were basically under control

> and I was working.

>

> Last year, the efficacy of the Enbrel ended for me. At about the

> same time, Bextra was taken off the market and I was suddenly in

> horrendous shape. The Rheumy tried all sorts of things with no

> sucess. I couldn't sleep, and spent most of the time rocking

myself

> because I didn't know how to stop the pain. On July 1, I stopped

> working because I couldn't even bend my arms to get them up to the

> keyboard, let alone type. I am the sole bread winner for my family

> and we have 6 children.

>

> The Rheumy gave me the option of joining one of the drug studies he

> was doing and I decided to go with it. I started on Abatacept

> infusions and began to get some relief. Suddenly, my back pain was

> much worse and I couldn't sit, stand or lay down without pain.

> Turns out that the facet joints in my back had deteriorated so

badly

> that one of them cracked and opened and then it collapsed down on

> the next few levels of my spine. In Dec, I had back surgery where

> they did a laminectomy and used rods and screws to put things back

> together.

>

> Well...the surgery made my RA pain flair even worse than it was

> before. I ended up with pulmonary effusions (fluid on my lungs)

> that they said was likely from the RA. The Dr. started me on

> Oxycontin for the pain and I finally felt that I was getting some

> relief, at least to the point that I could tolerate the pain.

>

> I have healed from the surgery, but the Abatacept infusions are not

> giving me any pain relief at all. When they feel my joints for

> swelling at each appointment, they are all swollen. It is as if I

> am not on any meds at all. The Dr. added Lodine XL to my list of

> meds.

>

> I started going to a pain management center and they changed the

> oxycontin to Avinza and also added Lyrica for the pain. I also

> noticed than since surgery, I was having these tremors and jerking

> movements and at times would have difficulty with my speech. I was

> sent to a neurologist and am now diagnosed with multi focal

> myoclonic seizures which could be from the surgery but can also be

> caused by the immune system. This Dr. now added Trileptal to my

> meds. Of course I am still on MTX and Skelaxin plus meds to try and

> help me sleep.

>

> The Rheumy did a bone scan and found that I had considerable bone

> loss for someone my age and started me on Fosamax. I had xrays of

> my hands and wrists and it shows a build up of crystals that they

> believe are hydroxyapaptite crystals and said follow up would be

> needed. I just had an mri of my hand and wrists but no results yet.

>

> Meanwhile, my RA is still flaring and my husband and I have decided

> that the Abatacept is no longer providing me any relief at all, and

> its time to try something else. My options are Humira or Remicaid

> and I don't know which to try. What I would like to know is this:

> Based on all this history I provided, which of these might work

> better? Does anyone have thougts they could provide. Anyone tried

> both and had sucess with one but not the other?

>

> Just as additional info...in case you are still reading, I have a

> wheelchair and an electric scooter that was purchased by my ins.

> co. I wear braces on my arms to help with pain. I have done

> aquatic therapy 3x a week for months now. I am extremely depressed

> and see a psychiatrist for that and he has me on other meds. I am

> still mourning for the life I knew and realizing all the things

that

> I will never be able to do again. I am only 39, I just can't take

> much more of this.

>

> My hubby is extremely supportive and he and the kids do everything

> around the house, I can't do anything to pitch in and that just

> makes me feel useless and more depressed.

>

> ok...all for now, I will stop my sob story. Thanks for listening.

>

> Miriam

>