Remicade Infusions

DebbieLou

7/30/08 4:52am

Hi there,

I just stumbled upon your post-interesting!!!

I'm glad I found you!!!

I think that MabThera is another name for Remicade, or is it Ribixmab(something like that)

mmmm...I will have to find your previous post to understand what the Orencia study is.

Anyway they are very similar. Both infusions to be done in hospital

check your hospital cover.

some will charge day surgery!!!

My fund is charging me $500 for each 6hr. visit to the hospital!!!!!!

I have since found another fund where I pay nothing. Too late for this years treatment. Next year I will changemy hospital fund to HCF and it is available in Australia-Where are you???

I had my first experience with MabThera in February, 2008- 2 infusions 2 weeks apart.

How good it is that they gave you shots for shingles!!

I didn't get offered these, and WHAMO!!! you guessed it!!!

I got shingles

I read up about re-occurring shingles ( I got 4 lots)

and discovered that it does occur with this drug

shingles is mentioned on the side effects patient information

Good luck with your treatment!!!

Except for the shingles, i have found it very very good!!!!

More strength and energy and speed...FANTASTIC!!!

It took me about 4 mths. to get this feeling.so hang in there it is worth it!!!!

Debbie

Lenora Taylor

7/30/08 9:45am

I'm in the USA, in the state of Texas.

I have a great Doctor that seems to have many years of experience when it comes to RA. He warned me that because of my immune system being suppressed that I will probably get sick with colds, ear infections, bronchitis, etc. So I'm bracing myself.

My Remicade infusion will be done in my Doctor's office. He has a interesting little set up in one room with comfortable chairs and a small TV....a nurse's there watching you every move. And the best part is that I only pay $35 for a $1000 dose.....thank God for insurance.

I'm sorry you got the shingles. I hear it can be painful and annoying-----as if you don't have enough with the RA.

Thanks for the information you shared with me.

DebbieLou

7/31/08 3:32am

Hi!!

What a great doctor to hire a nurse for you in his own private room WOW

And i have looked at your previous post..........diagnosed just this year and offered one of the super gourmet drugs, beauty!!!! It is going to save you heaps of deteriotion

Don't be scared of the best drug !!!

Just think how lucky you are!!!!!!

Go in with a smile on you face and relax and your body will thank you for it!!!

Here in Oz, we have to fail a dozen drugs before we are offered the exciting ones.

MTX is offered first, it is the oldest.

I was on MTX for about 5 years. I had it twice a week with preg. and celebrex as i have severe RA. This allowed me to get about.

My hair thinned on the crown, and my arms got rough and blotchy,

It wasn't until i couldn't get rid of mouth ulcers for 6 mths

I was given the next drug on the list....................

and now i have made my way to the end of the list, ie.MabThera

All the best with the treatment

Love Debbie

Lenora Taylor

7/31/08 9:31am

Thank you for the positive words.

Just to clarify, MTX is also the first drug Doctor's prescribe in the USA. It's inexpensive and because of that medical insurance's love it! I've had several Doctors---the first one prescribed MTX and told me to come back if it didn't work. I decided to shop around for another Doctor and I found a good one. But he also wanted to give me MTX but I told him that I would not take it because of the side effects. He understood me and admitted that MTX will probably be one of those old primitive drugs that will soon not be given to RA sufferers. He told me he would try to do his best to fight with my insurance company to give me the expensive stuff (Remicade, Enbrel or Humira).

So yes, you're right---I'm lucky. I have a good Doctor that seems to care and I also have good medical insurance.

I will take your advice when I take my first dose of Remicade.....

Jules

7/30/08 5:33pm

Hi:

I am curious as to why you feel better with Remicade versus MTX? I was diagnosed first with Fibro in Nov 2006, then RA Feb 2007...prior to this they thought I had MS and I endured MANY painful tests and suffering. I have refused so far any of the RA drugs and have opted for natural herbs and diet with a Natural non MD "Doctor" to the tune of over $5,000!!! I have had no luck and am scheduled to start MTX in 2 weeks. The pain, joint swelling and loss of use has now become unbearable (hands, knees and feet). I have a new GrandBaby and am unable to hold her for more than a few minutes while standing! I really want to enjoy her.

What I read about Remicade and to me it sounds just as scarey as MTX...they ALL sound terrible...and I am scared to death to take ANY of them. I was hoping you may be able to enlighten me on why you feel Remicade is safer and a better choice than MTX. I have great insurance, so cost would not be an issue for me.

Thanks for your help! And God Bless

Julie

DebbieLou

7/31/08 3:44am

Hi there Julie

If you can choose, go for the Remicade!!

See my comment above

Love DebbieLou

DebbieLou

7/31/08 3:49am

Hi there Julie

Go for the Remicade

See my comment above

Love DebbieLou

Lenora Taylor

7/31/08 9:19am

That's a good question. In no way was I trying to imply that one drug was better that the other. Remicade's horrible for the body. I'm also very, very scared of it.....I may even still back out of taking it because of the fear of it. But the reason I refuse to take MTX is more of a personal reason....my main fear is that it could damage the liver and we only have one liver. My father died a few years ago from liver damage (not from MTX)---so it's just a personal thing. A lot of people do great with MTX. Unfortunately, both drugs are scary.

I feel bad for you---I know you must be in a lot of pain if you can only hold your grandchild for a short period of time. I don't have any children but I have an 8lb. Dog that I have a very difficult time holding during flare-ups....so I understand you.

This disease is depressing, but don't let it get to you. My Doctor told me that there's a lot of drugs being tested as we speak that are not so harmful as the one we have out in the market today.

The pain has been unbearable so I've also relied on an another dangerous drug---cortisone. I've had 3 - 120ml. in the last 5 months----this is a lot of cortisone! I'm sure one day I will regret it, but I've felt really good in the last couple of days and I'm taking advantage of it. Another thing that has helped me is aquatic exercises---the first time I tried it, I was amazed. Once I got out of the pool and got some warm clothes on I notice the swelling was completely gone for a couple of hours...so I exercise every day.

Good luck to you and keep in mind that we have hope for the future.

Sue

7/31/08 10:08am

Hi, I am so glad I saw your post. I also am going to be taking Remicade. IF my insurance will pay for it. If they do not pay for it my RA doctor goes to the CO that makes it, and gets it that way for me. All I have to do is take a TB test. I never had any vaccines like you did! is this something I should go to my doctor about and tell him I want these so I do not get sick? I have not been on the site in a few days since I am so body tired I find things like taking a shower, taking all my energy. I am scared to take this drug in fear of what will happen to me. I was told by the doctor that he sees a lot of good results from it. Please post how you did with it. I am not sure when I will go for this..

Lenora Taylor

7/31/08 10:26am

I haven't taken Remicade yet, my first infusion's Aug. 27th. I'm not that excited about taking it, but it seems to be the necessary evil.

Yes, absolutely ask your doctor for a Shingles Vaccine and a Pneumonia Vaccine. I've had several people tell me that they didn't get the vaccines and they ended up getting Shingles. You don't want to get Shingles on top of RA....you're suffering enough already.

I completely relate to you on the shower issue----when I'm feeling sick, it takes me for ever to take a shower, dry myself and get ready for work. I have to be at work at 7:30am and sometimes I'm up at 4am---and even getting up this early I still get to work late. In the old days, when I was healthy, I would wake up at 6:15am and still make it to work by 7:15am. My life has changed a lot.....I'm sure yours has also.

Again, I strongly recommend the vaccines.....

Sue

7/31/08 10:52am

Thank you I will! I am not sure about even taking it. Yes I am in pain. it is my hands feet, knees elbows, hips. Somedays it is so hard to walk. God Bless you that you can get up like that and go to work! I do not know how you do it. When I have to get up like that I am so sick and in pain. How do you pull your body along? I have a hard time these few days getting off the sofa. I can do very little then I have to get on the sofa. I have not felt this weak in a long time. Pain yes, but this weak, like even moving my arms is very tireing for me to do. typing is hard to do. I miss keys, and I do not have the speed I use to have. I have not been in the pool, or been able to make cookies like I did a week ago. Making dinner kills me. I have to do the wash today and I do not know how I am going to fold it and put it away. That is going to take me days to get done. I have sores in my ears and they hurt. My face is a mess! the red rash is getting worse. sigh.. I am going to have to face Lupis soon on top of RA.

My Pop pop had the Shingles, I was a teenager and he came and stayed with us cause my grand mother was not able to care for him. My grand mother had Lupis. So I wonder if it matters that he has Shingles.

Well I have been sitting here awhile since my shower, so I am going to see what I can get done around here

Thank you so much for the information!

hugs

Sue

Xica73

7/31/08 10:22am

Isnt RA the most fun ever? (sarcasm, naturally)

We get to try drug after drug after drug, all the while crossing our fingers (figuratively, because hey, we have RA...who can cross their fingers comfortably??) and hoping we hit upon the miracle drug for us.

I tried Remicade for 3 doses...after the very first infusion I had a migraine that left me in bed for 24 hours. Two days later, I had bronchitis for the first time in my 34 years of life. I was sick as a dog for 3 weeks. After I got my second infusion, I had a strange rash all over my body that itched and wouldnt go away even with steroids. My doctor didnt think it was the Remicade and insisted we try 3rd dose. He pretreated me with steroids, Claritan and Benadryl. I seemed OK for the first 4 or 5 days, and then when all the pretreatment meds were worn away...full blown crazy rash all over, including what appeared to be a malar rash on my face. Finally my doc agreed with my initial thought, I was allergic to the Remicade.

That was my story. But one of the women sitting in the room with me during my infusion was also receiving Remicade, but she was receiving her 24th dose. She was fine. It is a personal experience how we all react or dont react to these drugs. It is scary indeed. I hate feeling like a guinea pig, like no one is really sure that anything will work. Now I am on my 3rd dose of Orencia, no side effects besides feeling tired and weak, but just the same the drug hasnt worked a lick yet. On I go, trying to care for my 18 month and 4 year old....trying to figure out a way to style my hair without the use of my hands..... trying to tell people I feel really bad politely while I "look normal"...trying to find shortcuts to housecleaning and cooking....trying to manage our household bills without my income ( I was a NICU nurse and contributed greatly to our financial well-being)...and trying to get the folks at the disability office to understand and believe that a woman in her 30's can feel like a woman in her 80's. I am so glad to have this site to reach out and hear others, who are just like me, when this disease is so darn isolating. Good luck to you...hopefully your Remicade experience will have you up and going in no time!!!!

Lenora Taylor

7/31/08 10:57am

Thank you so much for sharing your experience with Remicade. I can't tell you how scared I am of it, but I'm going to give it a chance. My plan's to see how the first dose goes, if it doesn't go good, then I will move on to plan B (not sure what this plan is yet).

I feel for you and what you're going through. Although I have RA, I feel lucky. I don't have children to take care of, I have a significant other that constantly takes care of me and has taken over of most of the chores around the house. My job is perfect for someone that has RA and have a steady income coming in----it's not a lot of money at all, but enough to pay the bills. I have enough in my hands just taking care of myself, can't imagine having to be responsible for two other little human beings....my heart goes out to you.

psd

7/31/08 1:53pm

I have a little different take on the medications and side effects. I have been on so many different drugs and combinations of drugs in the past eight years, I can't begin to list them all. I took Remicade for about a year and a half, in the beginning it was wonderful. But after about 4 or 5 treatments, I had an allergic reaction during the infusion. My heart rate speeded up and I felt dizzy. They tried giving me Benadryl to counteract. The next time, the same thing happened again only symptoms were worse. I thought I was having a heart attack. Very scary! But not everyone reacts the same to any of the drugs. I have been doing Enbrel for 5 and a half years now with no major side effects. I also take MTX and Mobic. I know of a woman who was diagnosed shortly after me, eight years ago, who has refused all medications and is trying to manage with natural treatments. It is not working for her, today she is confined to a wheelchair and has to be almost completely taken care of by her family. The point is no two people react exactly the same to medications or the lack of them. I know people who manage their RA by diet and such. No rhyme or reason, you just have to find what works for you.

Daina

7/31/08 2:52pm

OK, I've only had three doses of Remicade, but haven't seen any results from it. Right now, I amd also on MTX, Prednisone, Mobic and just had a dep-medrol shot. They're keeping me at exvery 4 weeks because I'm at the highest dose and getting no results. I was on enbrel for 1 and 1/2 years (50mg twice a week) and that was GREAT in the beginning, but I lost all effects very quickly. Unfortunately, like all the others have said, all these "wonderful" (sarcasm intended) drugs work very differently on each and every individual. I do believe you should give it a shot though. I've been in so many trials and on sooooooo many meds (I was diagnosed around age 5 and I'm 32) I don't even look at the side effects anymore. I know that what matters most is that I'm here for my three year old son now, when he needs me most and deal with the rest as it comes.

Of all the drugs i've taken, remicade did scare me the most, but only because it was an infusion, going directly into the blood stream and into a vein. My veins hide, so they have to do it in my hand instead of my arm and I knew that would be the case.

Good luck with everything!!!!!!!!

Kelli

7/31/08 6:37pm

Hi Lenora,

Let me say this first...there are a lot of people that have been helped by Remicade but I'm not one of them. Remicade is made up partially of murine (Mouse) protein, Enbrel, Orencia & Humira or not. The reason I'm telling you this is why my first Remicade infusion, in the nice comfy lounge chairs, was my last. On Sept. 7th of last year, I had the infusion and on Sept. the 13th I was taken to the ER with flu like symptoms, was about to be sent home from the ER because the testing they did showed nothing except an elevated white blood count but luckily, I spiked a high fever which prompted them to keep me longer. I say luckily because at some point in the ER my blood pressure bottomed out and I stopped breathing. After 10 days in the hospital, 6 of them in the ICU, it was determined that it was a reaction to the Remicade and the most likely scenario was a severe reaction to the the mouse protein. So, I would never tell you absolutely no because everyone reacts to things differently but of all the TNF drugs, from the research I've (of course, after the fact) this one has led to more deaths and disabilities.

Regardless, I do wish you luck because I really do feel your pain :)

Kelli

Debby D.

7/31/08 9:54pm

I had my first RA flare in 1980. The RA factor did not show up in blood work so I did not get a diagnosis at that time. Years went by and I was very active - a great deal of sailing / cruising US east coast , wandering almost to South America during the course of 3 years. Finally complained about hands hurting, was put in splints, later complaining of feet hurting and an orthopaedic doctor came in and said he thought I had RA in my large toe. .... Referred to a great young, bright rheumatologist in 1994. Started on Methotrexate and whatever medication was available for pain at the time.I have been having Remicade infusions for over 8 years. I have been treated for RA since 1994. Originally started methotrexate at that time along with what was the current pain/anti-inflammatory pill. Over the years my wonderful rheumatologist kept prescribing new similar pills when the ones I was on stopped working. I eventually got to Vioxx and Bextra - back to Celebrex since the recall on the other two. It is working well for me. In 2000 the pills were no longer controlling my pain and inflamation, so I was started on Remicade infusions. I have been taking these infusions since April of 2000 and am presently on an every 5 week schedule. I am almost 77 years old and doing well. I have two total knee replacements and in February of this year had a shoulder replacement since the RA left me with bone on bone in each case. Fortunately these replacements have been a GREAT help. I take 1 hour aqua exercise classes 4 days a week. I also have been enrolled in Qigong classes (2 classes /week for an hour) - plus practice time. Another big help is working with an excellent massage master each week for an hour or hour and a half. After my shoulder replacement I have returned to more yard/garden work. I am also taking Sulfasalazin and DHEA tablets. I am very fortunate - a great insurance policy, excellent doctors and a mind set to do all I can to keep active. I do take a generic form of Darvocet at bedtime and sometimes in between if I have pain which might keep me from participating in classes I will take a pain pill. Yes - I do keep active, but feel it is well worth it in order to keep myself in as good shape as possible. I am also fortunate in that over the years I have seldom had any bad reactions to the assorted medications I am on. Best of luck to all who are dealing with RA.

DebbieLou

8/ 1/08 11:50pm

Dear Debbie D

What a real trouper you are

all that good exersise is obviously doing you good both physically, socially and mentally

What a great example you are!!!!

I was doing deep water aerobics- where you have a specially desogned floaty around your waist so you can do all the motions of running, jumping jacks, karate kicks etc without touching the ground. My instuctor designed the floating belts and exersises

Thanks for sharing

DebbieLou

Anonymous

8/ 2/08 4:09pm

Dear DebbieLou, Thanks for your encouragement. It sounds as if the deep water aerobics is great with the floaty. Has your instructor tried to market the instructions and floaty? I go to a local Shapes which has a small heated pool - only problem is that with ownership changing hands often they seem to bring in younger people who have no clue on problems which many of us have. I am thankful for my Qigong classes and being able to modify some of the pool exercises to suit my body. Pool is only 4 1/2 feet and under. My boy is telling me I will be very ready for my next Remicade infusion on Wenesday. For me it is as if I am getting a recharge on my body.

Best wishes to you. Debby D.

DebbieLou

8/ 4/08 9:22am

Dear Debby D

Nice to hear from you!!!

I am not familar with Qigong, i am going to "google it"

It is very difficult to exersise with young women

as you say they are not familiar with our limitations

I once joined in a young group- close to my age group(50 yrs.)

and i did damage to my knee because of the eccessive bending of it.

But my instructor Margaret, caters for those who are older( average age 75 yrs)

and does alot of movements with stiff legs and heels down( no pointing of the toes)

This gives us good exercise with out stressing the knees, and being held up with the bouyancy belt we do not touch the ground.

You were saying that your pool is only 41/2 ' deep.

The belt holds your head and shoulders out of the water,

so if you are short and not touching the ground then you could go for it.

Margaret does market her belts.

her web site is www.ryallsbelts.com.au

her email address is ryallsbelts@optushome.com.au

I haven't seen her website.

If you do contact her mention me to her. She knoows me as "Debbie"

I haven't been this year and tell her i was the one who suggested the cruise up the river for our christmas party 2007.

Keep up the exersise, i did feel the benefits when i did it

My posture was teriffic because she made us stand up straight hips forward, stomach in towards the backbone and tuck your tail in, and shoulders back.

it felt weird to start with. i would do the posture thing whenever i thought of it out of the pool and after 6 mths. it became normal. no longer did i sit and slouch.it was very good for me

Let me know how you go

Take care

DebbieLou

Leslie

8/ 1/08 1:13am

I loved Remicade for about 2 years until it stopped working for me.

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