Just joined - question on Remicade

Hi Everyone,

Just joined and was happy to find this group. I was diagnosed with PsA at the beginning of this year. I am currently on 15 mg of Methotrexate and tolerate it fairly well. The methotrexate has helped somewhat with my knees but has not helped my psoriasis at all. I have been taking it for just over 3 months. My rheumatologist wants to start me on Remicade/infliximab. I am wondering if anyone else has tried this drug and what kind of experience you had with it. Thanks for sharing.

Mary

I'm suprised he is going from Mtx to Remicade so fast...has he talked with you about Humira or Enbrel? They are a lot cheaper then Remicade plus you inject yourself at home instead of sitting for hours in an infusion room....and many many people have great results with them.

I haven't personally taken Remicade but I know many people have great success with it, but it has a high risk of allergic reaction. Good luck.

I have taken methotrexate on and off since 1987. It never helped my psoraisis. My dermatologist was shocked that I was on such a high dose with no results. The moment I started on biological drugs my psoriasis cleared. I have been on almost all of them with Enbrel and Humira working so well on joint pain and psorasis.o

Hi Mary,

Welcome to our gang! Just wanted to respond and let you know that although I have not taken Remicade, there are other members that will be on later today or tomorrow that will surely add something here.

Wishing you a pain free day!

SK

I see you are in Ireland. I have used other Biologics but not this one. As I understand the way your health service operates, there has to be a 3 month DMRD trial before you can go to a biologic. As a rule there are two reasons for this Sometimes the DMRD does it all by it self (sometimes not) ALSO the docs want to know how you tolerate the MTX as it is often added to the mix. There is a lot higher chance of MTX causing problems than the Biologics. They also like to use the Biologics when there is a very CLEAR Dx. Pain isn't enough or is pain with Psoriasis. The combination is starting to show up in research as very effective in STOPPING progression (that sadly doesn't mean pain) Of course the studies have been with RA and not PsA. (We are always last)

Remicade has a lot of advantages in that the initial treatment brings your levels up quickly, something that can take several months with the others. Also for PsA, the amount for therapeutic reasons is about half than that for ulcerative colitis. Your doc may feel he has more room to adjust dosages as opposed to the others. Remicade also seems to have better results with peripheral involvement.

Sounds like you have a doc with a long term plan to get things under control and prevent some long term damage. Good Luck, glad you found us.

BTW where in Ireland are you? On my bucket list to spend some time over there, except your rain scares me...

Welcome, Mary!!!

I just had my second infusion of Remicade on Friday. For me, the infusion is nothing, but I need a nap afterwards and feel exhausted and icky for a couple days afterwards. I'd gone off Enbrel 2 weeks before my first infusion and went downhill quickly - back to using canes or a wheelchair most of the time. Today I ran three errands without taking my canes out (but I did have shopping carts to lean on!). I'm hoping my energy levels improve and my pain levels go down as the week progresses. My rheumy and I decided on remicade because he can adjust the dosage to fit my needs.

I would think Nym that you would choose Remicade EVEN if it wasn't the best course if for just the peace from kids while getting the infusion......

Yeah...there's that, too! LOL (http://rannygahoots.blogspot.com/2012/06/infusion.html) During my last infusion, my husband had our five kids, plus an extra 4 year old, 2 year old, and 10 month old in his care. He's awesome.

Thanks for the information. I am actually bypassing the public health system here as there was a 6 month wait to see a rheumatologist. I am in Connemara in the west of Ireland - don't let the rain keep you away as it is a beautiful country. If you do come to visit don't count on good weather and you may be surprised! The good aspect of the weather is that we rarely get extremes in terms of temperature - never very hot or very cold!



tntlamb said:

I see you are in Ireland. I have used other Biologics but not this one. As I understand the way your health service operates, there has to be a 3 month DMRD trial before you can go to a biologic. As a rule there are two reasons for this Sometimes the DMRD does it all by it self (sometimes not) ALSO the docs want to know how you tolerate the MTX as it is often added to the mix. There is a lot higher chance of MTX causing problems than the Biologics. They also like to use the Biologics when there is a very CLEAR Dx. Pain isn't enough or is pain with Psoriasis. The combination is starting to show up in research as very effective in STOPPING progression (that sadly doesn't mean pain) Of course the studies have been with RA and not PsA. (We are always last)

Remicade has a lot of advantages in that the initial treatment brings your levels up quickly, something that can take several months with the others. Also for PsA, the amount for therapeutic reasons is about half than that for ulcerative colitis. Your doc may feel he has more room to adjust dosages as opposed to the others. Remicade also seems to have better results with peripheral involvement.

Sounds like you have a doc with a long term plan to get things under control and prevent some long term damage. Good Luck, glad you found us.

BTW where in Ireland are you? On my bucket list to spend some time over there, except your rain scares me...

Welcome , Mary from Connemara! For years I've wanted to visit Ireland (we've been to England, Scotland and Wales many times). Our trip was all planned for last month, until my giant Baker's Cyst grounded me. Boo hoo. You're right about the weather. Our first holiday in Scotland was miserable, because it rained the whole time. The next time, we went equipped with rain suits and wellies. That alone was enough to bring on some nice weather, but even the rainy days were enjoyable because we managed to stay dry. Where weather is concerned, pessimists are either smugly satisfied or pleasantly surprised! LOL

Glad you've joined us, but sorry you've had to! Good luck with those treatments -- I'm envious of the speed with which your rheumy got out the big guns.

Seenie

Cead Mile Failte, Mary!

I'm part Irish on my Dad's side. Grandma was a Connolly. Sorry you have PsA, but welcome to the group. I'm fairly new too and have appreciated all the support and advice.

My Grandma was from Connemara. About all I know. Her family came here in 1902 part of them stayed in Pennsylvania. She was 40 when my dad wad born and he was 45 when I came along (remember the only time he ever "hit me" was when I was about 12 and just learned the "facts of life" and asked quite innocently of "doing it" was so great why he and grandma put it off so long....

Anyway will be there summer of 2014. We are doing a transatlantic/Ireland /Scotland Cruise.

I don't know that this comment will be particularly informative, but it may be interesting to someone. Maybe. A little, anyway. lol

I talked to my rheumy about the fact that Medicare Part D is of little help paying for biologics. She said this is true for most biologics, but because Remicade is an infusion, it is viewed as a procedure and not as a pharmaceutical; therefore, it can be covered under Medicare. I did find that interesting, since biologics probably wouldn't be an option for me because of the expense. As a good friend of mine says, "It's a twisted system." Just sayin'....

Thanks for the response Kasondra. We didn't really discuss Humira or Enbrel - I needed something more than the methotrexate and he gave me the choice of injecting myself or getting the infusion. I opted for the infusion but the decision isn't final yet. My dermatologist was way to conservative in his treatment of my psoriasis so I am happy with the rheumatologist's approach.

Kasondra Iarussi said:

I'm suprised he is going from Mtx to Remicade so fast...has he talked with you about Humira or Enbrel? They are a lot cheaper then Remicade plus you inject yourself at home instead of sitting for hours in an infusion room....and many many people have great results with them.

I haven't personally taken Remicade but I know many people have great success with it, but it has a high risk of allergic reaction. Good luck.

Hi Seenie - thanks for the welcome! It is funny how you mentioned your Baker's Cyst as Baker's Cysts on both knees are what prompted me to investigate what was going on further and led me to the rheumatologist. My dermatologist was very conservative in his treatment so I am happy with the rheumatologist's approach so far!

Seenie said:

Welcome , Mary from Connemara! For years I've wanted to visit Ireland (we've been to England, Scotland and Wales many times). Our trip was all planned for last month, until my giant Baker's Cyst grounded me. Boo hoo. You're right about the weather. Our first holiday in Scotland was miserable, because it rained the whole time. The next time, we went equipped with rain suits and wellies. That alone was enough to bring on some nice weather, but even the rainy days were enjoyable because we managed to stay dry. Where weather is concerned, pessimists are either smugly satisfied or pleasantly surprised! LOL

Glad you've joined us, but sorry you've had to! Good luck with those treatments -- I'm envious of the speed with which your rheumy got out the big guns.

Seenie

Hi DMaraJade - thanks for the welcome!

DMaraJade said:

Cead Mile Failte, Mary!

I'm part Irish on my Dad's side. Grandma was a Connolly. Sorry you have PsA, but welcome to the group. I'm fairly new too and have appreciated all the support and advice.

You will definitely have to visit Connemara - it is the most beautiful place in the world - on a nice day!

tntlamb said:

My Grandma was from Connemara. About all I know. Her family came here in 1902 part of them stayed in Pennsylvania. She was 40 when my dad wad born and he was 45 when I came along (remember the only time he ever "hit me" was when I was about 12 and just learned the "facts of life" and asked quite innocently of "doing it" was so great why he and grandma put it off so long....

Anyway will be there summer of 2014. We are doing a transatlantic/Ireland /Scotland Cruise.

Thanks for the information Byrd Feeder - our health system in Ireland is quite different than the US and I am lucky that I have managed to hold on to my private health insurance here despite our recession!

Byrd Feeder said:

I don't know that this comment will be particularly informative, but it may be interesting to someone. Maybe. A little, anyway. lol

I talked to my rheumy about the fact that Medicare Part D is of little help paying for biologics. She said this is true for most biologics, but because Remicade is an infusion, it is viewed as a procedure and not as a pharmaceutical; therefore, it can be covered under Medicare. I did find that interesting, since biologics probably wouldn't be an option for me because of the expense. As a good friend of mine says, "It's a twisted system." Just sayin'....

Thank you for the welcome and the information Nym - I can deal with the exhaustion as I get that from the Methotrexate periodically. I just want to avoid nausea, headaches etc. I don't have a start date for the Remicade yet but hopefully it will be worked out soon.

nym said:

Welcome, Mary!!!

I just had my second infusion of Remicade on Friday. For me, the infusion is nothing, but I need a nap afterwards and feel exhausted and icky for a couple days afterwards. I'd gone off Enbrel 2 weeks before my first infusion and went downhill quickly - back to using canes or a wheelchair most of the time. Today I ran three errands without taking my canes out (but I did have shopping carts to lean on!). I'm hoping my energy levels improve and my pain levels go down as the week progresses. My rheumy and I decided on remicade because he can adjust the dosage to fit my needs.

How are you feeling Mary?