Does anyone here take Remicade (Infliximab)

As5567 · 10. Mar 2013, 11:38

Has anyone on the forum ever been on this drug? Or currently on it. This is the drug that my doctor wants me to have, I really don’t want to have this medication (not that any of us want to be on any kind of medication) but I think I have no option than to give it a go. This last week for me has been a big wake up call, I have been having steroid IV infusions all week which to be honest has really given me an eye opener. They haven’t exactly been a success but have given me a very short period of no pain/stiffness which I loved every moment of.

The only big issues I have with this new treatment is the fact that it has to be given by an IV Infusion every 4-6 weeks, for someone like me with very bad veins I find just thinking about the 4-6 weeks infusions stresses me out. I have no fear of needles or injections etc and I'm used to them but there is something about the IV tube/needle thing that freaks me out and gets me worked up. And the fact that nobody seems to ever get my veins the first, 2nd or 3rd time.

I'm due to have more steroid infusions next week (yay for 1-2 days of super human strength) and will hopefully be seeing my doctor at the infusion clinic to discuss the new treatment. It would be great to hear from anyone who is on this drug.

barbara12 · 10. Mar 2013, 13:43

Hello As5567
Sorry I cant help, but there are a few people on infusions on the forum, its is very quiet at the min but hopefully someone will be along that can help....I have very tiny veins but go for regular blood test...I find that getting the right nurse is a must....I did refuse to have one nurse because she struggle with me...xx

stickywicket · 11. Mar 2013, 05:17

I can certainly see your point. They sometimes struggle with my veins for blood tests. Apparently, after 50 or so years of them they now do a shimmy when they see a needle coming at them.

I know people on here have been on this med though not many. I guess you can only suck it and see. It'll be worth it if it helps and you should soon (in terms of infusions) know.

I'm glad the steroids are helping.

tillytop · 11. Mar 2013, 06:53

Hello,

Just to say I was on Infliximab and it gave me 5 years of complete RA remission. I went into the first infusion hobbling and came out walking almost normally. The effects didn't last long at first, but after a few infusions I was completely pain-free and could virtually forget I had RA (other than occasional twinges from damaged joints). Even symptoms which I thought were permanent disappeared and I honestly wondered if the RA had gone for good. Unfortunately I became allergic to it after 5 years and had to stop - but I would be back on it tomorrow if they would let me.

Side effects for me were minimal - I used to get a stonking headache and feel pretty "steamrollered" for a couple of days after the infusion so I used to try to arrange it for a Friday so I had the weekend to recover before work on Monday morning. Towards the end of the 5 years I was on it, I also used to notice the effects wearing off as the next infusion was due, but that may have been a sign of the allergy to come.

As with all the RA meds, nobody can say which ones will work for us and who will have side effects and it may be that I was one of the lucky ones. What I will say is that I have had two other biologic drugs since and neither have been as good for me as the Infliximab.

Veins wise, I used to come out like a tea-bag from various attempts at inserting the canula - on one occasion they gave up on the usual sites and were talking about using a vein in my ankle. It didn't come to that thought but I wouldn't have minded if it had - as I said to the nurse - I don't care where you put it, I'm not going home without my Infusion!

I hope you do feel able to give Infliximab a try - and if you do, I hope it works as well for you as it did for me.

Tilly

As5567 · 11. Mar 2013, 13:52

tillytop wrote:

Hello,

Just to say I was on Infliximab and it gave me 5 years of complete RA remission. I went into the first infusion hobbling and came out walking almost normally. The effects didn't last long at first, but after a few infusions I was completely pain-free and could virtually forget I had RA (other than occasional twinges from damaged joints). Even symptoms which I thought were permanent disappeared and I honestly wondered if the RA had gone for good. Unfortunately I became allergic to it after 5 years and had to stop - but I would be back on it tomorrow if they would let me.

Side effects for me were minimal - I used to get a stonking headache and feel pretty "steamrollered" for a couple of days after the infusion so I used to try to arrange it for a Friday so I had the weekend to recover before work on Monday morning. Towards the end of the 5 years I was on it, I also used to notice the effects wearing off as the next infusion was due, but that may have been a sign of the allergy to come.

As with all the RA meds, nobody can say which ones will work for us and who will have side effects and it may be that I was one of the lucky ones. What I will say is that I have had two other biologic drugs since and neither have been as good for me as the Infliximab.

Veins wise, I used to come out like a tea-bag from various attempts at inserting the canula - on one occasion they gave up on the usual sites and were talking about using a vein in my ankle. It didn't come to that thought but I wouldn't have minded if it had - as I said to the nurse - I don't care where you put it, I'm not going home without my Infusion!

I hope you do feel able to give Infliximab a try - and if you do, I hope it works as well for you as it did for me.

Tilly

Thanks for your reply, I read a lot of positive story’s about this drug such as yours which is why I think I'm going to just bite the bullet and take it. How often did you have the dose? I see that people have it anywhere from every 4 weeks apart or up to 8 weeks. It sounds like this drug was the right one for you and it’s a shame that you was forced to stop taking it.

lizzy100 · 11. Mar 2013, 17:13

can i ask how come you have steroid infusions? im just finishing course of oral steroids but as soon as i got to a low dose iv got bad again :roll: . apparently TNF biologics are the next step, if anyone would agree to give them to me. i dont mind needles but i have a fear of hospitals (or rather being a patient in hospitals), it sends me doo-lally.

As5567 · 11. Mar 2013, 19:35

lizzy100 wrote:

can i ask how come you have steroid infusions? im just finishing course of oral steroids but as soon as i got to a low dose iv got bad again :roll: . apparently TNF biologics are the next step, if anyone would agree to give them to me. i dont mind needles but i have a fear of hospitals (or rather being a patient in hospitals), it sends me doo-lally.

I think that most doctors only prescribe IV steroids for a bad flare up as a quick fix sort of thing, I don't like having IV steroids as they give them at quite a high dose and they're extremely bad for you. Not to mention the side effects and the "crash" afterwards. I have also been given oral steroids in the past and found it difficult to come off those, have you spoke to your doctor about this?

Hopefully you will get to try out some of the anti tnf drugs if things are not working for you, I found that every anti tnf that I have tried has always worked for me really fast. The only problem with the anti tnf drugs is the fact that for most people they are "time limited" as your body often will produce anti bodies against the drug and stop it working.

As for your doctor to agree to prescribe a Biological drug I think the guidelines are something along the lines of you need to try out 3 or more traditional drugs.

tillytop · 12. Mar 2013, 05:01

As5567 wrote:

tillytop wrote:

Tilly

Thanks for your reply, I read a lot of positive story’s about this drug such as yours which is why I think I'm going to just bite the bullet and take it. How often did you have the dose? I see that people have it anywhere from every 4 weeks apart or up to 8 weeks. It sounds like this drug was the right one for you and it’s a shame that you was forced to stop taking it.

Thanks. Glad you think you might go ahead and try Infliximab. I started with a few doses close together (which is the norm I think) then it was every 8 weeks. If you do go for it, I really do hope it helps you as much as it did me.

Tilly

As5567 · 13. Mar 2013, 04:21

tillytop wrote:

As5567 wrote:

tillytop wrote:

Tilly

Thanks for your reply, I read a lot of positive story’s about this drug such as yours which is why I think I'm going to just bite the bullet and take it. How often did you have the dose? I see that people have it anywhere from every 4 weeks apart or up to 8 weeks. It sounds like this drug was the right one for you and it’s a shame that you was forced to stop taking it.

Thanks. Glad you think you might go ahead and try Infliximab. I started with a few doses close together (which is the norm I think) then it was every 8 weeks. If you do go for it, I really do hope it helps you as much as it did me.

Tilly

Thanks for your reply, I asked about the dosage yesterday and they said it would be 2 weeks, 2 weeks, 2weeks, 4 weeks then every 6-8 weeks depending on how i felt (or longer in rare cases)

Had a long chat about giving it a go with the nurses while having my steroid infusion yesterday, they are going to talk to my doctor about giving me funding to try out another drug called golimumab. They say that I'm one of the hardest patients they know of to get IV access into and if I'm going to be starting Infliximab it will be on Thursday (Seeing the doctor on Monday) Hopefully I will know more then and be offered the injection drug rather than the IV version, if not I will just go ahead and give it a shot!

tillytop · 13. Mar 2013, 08:27

Really good luck! Golimumab sounds as if it might be an easier option for you and I am so pleased you seem to have a good rheumatology team on your side.

Tilly

As5567 · 13. Mar 2013, 09:37

tillytop wrote:

Really good luck! Golimumab sounds as if it might be an easier option for you and I am so pleased you seem to have a good rheumatology team on your side.

Tilly

I do have a very good rheumatology team, most of them working there have known me since my childhood and it’s a real shame that I'm being forced to swap to another hospital trust just to save money -.- Thankfully they have told me that due to my condition not being stable right now that they will not be able to move me.

tillytop · 15. Mar 2013, 07:26

I am really pleased you can stay with your good rheumatology team for now, rather than having to move. Good luck with Inliximab/Golimumab and really hope it doesn't take long to get going on the new meds.

Tilly

As5567 · 18. Mar 2013, 12:36

Infliximab it is, first dose Wed.

As5567 · 24. Mar 2013, 14:52

First infusion went well, early days but I'd say I have already began to notice an improvement in my joints, wish I could say the same about my back but like i said early days. So far so good

tillytop · 25. Mar 2013, 14:24

I'm so pleased your first infusion went well and that you are already seeing positive signs of improvement. Hope it continues to help you in the longer term as it did me.

Tilly

Does anyone here take Remicade (Infliximab)

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