Remicade, I don't think it's working for me?

[macdonald88]

Hi all I am needing some advice/support.

I started remicade last October and didn't see much results until the second infusion until January. My GI then put me onto the humira injections until the may but each time it was injected I had a bad reaction to it and my leg would swell up, so at the end of may this year he put me back onto remicade 8 weekly.

I dont think it is doing much for me I feel physically brighter within myself but everyday I a, struggling with severe fatigue, loose bloody bms, I have mucous and blood discharge, and chronic pain.

I tell myGI this every time but he wants to persist for a couple more months and then do another scope to see how it's going.

I am working a full time job and I am really struggling to do anything at the end of the day or at the weekend as I'm so exhausted.

Is there any alternative options? I don't know what to do anymore as I fee
I'm just going round in circles

Thanks for listening

 

[Clash]

From May til now is a long time to not see any results. Has your GI tested you for antibodies as you could've built up antibodies and that is why the remicade has failed to work. This(<--click here) is a good article about response to tnf blockers you may want to read through it, the primary non responder info may of interest or secondary non responder depending on the results you have gotten from the Remicade the first time.

 

[macdonald88]

Thanks for that clash I will go check out the articles you mentioned, I just feel every time I get a day without one symptom it all comes back with a vengeance and I don't know what is the next stage. Every time I get a scope done it really upsets my body with the prep etc and makes it worse in the long run.

 

[Dukeis]

They only had you on Remicade from Oct. to Jan.? Did they do the loading doses for the Remicade? Seems like they gave up on it quickly. I would think if the Humira was going to help you it would have by now. Did you do loading doses for the Humira? There is Cimzia that has helped some people after using Remicade and Humira. It may be worth a try if your doctor would agree. Good Luck!

 

[macdonald88]

I started the remicade in October 2011 to march had the loading doses then my GI thought he would put me on humira as it is more convenient than taking time off work. I had about 5/6 doses of it then went back on a loading dose of remicade in may this year.

I have heard of cimza but I'm not sure if it is available in the uk.

I'm seeing my GI again on 10th of January so will discuss it with him again but all I keep getting is we will see how it goes and I will see you in a month.

I've not deteriorated but I've not gotten any better and I have just put up with my symptoms as I'm so used to them and the pain as no meds seem to work.

 

[Dukeis]

Going back and forth from one to the other isn't good. Most people use one as long as it works. Then they switch.

Having bloody BM's everyday along with the other symptoms you describe I don't think I could wait until Jan. to have it addressed. That sounds like a significant flare that may need addressed sooner.

 

[macdonald88]

I have been having all these symptoms since I was diagnosed in march 2011 the blood and mucous haven't lessend throughout this time

 

[Dukeis]

I have never heard of just switching from one to the other like that and then switching back. You developed anti-bodies to these meds. That could be the reason the remicade is not working now. When you say 5 to 6 Humira injections, did you just take the loading doses? You start with 4 shots the first day, then I think 2 weeks later you take 2 more.

 

[macdonald88]

I had 2 doses in one day then went back a fortnightn later and had another dose, I think it was 3 visits I had to go into hospital so 4 injections in total I had 4 I took home with me and had to do one double dose so it was 8 injections in total but after the first 3 I my leg started swelling up at the injection site bigger than the size of my palm, my GI contacted the manufacturer but they have only had several cases of this reported so I had to come off it.

 

[Clash]

I agree with Dukeis, maybe you should contact your consultant and try to be seen earlier. It seems a really long time to go with no improvement and if you are not responding to your particular treatment this should be addressed sooner rather than later.

 

[macdonald88]

Thanks Clash I only saw my GI on Monday and he said he would see me in a month, my next infusion is on the 3rd of January will prob see him then as he normally pops in to see me but I just feel he's not listening to me.

 

[Dukeis]

Did you do the injection in the same leg each time because I have heard of that causing problems.

Going back to your symptoms you are having now. I would be really concerned if things have not improved in the amount of time and I would be looking for someone that is willing to address my issues. Really January is to long to wait with your symptoms.

 

[Dukeis]

Thanks Clash I only saw my GI on Monday and he said he would see me in a month, my next infusion is on the 3rd of January will prob see him then as he normally pops in to see me but I just feel he's not listening to me.

If you feel he is not listening to you maybe you should consider a change in doctors.

 

[macdonald88]

I alternated each time but I got a reaction in both legs. I think I will make an appointment to see my doctor next week.

 

[macdonald88]

I have thought about it but the next GI specialist is 2 hours away and Its not fees able with work etc especially getting for an emergency appointment.

 

[Dukeis]

Hopefully you can get seen soon and get some relief. You have been suffering way too long. Good Luck!

 

[macdonald88]

Thank you for your advice and support I feel like I am going round and circles and keep reading the warnings that come with the meds and tell the about my symptoms. I will get there eventually.