Confused...any advise welcome

[Soybean]

Hey all!

I had my 3rd loading dose of Infliximab (Remicade) yesterday morning and in the afternoon I had my GI appt. My GI asked me how I was and I tried to explain but I get so stressed out when I'm in the hospital that I did a really bad job. So much so that the GI's face got more and more perplexed as I was babbling on, which in turn made me more and more stressed so I just got mega embarrassed and lost my train of thought.

Anyway, before I start babbling AGAIN I'll just list the point I (kinda) said to the GI.
1) Throughout the whole time I've been on Infliximab I've felt really tired.
2) My bowel movements have either been constipated (2 days max - I know this isn't really much but for me personally I can't recall a time when I've been 'constipated' for more than 1 day) or diarrhoea. The diarrhoea has ranged from slightly unformed BM's to very loose stools (not totally liquid though).
3) After eating most of the time I feel bloated and sick (haven't actually been sick).
4) When I'm not 'constipated' I have been averaging aboot 3-4 BM's a day (max has been aboot 7-8 a few times).
5) I have been getting pains in my abdomen. Nothing really bad compared to the pain I've had before but noticable, and sometimes going on for quite some time.
6) The pains I've had are a mixture of the following:- pain in the middle of my abdomen very soon after eating that feels somewhere between a pin prick pain to stabbing pain (as if there were aboot 30 pins all pricking me in and out at the same time?). Pain in the LRQ just above and in a bit from my hip, this pain is more pronounced like a jabbing/throbbing pain and I 'see' it as a 'high pitched' pain (see what I mean aboot confusing the GI!) I've also had this pain a bit higher up in the URQ and right in the upper middle part of my abdomen (just below my diaphragm). These pains have been present for the last 2-3 weeks.
I have also felt (as in with my hand) and heard my 'food' moving through my intestines on three occasions when I had the jabbing/throbbing pain in the LRQ and the upper middle part of my abdomen.
7) My knee joints have been getting varying degrees of stabbing pains and my ankles have been getting stiff (sometimes upon waking and other times developing through the day). I have also had really achy/pulling legs at times.

I have no idea how quickly or how well infliximab is supposed to work. I was only explaining what was happening to me after being asked by my GI (I think he seemed to get the wrong impression of what I was saying) I mean if this is 'as good as it gets' so to speak I'm fine with that as it is so much better than the agonising pain etc I was dealing with before.

I did keep saying to the GI that I have also started back at work on a phased return (this week being my 4th week back, I did 2 weeks of mon-fri x 3 3/4 hrs and last week and this week I've been working mon/wed/friday 7 1/2 hrs with an hours lunch in between) so maybe this is why I'm getting more joint pain and maybe stomach problems because of increased stress.

After pulling a more and more perplexed face he asked me 'did I think the infliximab was working because as he's sure I'm well aware, it is an expensive drug and they don't want to keep giving it to me if it's not working'. I was totally thrown by this cos how am I supposed to know if it is or it isn't working? I have no idea how well I 'should' be on it so I just said ummm hmmm well I feel much better than how bad I have been in the past but not as good as when I was on prednisolone. After a bit more tlking aboot inflixmab vs prednisolone the GI said he was prescribing me 6MP at 50mg d for a month and he will see me once that time is up to see how things are going, and if it's not working they will consider methotrexate. (The 6mp wasn't prescribed because of what I told the GI, they had already decided to put me on it once my LFT was back to normal after my reaction to azathioprine).

I hope this makes a bit of sense to you guys. My head is all over the shop atm, I'm really emotional and I don't know why.

What do you guys think? Is it normal to still feel like this whilst on infliximab or is it a sign of it not working properly?

Thanks for any advice you have

Soybean xx

 

[aliciars]

I have not started my remicade yet - just found out today dr wants to start me on it. But I wanted to tell you that I am an emotional basket case anymore. It's not the meds doing that - it's the stress of this disease. I am getting to the point where I'm ready to ask for an anti-depressant, therapy or both. This roller coaster disease is horrible.

Best of care & remission to you! ((((hugs))))

 

[Soybean]

Thank you aliciars, and good luck with the Remicade, hope it works well for you. I am definitely an emotional wreck atm. Went in2 town to meet some friends for tea. Had to come home early and as soon as I got home I burst in2 tears. I feel so alien to everyone atm. Hope that soon I'll be able to get my emotions under control cos it's doing my head in so I can only imagine how annoying it is for those around me!

Take Care xx

 

[Naddie4589]

Hey there i had three remicade infusions total. The first was like a miracle lol, yes i was tired alot, but no diarhea only one time to the bathroom per day which was great. This releif lasted only about a week and a half. I took my next infusion at two weeks. Again i felt great, but not as great as the first time and started to see blood in my stool again at one week. Third infusion, i felt good for one day, after that everything went back to how it started The doctor said it probably wasnt working for me. Then i started humira. I had two loading doses, and that is when i really felt the joint pain, it was terrible and i still did not feel better. 2 weeks later and another shot i was really feeling the difference, minus the joint pain. Ever since then (and now i am on my 5th shot) i have been taking the shot every 2 weeks, but right when two weeks comes around, all my symptoms come back, but as soon as i have the shot i feel better. So of all your symptoms the two i saw with me were the joint pain and tiredness. Maybe it isnt working for you, or maybe it just needs time. But don't wait too long on yourself, if its not working for you definitely seek starting humira, its easier with a shot every 2 weeks anyways, but if the remicade works then totally stay on it sorry thats all i can help with

 

[scoutfinch]

Hi Siobhan-

Seems like you've been stressing quite a bit - for good reason. Here is a tip for next time: write down your symptoms and concerns in a concise organized manner on paper (as you've done so well in your post) before your next appointment. This will make things easier on both yourself and your doctor - and you will be less likely to forget anything. Also, write down any questions you may have for your doctor. My GI is sometimes tough to get a hold of so I make sure I ask as many questions as I can during our appointments. He's generally very patient as I go through my list.

I'm sorry that Remicade doesn't appear to be working very well for you. In most cases I've read where Remi was successful, it typically starts working within the loading phase. For me, it started working within a week. I had my third loading dose about 3 weeks ago and I feel about 90 percent better than I was pre-Remi. I do have a few symptoms still, and probably will continue to, but the difference in quality of life is pretty dramatic.

I truly hope the next drug on your list, 6MP, works for you. Unfortunately, "trial and error" seems to be the only way to success. Good luck - and try to tame the stress! (Try closing your eyes and concentrating on breathing deeply. Actively release the tension in your body, particularly in your face, shoulders and abdomen).

By the way, I think your city is lovely. Visited a few years ago and was pleasantly surprised by the food. Better than most of the meals I've had in the UK. Great markets too.

 

[Soybean]

Thanks for your replies Naddie4589 and scoutfinch.

Thanks for the tip on writing everything down scoutfinch, I will definitely do that for my next appt. I did that in the appt before last (where I saw the GI's registrar) and was much more concise when speaking. This time I was going to but I kept putting it off. Then all of the sudden it was the day of my appt and I didn't have time! I think I put it off cos I don't like to think aboot it. Putting everything down on paper makes it all the more real. I'm very good at just automatically saying 'I'm fine' when anyone asks how I'm doing.

So it's been 6 days since my infusion and 5 days since I started 6mp. I have only had one episode of D which is hopefully a sign of things to come. My knees and ankles are still the same, but I haven't had any pain in my stomach apart from two times when I urinated. It was so painful it made me scream, almost as if my insides were being twisted(on the LRQ). I think it was because I was totally full of urine and had put off going to the loo cos I was busy lol.

Aww scoutfinch, I'm glad you enjoyed Cardiff There are some fab markets, espesh the annual food market down the bay so many gorgeous things to try from all over Wales.

Soybean xx

 

[H Barrett]

Siobhan–
I've been on Remi for over a year now. This is actually my second go-around with it. the first time, roughly 2.5 years ago, I developed a fistual that abcessed and had to go off the meds until it healed. Outside of the fistula the first time Remi seems to work great for me and been declared in remission.

I seem tired the first day of treatment and starting again about weeks 6 or 7 out from that. My movements the last few weeks before a new dose always seem irradic, sometimes few sometimes several loose ones a day. Within an hour of completing a new dose every 8 weeks I always seem to have an urgency for a movement but it is usually really good. My second time starting Remi I was on Pentasa too just to help fill any gaps until the Remi had time to build up in my system, that really seemed to help.

One of the side effects of Remi is joint pain. Some of the literature I've read says that many people feel there life is better on the drug even with the joint pain, they see it as a fair trade off. That will be something you'll have to judge for yourself. I know for me I would take joint pain over where I was 5 years ago when I was diagnosed (so go to gain weight).

As far as the emotional issues ... cronic illnesses often seem to be accompanied with depression. They can be a lot to handle especially on top of having a "normal" life. I was on an antidepressant for the first two years. Now that things have seemed to even out I seem to do fine taking it seasonally. Something you may want to have your family doctor look at is your vitamin D levels. When those are off you can experience depression too.

I agree with Souctfinch about writing things down before appointments. That really helps me, especially when things seem really chaotic and frustrating. Best thing that worked for me was to write things down the day they happened and then type them into a word document. And if you have a smartphone put it to good use and get a notes app to jot down notes to remember later.

Really hope Remi works for you. I know what the uncertainty feels like but don't loose hope and try and stay positive.

all the best
Helen

 

[Sadie123]

I certainly sympathize. I do the same thing every time I talk to my GI. I never express myself right and sound so confusing. Then when it's all over i'm kicking myself because I didn't say anything that made sense.

I just had my first remicade infusion less than a week ago. I feel better, but I still have some pain too. I was also really tired and have some mild joint pain. But I agree, how do you know it's working or not? Will you feel completely better or will there still be some pain?

 

[xoxava]

Remicade has been amazing for me and i started feeling better immediately. I've has a few problema in between. But definitely seek another option if it doesn't work for you, no need to suffer!

 

[golanv]

Siobhan,
I am sorry that you are feeling stressed. My son was on remicade for quite awhile. It literally saved his life. Joint swelling seems to be a side effect of crohn's. My son went through joint pain but it has tapered off. He did have bloating and bowel movement inconsistencies.
It is good that you are telling your dr all of this. Don't feel pressured to give him a well delivered oration! It might help if you keep a journal of eating, pain and bm's. That way when you go to the dr, you are not trying to remember everything. also, you might notice patterns and then you can make adjustments to your life/diet. Most of all, try to take a deep breath and relax. While dr say stress does not cause crohn's, we all know it doesn't help it. The dr is there to help so take your time. If possible, get someone to go with you. Someone you trust. Talking about your bm's is personal and embarrasing but if you have someone you can trust, it may help you relax.
Good luck and I'll be thinking of you.

 

[Gunny]

Remicade "failure"

Did my 3rd dose and my GI determined that it is not for me. He now wants to switch me to Humira, which by the way, is what he wanted to originially put me on, but my military insurance wouldn't pay for it.
I thought initially, I was going to have a great response to Remicade, but being in the military is difficult to avoid stress, and I think the stress is what failed me and not the Remicade itself. It was also during the time that I was decreasing my prednisone from 40mg to at the time down to 5mg per day, so of course I am back on 40mg per day and as much as I hate it, am doing somewhat better. This crazy disease is so "hit or miss" with all the different combinations and how everyone reacts so differently to them. Why can't we have something like tylenol for Crohn's, you know, you have a headache, you take a tylenol and you're good; you have a Crohn's flare up you take "xyz" and your good! Wouldn't life be so much more simple!?!
Thanks for letting me vent. I wish you all the best!

 

[SdN]

I'm scheduled to have my 4th infusion (my first maintenance infusion after the loading doses), next Tuesday. Initially, after the first infusion, I felt great but I later learned that was because I was on 20mg of Prednisone and that combined with that first dose of Remicade was enough to kick things into remission. After I gradually weaned off of Prednisone my symptoms returned somewhat. I was worried Remicade might not be working but 11 days ago on the 1st things significantly improved. I don't know if the flare I was experiencing tapered off a bit or if it was the Remicade slowly doing it's thing and my bowels gradually healing but I would say I'm now maybe 80% in remission.

Siobhan keep in mind sometimes stress itself will exacerbate the little things and make them feel worse. That's what they say about Crohn's, stress won't cause a flare but it will make a flare feel much worse. Just something to consider if you are feeling really upset.

 

[Soybean]

Thanks for the replys guys Sorry it's taken me a while to respond.
So it's now almost 3 weeks since my 3rd infusion. My daily joint pain is definitely decreasing, I'm still getting minor pains walking up and down stairs and also if I do too much housework (I hoovered, mopped, dusted, cleaned the bathroom etc etc over 2 days and each time I sat down the bottom of my back, knees and ankles just seized up). I had my appt with the physiotherapist and she has given me some strengthening exercises to do each day which are definitely helping and I start hydrotherapy next Friday.
I'm mainly constipated but have had a few episodes of D (one of which was just liquid). I've had a few minor pains in my stomach on the LRQ and have had that horrible pain whilst urinating aboot 4-5 times now, the last 2 times the pain has also shot up my left side finishing just under my left rib and one of those times the pain stayed for quite a while but not as intense. I think the remicade seems to be working a lot better now, the only major thing that's bothering me is the tiredness but I guess I'm just gonna have to accept that unless I have high strength prednisolone for the rest of my life (uh no thanks!) I'm going to always be tired. I've suffered with tiredness in varying degrees since my teenage years so it's nothing new lol

Thanks golanv for the suggestion of taking someone with me to my next appt. I asked my boyf if he would come with me. I explained that I don't need him to do my talking for me, but to butt in if he thinks I'm getting all stressed and muddled lol!. Also I've asked him to ask my GI certain q's just to clarify some things, Sam's a lot better than me at getting his point across and also voicing his opinion if he doesn't agree etc, I just get too nervous and feel like I'm bothering the Dr. I know the Dr's there to help me but I don't handle conflict very well (real or perceived) so rather just 'smile and wave' as the penguins in madagascar say lol!

Helen re testing my Vit D levels, what test checks them? I have just re-started FBC's every 2 weeks because of the 6MP would it be covered in that? Ah good idea aboot a notes app, I've got the GI monitor app but haven't really been using it properly but a notes app would probably work better regarding symptoms - thanks I'll go look for one now

Soybean xx

 

[H Barrett]

Siobhan~
The vitamin D can be checked with a blood test. I don't know what it's called but your regular physician should be able to check it if you ask that they check your levels. Hope this helps.

Helen