Remission not in sight.

[Sniffles2010]

Hello to all! I am new to this site and am hoping for some feedback and advice for my particular situation. I have been diagnosed with crohn's dx since early 2010. I feel like I have been on everything under the sun. I am currently taking 6MP 100mg and Remicade 10mg/kg(this is a double dose) every 6 weeks. I have not hit remission yet. I may have a week or week and a half in between treatments where I feel somewhat better, but I am no where near remission. I have recently been sent to a rheumatologist and it looks like they will be diagnosing me with lupus as well. Does anyone out there take remicade and it not help? I don't know what else to do, I took humira before the remicade and it landed me in the hospital twice. I had a horrible reaction. I have also found that on my treatment days I have to spread out the infusion time from a normal 2 hours to 6 hours because it makes me so sick. I do premedicate before with benadryl and tylenol and then they give me phenergan IV in the beginning, the middle and at the end of my infusion to help with the nausea and vomiting.

 

[Angrybird]

Hello and welcome to the forum, I am sorry to hear you are still struggling to feel well

Out of interest what symptoms do you continue to have? How often do you see your GI and what have they said about the continued problems you are having? With regards to to the Lupus what symptoms do you get relating to this and when did they start - was it before or after you started the Remicade?

AB
xx

 

[Sniffles2010]

I have 8-10 bowel movements a day that are watery with tons of mucus, almost constant abdominal pain, differing in severity, nausea/vomiting, joint swelling and pain, fevers. These symptoms have been there from the beginning. October will make it two years that I have been on remicade. The joint pain and swelling is interesting because it's like my internal indicator. I know when the swelling and pain is severe that a bad bout with my stomach is 24-48 hours away. When the stomach issue gets really bad then the joint problems subside. I do see a GI doc and his physician assistant as well as my primary care physician. I also have chronic kidney stones and pass about 3-4 a month on my own. I have done that since I was 20 and i'm now 36. When I take my remicade I am usually down in bed for 2-3 days. I take it on a Friday and mostly sleep until Monday when I have to go to work.

I am just really frustrated right now. The docs don't know what to do because even though i'm not in remission my lab work comes back inconclusive. I honestly believe that they are not getting my white blood cell count low enough to push it into remission. I am somewhat fortunate because I am in the medical field and feel like I can brainstorm with the best of them. I have worked in clinical labs for the last 12 years. If you have any info or suggestions I am greatful.

 

[Angrybird]

Is it just bloods that they do to monitor the disease? If so I would say they perhaps need to be more tests again so look at was is happening inside, to purely base things on bloods and to discount symptoms does not make any sense to me.

Also I hate to mention them but have they given you steroids at all and if so how long ago was this and have they ever helped?

 

[Johnnysmom]

Sniffles,
I was introduced to a mom that lives near me after my son was diagnosed and his case sounds like yours. His case was considered "refractory" and he tried and failed everything. Was on Prednisone for 3 years on and off. Eventually he had to have surgery and they removed the very worst parts. What I found interesting is that they put him on just 6mp after the surgery and he was immediately in remission. I never spoke to his G.I. obviously but I am wondering if when someone has a refractory case it simply means they have areas that are so inflamed that the meds can't work, not that they have a type of crohns that meds don't affect. (This might be obvious to others but it is not the way I thought about the disease before). So to make a long story short she put off him getting surgery, trying and failing everything, but the surgery put him into remission and the 6mp has kept him there for 7 months. I am sure every Dr. has different idea of when enough is enough and surgery is needed.

I sure hope you find something that works for you soon. I wish I knew more, I have more questions than answers at this point.

 

[Sniffles2010]

@Angrybird--

No, blood isn't the only way they are looking at things. I have been on Prednisone off and on, Entocort(gut steroid) and the side effects just about kill me and they have done scans(CT, small bowel follow through, abdominal studies).

@Johnnysmom--

I have really wondered lately about the surgery. I haven't had any fistulas or blockages and so I'm thinking my current doc won't go that route. I just feel if they could take out the problem areas that I would be in a lot better shape than I am right now. Unfortunately they have also just diagnosed me with Lupus and i'm working with a rheumatologist on that matter. I'm happy that your son is doing well now. I hope that the crohn's does not reappear anywhere else.

 

[Ckt]

Sniffles..my labs are always normal..even during my worst flares with visible inflammation on ct scan they remain..sigh..normal. So I know the frustration! I probably had had crohns since I was 20 when I was in a hospital in London and they allowed my appendix to rupture as I was misdiagnosed..loads of abdominal surgeries during my 20s,healthy in my 30s,diagnose when I was 40. I haven't achieved lasting remission since being diagnosed.i had similar problems with remicade until I began vomiting as soon as the remicade reached my blood system and I was premedicated too. I'm now on humira but have now had way too many symptoms that seem refractory to steroids and humira so I insisted to finally be changed to cimzia. And I'm seeking another opinion on where I should go from here at a big IBD clinic 5 hours away.
Have you thought of seeking another opinion? My current gi doctor welcomes it. To me, it says something not so great if a doctor isn't open to other input but mine is.
I seriously want to be considered for an ostomy. I know it's not curative and huge lifestyle changes. Yet at this point, I wish to have a quality of life that includes leaving my home instead of staying near a dang toilet..and I have been incontinent too.its too much!

 

[tots]

My blood work has always been normal until this last flare up.

Three Remicade treatments- and still no Remissin.

Sry your having such a hard time.

lauren

 

[Sniffles2010]

Ckt,

Thank you for your post. I am so sorry you are having to go through this. I will say that it is nice to know i'm not alone in what is happening to my body. I am considering a second opinion. I saw the PA last week and he is frustrated and stumped just like I am. They had me on entocort since Aug. 1 and in that short time I had gained 15 pounds of water weight. He discontinued it since it was not giving me any relief. My legs and feet were so swollen that I couldn't get into my shoes and some of my pants. Thank God that the swelling is starting to come down. They called me back on Friday and want to do another EGD and colonoscopy. I think it's a good idea, it's been a couple of years since my last one and things haven't improved.

Do you happen to get the crohn's associated arthritis? Is there anything you do in your daily regimen to relieve stress or to make yourself feel a little better? Right now I try to take long hot baths with some aromatherapy on days where my joints are just killing me. I am also transforming our guest room into my "retreat". I have decided that I want a place to go that is pampering just for me. It's a slow process, but it's going to be well worth it in the end. I told my husband that he currently has his "man cave" and that this room will be "my retreat" with what I consider little luxuries.

Cara

 

[jami]

Good idea on the "retreat room", I did the remicade for a few years, and as you, I did it on a friday so I could rest the whole weekend before going back to work...Am off that and have been for a few years, did the humira and that worked for a short time...they are switching me to cimzia since my last colonoscopy a few weeks ago. As far as labs go, they can not get my WBC down or my ESR, that is way out of control. They also put me on entocort which is not working in my opinion! To relieve stress, have you tried the eucclyptus spearmint stress free line from bath and body works? I love it, it is so relaxing!! Oh, and it dont matter what I eat, like last night, I ate the healthiest meal in the world and I was kicking myself about 15 minutes after I ate it and the diarrhea started in this morning again.

Im glad the swelling is starting to go away and I hope they get it all figured out for ya, if ya need to talk to someone you can message me if ya want!!

 

[Ckt]

Cara..that's a great idea to make yourself a sanctuary!i don't have the room but then I live alone except when I'm too sick and end up staying at my folks even though I'm 51! somehow it helps to be loved on and to be able to watch unlimited tv! I don't have a tv because I have associated it with illness..I know it sounds strange but I just don't want it in my living space when I'm well!ehich unfortunately hasn't really been happening on a daily basis for a couple of months..or five!i can't really remember!
I love hit baths with aromatherapy oils.. I buy essential oils..lavender,bergamot,sandlewood to name a few..and I do have arthritis too with my crohns. I've been having the weirdest incidental pain(compared to my gut) of pain in or around my right hip..it's not the typical arthritic pain in used to so I'm thinking it's some weird referred pain from my belly..
Keep on hanging in there and taking care of yourself!cindy

 

[Sniffles2010]

@Ckt--

Have you ever thought that the pain around your hip could be a kidney stone? I have suffered with kidney stones since I was 20 and now know that it was due to crohn's disease. I was diagnosed when I was 33 and i'm now 36. Stone pain is different from the arthritic pain and or crohn's pain. What were they giving you to pre-medicate before your remicade treatments? I take 650mg Tylenol, 50mg Benadryl, an initial dose of 25mg phenergan, then 2 hours into the treatment I get a second dose of phenergan and most of the time a pain pill, then at the end of treatment I get a 3rd dose of phenergan. I can't make it through these treatments with the phenergan, it's a Godsend. I get so sick if I don't take it. I usually sleep the whole weekend away.

 

[David]

Hey Sniffles,

Welcome to the community. I'm sorry to hear you're having so much trouble. A couple thoughts for you:

1. As you are on a Remicade AND an immunosuppressant and live in Kansas, make sure they have ruled out your contracting histoplasmosis or coccidioidomycosis or something similar. These are fungal infections and what you've said makes me wonder and they can become opportunistic infections when on meds like yours.

2. I'd research Low Dose Naltrexone if I was you.

All my best to you!

 

[Sniffles2010]

@David--

Thanks for the info. I am very careful about the opportunistic infections!! I am in the medical field myself and sometimes i'm my own worst enemy. I have worked in a clinical laboratory for the last 12 years and run these tests on many a patient. I am interested in the low dose naltrexone. Do you take this medication or do you know anyone close to you who takes this medication and what are the side effects?

Cara

 

[David]

I am not on LDN but am considering it. We have a lot of people on it in the LDN forum I linked you to (here is the link again) who are on it and many are having very good results. In the stickied thread are two studies with very good results and the side effects are very minor compared to the usual treatment options for Crohn's. I consider LDN to be a very exciting treatment option for people with CD.

 

[Ckt]

@cara..I was on remicade in the beginning when all the oral agents failed. It absolutely wiped me out and I finally had built up anti oldies which caused my face to swell even after being premedicated with different things. So off remicade I went. Then I waited until humira was finally ok'd for crohns. I've been on that for a few years and now..zip. My labs are normal, cat scan a month ago showed no active disease, colonoscopy prior to that showed mild crohns..after two course of Iv steroids and a high oral dose of them for about a month.
My last cat scan had shown a nonobstructive kindney stone. I had wondered if that stone had been on the move but I don't know. I haven't seen a stone but I don't think I would anyway with the copious amount and frequency of D. I do now have ulcerations between my anal area and vagina.that's new and quite uncomfortable. I've never had fistulas but have had abscesses. I think anything could happen with this disease to be honest. I guess until I start pooping outside of where it should naturally happen they won't do much.
I'm a bit insulted by the er doctor saying I have 'chronic pain syndrome'.. I googled it and basically he's saying it's in m head..right. Tell that to my butt would ya??
I'm confident my consult in Chicago will give me answers. I am also seeing a colorectal surgeon before I go to Chicago just to ask about exactly what
Y options may be. If I'm not a surgical candidate,ok. But it will help my peace of mind to st least check it out.

 

[Sniffles2010]

@Ckt--

I had horrible reactions to the Humira. It landed me in the hospital twice. I've been on Remicade almost two years now and my dose has doubled in the last year. I have a colonospy and EGD set up for this coming Friday. I'm so tired of not getting any better. I can totally relate to the whole ER situation. I don't think anyone can really understand unless they have been through what we experience. I hope that you can get some answers with your consult in Chicago. Let me know.

Cara