A Dr. to work without meds???

[WebJunk]

I've be on Remicade (5mg/kg every 8 weeks) for three years but think I've decided on stopping. Been struggling horribly from things (dizziness, extreme fatigue, short of breath, brain fog & more) that I believe may be side-effects of the Remicade all of which have been worsening the past 3 years. My regular doctors have performed tests and have not been able to identify any cause. Have days I struggle to take care of myself and live alone. Some times driving doesn't seem safe for me. Gave up on trying to fully maintain my house. Fortunately I don't have to work anymore.
My history with a lot of medicines the past few years has not been good. For specifically my Crohn's have been on 6MP, Imuran & Humira all which I had to stop for extremely bad side-effects. Have always been careful with my diet and exercised regularly (tho currently the gym can be dangerous at times) my entire life. Steroids (Pred & Budesonide) do not work for me anymore as I've become steroid resistant.
My current GI & regular doctors do not want to discuss the subject of stopping at all or any possible alternatives. My Crohn's might be in remission but blood tests are not a reliable indicator for me but my last CT scan in October was considered good. I know medicine is probably the best. I just would like to have some days to actually accomplish things. There is a trade-off that would be worth it for me. I was 7 weeks late on an infusion in January because of denial from my insurance and thought I felt better (better, not perfect) even getting some things done I put off for a year, a week or two prior to that infusion. Another reason I think Remicade might be the issue.
I'm not looking for a cure, miracle diet or an equal to medicine. Just something to help. I woke up three hours ago, only watched the news & did some email and I need a nap which after will take an hour or two to wake up from. I'll take another nap or two as well. This is my normal day lately.
Any GI doctors that are willing to work without medicine?

 

[ronroush7]

I've be on Remicade (5mg/kg every 8 weeks) for three years but think I've decided on stopping. Been struggling horribly from things (dizziness, extreme fatigue, short of breath, brain fog & more) that I believe may be side-effects of the Remicade all of which have been worsening the past 3 years. My regular doctors have performed tests and have not been able to identify any cause. Have days I struggle to take care of myself and live alone. Some times driving doesn't seem safe for me. Gave up on trying to fully maintain my house. Fortunately I don't have to work anymore.
My history with a lot of medicines the past few years has not been good. For specifically my Crohn's have been on 6MP, Imuran & Humira all which I had to stop for extremely bad side-effects. Have always been careful with my diet and exercised regularly (tho currently the gym can be dangerous at times) my entire life. Steroids (Pred & Budesonide) do not work for me anymore as I've become steroid resistant.
My current GI & regular doctors do not want to discuss the subject of stopping at all or any possible alternatives. My Crohn's might be in remission but blood tests are not a reliable indicator for me but my last CT scan in October was considered good. I know medicine is probably the best. I just would like to have some days to actually accomplish things. There is a trade-off that would be worth it for me. I was 7 weeks late on an infusion in January because of denial from my insurance and thought I felt better (better, not perfect) even getting some things done I put off for a year, a week or two prior to that infusion. Another reason I think Remicade might be the issue.
I'm not looking for a cure, miracle diet or an equal to medicine. Just something to help. I woke up three hours ago, only watched the news & did some email and I need a nap which after will take an hour or two to wake up from. I'll take another nap or two as well. This is my normal day lately.
Any GI doctors that are willing to work without medicine?

Be careful. I took myself off Remicade several years ago because of cost. I ended up with a flare.

 

[The Real MC]

They're out there. My GI was convinced that I could control my CD with diet and the only medication I am on is Pentasa and that's the maintenance dosage.

I saw another doctor in the same department and she suggested a doomsday diet of all these medications. She was also European indian; due to cultural linguistics she wrote "feeding tube" in my records when I described "PICC tube" - big difference! I later complained to my regular GI, and he agreed her diagnosis was incorrect.

You are entitled to a 2nd opinion so if your doctors won't discuss alternatives then shop around.

 

[WebJunk]

Be careful. I took myself off Remicade several years ago because of cost. I ended up with a flare.

Thanks. I know the risk of stopping Remicade.
I also know there is a risk of continuing. My symptoms that I think are from Remicade have been getting continuously worse. If they get any worse I won't be able to keep myself fed. I already go without eating on occasion because I can't get to the store for groceries or too weak to prepare anything.

 

[WebJunk]

You are entitled to a 2nd opinion so if your doctors won't discuss alternatives then shop around.

I've already seen 12 different GI doctors over the last decade! I was misdiagnosed by the first three (two couldn't reach my inflammation in my intestines during a colonoscopy & all three ignored findings in my CT scan that included Crohn's) until I went to the Mayo Clinic. Two more formally resigned as my doctor because of issues I had from medicines. One dropped me because I get my colonoscopies at the Mayo Clinic instead of him. One retired. Could go on :ybatty: Unfortunately, most doctors are in the few GI doctor groups here and once assigned one doctor, I can't get to another doctor in the same group. The doctor in a group I have now is only because my regular doctor insisted to one of those groups that I been seen by a particular doctor.
I have traveled as far as three hours to see a doctor.
That is why I am asking here......

 

[ronroush7]

Thanks. I know the risk of stopping Remicade.
I also know there is a risk of continuing. My symptoms that I think are from Remicade have been getting continuously worse. If they get any worse I won't be able to keep myself fed. I already go without eating on occasion because I can't get to the store for groceries or too weak to prepare anything.

Maybe you should inquire about another biologic.

 

[WebJunk]

Maybe you should inquire about another biologic.

The only biologic left is Entyvio but my Mayo Clinic GI doctor had already warned (from their own tests & experience) I was at high risk for bad side-effects from it based on my history.

 

[crohns35]

The only biologic left is Entyvio but my Mayo Clinic GI doctor had already warned (from their own tests & experience) I was at high risk for bad side-effects from it based on my history.

Are you taking any b12 or minerals

 

[crohnsinct]

I know you said you had a full work up but did you get your b12 and vet D levels checked? The symptoms you are describing are very common with a b12 deficiency. I have known people who were pretty seriously debilitated with this deficiency. People with Crohn's sometimes do not absorb b12 efficiently.

Sorry I am not familiar with adult docs but I know there are some pediatric docs who will use Exclusive Enteral Nutrition and diet to try to manage disease. Some do EEN for 6-8 weeks and then maybe a very strict SCD or IBD aid diet for 4 weeks and cycle on and off or will do a level of EEN and some food (usually 80% EEN and 20% food). There isn't a lot of evidence of mucosal healing with these methods but many centers are investigating the role of diet further. Perhaps you can find a GI who is well versed in this method. Maybe phasing in diet/EEN to help manage disease might help you reduce Remicade to a level where it doesn't cause the nasty side effects?

I also wonder if another biologic might work better for you.

 

[WebJunk]

Are you taking any b12 or minerals

B12 is always normal so don't take any. I take Vitamin D, Iron, Potassium, Magnesium and daily multivitamin. I'm also tested every few months for them and what I am currently taking is keeping them in normal range.
All of these are what my doctors told me to take. I try to limit things as I often get stomach upset & pain (non-IBD) for some reason.

 

[WebJunk]

I know you said you had a full work up but did you get your b12 and vet D levels checked? The symptoms you are describing are very common with a b12 deficiency.

As I mentioned above, been tested and always normal for B12.

Some do EEN for 6-8 weeks and then maybe a very strict SCD or IBD aid diet for 4 weeks and cycle on and off or will do a level of EEN and some food (usually 80% EEN and 20% food).

I actually tried the SCD diet a few years ago after one of my medicine failures. Almost killed me. Not for me.

Perhaps you can find a GI who is well versed in this method.

I'm trying to ask here for a GI doctor since my local and known resources there have been exhausted.

I also wonder if another biologic might work better for you.

As in my earlier post. The only Biologic left to try is Entyvio but my Mayo Clinic doctor has warned that I'm at high-risk for serious complications from it.

 

[crohns35]

I didnt see in your write up anything about Cimzia. I am taking it and it seems to be doing pretty good. Have you tried it?

 

[Bufford]

Sometimes one has to go with one's gut so to speak. I've been on many of these treatments including Remicade with varying degrees of success that are often followed by failier. Cipro with Aza worked well for awhile before going against me in miserable ways with bone loss and fluoride poisoning amongst side effects. My dentist said my teeth were dissolving before his eyes while on it.
Remicade made me sick after the loading infusions, and took me a full year to recover, while some like Pred can help knock down a flare.
The only one I take regularly now is the Salofalk enema to keep things in the rectal area under control, together with diet, lifestyle and vitamins. I found Turmeric in powder form very good and powerful in controlling my Crohn's further up my GI tract.

Having said that I am off all these chemical treatments and will have nothing more to do with them. I am a firm believer that these burn the candle on both ends. Many eat up the liver, kidneys and lead to many of the side effects you describe.
Once I dumped the treatments I got my life back. I would only consider going on one only if it were an emergency.
We are all different, having said that for some Biologics have been miracles, for others they have not worked or became nightmares. We know our bodies better than anybody else, and by conveying that information with your doctor one can develop a good doctor patient relationship.