GI Doc Burn Out Due To Constant Distress

I don't have Crohn's, but get episodes of extreme fatigue when my arthritis is in a flare. I try a week or two of NSAIDs and if that does not work, it is prednisone with a fast taper (40mg x 4 days, 30mg x 4 days, 20mg x4 days, 10mg x 4 days). I only have to do this once every year or two, but it snaps me out of it every time. But, my flares were not so few and far between before I was on biologics. First I was on Humira for several years. Now I am on Simponi. Night and day difference for me.

Jan

MK,

I once tried to describe the debilitating joint pain and muscle aches to my GI as feeling like poison was being injected into my veins (that is how widespread the and unrelenting the pain is). I know this may sound crazy to some people, but waking up in sheer pain in every muscle and joint in your body from the top of you shoulders down to your feet is very debilitating. I also have one swollen ankle that never seems to subside with no answer as to what causes this.

When your muscles and joints hurt if you simply touch them, you realize something is just not right. When you take a long walk and after finished, your inner elbow and wrist joints hurt after, you realize something is off.

I do not have crohn's, but sometimes wonder if I may eventually be diagnosed with it from all the peri-anal issues I have had, as well as the severe joint and muscle pain I experience since my colectomy. Prior to my surgery, my retired GI told me I had Crohn's colitis and then changed my diagnosis to Ulcerative Colitis and said the original diagnosis was in error. I question that change in diagnosis now based on many of the issues I have had since jpouch surgery.

Doctors are really trained to treat patient's illness and pain with medications. When they are not sure what is the best method of treatment I do think they tend to rely on us more than they would like to admit for a treatment plan. I often email my GI with the treatment plan I am attempting based upon the level of pain I am in, realizing, of course, that I am attempting to juggle/alter various medications I have been prescribed at various dosages to see what works best.

I sure hope you get some relief from the pain you are in. Possibly you can discuss other crohn's medications that you may still have as options that may alleviate some of your discomfort.

I describe the fatigue I experience with my arthritis flares is like walking through molasses instead of air. My heart races just walking across the room and I break out into a sweat.

Jan

Thanks Jan,

I will look into Simponi, new to me. Good description of the fatigue too, spot on.

*NEW*
Is Golimumab approved for Crohn's Disease? Is it used off-label for Crohn's?

Jeane,

I never had fatigue like this when I had UC, this is really a new thing for me and it is very debilitating.

Nuc~

Not that I know of. It initially was used for RA, AS, and Psoriatic Arthritis. Just recently it was approved for use in UC. For some reason, not Crohn's. Odd, since it usually is approved for Crohn's before UC.

I would not be surprised if it is used off label, but generally, insurance won't always pay for off label prescribing. But, if your Crohn's is iffy, they could just change your diagnosis if you wanted to try it. If you have not tried Humira, that might be a better first option. Personally, I am glad I was able to avoid Remicade, since it was by IV infusion only, and the risk for antibody formation and allergic reactions is high (because of the mouse protein base). Humira and Simponi are fully humanized.

Jan

Jan,

Currently injecting Humira every other week (40mg/0.8ml), and low dose Azathioprine (50mg/d) was recently added.

I was just recently approved for SSD. What a relief as I'm just about worthless for any productive activity. Currently still cash pay for all but when my new Insurance kicks in I will be asking questions.

I seem to tolerate the Humira though I usually feel nausea the day of, and after the injection. I can't assess the Azathioprine at all though it did not work when it was my sole Crohn's drug at 200mg/d.

I've been having weakness and fatigue for at least a couple of years now but I'm so slow on the uptake mentally I always assumed that Narcotics were to blame. Only recently did I correctly link it to Crohn's. Those poor Narcotics get the blame for just about everything.

I'm still resolved to determining if I am suffering from Narcotic Bowel Syndrome, and if I am, taking steps down the road of reduction and detox from.... oh the pain I will be in for the next few months. Not looking forward to it.

I appreciate the tips!

MK-

I think the weakness, fatigue, mental effects of opiates are mostly when you first begin them. That effect should dissipate as you acclimate to it. For me, I am actually more mentally alert after a dose of my Norco. Not sure why, unless reducing pain allows me to focus onother things better. Just a theory...

When I was on Humira, I needed to take it weekly because I definitely felt an increase in symptoms after only a week. I guess I had developed antibodies. So I was happy to switch to Simponi, which is a monthly injection (the bonus is that it does not sting!).

Jan

Agree,

Depending on precisely where I tag myself with that pen it can be uneventful or a nasty bite that turns into a purple welt.

As for the Narcotics, they all have a unique personality. As you say, I found Norco sort of energizing and beneficial, almost a life tonic, just no downside for me there. Lol, and that's the problem, it's just all good. Very hard to prevent dose creep (yet, you've managed it, very good).

**Below is my humble opinion only**

Morphine is the sleeper dozer pill with side effects a mile long even at moderate doses. Boy, you puff up, histamine goes nuts, and it's a relatively weak pain killer to boot. Some people can tolerate over 200mgs/d, how, I have no clue. My eyes would be glued closed at that dose.

OxyCodone is another energizer that also has a bit too much euphoria for anyones good sense, well we all know what the word Oxycodone means in the world market, ABUSE. Well, Duh! Thanks big Pharma. Why do they make this crap? Yer good for a month or so on Oxy then your tolerance starts going through the roof, the pain killing drops like a rock and you are left feeling like a real junkie because you MUST either start to trickle off or you increase your dose. There is no happy operating range with that drug, it's just useless. They couldn't devise a more humiliating drug.

Dilaudid is one level up, and it actually reduces pain, yaay! However, it's so short acting and viciously addictive that you must know what you are doing. Euphoria can be present at times but vanishes quickly like a mirage.

There is only one Narcotic that strikes the balance correctly. It has a very clean profile, low side effects, it can be dosed up very high and still not ramp up your tolerance. It has low euphoria, and it's long acting even in its IR form. Forget about its Long Acting variant and the TimeRX 12 hour nonsense pill that lasts a mere one hour longer than the IR formula and costs hundreds of dollars more. The only downside to this drug is low bioavailability, perhaps as low as 10%, but it's all factored into the dosing charts -and the cost which is high without insurance. Taking it with anything fatty (a spoonful of Olive Oil) raises that 10% considerably, good to know when you really need relief. The big reveal. IMHO- Top Dog of the standard issue Narcotics is IR Oxymorphone.

I actually can't afford my preferred pain killer so next week I start my second choice, Dilaudid. Been here done this so I don't need to panic. I know its nature and I know how to manage it and it may be the last Narcotic I take -Dilaudid may be the one I trickle on out from under... I don't expect it will be a cakewalk from 50mg/d, but those are the cards that I gotta play.

MK-

*More than anyone wanted to know about narcotics, sorry.