I am refusing prednisone, etc. ... ?

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beginners mind

beginners mind

Joined
Jun 5, 2014
Messages
17
Location
alex, va,
hi new family,

i was dx'd w/Crohn's approx. 25 yrs. ago w/first flare. then, asacol & remission. ( colonoscopy )

last colonoscopy ... mmm ... 5yrs. ago. dx crohn's/and or/ uc.

currently, i have had postmenopausal bleeding, so, tests. ( uterine ultrasound, and subsequent uterine biopsies. ) my biopsies were neg. and showed a thickened lining and polyp. i was scheduled for surgery and Then began my first Major flare. ( i suspect due to the physical pressure of those tests ).

i (Had to ) cancel surgery , which i Need. then, went to my (new) GI, who said she would not do a colonoscopy while i was flaring, b/c i could perforate.

... called my gyn. and explained; ...asked for her advice re: surgery. she said that she would not do the surgery due to risk of perforation. sooooo ......

between a rock and you get it. :) ~ tried lialda and voice went down 3+ octaves and was croaking like a bullfrog, so i stopped that and went back on my tried and true Asacol. ( 3,600 mg/day )

shorter story-ing: last 2 GI's wanted to put me on pred. and/or infusions.
i said no; they are Bad drugs. i am not ready/do not want to go there.

currently, i am bleeding with snake or looser poops and mucus. sometimes, no blood. ( i have stage 4 hemorrhoids ) pooping? mmm..... 2-4x's /day.

my question to those wiser than i ..... am i endangering myself ? or, ... what do you suggest ? btw, my pcp & gyn. are awesome. haven't found an Awsome Gi. though. :(

sending my love to everyone here. b-mind :) ~ :worthy: :heart:
 
some medication containing cortisone can be used in topical rectal foam if your disease is located in sigmoid and rectum, which seems to be the case with the symptoms such as red blood and mucus. Mesalamine can also be taken in suppositaries. if i remember correct, both forms of suppositary medecine can be used in alternate days in the same week. I used both of them in the past, with some success but did not induce remission. If the disease is also higher in the colon, those wont have effect in the higher parts though. I dont know about the hemmorhoids condition and these topical agents though. Please do not wait too long before receiving a treatment. leaving your organs in permenant inflammation can lead to more damage and complications.
 
You are. You're ignoring a serious illness because you read a side effect list. Let me ask you, are the consequences of untreated CD such as eventually needing surgery worth it? The drugs you were on before are amazingly mild for CD and are likely not going to help you anymore, you need to treat your illness before the only solution is ripping out your colon because it resembles rotten pork.

Prednisone is not a lifelong drug and you will at absolute worst, be on it for a few months, though the infusions of remicade are likely to last the rest of your life but are less dangerous then you're making them out to be. The side effects more ghastly then, a mild injection site reaction (basically having an allergic reaction for a day or two after) or the occasional URTI are easily dealt with via antihistamines and antibiotics, are resoundingly rare.
 
My son went on Prednisone and 6mp right after diagnosis at the age of 11. He had been losing weight for 2 years and his body actually stopped growing.

Since taking these medications he has gone into remission and grown 9 inches and gained almost 70 lbs. I know these meds are scary but his body has been able to flourish since taking them. In my mind the disease must be much worse for your overall health than these drugs if they can make such a difference in his height and weight.

When we first started them my view was we needed to give them a try. You can always decide later you want to go med free if you feel the benefit does not out weigh the risk.
 
thanks all.
my experience with prednisone has been with and through my beloved.

subsequent to 2 days on pred. ( an adjunct for pneumonia ) she lost the use of her legs.
i saw the connection and stopped the med. her Dr. did Not. subsequently, it took a rheumatoid specialist 1 1/2 yrs. ( on bad, bad arsenic meds.) to send her to an orthopedic surgeon. he DX.'d avascular necrosis within 10 mins. ! ~

she has had 3 total hip replacements .

because i am not sure What i have, and .... etc. ... i am searching for the best dr. i can find before i jump on anything other than what has worked.

it seems that Maybe my flare is subsiding . . . ? ( w/ asacol ) ~ ?

this is my thinking . please let me know if it seems a good idea to " wait and see " or not. ( ? ) ~ again, love.
 
A short term round of prednisone does come with side effects that suck, but all of them are temporary and tend to disappear rather quickly one you're off of it. The implications when on it long term are the scarier side effects that you read about, but people who require it long term tend to have severe, rapidly progressing cases. I was one of those rare cases, there was 6 weeks between the first signs and me in the ER barely conscious and out of it due to dehydration and having not been able to eat in week. I only stopped taking it because my GI convinced me that surgery was the better option, otherwise I would have gladly continued.
 
Has your Dr. done any labs to look for elevated inflammation levels in your blood?

Has a fecal cal been done to look for inflammation levels in your stool?

These two tests could help you figure out if your symptoms are GI issues and if they necessitate Prednisone. If your Fecal cal or SED or CRP are very elevated then I would take the Prednisone. If these numbers are not elevated, and you continue to get them monitored then I would think you have more room to wait and see.

I would ask your Dr. specifically why the Prednisone was suggested. It was a miracle drug for my son, put his inflammation levels in normal range in 6 days.

I am sorry for the bad experiences your loved one has had to endure from Prednisone. I can understand why you are concerned. Please let us know how you are getting along. (((Hugs))))
 
hey funk,
so many un- answered questions . my GI. , when i told her it was a Bad drug, looked at my hun, ... and said " Yes, it Really is ! " ......

OY !!! maybe my body will tell me ?? ( i don't think anyone actually Knows ) do you? ~ <3 ~
 
Oh hi fellow lesbian! :) I'm sorry to have been so harsh on you, sometimes the hetrosexuals just get grating ya know? That's terrible and I completely understand, but in that case it likely wasn't the prednisone causing your partner's limb control loss, in fact that kind of arthritis is also often treated with prednisone (for short periods of time admittedly). Please do have fecal cal protein and CRP levels checked to make sure you're actually working towards remission. Remicade and Prednisone are both vastly less bad drugs then their side effect lists paint them as and I encourage you to not dismiss either drug out of hand.
 
Johnnysmom said:
Has your Dr. done any labs to look for elevated inflammation levels in your blood?

Has a fecal cal been done to look for inflammation levels in your stool?

These two tests could help you figure out if your symptoms are GI issues and if they necessitate Prednisone. If your Fecal cal or SED or CRP are very elevated then I would take the Prednisone. If these numbers are not elevated, and you continue to get them monitored then I would think you have more room to wait and see.

I would ask your Dr. specifically why the Prednisone was suggested. It was a miracle drug for my son, put his inflammation levels in normal range in 6 days.

I am sorry for the bad experiences your loved one has had to endure from Prednisone. I can understand why you are concerned. Please let us know how you are getting along. (((Hugs))))
Click to expand...



thank you J'mom !!

yes... i will be seeing my pcp soon, and i will request the blood work. this is the info. that i need ( to know to ask ) ... :) !! truly ... thank you. :) ~
 
I agree on the prednisone, it's the worst drug that will save your life. I was on it for 3 years, got about 3/4 of the side effects, but it kept me from internally bleeding.

I missed the story about your partner, I think I was typing my reply at the time. Your aversion makes complete, avascular necrosis is quite a rare side effect.
 
so, hey funk,

i do not know ( nor think ) that i am bleeding internally. .... sad to say, these days, AVN is not so rare a side effect. :( ~

thanks, .... i will have more testing done b-4 i .... hmm.... anything !! rolling my eyes, b-mind ~
 
So, ... maybe i need to say that when i Flared i was " Going " very 10-20 mins. for 12 hrs. :eek2: that was 3/18 /14

now it is not even 3 mos. later, and i am going gently ... ( all things considered ).

so.... do you, or Anyone reading this, think that it is smart to jump on the BIG meds. ..... or , perhaps, learn about and have the tests that put together , may actually best diagnose occur ?

please remember that i am a newbie; still, this is what i am thinking is the best way for me to go now. .... ??? :) :face palm:
 
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Have the testing done to make sure you're still having active CD, if so, it sounds like your old medications aren't working anymore and you need to graduate up to more powerful medication. They're not as big a jump as you'd think. Once you get used to a biologic it's just an annoying needle you shove in yourself every once in a while, or in the case of Remicade, have a nurse shove in you.
 
^^^^ yeah that
Do you take any other drug Tylenol etc... The possible side effects of those are scary to read.
Risks like driving or riding in a car - again loss of limbs or death is possible.


My point being most docs weigh the risks of potential side effects vs the known benefits a drug will bring before prescribing a med.

5asa are generally not enough for crohn's as a monotherapy.
Pred can be an effective stop gap to get your inflammation under control until another stronger maintence med takes over.
My son also grew and gained weight once he started biologics.
Untreated or under treated crohn's can be deadly.
Inflammation can occur with very little symptoms .

Try talking to the Gi about your concerns and the possible risks vs benefits .
 
k, so i have to sleep soon !!

i am so thankful for the community of kindness.

last question of this night; . . . what are the dangers of a very inflamed bowel ??

i do know that i have this, and will be tested soon to see the current #'s.

peace and love to all . . . :heart:
 
One of the big dangers of a constantly inflamed rectum is rectal fistulas. I have three because they are struggling to get it under control there. That is with pred and double cimzia which is finally healing it. I am horrified to think how many I would have with no meds. Do you have the option of an IBD specialist GI? The difference in understanding between a regular GI and a specialist was amazing when I finally made the switch
 
I've been on Prednisone for bad flares and it's been a miracle drug for me. The last time the dosage was 40 mg and that seem to be the smallest amount I can take to go into remission. I don't have bad side effects with prednisone at that dose, other than weight gain which doesn't bother me.

Just because your partner had negative side effects with it, it doesn't mean you will. Different people react differently to drugs.

I have also been on Remicade infusions about 6 months and they are working well, too. I hate the expense of it though. My insurance covers all but still... It irks me how expensive it is.

Like you, I've had Crohns many years and was in remission for a long time (with Sulfasalazine, to which I developed an allergy after 25 years). I have also had gynecological issues and had a joint appt with my gastroenterologist and gynecologist, which helped.

It's very important to find a GI doctor you trust. If you like your PCP and gynecologist, ask them for recommendations, if you haven't already done that. My GI doctor specializes in women with IBD. Is there anyone in your area like that?
 
I'm sorry you're having a hard time. I really don't think that the physical pressure of your tests put you in a flare. They don't really know what causes them.
I've been on Prednisone for six months, and now on Remicade. I know the warnings for both. The alternative is much worse. A perforation is a life threatening emergency. Have you had an MRI? If you don't want to go on any drugs, please make your will. Sorry if that sounds harsh, but there you go.
 
thanks everyone ....

i think that my flare is calming down. bathroom 2-3 x's per day. snake formed stoool. no blood. less mucus.

no, i have not had a MRI, ... nor any tests other than colonoscopy approx. 3 yrs. ago.

Dx. = Crohn's and/or U.C.

will be taking all i have learned to my pcp soon, .... along with many questions.

thank each of you so much. i really want to avoid the heavy meds. as long as possible, and see if remission will be possible once again. much love to all. i will be around !! :)
 
Hello,
I was on prednisone for a large amount of my freshman year and it was horrible. (I know, I'm young) I experienced many of the side effects such as moon face, gaining weight, unnecessary permanent stretch marks, and a permanent decrease in my metabolism speed(not happy about that!). After my flare was done and I was off prednisone, I had another flare about 6 months later, and my doctor wanted to put me back on prednisone. I refused because I was not going through everything again. My doctor is actually a very holistic doctor, so she figured something out that worked great for me. She put me on a lot of supplements. I started taking adaptogens, iodine, a Chinese medicine called "enhance", florastor probiotic, and VSL#3 probiotic(which I was already taking). Surprisingly enough, this cleared up my flare, and this is what I do when a flare occurs. It's all natural and no prednisone!!!! Maybe ask your doctor if you could do something similar to this!
 
There is also complete bowel rest supervised. Why does everyone always forget about BOWEL REST?? Granted it is not too pleasant but can help a flare get under control.

Hope you are feeling much better now ;)
 
thanks again to Everyone for both sharing and caring !!

when i was at my worst, i did go on a clear liquid diet to give my bowel a rest...

i'll be seeing my GP. with a boat load of questions and requests.

when i saw my GI it was a first time visit. she sent away for my previous records and coloscopy photos. however, .... she has never examined me herself, and was ready to put me on all the heavy drugs w/o Any prior testing.

i am not comfortable with that. is that the way it usually happens in your experience ?

i will let you know how it goes as it goes. deeply thankful to all ~ :hug:
 
If your CD isn't responding to your current medication she has to, there is pretty much no alternative. Biologics are actually safer then we initially thought - some studies are starting to suggest they have no short term cancer risk increase.
 
I don't think it's that uncommon to get you on the drugs quickly at the first appointment if you already have a diagnosis and GI has confirmation of that. This disease can get serious quickly. Our GI would have sent us to the lab straight away and we would have had the results in a few minutes on most tests but not everyone has access for labs so quickly unfortunately.

Everything happened very quickly for my son too. I was putting him on Prednisone before I really knew what crohn's was and what our treatment alternatives were. I really had to trust the Dr that Prednisone was necessary. The trust and relationship with the GI came later.

There are no easy decisions with disease, we all just do the best we can. I hope you and your GI can find a treatment that you are both comfortable with. My only advice would be to keep communication open. I have noticed with GI's that if you start refusing treatment they will back off and move on. I think most of them get to a point were they aren't going to try and talk people into meds, they will let you figure it out on your own, many times to your own peril.
 
My 16 year old daughter was diagnosed in January of this year after losing so much weight and feeling like crap,went on high dose of pred,and boy did she get the moon face like you wouldn't believe. gained a lot of weight,after finally getting it under control and going on 6mp and Pentasa and changing diet she tapered off, but I can tell you she is refusing to ever go back on that drug again there is no way in hell I will ever talk her into taking it again. so far so good since being off Im hoping we have it under control. last colonoscopy last month showed healing.
 
am i correct that most people w/CD do have weight loss as a symptom?

twice now, i have been Dx'd with crohn's AND / OR UC.

never directly dx'd crohn's. never have lost any weight, nor any other symptoms ( of Crohn's ) except this recent flare.

i am going to search UC now. is there a difference re: symptoms, meds., treatments, etc?

... and for laughs and giggles.... i had an appt. w/my Dr. today a 3.... Finally.

was going to have a pre-planned, well thought out sit down !!! ...... somehow spontaneously in the deep dark of last night, as i got up to pee, i discovered ( with yowling pain ) that i could not walk...:tongue: :eek2: ~

with help from my walking stick; my spouse; and pure grit :)), ... i Peed!! yea me.

researched all morning ( whilst awaiting dr.s call ) and discovered that i (very well ) managed to provide myself with a groin strain/pull of my right abducter muscle ( thus, disabling self from walking and/or seeing doc. :confused2: :faint: )

so we talked, and i see her when she's back from vacation..... ( mercury will be direct by then, btw ).

sometimes, i must lighten up and laugh ~ !!! this is one of those times... :pillow fight: :rosette1: :roll eyes: ~
 

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