trying to get off prednisone

It is my husband who has UC and he has been on prednisone for almost 12 years and is trying to get off of them for good.  He has become very anxious and always thinks he is going to be hospitalized and die.  I need help trying to keep him positive and motivated.  It seems to be mentally taking a serious toll on him.  He is using probiotics to try and get off the prednisone, and is done to 5 on prednisone, but is thinking of going back up due to not feeling well for the past week or two.  ANy suggestions?  mrb

He is on asacol and 6mp.  His dr has been happy he has been trying the probiotics.  He has been on the 5 for a few weeks which is usually beyond the short issues for him due to the tappering.  Unsure how to help him.

He is possibly going into a flare, he isn't clear yet. He doesn't feel well and always concludes that he is going to the hospital. I guess my question is are there others who feel this mental anxiety and how do you address it. If it is or isn't a flare, he can't really control without the dr., but the amount of stress he goes through trying to fight a flare is incredible. How can I help him?

If he's been on 6mp for over three months (it can take a while to kick in) and is also taking Asacol, he should be able to taper off the pred-- particularly if he's already down to 5 mg. Immunosuppresant drugs like 6mp are considered to be "steroid sparing" drugs, allowing the patient to get off steroids, which have serious side effects with long-term use.

From what you've said, it sounds like he's been on pred so long, it's become a sort of security blanket for him. The thought of stopping it entirely makes him anxious, which in turn, exacerbates his symptoms. I would hope his GI has explained the dangers of being on pred for so long, so that he would WANT to get off it. Although he may be resistant to the idea, counseling could be a big help in changing his attitude to a more positive and proactive one. There's nothing worse than feeling like the situation is hopeless and out of your control. His fear and negativity can only make things worse. A good counselor could also teach him some relaxation and biofeedback techniques.

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Diagnosed with ulcerative colitis spring 1999

C-scope confirmed UC diagnosis 9/18/2007

No explanation for right side pain and thickening of bowel wall

 

Maintenance dose sulfasalazine, back on a pred taper for first flare in years

Probiotics, l-glutamine and fish oil caps. George's aloe vera juice and Mucosaheal.

MRB - Your post is very interesting.  I see myself heading towards the same situation as your husband.  I have been on pred for 4 years now, and am steroid dependent.  I am down to 7.5mg a day now but I cant get off it.  I end up in a serious flare whenever I try. So, for me, its not so much that I am anxious about getting off it, but the fact that I cannot "survive" without it.

I dont know whats worse.  Repeated serious flares that land me in hospital or the terrible side effects of long-term steroid use. They seem to be both as bad as each other.

Is your husband reliant on the pred due to his UC always flaring without it or is it mainly psycholigical?

I suggest you get him to use the steroid enemas.  I am using predfoam every night to try and get my pred dose down.  But, its so hard.

Also, if your husband does attempt to taper his pred. I would definately go down no quicker than 1mg a MONTH.   After 12 years, it will be extremely difficult to taper off it.  Once I got to 15mg I tapered no faster than 1mg a month and even that was horrendous.

I wish you both the best of luck

 

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Back on Pred - 8mg - Steroid Dependent :-(

Azathioprine 150mg

Actonel 35mg

Predfoam Enema

VSL #3 with Activia Yoghurt
EPA Fish Oils

Various Homeopathic meds

Asacol x 9

Remicade every 8 weeks  (Stopped working)

Aloe Vera Lily of the Desert Juice  Gave me the worst D !

Primadophilus Reuteri Probiotic

Prograf Tacrolimus 4mg

 

OMG... 12 years. i am having so many issues with only 3 weeks of 50mg and another 3 to go before tapering.
im gonna shut up about my sap problems now cuz they seem so trivial in the light of those of you having to be on pred for so so long.. i only hope that i dont ever have to stay on steroids anywhere close to that long.
good luck on getting off of them..

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31 year old female - diagnosed UC in 2000

started as proctitis and now is pancolitis..

this current year long flare is now severe on left side only.

just got out of hospital with 200mg of hydrocortisone injections a day

**3 weeks out of hospital and have no colitis symptoms... normal bm's only 1x a day + no blood

 

50mg prednisone 1x  with lunch or breakfast

50mg imuran 1x  8pm stopped it to try and have a baby

2x 500mg mesalazine 2x day + night

2.5mg endone (oxycontin) every 6-8 hours for pain

25mg tomazepam for sleeping

VSL#3 didnt work

Aloe Elite didnt work

Budesonide 9mg day didnt work

ive lost 40+lbs and my legs look like sticks ... ewww