Crohn's Disease Forum » Support Forum » Vent Away » The Miserable Prednisonites Club


 
01-04-2016, 07:36 AM   #691
ron50
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I had ibs most of my life with several sessions of duodenal and peptic ulcers. My brother got the ulcerative colitis and proctitis. He has had it for forty years and has had an amazingly good life just on sulfasalazine and prednisone suppositories. On flares he has a week of prednisone and is fine. Unfortunately he suffered a prolapse last year and had to have a sigmoid colon reconstruction. He still has problems with pain and irregular bowel habits. Mind you he is 71 now and his doc does not understand how he survived this long.
I missed out on the uc and Crohn's and went straight to stage 3 c colon cancer into six lymph nodes . Lost some colon and had chemotherapy. I have survived the cancer for 17 years but the chemo is still dogging me. I was diagnosed with minimal change disease of the kidneys. Unfortunately I had a rookie nephrologist. The treatment for MCD is prednisone. He had me on 75mg daily for nearly 18 months and another six months of taper. They weren't sure my adrenals were going to kick back in. I looked like humpty dumpty and to this day I don't know how I did not kill myself or someone else. I t is the most miserable drug I have ever been on and that includes chemo. It put me into type two diabetes and I lost 7cm in height and a lot of calcium . I have been taking calcium supplements for years but I still officially osteo penia. He got my kidney dx wrong it was not MCD and three kidney biopsies have not put a name to it. I am into nephrotic syndrome and untreated I lose up to seven grams of protein a day thru my urine. I have been on cyclosporine morning and night for over 18 months and it is keeping me alive. I have been diagnosed with auto immune kidney disease ,auto immune neuropathy, auto immune endocrine problems with low testosterone and under active thyroid. auto immune psoriatic arthritis and auto immune hepatitis. I was in a lot of pain so some well meaning doc ramped me up to 80 mg of oxycodone as Targin. I finished up with hypo algesia after two years. The oxy was causing more pain than it stopped. I am currently on a 32 week taper to get off it (I thought pred was bad) . All the time I have been on oxy I have had to take two dulcolax and two coloxyl with each dose to alleviate opiate induced constipation. It is not supposed to be a problem with targin but it is big time. I was told I could also take up to five sachets of movicol a day. What a wonderful lifestyle I lead. With hindsight I may not have had any treatment for the cancer. I have refused to take prednisone again except for a short time to see if I had auto immune hep. My liver functions dropped into the black immediately. My neph said he may use more if the hep flares. I just looked at him . No way I don't like pred and it don't like me. Ron.
11-17-2016, 09:31 AM   #692
The Real MC
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I landed in the hospital a few weeks ago with a partial intestinal blockage.

They gave me the NG tube, painkillers, IV nutrients, pentasa... and NO steroids. Discharged on Thursday after three day stay, back to work the following Monday.

Contrast that with a similar episode two years ago - they gave 125mg of steroids 4x a day while in the hospital, no taper off period after discharge, my body was way out of whack and had to be on disability for 5 weeks.
11-30-2016, 10:41 AM   #693
Alliesavage
 
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I had a job I really loved 😢 I got put on prednisone and flipped out on a customer. Of course I got fired. I'm normally a very nice person but prednisone makes me a psycho!!!!
11-30-2016, 10:53 AM   #694
ronroush7
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I had a job I really loved 😢 I got put on prednisone and flipped out on a customer. Of course I got fired. I'm normally a very nice person but prednisone makes me a psycho!!!!
I am so sorry.

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Diagnosed in 1990. On Humira, Imuran, Gabapentin, Colestipol, Synthroid, Lialda. Resection in April of 2010. Allergic to Remicade, Penicillin, Flagyl, Doxycycline. Thyroid issues and psoriasis and neuropathy and mild cerebral palsy. Mild arthritis in my lower back.
12-08-2017, 05:10 AM   #695
Rainbowchaser
 
Join Date: Oct 2017
Location: Alaska
Hi Everyone,

I am 22 days into a 2.5 month Prednisone taper (still on 45mg. Crohnís symptoms (inability to eat, drink, blood and mucus in stool, nausea, vomiting )practically gone within 3 days of prednisone.

I am waiting on biologics but anyone have a new or returning flare a few weeks into treatment? My stress is reduced significantly since my ex left and I hoped I would be alright until the biologics.

I am not discouraged but wondering how many of you got a lot better on prednisone and regress again quickly?
12-08-2017, 06:16 AM   #696
Rainbowchaser
 
Join Date: Oct 2017
Location: Alaska
Didnít specify - the current flare is arthritis in the lower back and hips. Started yesterday and back to needing a walk aid already by this morning. Awake most of the night. Moving helps and heat pad. Anyone else have a regression after prednisone taper?
12-08-2017, 06:55 AM   #697
ron50
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My arthritis returned with a major flare the moment I finished my pred taper. The only drug that actually helped with the arthritis was methotrexate but it had too many side effects and in the end I could not even use it as an injection. Cyclosporine helps my nephrotic syndrome but not my arthritis. It is seronegative polyarthritis believed to be psoriatic arthritis. I cant take any painkillers with my kidneys so I just have to put up with the pain. The pain is the least of my problems now as the arthritis is attacking my lungs and eyes . I have had a couple of serious run ins with pulmonary oedema and my eyes are always red when I wake up. They really seem to know stuff all about auto-immune diseases. They cant help you with them, they cant help you with cancer, they cant help you with neuropathy and they can't help with chronic pain. It seems the only people doctors can help are those with nothing wrong. Ron.
12-08-2017, 07:43 AM   #698
Rainbowchaser
 
Join Date: Oct 2017
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Thanks for the reply Ron. I tolerate the pain too and it is the least issue for me. I get so irritable when I am in severe pain and just isolate myself until it scales back. My Ďgoal Ď is to just be okay. Just well enough to enjoy being around people instead of hurting and trying to hide it. My face always gives it away though and it bothers me to see the way people that care hurt for me. It brings me down when it affects others and I rather nobody know how bad it is. I am accepting my health conditions finally and having my family back in my life makes it so much more bearable. I know itís my own feelings of denial of being so ill. I have a great therapist and he helps me stay focused on the positives and not consume myself with protecting everyone elseís feelings about something I work so hard to manage on my own. I am not going to let my fear of meds prevent me from getting well ever again.

Sorry to be such a negative nelly this morning. So far I have no evidence of organ damage just osteoporosis starting. I am really self-disciplined and have a good day routine including a Pilates reformer for gentle joint and muscle movement, heat pads, rest as needed etc.

I am sorry you are having trouble with your lungs and eyes. The prednisone helped my eyes right away and I had my eyes tested a few days ago and the pressure was 17 on a Ďsafe pressure scale Ď ranging from 4-21 according to the ophthalmologist . I am seeing the eye surgeon in January for further testing but the doctor says there is no immediate risk just time to start monitoring for progression.

I hope you improve soon Ron. Eyes and lungs are tough to deal with. My cousin with autoimmune heart disease had a pacemaker two years ago and canít taper below 50 mg prednisone for past 2.5 years. He contracted a cold or flu five weeks ago and canít shake it. I feel for you guys that have such organ complications 😔

Thanks everyone for being on this forum. Having people that truly understand really helps feeling alone in this. This is my first Christmas Ďalone Ď this year - but I donít feel lonely anymore.

Reach out Ron over the holidays if you want to chat. Even just non sickness talk if itís too taxing. I wish you well during the holidays 🎄🎄🎄🎄🎄🎄🎄
12-09-2017, 07:29 AM   #699
ron50
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I feel for you rainbowchaser. All last summer I wished it was winter but as soon as the cold came I wished it was summer again. I live on the east coast of Australia just North of Brisbane. It never really gets cold here . I hate to think what I would be like in your winters. One of the legacies from my cancer chemo is severe neuropathy from the waist down. I would probably get frostbite for sure where you live. I am alone this Christmas and for the past ten years I have lived alone . I'm 67 now and it gets harder each year to manage all the day to day chores plus I still work four days a week. Funny I can still work but I can't do the things I love like fishing. Life is funny, Ron.(but not fun.)
12-09-2017, 08:49 AM   #700
Rainbowchaser
 
Join Date: Oct 2017
Location: Alaska
Glad you donít have these Canadian winters to deal with too! I have hope things will get better for me too. I am grateful for people that care for me helping me be strong instead of being treated like a burden. I know I have the strength to deal with whatever is ahead 😊 Take care Ron.
03-02-2018, 06:20 PM   #701
The Real MC
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Last weekend I had a 2 day stay in the hospital for bacterial infection left behind by stomach flu that was triggering bad cramps. Other than antibiotics I was on low dosage of prednisone, after discharge I was directed to continue 20mg through Wednesday. No gradual tapering off. After lunch on Thursday I could feel the withdrawal kicking in and left work early before I got too lethargic. I have been in full dopey mode since then. I hate these things.

On the PLUS side, the cramps did NOT come back!
04-16-2018, 10:34 PM   #702
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Been on Prednisone for 6 months on and off, mostly on since every time I get on the road to remission I am knocked off into relapse. The latest was rejecting Remicade with seizures of my neck and back, followed be out of control diarrhea. Prednisone brought be back with anti-diarrhea meds I got stable. BUT NOW, my vision is failing and going blurry. The ophthalmologist said today, it will likely go away after I tapper off the steroid. That and the mood swings, I can't wait much longer, hopefully my doc will read my test results and get me on another treatment soon before I lose my mind and do something I might regret.
04-17-2018, 12:42 AM   #703
cmack
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I'm sorry to hear that you are struggling, that sounds like a lot of stress. Is there anything you enjoy, that you can do to keep your mind off of it? Maybe even solitaire or a jigsaw puzzle would be better than nothing. I find that I sometimes dwell on things if I have too much time to think and I believe the stress exacerbates my bad mood and gut issues too. If it helps at all, most people that I have talked to said that the worst of the prednisone side effects go away when you quit taking it. It's still not cool in the meantime though. I'm here for you if you need to talk, I will be happy to do so. Best wishes to you, thike.
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