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breaking the pred cycle......

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Posted 5/22/2013 2:15 PM (GMT 0)
Hi everyone,

I think i have posted about being on pred before sorry to bore you guys just really struggling with what to do.

Im on a 6 week cycle again tapering off 5mg a week and again i feel brilliant bowels wise having one or two really well formed stools can go when i choose no urgency at all and no blood.

The side effects are annoying me like finding it hard to sleep, having to take a pee every half an hour but ill take that over fever, running for a number 2 every five minutes and all the blood and mucus any day.

But i know this is not a long term solution as what happens is, i come off them im fine for about a month and as soon as they are out my system back to square one.

Is there anyone who has found them selves in this situation in the past ? could anyone please give me any advice on what to do?

Im taking salfolak (mesalimine) and azathprine also but these do not work simply on their own.

My GI says alot of his patients see positive results on just a low dose of cortisteroid permenantly anyone got any views on this?

Thanks again

Posted 5/22/2013 2:49 PM (GMT 0)
I would for sure not want to be on a low dose steriod permanently. Maybe you should try switching to Lialda for your maintenance drug? Probably just going to have to try different maintenance drugs until you find what works for you. But you will find one!
Posted 5/22/2013 3:06 PM (GMT 0)
thanks for the reply. i have tried several mesalamines asacol, pentasa now salfolak none of them seem to make a difference :-(
Posted 5/22/2013 3:10 PM (GMT 0)
if you've tried diet mods to no avail, and low dose pred keeps you happy, why not - i think there are worse options out there - see how it goes -
Posted 5/22/2013 3:12 PM (GMT 0)
soystud - thanks for the advice, i do belief there are a safer alternative to pred which is also a cortisteroid i might consider that option
Posted 5/22/2013 3:16 PM (GMT 0)
You might want to check out a book (search on Amazon or request inter-library loan) called "The safe uses of cortisone" by Dr. William Jefferies- he is a believer in safe low dose steroid use for many conditions and he argues that in physiologic doses split into several doses a day, toxicity is negligible or nil. I would have opted for that over surgery if it had worked- for me 5 mg or even sometimes just 2.5 mg a day (which i split into 2-4 sub doses per day) keot me symptom free for very long stretches vs nil pred, but still I would end up in a full flare at least once every 6-12 months and even though i could usually knock them out with higher doses and be back at a low dose within weeks, that yo yo finally got me to chuck my lead pipe colon. That said, I know orthodox opinion including on this forum is that even low dose is evil- still, worth checking out Jefferies book if you find yourself ncreasingly steroid dependent. Certainly low dose pred dependency is infinitely better than high dose dependency.
Posted 5/22/2013 3:17 PM (GMT 0)
Is Remicade or Humira a choice for you? I think I would choose either of those over being steroid dependent and the long term risks of glaucoma, osteoporosis and such that pred can bring even at low dosages.

I've been on Pred since Jan 2013, my GI doesn't want me off it until the inflammation is under control. We're giving 6mp more time (also started in Jan) at a higher dosage level since april. If nothing improves by early June then it is Remi for me. I am currently doing all of the remi-required tests (tb, hep-b, and such), just in case I need to go that route.
Posted 5/22/2013 3:28 PM (GMT 0)
Ipoop - i have asked my GI about these in the UK i believe its called Infliximab and his reply was only crohns patients can be prescribed with this
Posted 5/22/2013 3:51 PM (GMT 0)
I think you should also get your blood sugar tested perhaps with a full blood panel test... diabetes or symtoms around that are also a side effect of prednisone. Maybe not an issue for but will give you some peace of mind.

-----

On 40mg Prednisone daily
colocort nightly.
Posted 5/22/2013 3:54 PM (GMT 0)
How about that Uceris? Available in the UK yet? If your inflammation is high up - what about entocort? And is your salofalk an enema or oral med?
Posted 5/22/2013 4:02 PM (GMT 0)
I was gonna mention Uceris also. Another thing, If you are on an 8 week taper, that means your only at 40 mg for one week? You might need to be at a high dose longer then taper. I am usually at 40 for 3 weeks then taper down and usually am fine (until i stop taking my maintenance meds and flare again)
Posted 5/22/2013 4:55 PM (GMT 0)
I gotta say that I don't think your doctor is doing you justice. He seems to be stuck in a feedback loop of always doing the same thing even when it's obvious that the plan needs to be tweaked. Do salfolak (mesalimine) and azathprine do anything for you at all? I mean can you really tell that they do something? It sounds to me like they are doing zero and it is really the pred that is what helps you. If the AZA is actually doing nothing then why take it at all? You mentioned that you do the salfolak when flaring. You should also be doing it when not flaring to maintain a remission. Prednisone weakens your immune system, stopping your colon from being attacked and inflamed, allowing your colon time to heal. For it to really work properly you need to be on it for a long enough time at a high enough dose to COMPLETELY heal your colon. What is happening is that you are tapering off before your colon is completely healed. Once you taper down or get off your immune system will again resume attacking and inflaming your colon all over again. This will never change. You need to take pred at a high enough dose for a long enough time that your colon gets COMPLETELY healed and you need to coninue doing the salfolak forever to maintain remission. Don't ever stop, no matter how long you have felt good even if it is decades. Once you stop your remission strategy the UC is pretty much guaranteed to come back, probably worse than before. You aren't taking prednisone long enough or at a high enough dose and you are not maintaining remission with the salfolak if you are only taking it during flares.
Posted 5/23/2013 8:38 AM (GMT 0)
Firstly thanks alot for all your responses it is greatly appreciated i do find it funny how i have to come to a forum to find out better information than i can get from my GI (which must say something about my GI :-/)

hurtbyuc - thanks for the advice got the test luckily i havent got diabetes which is a relief.

kazbern, machina12 - i have heard of uceris but only online, i dont know whether its available in the UK yet is it a cortisteroid? there is a cortisteroid that i have been informed of by my GI called clipper which is ment to be less harmful than pred maybe this is the same sort of thing?

garylouisville - i can honestly say i dont think the azathprine does anything for me at all, but i dont dare stop taking it because a couple of years ago when i had a real bad flare taking this alone eventually put me into remission but now i cant see how its helping me if i keep going into flares all the time soon as i come off pred. I am now taking the salfolak (mesalimine) as my maintenance drug every day so hopefully it will start having some effect.  I would like to say i have learnt more from your post than i have all the years i have been seeing my GI which is very worrying, i had no idea that the pred worked in this way, i do understand that i need to be taking something forever to keep the inflamation down i think my problem is like you say tapering off the pred to quick and not letting my colon fully heal. i have another visit with my GI in July i think i am going to cut and paste this and show him see if he can explain why he hasnt been giving me the correct info or see if he can just explain what his plan has been.

In your oppinion how long should i be on the pred for at the moment ive been given a 6 week course 40mg  first week 35mg second week 30mg third week and so on, although i can tell you i feel great at the minute in the way of bowels.

Thanks again

Posted 5/23/2013 10:11 AM (GMT 0)
I am most definitely in the same boat! I have been on Asacol, Asacol HD, Pentasa, Lialda, and Imuran. Imuran allowed me to taper off Pred, but only lasted about 3months before I slowly declined to a full flare. My GI actually stated that Imuran seemed to have done more harm than good after my colonoscopy a few weeks ago. I go for follow up next week to determine the next step.

Since the first part of May, I have been back on 40 mgs of Pred, vitamin D, Calcium, and probiotics. I have felt better than ever! I'm down to about 4hours sleep nightly, but that doesn't really bother me. I'm just productive.

I would not mind staying on Pred. I feel better, it works, AND it's inexpensive. I'm sort of tired of spending a fortune to try drugs that don't work.
Posted 5/23/2013 11:43 AM (GMT 0)
46&crashing, its the same with me im getting about 6 hours a night, but its not bothering me im waking up fine full of energy all day, imuran i take it this is azathprine? i am seriously considering coming off it. the only thing i have noticed whilst taking azathaprine (imuran) when i do go into a flare its never as bad as before i was taking it i.e the fever and feeling generally ill, so maybe could be doing something i dont know.
Posted 5/23/2013 1:09 PM (GMT 0)
derby and 46, you guys must understand that frequent use of prednisone has really serious long-term implications for your health. Bone loss, joint damage, diabetes....you really don't want to mess with this drug.

derby - Uceris is from the same maker as entocort. It is a corticosteroid but is meant to have very little systemic absorption, so yes, ultimately less harmful. But still a steroid.

Depending on where your inflammation is, you can choose a med to treat it. Are you using rectal meds?
Posted 5/23/2013 2:04 PM (GMT 0)
No rectal meds, i tried colifoam (cortisteroid) when i was in flare before starting to take pred all it did was make me bleed more. yes uceris sounds like clipper which is a month course i am going to try this if i go into a flare again once i get off the pred.
Posted 5/23/2013 2:28 PM (GMT 0)
If you are tolerating salofalk you should try mesalamine enemas instead of the corticosteroid enemas.
Posted 5/23/2013 2:33 PM (GMT 0)
to be honest dont think they are strong enough when im in a flare and i refuse to take them as a maintenace every single day, orally i can live with
Posted 5/23/2013 2:59 PM (GMT 0)
"refusing" to take a safe medication that will keep your disease in remission, and then choosing to use prednisone to manage flares = a recipe for disaster, ie, possible future colectomy followed by osteoporosis.
Posted 5/23/2013 3:04 PM (GMT 0)
slow down i appreciate advice but who are you to judge what i decide and dont decide what to do. just because something works for you might not work for us all, i know rectal meds do me more harm than good, this disease effects everyone differently, you have your oppinion but you are no qualified GI so helpful advice only please.
Posted 5/23/2013 3:06 PM (GMT 0)
derby - mesalamine enemas work for most people, not just me (if you are tolerant of 5-ASA, which you appear to be, since you take the oral med without difficulty).

Repeated use of steroids to treat your illness will lead to disaster. That is a known fact. Your disease may become refractory to steroids (will not respond at all) and at that point you are going to be looking at surgery or biologics.

Your feeling that rectal meds do more harm than good is odd - is that based on your experience from the corticosteroid enemas?
Posted 5/23/2013 3:12 PM (GMT 0)
this is based on every enema i have used including, pentase supositries they do not just agree and make more blood, mucus and urgency.

I am not on steroids constantly only when in flare, i think a low dose for maintenance sounds like a good idea aslong as its other than pred.
Posted 5/23/2013 3:12 PM (GMT 0)
this is based on every enema these have been steroid and meslamine i have used including, pentase supositries they do not just agree and make more blood, mucus and urgency.

I am not on steroids constantly only when in flare, i think a low dose for maintenance sounds like a good idea aslong as its other than pred.
Posted 5/23/2013 3:15 PM (GMT 0)
derby county. I am in the same boat as you. I am now trying to drop by 1mg a time for the first time AFTER getting down to 10 mg quickly. The theory is the slow release from pred will give the other drugs more time to work and I may not bounce back into a flare because of dropping down too quickly. I must say I am using salafalk foam enemas twice a day rather then the 2 shots at once. 1 when i get home from work and 1 just before i fall asleep. This way it is easier to retain and 2 gives more coverage. Another thing I find useful is to use metamucil. This helps to firm up the stools and take 2 lots of 6 capsules a day (start with 6 a day and build up). This has helped with urgency also. I buy it from Amazon. make sure if you try it you dont buy the sugar free one as I have read that one has preservatives that can irritate our condition.

Lastly research LDN. This is a drug which is licensed in the UK but not for colitis. As this drug is licensed for higher doses which is used to treat alcoholics/drug users once they have weaned off but not had trials for colitis most consultants and gp's may not prescribe it. More information available at http://ulcerativecolitis.org.uk/colitisforum/viewtopic.php?f=18&t=6469&p=37361&hilit=ldn#p37361

Like the original poster above (sickofuc) i am following his route of getting it privately. I want to break the cycle of pred even though my symptoms are good at the moment. I have put my story in brief in the above thread so don't want to repeat it here. I will be starting tonight and hoping for the best. My post on LDN is also on these forums which i did earlier today. fingers crossed.
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