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Aint got a clue what im doing with my uc

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Posted 11/13/2018 1:49 AM (GMT 0)
Hello people im brand new to this and i suppose like everyone new i have a billion questions i need help with ....so i will be gentle
Im 41 and was diagnosed with uc about 4 years ago , i was very niave and didnt really understand the severity of my illness and plodded on as if there was nothing to worry about .... I was a gym fanatic weighing 98 kg and was using steroids ( test, tren, mastaron, sustanol, deca, naps, anavar ) basically alot of different courses back to back on and of for 3 years and never had a flare up when i was resting for a couple of months at a time between courses , i always felt in great shape with a tiny bit of blood here and there but nothing to get worried about ..
Any way at around about june i thought i would give my body a rest from the steroid course i was on ( ttm ) and clean up for a while, i was taking my after care ( pct ) and noticed that things was changing significantly down below.
I started going to the toilet a lot and was eating so much that i should have been seriously obese but i was losing weight rapidly ... 98 kg to 89 kg in 3 weeks !!!!!!
I had no medication left from all those years ago when i was diagnosed ,so was in a bit of a pickle , i realised that the steroids had done a wonderful job of keeping my illness under control and now my body was comiing back into normal mode ...my body had nothing left in the fuel tank to fight and was become very ill.
I went to the hospital and was immediately admitted and put on hydrocortisol injections and all sorts of tablets i had never heard of sitting in a hospital bed wondering what the hell is this all about ,... these things dont happen to me !! After about 5 days of being stabbed with what seemed like a million needles and having handful of tablets daily, but the thing was becoming apparent that nothing was working and i was a very sick puppy 😒😒 i was genuinely scared, infact i was petrified ...
They put me in for an endoscopy and i knew by there glances between themselves that things was bad and after 6 biopsys it was confirmed that i had severe acute uc and after talking with the gastro specialist i was informed that it was so bad that i will most probably end up on the wrong side of a knife within 48 hrs !!!
Now im as tough as you can get especially psychologically but being told that was undescribable... I cant explain the dark hole i was in , it was not good i just could not get my nut around all this ...
I was told they was going to try 1 last attempt to get this under control with a iv medication called Infliximab and see if it works .....
And the next day i felt different, things had changed significantly down there and by the second day everything had improved massively and cutting the story a bit short i was released from hospital 4 days later from that first Iv of infliximab ive just had my 2 week 1 and am back in for my 4 week 1 soon , so thank you infliximab you gave me a sqeeze in life chances that im deeply grateful for ...
Im now having to take the following tablets daily and i hate how i feel when taking them.....

Infliximab iv at 4 week interval now
80mg prednisolone but have tapered down to 40mg already in the last 3 weeks
200mg azathioprine split in to 100mg twice a day
5mg folic acid
4000mg salfofalk mesalazine
Adcal d3

Is it fine to taper down that quick ?? Ive done it of my own accord and not the doctors , but i felt dead on them and ive read so many bad things about prednisolone that i need to get that stuff as far away from my body asap but just dont want to cause bad withdrawals or anything else , i feel fine now and am back in the gym and weighing 94kg is it safe to taper that quick ???
Thought i would share my first experience with you lot sorry if i went on but am not so clued up as you all seem to be and was hoping for a bit of imput and love and guidance 😊😊😊

Post Edited (R85ERT) : 11/15/2018 5:47:10 AM (GMT-7)

Posted 11/13/2018 4:09 AM (GMT 0)
Look, you basically ignored your disease for four years. The steroids probably kept some of it in check, but clearly things were festering and doing damage. So let's have a serious conversation about where your life goes from here:

UNLESS YOU WANT TO LOSE YOUR COLON, DO NOT STOP TAKING YOUR MEDICATION OR TAPERING TO A LOWER DOSE OF MEDICATION WITHOUT MEDICAL ADVICE.

You may still lose your colon eventually, but the reality is that this is a lifelong disease and you will almost certainly need to be on a maintenance dose of medication even if you go into remission and feel all dandy. This is literally one of the first things my GI explained to me when talking about long-term prognosis and treatment. This is what you will find across this board. Some people are really really lucky when they hit remission and ditch the meds and can manage to stay in remission for years. Most of us are not.

So, the meds:

1. The pred is not typically a long-term thing. It's sort of a "rescue" if you will -- you are in bad shape and the point of the prednisone is to suppress the inflammation (and your symptoms) while the long-term drugs like azathioprine and infliximab kick in. Your doctor should give you a taper schedule. If not, then ask for one. Tapering too quick can cause problems. The Adcal d3 is a just a calcium/d3 supplement. The reason they give you this is because of the prednisone and its impact on your calcium levels and bone density (calcium is better absorbed with d3). You will be able to ditch this one once you are off the prednisone.

2. Don't taper your azathioprine without permission. I take 100mg -- I originally took 50, which was fine, then I had to go up to 100 because my levels weren't high enough and I was having minor issues after 6 weeks. This dosage makes me a bit nauseous, so the doc told me to take it at night. I take it right before bed and I am fine. You may want to try splitting it up if it is bothering you. It is really important to take the azathioprine with your infliximab (I am also on Inflectra, an infliximab biosimiliar). Treatment with both meds is more effective than treatment with one, and the azathioprine will help prevent you from developing antibodies to the infliximab. This is a good thing -- antibodies means the med won't work anymore and you have to move on to the next drug.

3. Once you've done your loading doses of infliximab and your first regular dose, talk to your doctor about whether the salofalk is still necessary.

You've been in the hospital, and you've been on the brink of surgery, so you need to take care of yourself. Yeah, getting yourself into a stable place can suck balls -- it's a lot of trial and error, lots of diff meds (especially at first), and stupid prednisone. You don't feel well, but that is not just the meds, that is also your disease because it is not in check. Stick with the plan. If you have a problem with what you've been prescribed, talk to your permanent GI about your options. Read up online. Don't just make decisions -- make INFORMED decisions. And remember that you are in this for the long haul. Hopefully you'll have thousands of good days! But right now, you also have to learn to deal with the bad days so you can get to those good days.
Posted 11/13/2018 8:40 AM (GMT 0)
Thank you for your reply as i need to be told how it is straight sometimes because i can be a bit ignorant to real life , i appreciate your advice.
Posted 11/13/2018 9:06 AM (GMT 0)
If theres any more opinions or questions from people please ask or tell as i said in my first post i aint got a clue what im doing i thought by tapering down on the pred asap would be a good thing as that medication is the devils drug and dont want the side effects anywhere near me.... Can i not drop say 10mg every 5 days and keep to the 200mg of azathioprine as directed ??? I feel fine now and am having no symptoms at all even having properly normal bms that i have not had since forever 😊😊 am i being stupid or am i really lucky and am in the clear so quick ??
Posted 11/13/2018 9:15 AM (GMT 0)
Also forgot to ask you lot after all these meds etc i feel slightly asthmatic and my breathing always feels slightly tighter and my voice goes more huskier is that normal with the meds ?? And my hands and body are very shakey ??
Posted 11/13/2018 9:40 AM (GMT 0)

R85ERT said...
Also forgot to ask you lot after all these meds etc i feel slightly asthmatic and my breathing always feels slightly tighter and my voice goes more huskier is that normal with the meds ?? And my hands and body are very shakey ??

~~~~~~ Highly likely, all due to prednisone. Do your taper as your DOCTOR tells you. I doubt anyone dislikes prednisone more than I; but do NOT taper on your own. Too quick and you could get a really bad 'payback'. You sound a lot like I did years ago....and probably still do...FINALLY went to the doctor, think you'll take a few pills or shots and be well. I'm a bit of a shy person and HATE talking with anyone about this 'crappy' illness. LOL I never researched U.C., just did what my doctor said without question. Fortunately...I have a super good gastro doctor. This forum has been most informative, supportive, and reassuring for me. Almost all seem to just be good people, willing to share their ordeal, success, and information with others in the same 'boat'. Pay close attention to what many say...best source of information is from someone who has dealt with the problem for many years!...in MY humble opinion. I wish you the best of luck, health, and healing; but listen to your doctor and stick with it. Thank you for sharing.
Posted 11/13/2018 1:08 PM (GMT 0)
Thank you for your imput i wii continue as the doc said , i was told to originally taper down 10mg every 7 days and thought i would liven things up and taper every 5 or 4 days its my second day on 40mg now , do i just carry on with the 40 for another 5 days and taper down or go back up to 50 for 3 more days as ive messed the tapering up now ??? And restart the 40mg dose for 7 days ??
Posted 11/14/2018 10:25 AM (GMT 0)
Hiya

Firstly, I would take great notice of your doctor if I was you, after all they see thousands of cases and know best. However, seeing as you’ve already started to taper I think you had better not go backwards and go back to a higher dosage. Perhaps taper 5 days at a time? If you aren’t clear speak to a medical professional again. Keep it consistent.
Posted 11/14/2018 1:02 PM (GMT 0)
Thank you , im at at 40mg now ,on my 4th day and still feel fine ive got another infliximab infusion on the 28th and will seek advice when im there , as ive said i dont know what im doing this is my first experience of a flare up and i hate the meds im on they make me feel horrendous when they kick in and as ive seen on the forum im not the only 1 on here who hates prednisolone the side effects are really bad !!! So im trying too escape the clutches of this evil asap...
Posted 11/14/2018 4:36 PM (GMT 0)
Yes I understand how you must feel, like I say keep the tapering consistent. Plenty of positive thinking to, I’m a great believer in that.
Posted 11/14/2018 5:22 PM (GMT 0)
There's no 100% cure for UC. Only remission. My gastro thinks the mind is a powerful medication. Positive actions/thinking can be a positive
Posted 11/14/2018 5:51 PM (GMT 0)
I think the most important thing is to find great doctors and trust them to help you. It sounds like you've already made strides in improving, but it takes time. Prednisone is a band-aid, while you say the remicade is the magic bullet, it could all be from the prednisone, and you won't know until you taper down. Pointless to think about that now though, best to take it one day at a time, stay on your meds, and do your best to stay positive. While I say to follow your doctor's advice, it is also important to advocate for yourself. Look for alternatives if you so desire, keep a food journal if you like... it's a lot of trial and error, but ultimately, even if you were to face surgery, you can get through it. It's great if you can avoid it, but life does go on. Did you ever have stool tests?
Posted 11/14/2018 6:26 PM (GMT 0)
You need the prednisone for quick relief, while you wait for the other meds to work. Do not taper the pred fast, that's a rather horrible idea that will result in a return to your flare.
Posted 11/14/2018 8:07 PM (GMT 0)
Thank you for your replys , i did have stool samples done and they came back with no forms of infections at all and my recent blood tests are good so i think i got a sqeeze with the infliximab and it worked a treat , i am still very nervous as any little twinge i get in the colon reminds me of where i just was !!! and i have a little panic that its started again 😢... Its all new to me so have no idea how im supposed to feel or not ?

Post Edited (R85ERT) : 11/14/2018 1:49:47 PM (GMT-7)

Posted 11/14/2018 9:26 PM (GMT 0)
Well unfortunately you need to just go with it at the moment and try not to panic about what might be. Try relaxation techniques and read positive material like ‘The Secret by Rhonda Byrne’ this book can really help in stressful times. Also In a previous post you mentioned breathlessness which was perhaps due to the Pred. I did some reading of a published medical paper and their finding was that because prednisone passes through the blood brain barrier it could quite possibly stimulate the breathing centre which causes the breathlessness, if this is the case at least it is only temporary.
Posted 11/15/2018 5:50 PM (GMT 0)
80 mg pred is an insanely high dose! I would lose my mind on that much pred. Was that given in an IV in the hospital or something? The few times I was on IV pred for just a couple days, I felt like i was losing it. I was so emotional, I couldn't take it. I would call your doctor and tell them how you feel and ask them about tapering. Good luck!
Posted 11/15/2018 6:11 PM (GMT 0)
There's great anxiety and worry when flaring for the majority of us. We worry that any single bad sign is the equivalent of suddenly free-falling. Unfortunately, healing is not a linear path with steady, daily improvement from flaring to remission. It is a very bumpy road, more akin to a rollercoaster ride with lots of sharp ups and downs. Expect good days followed by bad days. Perfectly normal for us.
Posted 11/15/2018 10:25 PM (GMT 0)

Sara14 said...
80 mg pred is an insanely high dose! I would lose my mind on that much pred. Was that given in an IV in the hospital or something? The few times I was on IV pred for just a couple days, I felt like i was losing it. I was so emotional, I couldn't take it. I would call your doctor and tell them how you feel and ask them about tapering. Good luck!

I am on pred tablets and your right its too much for me i understood that it was straight away thats why i have tapered down to 40mg already , and luckily without any rebounds yet 😎 lets see how the next couple of weeks goes 🤞
Posted 11/15/2018 10:27 PM (GMT 0)
Makes sense to me. Hope you continue to improve.
Posted 11/16/2018 5:12 PM (GMT 0)
Has anyone been on Azathioprine ?? If so did it make you very dopey and give you a hoarse voice as it seems to knock me side ways .....not so much on the first 100mg but when i take the second lot later it floors me....?
Posted 11/16/2018 9:08 PM (GMT 0)
I'm on 6mp, a sister med to azathioprine, and have not had those symptoms.
Posted 12/21/2018 5:39 PM (GMT 0)
What is 6mp ?? And does it make you nauseas at all ???
Posted 12/21/2018 5:59 PM (GMT 0)
6mp, azathioprine, and imuran all have about 20% odds of nausea. Azathioprine/imuran actually is metabolized into 6mp within your body. Taking 6mp saves a step, and results in you taking smaller pills each day with a lower dosage.

If you had a reaction to azathioprine/imuran, then you likely will to 6mp as well. You could try it, if desired, Many who have were nauseous with 6mp as well.

If you had a reaction to azathioprine then you can ask about methotrexate, which is often prescribed when someone has a bad reaction to aza.
Posted 12/21/2018 6:25 PM (GMT 0)
I was on 6mp for many years. Never was nauseous
Posted 12/21/2018 10:06 PM (GMT 0)
The nausea and vomiting. Has become a joke i think the pred was masking it as within a day or 2 of stopping the pred i was vomiting. Hard core , the thought of taking aza again brings on pychological nausea , the gi told me to stop the aza for a wk and try again but i cant c how this will change a thing ?? ( a wash out period ) .....
They want me to add another tablet , allopurinol in aswell , the side effects are crazy !!!!
And if that dont work then ive got to go on , mercaptopurine ??? The side effects again are mental !!!
I really dont want to take them at all ..... What do i do ??
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