I'm back...and worse than ever

Hi all

Well I have been really well with my Uc the past six months whilst on 50mg aza and 100mg allopurinol. I've had no side effects and have been enjoying life. That all changed when at my last Gastro appointment my doc told me to reduce the aza to 25mg because my levels were getting high and even though it was having no effect in my blood, as a precaution wanted to reduce to even out levels.

That was a month ago and ten days ago started getting flare up symptoms. He told me to alternate 25mg to 50mg of aza each day to get me back to normal and start rectal meds. Well long story short nothing has helped and my flare is getting crazy. I started oral steroids six days ago at 40mg and they have not worked yet. Last time I was in pred they were effective but only after ten days or so.

Problem is my condition is getting worse everyday and I don't think I can wait any more. I am going 8-9 times a day and it is mainly lots of blood and not much stool. Funny thing is my stool is quite formed but it's the blood that is worrying.

My last blood test on Tuesday showed mild inflammation of CRP 3 and my iron was ok too. But the way thins have deteriorated since then, I reckon it's worse. My calprotectin is 1200. My symptoms do not reflect my results at all. This is the worst flare I've had since my diagnosis in 2000. I have a small daughter and luckily my mum is on school vacation so can help out with her but will have to go back home soon.

I am becoming very stressed and upset about this. He has now increased my aza back to 50mg a day too! I have emailed my gastroenterologist about this. I fear he will admit me to hospital and I need to be home with my daughter.

I take VSL3 probiotic and have a mainly dairy free diet.

I have been told to come in to hospital now for IV steroids. I'm scared. I've never had them before and heard they are double strength.

Oh no! I hope you get better ASAP!

Stay strong. It's hard to do but the mental anxiety and stress makes things much worse. Gut rest and IV steroids helped get me over the hump a few weeks ago. You're going to be okay and don't be scared of IV steroids. They'll be monitoring your levels and vitals and you're in a safe place! Act now and don't let your flare get any worse. You will gain peace of mind if you get to the hospital and seek treatment. There's lots of alternative treatments and diet modifications that work for some folks. These are all worth a try by in my opinion during a serious flare you need to do whatever it takes to get inflammation down. I just said a prayer for you! Stay strong and do anything to keep your mind positive whatever that may be. God Bless

Musicianfisherman said...
Stay strong. It's hard to do but the mental anxiety and stress makes things much worse. Gut rest and IV steroids helped get me over the hump a few weeks ago. You're going to be okay and don't be scared of IV steroids. They'll be monitoring your levels and vitals and you're in a safe place! Act now and don't let your flare get any worse. You will gain peace of mind if you get to the hospital and seek treatment. There's lots of alternative treatments and diet modifications that work for some folks. These are all worth a try by in my opinion during a serious flare you need to do whatever it takes to get inflammation down. I just said a prayer for you! Stay strong and do anything to keep your mind positive whatever that may be. God Bless

That's so nice and thank you for your post and thank u for your prayers. Means a lot. My mum has been up in the nights with me praying and chanting and that has helped my mind rest.

IV steroids are an option for me and I can always go to hospital and go get them now that my doc has informed them. However I am feeling a little better after this morning. Been getting plenty of rest in bed whilst mum looks after my daughter. Her laughter and happiness echoes in the house and keeps me positive. But I want the IV steroids to be my last resort treatment. I have not had a BM since 8am which is good for me right now. However that sometimes means it's all building up inside! Mum has also made some homemade natural yogurt for me today and I shall be eating a lot of that with stewed apple sauce as that has helped me in the past as well as soft fish and eggs.

Can I ask did u get any long term side effects from the IV steroids? Like joint pain etc? I would expect the moon face and puffiness which is ok however I do not want to risk long term damage. Also how long do they hook you up for? A day or two? I am completely in the dark about IV steroids.

Happychick said...
It just shows we definitely need our own judgement on our health and should not just rely on what the doc says- even though they are the professionals they are only guessing in relation to each patient too albeit a more educated guess.

I shall be taking more care in my treatment next time.

While this is generally wise, I do not fully agree with you statement in this case.

UC is bad. Life sucks. No liver is worse. No life, just death. You statement "not having any effect in my blood" is not a medical statement and I don't know what you mean. But you liver enzymes were elevation and the correct thing to do was to try to titrate the dose to find a therapeutic level that did not indicate liver side effects.

If your doc had ignored the liver enzyme spike, and you got some liver damage, you would be here singing a very different story and calling him incompetent. So apparently he/she was dammed if they did and dammed if they didn't.

Since "taking more care" apparently means ignoring you doctor, and dismissing blood test results, the good news is that you can save a lot of money by just not having blood tests or going to see the doctor.

Sorry you are flaring, sorry the titration ran into problems, sorry you are anxious about the IV steroids. I hope it resolves soon. But I also wish discussions here were more logical.

DBwithUC said...

Happychick said...
It just shows we definitely need our own judgement on our health and should not just rely on what the doc says- even though they are the professionals they are only guessing in relation to each patient too albeit a more educated guess.

I shall be taking more care in my treatment next time.

While this is generally wise, I do not fully agree with you statement in this case.

UC is bad. Life sucks. No liver is worse. No life, just death. You statement "not having any effect in my blood" is not a medical statement and I don't know what you mean. But you liver enzymes were elevation and the correct thing to do was to try to titrate the dose to find a therapeutic level that did not indicate liver side effects.


If your doc had ignored the liver enzyme spike, and you got some liver damage, you would be here singing a very different story and calling him incompetent. So apparently he/she was dammed if they did and dammed if they didn't.

Since "taking more care" apparently means ignoring you doctor, and dismissing blood test results, the good news is that you can save a lot of money by just not having blood tests or going to see the doctor.

Sorry you are flaring, sorry the titration ran into problems, sorry you are anxious about the IV steroids. I hope it resolves soon. But I also wish discussions here were more logical.

Okay then....

This is exactly the type of catty comment that has prevented me from coming on tho forum too much. All I said was we need to take more care in our health and not rely too much on he docs word- is that not a logical thing to say? When did I ever say I would ignore his advice?! Question it yes but certainly not ignore. He just should have tapered me off the dose slower than just halving it as that was too drastic a drop.

isleman said...
DBwithUC, HappyChick said "should not just rely on what the doc says". This is an accurate statement, she did not talk of disregarding what the doc says and followed up with "taking more care in my treatment". What's wrong with that? Doctors are not omnipotent. Lived experience in UC is part the treatment to say the very least.

Exactly thank you for reading my comments correctly.

People, people, let's play nicely and stay on topic of the OPs question. If this thread turns into infighting ior bickering then it will be locked.

Glad your doing a little better this morning. I hope that continues for you. Pred for me the second time I took it never got me quite where I wanted to be. I think each time we take it, it takes longer and longer for it to work. For me rectal meds really seem to be key any time I start to feel a little off though luckily that has been quite a while.

This argument needs to stop or this will be locked.

I can see both sides. I think 50mg with 100mg of allo is high for long-term use. The therapeutic benefit can cause neutropenia because it can immune suppress you too much. I personally think your dr did the right thing by lowering the dose. Who is to say things wouldn't have happened the same way or worse otherwise? I actually ended up with sepsis from being on too many immune suppressants and that's the last thing you want to deal with, believe me. Neutropenia is no fun either but at least I was able to control that with outpatient care. Allopurinol + imuran/6mp is not all that commonly used & can have dire consequences. it needs close monitoring and it shouldn't be used together forever. I was able to maintain after allo+6mp with just 25mg of 6mp for well over a year. Eventually I flared up when I got a flu and it was very difficult to control. Still battling it now.

This argument needs to stop or this will be locked.

I just don't like seeing somebody personally attacked because they didn't couch their post in touchy-feely language. Not everyone is good at that sort of thing; I'm certainly not. It doesn't mean they should be attacked for it.