6MP and flare! Hooray! - major rant -

I'm sorry for being ironic and sarcastic and this is a major rant, BUT .... I am royally p.o.'ed that I have a flare although I am on 6MP. Yeah, what was I expecting? I had this wishful thinking that once I go on 6MP (8 months ago and starting with 75mg, I am on 50 mg for at least 5 months and even 75 mg hasn't shown therapeutic level), I will never flare again. What was I thinking? Now I am back to bleeding, urgency, very narrow stools and BM that only consists of blood or white stuff or mucus, coupled with pain that it is so strong it moves all the way through my legs. So I talked to my GI today and she wants me on Prednisone asap, 40 mg and report back in one week to see if I can already taper down or not. I didn't even argue with her that Prednisone did nothing for me when I took it for 4 months. Also I am supposed to take 75mg of 6MP every other day (I am taking 50mg).

Why am I always so shattered to the point that I am totally angry, pissed, hopeless when a flare strikes?? I don't have that disease since yesterday. I know that it comes and goes and the going takes painfully long (at least with my flares). What was I thinking?? I went through so much trouble with 6MP and all the side effects it had for me. Still I cling onto it and it is not helping? What the heck?

I started out two weeks ago with a bit increased BMs and lots of white mucus. My BMs were incased in that mucus. One week ago, I started bleeding and I immediately started cortenema nightly. I manage to retain the enemas all night and still, it is not getting better. It is getting worse.

I tried Rowasa last night and I don't know what I was thinking. Everytime I try it, stuff gets worse. It burns and stings immediately and therefore I can't hold it. I am trying mesalamine enemas for years in hopes they will work, but it immediately burns and stings and I cannot hold it. So using mesalamine enemas is out of the question for me now for good. They just don't work for me.

I am soooo angry ... I know, being angry won't help and will make it worse, but what can I do ...? I am an anxious, panicky, fearful human being and I try so hard to calm down and tell myself that it is nothing new and nothing I haven't been through before, but still ... I panic, I have hissy fits, I am aggressive. I am scared of Remicade and Humira (has to do with the fact that I have a needle phobia) and besides, since my husband got laid off and we have this health insurance with a huge deductible with his new job, I wouldnt be able to afford it anyway.

Thanks for letting me rant. I feel a bit better now. But I really don't want to take the Pred only to find it won't work again and only gives me the nasty and dreaded side effects.

How many of you flare on 6MP and are the flares in a way milder and/or shorter on 6MP?

 

     Oh..another thing...I cannot use Rowasa either..burns me too and the last two times I tried using Canasa suppositories...wow...burned like the dickens, so I stopped using them too.  I have two internal hemorrhoids and thought maybe the Canasa was irritating them.

Thanks Elaine and Christine.

I had the prometheus test while I was on 75 mg and it showed that I am a "low responder". I had unbearable side effects under 75mg (one was strong headaches that never went away, lasted for weeks and nausea, nausea, nausea) and was put on 50 mg. Although I was a low responder on 75 mg, me and my doctor thought that 50mg must be doing something, maybe at least keep the flares shorter and milder. So ... yes, I had the test and while I was brandnew to 6MP, I didn't want to give up on it for the get-go without seeing how it will pan out for me in the long run.

I will take 75 mg every other day (started yesterday) in addition to cortenema nightly before I pop Prednisone. I also take 6 Asacol a day. I already have one week of nightly cortenema behind me, but I can't tell whether it is getting better. Right now I think it is getting worse (more bleeding and "empty" BMs that just consist of blood or strange crumbs of white or yellow or mixed with blood). Gosh, I have worked so hard the last 6 months to become calmer, more relaxed and more positive to improve my well-being (esp my mental well-being, I suffer from anxiety, but choose to be off meds two years ago) in hopes of giving that disease less to work with (less stressing out, thus maybe being less prone to flares), but when it hits me, it is like the first time: Panic, not knowing what to do, expecting the worst and totally forgetting the times out of flares. What strikes me as odd is the time of the flare (there is a hot air balloon festival in a neighbor city every year on the third weekend of September and guess what? I never make it to that festival, I always have a flare!) and that when I look at my exercise/workout log, that flares come always in times when I exercise daily and do lots of varieties (I do spinning for cardio, mat pilates, all kinds of yoga - except hot yoga). I am not wearing myself out with exercise - I love doing it, it makes me feel good. But now I feel like ______ (fill in the blanks).  Also, I stop leaving the house when I have flares. Right now the flare is not too bad (only the first three hours after waking up, then I have a long break and it starts again early evening), but I refuse to leave the house because of fears of accidents. I know it's wrong. I know all that. It just gets me all the time.

Christine, I have followed your thing with your doctor and how he "dumped" you. You seem to be in a stupid situation with UC all the time. I wish so badly you'd feel better soon.

Thanks for listening.

 SO sorry for your relapse! I too, had been on maintenance dose of 50 of 6MP(dr wanted 75, but i was SO healthy I dropped last year). I had ejoyed a perfect remission for over two and 1/2 years. Then, just last month, BAM! I started bleeding again and was in a full fledged flare up. I am super scared, and really disappointed. I went to 100 mgs of 6MP, and took 40 of pred for a week. Admittedly, I didn't feel better, but after ten days or so I couldn't take the prednisone. I began to dose down, telling my doctor that I know that I cannot tolerate the oral prednisone again(I also have several  long lasting problems from it, bad bone, eyes, ...). I feel completely sick and miserable on 40; I had forgotten how bad this medication is.  Anyway, I am doen to 25 on the pred, and still 100 of 6MP> I am a little better I suppose, but still bleeding and feeling generally crummy. Sadly, I guess that this is the INCURABLE, CHRONIC part of UC.....it is such a major mind challenge to live like this. I get to work every day, but am not really living. For me, I am getting off oral pred. and exploring options.... Remicaide.... surgery, ouch! I just turned 50, am newly remarried, and want my life back. What keeps me going is how terrific I felt for the past few years. HANG in there, please, we can beat this darn UC!!!!

Ooops, sorry for the mix-up Elaine and Christine!

Thank you for the nice replies. It makes me feel better. No, I won't throw in the towel, although I really want to. I've been through this before. I am really hoping I have a few bad days and will be more positive soon.

It is not that I go to that Balloon Festival LOL. It is just every year they advertise it on TV and I always say to my husband: "Hey look, I will have a flare, that festival is coming!". Sadly, that is true. And I haven't seen a Thanksgiving without a major flare in years (since I am in the US, that is). I don't get colds in winter like everybody else - I always get them in April or May. It is just weird, but that is a different story.

Thanks.

Scarlet -I am weird in those ways also.  I am 69 and have more "rare" medical things happen to me.  Doctor is always saying "that only happens in rare cases!  I have often been that rare case.  I had a rare fungus on my knee years ago.  Two different anxiety medications made me hyper.

Now I am trying to convince every doctor that when they prescribe me medication - treat me as a child.  I do better on children's doses.  They often go by my weight and I am obese and short. 

Good luck to us all!

ElaineNY

Glad you are doing better.  I still don't quite understand why any doctors - in my experience - don't "get it" when we tell them the medication is the problem.  I am very sensitive to a lot of medications.  I toook 6 MP - not much of a problem until I increased to 75 MG.  I had similar symptoms as you only not as severe.  I knew it was the medication and dropped down to 50 mg. and felt better immediately.

Also, took me a long time to convince my gastro doctor that I cannot tolerate ANYTHING with mesalamine in it.  Wish I could.  Two doctors have told me that the low doseage would not do me any good - both 6 MP and prednisone - but I proved them wrong.  Who knows our bodies better than ourselves??  Gotta stay really proactive and remember that before they are doctors they are also human - we all make mistakes!

ElaineNY

I sure feel your pain as they say.  The staff at my gastro doctor is worth nothing.  Now not so sure about the doctor either LOL!

Anyway, nobody is perfect but when I am sick I at least like a straight foreward answer from whomever is in charge - doctor/NP is the best.  I had to stop one medication because it made me so sick and could not get a doctor or anyone on the phone.  I just did it.  Told them later.  It was not an emergency but I could not get out of bed - like the flu!  (I think it was the LIalda)

By the way, OT - how is your lung cancer.  My husband is in remission now!

ElaineNY

kops2da said...

Scarlet -I am weird in those ways also.  I am 69 and have more "rare" medical things happen to me.  Doctor is always saying "that only happens in rare cases!  I have often been that rare case.  I had a rare fungus on my knee years ago.  Two different anxiety medications made me hyper.

Now I am trying to convince every doctor that when they prescribe me medication - treat me as a child.  I do better on children's doses.  They often go by my weight and I am obese and short. 

Good luck to us all!

ElaineNY

 WOW same here, seems I am odd also, asper my reactions to meds, or so sya the drs.