Does anyone listen? - So Annoyed

So....

I posted a few days ago "Tapering Asacol - foolish or what"

Anyway, I know i'm flaring, and it's faster than ever before, so like we all do, it would be nice to try and 'nip' it in the bud no?

I called my consultant (secretary) to be told "Yes, yes, i'll get your notes and have him call you.  I chased it up two days later "He's go a lot to get through, I promise we'll call when he gets to your notes"  Still Nothing!

so. I visit my GP to be told "Stay with it fo another week and see how you go, we may run some blood tests then"

What stopped me from slapping one across her face I don't know.

Do they not understand that I know what's going on, and that something needs doing about it?

Reluctant as I am, and probably foolish, I've began popping the Pred! (I know)

I wanted to give my body a quick boost, so I decided to start on 25mg, Friday. So after two days, NO improvement (I know, patience). I've upped it today to 35mg, what can I say, desperate times, desperate minds.

So to recap, I'm taking 3Asacol x 3 Daily and Pred 35mg Daily.  Will I start to see an improvement?

Any advice, or support is much appreciated, I know i've prob been silly doing this, but no-one is listenting!!  Arghhhhhhhhhhhhhhhh!

The UK NHS - I did have confidence in them, suddenly it's beginning to diminish!

Desperate.

 

Keep a detailed log of the prednisone for reference. My husband did the prednisone route off and on and unfortunately is in the category of steroid dependent. He was on 12 asacol per day and had tapered off the prednisone and flared terribly causing him to land in the hospital for 5 1/2 days. It was then that he was started on the imuran along with 40 mg of prednisone with a very slow tapering and 12 asacol. He required pain meds also and is still on them. He is still at 15 mg of prednisone as we are taking a 2 week trip and will taper down by 2 1/2 mg when we return. He is now on 150 mg of imuran and cortifoam enemas to start tomorrow.

It was very discouraging to say the least for quite awhile. Hang in there. You need to find the correct meds to help you and it certainly is a trial and error basis with this blasted disease.

Hopefully your doctor will call and get you on a better regimine to settle things down for you.

Request rectal 5ASA meds....I'd strongly suggest Salofalk, Pentasa or Asacol retention enemas or retention foams if they're available where you are. Call the pharmacy and find out what it can get for you .... then call the doctor back and insist on a prescription.

I don't think you needed to go back on the pred just yet.....

You really have to realise that your impatience is setting you up for a bit of a disappointment to have a flare gone.

What do you think about rectal meds? Do you want to try them or is that not for you?.... even if they can work for you?....

quincy

Prednisone is not a drug you should use to self-medicate, deciding when to "pop it" and what your dose should be. (Really, the same goes for any prescription med.) Your gastro doctor should make that decision. If you aren't happy with the response time and care you're getting from your current doc, find another one.

You won't have only one, two or even ten flares throughout your life. To use pred as your (and your doctor's) only "weapon" of choice is puzzling..and quite honestly, scary....especially since medications and perspectives have improved regarding the treatment and maintenance of both.

Have you been tested for any underlying infections or other possible constants that might be hindering your improvement?

I would really like to know what meds you are on for asthma.

You also really need to get your GP to refer you to a GI...at least to widen your medication options.

Are you seeing a respirologist or allergist for your asthma?

Why was it a futile effort in discussing rectal meds with your GP..regarding the response?

You're paying too high price ... you really do need a break, but one meaning to help with long term improvement, not short term with long term frustration and possible life-time side effects from pred.

quincy

Quincy and Old Hat,

From reading Schmoner's post it is clear to me that he/she is residing in the UK which is probably the worst thing for anyone with UC, the reasons being are many including, National Health Service (NHS) waiting lists: When I was first diagnosed with heart problems in Northern Ireland I had to wait 6 months to see a specialist and that was put through as an urgent appointment we get referred to GI's/consultants by GP's who do not prescribe enemas the reason why is beyond me, but I have seen enough GP's in my time and been told no, the nearest I came to Rectal meds were Predfoam which is not sufficient if the inflamation is anywhere further round the colon than the left side. The waiting list to see a GI was around 3 months, and over the counter medications in the UK stop at Paracetamol you need a prescription to even blow your nose ha ha, of course with the GP's here having a time limit of 5 minutes per patient, in my opinion it takes at least a minute from being called into the room and getting the welcome out of the way so you are down to 4 minutes to tell him or her your current issue(s) the GP to decide what to do with you and before you know it next it's time up, pressure on GP's is immense and therefore the quality of healthcare although cheaper than what the US and other countries recieve is far lower.

Schmoner, when I was first diagnosed I too was told it was all in my head, I was given peppermint pills and Antidepressants, referred to a psychiatrist and kicked out of the door hee hee, so I fully understand your frustration and remember even though it seems we are lecturing you we are totally on your side and I assure you we only have your best interests in our words and thoughts.

Take care.

Dave

Craig,

Don't forget what I said about A+E it seemed to me to be the easiest way to get the help I needed when things were as bad as they clearly are for you, they can't kick you out and they aren't clock watching they will either admit you and get you sorted or give you a letter for your GP instructing a change in meds, I went 3 times and was admitted twice it was difficult for me to go at first because I didn't want to waste resources, but you know what swayed it for me was that I thought of how many people ended up there who had bumped their heads during a night on the town and as my disease isn't self inflicted I knew I had every right togo and get the help I needed.

I see from your signature block that you were waiting to start on Azathioprine have you started yet? I started on it must be nearly 2 years now I can't begin to tell you how much it improved my life, it took something like 8 months to see changes but I went from not leaving the house to returning ack to full time work and getting dragged around the shops by the wife ha ha, it worked for me, of course we are all different but, I have my fingers crossed that you get the same results.

Ha ha your doctor must have been praying she could make up that extra minute on her next patient ha ha ha, it's amazing how many people in other countries think we have a good healthcare system if only they knew hee hee, I don't know if I said in my last reply but I am now living/working in Germany, and waiting lists just don't exist not as we know them anyway

Vent all you want mate until you get into remission you have got plenty to vent about but promise me one thing, do not forget to take your calcium supplements, I say that because my joints are in a bad state, I wasn't given calcium supplements for months after being started on Pred, then I didn't really consider them to be so important well I should change my nickname to fool in capital letters.

Take care mate and we are all here for you.

Dave