Does anyone listen? - So Annoyed

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Schmoner
Regular Member


Date Joined Apr 2007
Total Posts : 26
   Posted 10/7/2007 1:39 AM (GMT -7)   
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.
 
Diagnosed with UC March 2007
 
Currently Taking:
 
Asacol 2 Tabs (400) x 3 Daily
Prednisolone 40mg 35mg 30mg 25mg 20mg 15mg 10mg 5mg 2.5mg Daily
Iron Supplement 200mg 6 Daily
Omeprazole 20mg (Acid)
Awaiting Start of Azathioprine Trial
Various Asthma Medications (List too long)
Calcium supplements 400mg twice daily
Multivitamins + Minerals once daily


Knitty_Cat
Regular Member


Date Joined Jun 2006
Total Posts : 105
   Posted 10/7/2007 5:21 AM (GMT -7)   
I'd say that maybe you've put the Pred up a bit quickly. You had just finished a taper hadn't you? Many people find the taper a bit troublesome when they get under 10mg - that is when you are most likely to relapse. So, with hindsight, you maybe could have gone back a step or two to 5mg or something to see if that helped. However, I'm not a Dr so that's not a call that I should make. You really need to discuss this with your Dr (when she/he finally gets around to calling you!).

However, now that you've done two days of 25mg Pred and a day of 35mg pred, I should think that you're going to have to stay with that dose and do the whole taper thing again, much like you did to get from 40mg down to nothing. If anyone else is around on the boards I'd love some second and third opinions on that. I think you've done too much to be able to reduce your dose too fast or stop it. If your GI doesn't call you really soon then see your GP and tell them what Pred you've just taken and get them to plan what you should do. Please don't change your doseage around and certainly don't stop using it suddenly. You'll also probably have to re-start your calcium supplements.

I'd also recommend that you discuss 5ASA rectal meds with your Dr so that you have those as a tool to nip flares in the bud rather than use Pred. Another possibility is to also discuss Imuran as a longer term way of stopping using Pred.

When I used to start on 40mg of Pred to deal with a flare it would take about 3-4 days before things improved. Good luck and I hope your Dr calls you first thing Monday morning! If not, I'd recommend trying to see any Dr/GP just to run your pred taking details past them and get some advice.
UC since 2001, diagnosed May 2005
Salofalk tablets (Asacol) 4 x 2 tablets daily for maintenance, Salofalk enemas for flares
Oat bran 60grams daily, Metamuscil and multivitamins


Another UC wife
Veteran Member


Date Joined Jun 2007
Total Posts : 2111
   Posted 10/7/2007 5:41 AM (GMT -7)   
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.

60 yr old male~Colitis 1st diagnosed Jan '05-cleared up within a few wks. Flared again in May '06 ... left sided UC now, fully involved and trying to get in remission. Acute inflammation-pancolitis-tenesmus rectal pain-granulation is showing some healing started. Osteopena of spine from prednisone DX 8/07  July 07 good days & bad days 75mg Imuran 40  mg prednisone (tapering 8/07) 12 Asacol, Lidocaine Hydrochloride Jelly 2%,multi vitamin, iron 3X day, DanActive, chewable calcium, Prilosec 20mg, enalapril 10mg, glipizide 5 mg, zocor 20 mg, baby aspirin, (Fentanyl pain patch 50mg 72 hrs  Morphine Sulf 15 mg twice daily)Colocourt enemas at night. Fosamax and mthly B12 shots folic acid 1mg


BigLucy
Regular Member


Date Joined Mar 2007
Total Posts : 413
   Posted 10/7/2007 9:50 AM (GMT -7)   
How about rectal meds? Anytime I get an increase in sx's, I up the Rowasa, really helps. I noticed in your signature that you don't take rectal meds or did you leave that out?--I'm always surprised by this, they have really helped me.
Dx Ulcerative Colitis 1999; IBS; CP: Asacol x3 x3/day, Rowasa, Proctofoam, Prilosec, Bentyl, Prozac, Endocet (as needed), multi vit, probiotic, fish oil caps x2/day, calcium 1200 mg./day, Prednisone (off/on, unfortunately).


quincy
Elite Member


Date Joined May 2003
Total Posts : 29840
   Posted 10/7/2007 9:55 AM (GMT -7)   
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
*Heather*Status:mini flare June 23* 6asacol daily+ Salofalk (tapered every 3rd night)
~diagnosed January 1989 UC (proctosigmoiditis)
~5ASA: Asacol + Salofalk enemas (increase for flares tapered to maintenance)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals 
~Probiotic 2 (Natural Factors Protec) + 1 (Primadophilus Reuteri) at bedtime
~Natural Factors Multi Digestive Enzymes with supper
~Ranitidine,Pariet (reflux) Effexor XR 75mg;  Pulmicort/Airomir (asthma)
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!


Dansky
Veteran Member


Date Joined Mar 2005
Total Posts : 2844
   Posted 10/7/2007 10:25 AM (GMT -7)   
Schmoner,

I was in a similar position on a number of occasions when I lived in Northern Ireland, anyway you and I both know how pathetic the NHS is, when things got too bad for me and I got no joy with the GI I went to A + E and was admitted, put straight on Pred via IV and soon on a stable path. After going to A+E the first time, it became obvious to me that it's the only way in the UK. I now live in Germany where healthcare is totally different, you get problems you see the doc/consultant straight away, no stupid waiting lists etc etc.

In relation to commencing the pred, inform your consultant ASAP so that he/she can amend your treatment plan and make sure you amend your steroid treatment card, if you don't have one get to a chemist and get one, most importantly is that you taper correctly, ensure you won't run out that could cause dreadful consequences.

Good luck and keep us informed.

Dave
Dansky Co-moderator UC forum
 TAKE FLYING LESSONS ON A MOUNTAIN BIKE TODAY!
Bisoprolol Fumarate
Lisinopril
Sulfasalazine
Azathioprine
Prednisolone
Pariet
Citalopram Hydrobromide
 http://www.healingwell.com/donate/

 

 


princesa
Veteran Member


Date Joined Aug 2007
Total Posts : 2198
   Posted 10/7/2007 11:57 AM (GMT -7)   
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.
Diagnosed with ulcerative colitis spring 1999
C-scope confirmed UC diagnosis 9/18/2007
No explanation for right side pain and thickening of bowel wall
 
Maintenance dose sulfasalazine, back on a pred taper for first flare in years
Probiotics, l-glutamine and fish oil caps. George's aloe vera juice and Mucosaheal.
 
 


Schmoner
Regular Member


Date Joined Apr 2007
Total Posts : 26
   Posted 10/7/2007 10:46 PM (GMT -7)   
Thanks everyone.
 
I know i've prob gone too fst with the pred, but after hvaing suffered for over 12 months, and constantly being told "it's IBS " or it's in my mind, I feel I have to do things for myself. The pred foam was doing nothing.
 
Stil have'nt heard off my consultant!
 
I've discussed rectal meds with my GP, but it was a waste of time, I'm sure she's scared of UC and doesn't know what to do.
"Sit tight and wait for a week, then we MIGHT run some blood tests" - Whopeee doo! (I don't need a blood test love, i've been here before! )
 
In terms of managing my Pred, i'm feeling quite capable, after having to use them much earlier in life to cope with my Chronic Asthma, i'm fully aware of tapering and management etc.
i'm just dissappointed that it's coming back, after being in remission and of the prd or over 3 months.
 
i'm on my second day now at 35mg and I really hope i'll be seeing some improvement - please god!
 
Sorry to whinge everyone, and those of you who've 'told me off' I understand, i'm just darned that this isn't goin to get the better of me gain!
 
desperate
Diagnosed with UC March 2007 - Proctitis
 
Currently Taking:
 
Asacol 3 Tabs (400) x 3 Daily
Prednisolone 40mg 35mg 30mg 25mg 20mg 15mg 10mg 5mg 2.5mg Daily  35mg Daily
Iron Supplement 200mg 1 Daily
Omeprazole 20mg (Acid)
Awaiting Start of Azathioprine Trial
Various Asthma Medications (List too long)
Calcium supplements 400mg twice daily
Multivitamins + Minerals once daily


quincy
Elite Member


Date Joined May 2003
Total Posts : 29840
   Posted 10/8/2007 1:11 AM (GMT -7)   
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


*Heather*Status:mini flare June 23* 6asacol daily+ Salofalk (tapered every 3rd night)
~diagnosed January 1989 UC (proctosigmoiditis)
~5ASA: Asacol + Salofalk enemas (increase for flares tapered to maintenance)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals 
~Probiotic 2 (Natural Factors Protec) + 1 (Primadophilus Reuteri) at bedtime
~Natural Factors Multi Digestive Enzymes with supper
~Ranitidine,Pariet (reflux) Effexor XR 75mg;  Pulmicort/Airomir (asthma)
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!


Old Hat
Veteran Member


Date Joined Feb 2007
Total Posts : 5135
   Posted 10/8/2007 8:16 AM (GMT -7)   
I agree with what Knitty_Cat, Princesa, & Quincy are advising you: Pred is not a drug to be self-medicating yourself with! To nip flares in the bud you should have an understanding with a gastroenterologist familiar with UC, who will keep you supplied with the appropriate meds, including enemas, so that you learn to use them as a 1st defense. Steroids affect every organ in the body, including the heart, & must be viewed with due respect + a certain trepidation because they can cause additional damage to the body, especially if used long-term.
Of course you are justifiably angry that the doctor does not return your phone calls within a day-- what local recourse do you have to register a complaint in UK? In the U.S. we usually have to change doctors if they don't respond to our needs. / Old Hat (nearly 30 yrs with left-sided UC; currently on 5 Colazal daily for July flare in descending colon; should be back in remission again soon)

Dansky
Veteran Member


Date Joined Mar 2005
Total Posts : 2844
   Posted 10/8/2007 11:06 AM (GMT -7)   
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
Dansky Co-moderator UC forum
 TAKE FLYING LESSONS ON A MOUNTAIN BIKE TODAY!
Bisoprolol Fumarate
Lisinopril
Sulfasalazine
Azathioprine
Prednisolone
Pariet
Citalopram Hydrobromide
 http://www.healingwell.com/donate/

 

 


Schmoner
Regular Member


Date Joined Apr 2007
Total Posts : 26
   Posted 10/8/2007 11:12 PM (GMT -7)   
Dansky

thank-You

I was tring to get across my frustration with both GP and consultant. (The consultant who still has not called be back after 8 days) . I can switch Consultants, but have to go back on the waiting list (se we'r talking at least 2 months)

this is what is getting to me most - i know what is going wrong with me, i'm finally diagnosed with UC and the relief that it's not in my head, was so enlightening. The amount of natural remedies/diet changes/anti spasmodics I have tried is ridiculous!

My GP for some reason seems to be scared of my condition, and offers to referr me or to take blood - whopee doo! (To add, my last appointment lasted 6 minutes, and the panic in her face afer over -running )

Having increased Asacol, Predfoam, both to abosultely no avail, I had no choice but to self-prescribe, otherwise, I can see myself where I was six months ago, weighing 3 stone less, anaemic, and on the verge of a breakdown .
This is why I just couldn't let it get that far again, and with my symptoms going back rapidly, I couldn't even contemplate going back to how I was.

I do value everyone's advice, and it's comforting to know how much ppl care - thank you. I'm just trying to vent my frustration, and kinda justify why i'm doing what i'm doing.

thanks again everyone

Craig
Diagnosed with UC March 2007 - Proctitis
 
Currently Taking:
 
Asacol 3 Tabs (400) x 3 Daily
Prednisolone 40mg 35mg 30mg 25mg 20mg 15mg 10mg 5mg 2.5mg Daily  35mg Daily
Iron Supplement 200mg 1 Daily
Omeprazole 20mg (Acid)
Awaiting Start of Azathioprine Trial
Various Asthma Medications (List too long)
Calcium supplements 400mg twice daily
Multivitamins + Minerals once daily


Dansky
Veteran Member


Date Joined Mar 2005
Total Posts : 2844
   Posted 10/9/2007 1:29 AM (GMT -7)   
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
Dansky Co-moderator UC forum
 TAKE FLYING LESSONS ON A MOUNTAIN BIKE TODAY!
Bisoprolol Fumarate
Lisinopril
Sulfasalazine
Azathioprine
Prednisolone
Pariet
Citalopram Hydrobromide
 http://www.healingwell.com/donate/

 

 

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