Need some opinions on latest doctors visit!

[vickyhunter]

Hi everyone,

I'm having a flare up at the moment (has been going on for about 8 months) and I saw my doctor today.

I'm currently on 100mg of azathiopren which was wonderful for 6 years but obviously isn't working now.

I suggested all the drugs I've seen on this forum, but he doesn't want to put me on 6MP because aza doesn't work and he doesn't want to put me on remicade because it can affect your bone density apparently and as a 19 year old girl he said he doesn't want me to be on it.

so, he's put me on 30mg of steroids for a month and if I am still getting symptoms, he said he will put my aza up to 150mg, but if I get into remission with steroids he will take me off azathioprine completely as he says the side effects are not worth it if it is ineffective, and put me on pentasa....

I was diagnosed aged 7 and was on pentasa from being 7 to 13 and had major flare ups, so to me that means it's not very effective? But he just said I can't expect to be in 6 years remission again and there's no wonder drugs, which I can understand, but still....

I'm really worried about being on just pentasa, what do you all think? Is it enough?

Also, when I was on pentasa when I was younger I had crohn's in my small intestine and now it's in my colon so it might improve the effectiveness...maybe haha

I also have a stricture now apparently! An 11cm in my transverse colon.

I'm just worried because I have to go back to uni in october and I don't want to be ill away from home like last year and I suppose I was looking for something a bit more..drastic to reassure myself that I would be well. Ah well.

Any opinions would be greatly appreciated, don't know what I'd do without this forum


Thanks xxxx

 

[David]

Hi Vicky

He's pretty much following the UK treatment algorithm. However, I would probably ask why he's not trying Budesonide as well if he is indeed following the algorithm. According to the treatment algorithm, IF you don't respond to the oral steroids and Pentasa/AZA or have an early relapse then he'll probably try a biological.

 

[Welsh-bird]

Hi Vicky.
I understand the not trying 6mp if the Aza is no longer helping, as they're the same drug, but don't understand why he would step down the treatment rather than use a biologic. Pred can also cause bone density issues!
I think I would have the same concerns as you- if an immuno such as Aza isn't keeping me in remission, then why would a 5ASA? Also, I thought Pentasa broke down in the small intestine, whilst Asacol broke down in the large (?) Just thinking out loud here though- I'm sure someone will be along to give a more logical answer.
Hope your soon feeling better

 

[littlemissh]

It seems plain weird that if aza isn't working he will step down....
Biologicals carry far less risk of bone thinning than pred.

 

[vickyhunter]

Thanks for all your replies, I'm glad you can understand my concerns

David - Thanks for the advice, I can understand that, I know they would rather try different things before more drastic measures. And yeah he did say he wouldn't consider remicade if I was responding to steroids/pentasa but if I wasn't only then would he think about it

Welsh-bird - My mum is on asocol and has ulcerative colitis, do you think asacol would be a better option for me considering mine is in my large bowel? I didn't know about it breaking down in different places of the system so thanks for letting me know that

Littlemissh - I knowww, I would have thought if aza wasn't working he would step it up not step it down! He said I've been worse in the past though and should count myself lucky I'm not as bad this time (erm, hello, how can you count yourself lucky when you're having a flare up of a chronic illness haha?) but my scope report said severe and he said he didn't think it warranted biologics so :/ and this is the 3rd time this year that I'm on pred so I'm starting to worry about bone density but he said it doesn't matter....

Thanks for your replies it's great to have more opinions on stuff like this

xxxxx

 

[Welsh-bird]

Vicki- When my dx was UC, I spent 10 years on Asacol, and then moved on to Mezavent XL. Now my dx is Crohns, they've changed my meds to Pentasa.
My understanding is that their the same drug (Mesalazine) but the formulations and coating mean they break down in different parts of the intestines, dependent on where your disease is located. Looking at your signature, you have Crohns in both your small and large intestine, so I'm really not too sure which would be more appropriate.

Still though, I would question stepping down treatment rather than going the biologic route.

 

[vickyhunter]

I see what you mean, well I'm seeing my doctor in November so I'll ask him about all of this pentasa/asacol debate. He actually said asacol but then changed it to pentasa halfway through the appointment!
If the stepping down treatment works I'll be very happy not being on aza but if it doesn't I'll just feel a bit crap because it could have been done earlier. But c'est la vie !

xxxxxx

 

[vickyhunter]

* feel a bit crap because a different route could have been taken earlier

 

[Welsh-bird]

Vicki- maybe the pred will knock the inflammation on its head, and get you back into a long remission. I sure hope so. Don't feel too crap just yet...give it time to work. May well surprise you. Hang on in there x

 

[beth]

Stepping up the treatment is much more logical than down. Adding pentasa/asacol to the azathioprine makes sense, as does upping the dose of azathioprine. 6mp is the active metabolite of aza so unless you are having trouble with the other non-beneficial metabolite it's not worth trying.

Allopurinol plus azathioprine has been mentioned on here before and there are a few articles on the web about it being beneficial for patients who are thiopurines (aza/etc) tolerant but don't seem to have efficacy.

OTOH I'd push for the likes of Humira, or Remicade, because the biologics are not that scary and much better for your bones/etc than prednisone.

 

[IAmTheWalrus]

I'm pred quite a while myself this year, it's a wonder drug for me, although I'll be starting Humira soon as I have a perianal fistula and the GI said it's a great drug for that so hopefully it gets me off the pred as I worry about bone density, I've being taking two 500mg Calcie D3 forte tablets daily also just in case.

According to my GI, well the registrar, I rarely see my actual GI as he is a professor and very busy in the University hospital I go to, internationally GI's are going for the "top down" approach with biologics as they are much more effective if taking earlier in the diagnosis.

Good luck anyways, Vicky.

: D

 

[vickyhunter]

Thank you for the luck IamTheWalrus I also rarely see my actual doctor, the doctor I saw today was his registrar, another reason why I'm not as confident with this result...

Well I was diagnosed 12 years ago so the top down approach wouldn't be their first choice now I honestly think if I was diagnosed now they would put me on remicade, it's like my wonderful 6 years of remission has worked against me as now he doesn't see my crohn's as debilitating because he sees this as the first flare up in 6 years, but to me this is a sign that the medicine is no longer working.

I suppose I'm just feeling frustrated, but I have spent most of this year on steroids and just wanted a long term solution and to hear him say he will take me off aza and just onto pentasa was a bit disheartening, considering I was on pentasa for the first 6 years of my disease and required azathioprine to put me in remission. I need to be really well for uni as I have quite a demanding course so I'm worried about this.

Really don't know what to do. On the one hand I want to be on medicine that is least risky but then I want a long term effective solution. Feel really stuck! Sorry for the rant haha. Suppose I'll just see how I go on the steroids and then take it from there

 

[vickyhunter]

Also Beth, I mentioned that alot of people on this forum are on remicade/humira and he said it would be one of the last options for me, he said people only go on it when even steroids don't work...is this true???
He said if I'm not in remission with aza/steroids/pentasa he will only then think about biologics.

I'll have a look into Allopurinol, thanks for the info

 

[beth]

From the NICE guidelines:

1 Guidance
1.1 Infliximab and adalimumab, within their licensed indications, are recommended as treatment options for adults with severe active Crohn’s disease (see 1.6) whose disease has not responded to conventional therapy (including immunosuppressive and/or corticosteroid treatments), or who are intolerant of or have contraindications to conventional therapy.

So the answers is no. You only need to have tried the usual gastro-clinic aza, 6mp and perhaps methotrexate.

I didn't have pred, I started with drinking Elemental 028, went on to and failed aza/6mp/mtx, and was then approved for Humira.

You've done the immunosuppressive so you are eligible for the biologics.

The only thing is he might not be eligible to prescribe them, where do you see him - a big teaching hospital or local town place.

 

[vickyhunter]

I think that is true actually - that he isn't eligible to prescribe - my consultant is a surgeon and the guy I saw today works under him as a registrar. He was saying how my consultants expertise is in surgery and my consultant doesn't know that much about internal medicines to treat crohn's (very reassuring I know, haha) so he would have to discuss it with the head gastroentrologist if I was to go on a biologic. The head GI, to add insult to injury, is the consultant who I singed off from about 6 months ago because he was an arse (no other way to put it haha)., he had a cavalier attitude and said things I suggested were "bollocks" so I singed onto my mums consultant, not knowing he was a surgeon and not a GI (my hospital is terrible btw haha)

Thanks for your support though, Beth, if only you were my doctor!

xxxx

 

[IAmTheWalrus]

The surgeon that did my abscess back in February told me he could start me on Biologics but he works directly with GI department so maybe that's why he had the authority, in fact he told me that he has some patients that suffer from perianal disease, no IBD, yet they are on Bios . . . .

Defo call a GI, I certainly wouldn't let a surgeon mess around with my meds.

 

[Ian]

Hi Vicky,

Sorry you didn't get better answers today. Hopefully the Pred will work for now, maybe you need to stay on it longer than you have done previously, by tapering much more slowly. And I thought it was standard to start at 40mg? 30mg has worked for you before but you were younger/smaller and have way more disease than you used to so it makes snese you might night need a heavier and longer hit of the meds. You should be on a high dose long enough for you to heal and then come down slowly. I'm worried he's treating you like a child just because you were diagnosed as one. If you don't agree with your treatment plan, question it.

Is there any way you can set up an appointment ar Warwick hospital for when you're back at Uni? I wonder if, with a second opinion from them, you might be able to persuade your doctor to go for harder treatment if you feel you need it. I can speak from experience that they have no problem issuing the big guns

x

 

[beth]

Ah, I dont know all the stuff the gastro's are supposed to know, only what I read online here and google finds for me!

Hmm, tricky about your reg/consultant. It's only a consultant that can now prescribe the biologics and the government are also tightening up which consultants as they wish to restrict it to only 'centres of excellence'.

You need a different consultant that's for sure. The comment about pred and bone density was wrong given you've been on it 3 times this year alone, and especially so with your age - ever had a DEXA scan, bone densitometry? Sounds to me like you are steroid dependent and need to up the maintenance regime massively.

 

[vickyhunter]

Ian -Yeah I'll look into getting a 2nd opinion.
And I always thought 30mg was the standard starting dose? tbh I'm very small ahah, I'm 5"1 and weigh 8st/112 lbs so I probably am more suited to a child dose! lol
I'm definitely going to push for biologics/some sort of long term treatment plan.

And yes, he said "remicade affects your bones, so it's not a good option" but he didn't seem to be at all worried this is the 3rd time I've been on pred !
My actual consultant is really lovely, it's just the registrar I saw today wasn't very good... you can't guarentee you will see the consultant though. I think I may ring his secretary tomorrow though and voice my concerns and tell him what his registrar told me and see if he agrees/disagrees.

Also, when I was in the room he went "You had an MRI? Oh... just let me go look at that"
How about, look at it before I come in!
Overall, I felt dissatisfied, worried and a bit neglected!

Thank you all for your advice so far though, it's invaluable!
xxxx

 

[Kit]

One more Biologic to the mix Cimzia. And just an agreement that Asacol (Mesalamine) is targeted anti-inflammatory for the large intestine. I have Crohn's and take it. Hang in there and I hope all goes well for you!

 

[Funlovinpikey]

I'm in 30mg pred and 10mg budes, looong to reduce pred over next couple of months once under control. If no luck, moving to remicade, but apparently require a chest zest prior to the course. Fortunately my private med insurance should pay for the first few but if it needs to continue then it's a battle to persuade the local PCT.

Hopefully pred will help us both! Keep us updated.....

 

[vickyhunter]

yeah I'm going to see how I get on on pred and then see where I want to go from there.
Funlovinpikey - How come you're on budesonide and pred together? Just interested
p.s great name ahah

xxxxx

 

[Funlovinpikey]

The azathiaprine didn't work for me at all. He has given me both because he doesn't want me on preds forever. With this set back though I'm gonna be longer getting off em.

Nickname is from uni, stuck with since, random I know. You should be in the bar with us when the lads shout me....dodgy looks!