What other medicines should I try?!? Help!!!

[KayleighK]

Really getting fustrated now :ymad:. Nothing seems to be working. This is my third week off work and its really getting to me.
Been on Pentasa which didnt help. Then was put on Prednisolone. Didnt help. Ended up in hospital now I am on Pentasa, Entocort, Azathioprine, Ferrous Sulphate and Adcal-D3. I go to see my GI doctor next week so I'd like to be prepared and not just fobbed off with another pack off pills that won't help me.

Any help much appreciated
x

 

[PsychoJane]

How long have you been on Azathioprine?

I'm just asking because it may take up to 3 months before it shows proper results. Same goes for purinethol-mp6 (takes up to 3 months) and methotrexate (3-8weeks). These are the principal immunosuppressants they usually prescribe before anti-tnf. There are several other meds used in the treatement of CD depending of the type of manifestation and severity of the disease you have.

Anti-Tnf are usually the big guns actually used for refractory Crohn. They are very expensive and usually used when everything as been tried. You can take a look to Remicade(infliximab), Humira(adalimumab), Cimzia (certolizumab pegol), there is also Tysabiri (Natalizumab) which is a tricky one. There are 2 types of school with the use of these anti-tnfs. Some doctors go in favor of using them in mono-therapy (Anti-TNF alone), some give priority to a dual-therapy (immunosuppressor mentionned before + anti-TNF).

Antibiotics may also help to reduce the inflammation when having important flare-ups (usally ciproflaxone and metronidazole). They can be used in simultaneity to cortisone while waiting for the immunosuppresor to take action.

Sometimes, surgery might be the best treatment. I assume that if it was something to consider your doctor would have already mentionned it.

I hope this helps you and that I did not repeat things you already knew. Good luck

 

[beth]

Define "not working"... what are your symptoms?

Also how much iron are you on, what form, how often, and when did you start it?

 

[KayleighK]

I've probs not been on it long enough just dying to see some form of improvement!! Thanks a lot that's really good advice. I'm on 60mg a day been on it for about a month now. Was taking iron earlier this year but was told I didn't need to take it as my iron levels had up-ed but been put back on them. I just cannot leave the house right now! It's terrible constantly in the loo, constantly in agony. Really feels like it's controlling my life just now

 

[beth]

You didn't define not working. Regardless, iron will not help the agony or loo visits due to diarrhea. In fact it may be the source of your problems. Iron tablets, can and usually do irritate your stomach causing gastritis. That's a upper central to upper right quadrant pain. It usually makes people 'loose' as well. So that might be causing your loo visits. Are your blood iron levels so low that you can't stop taking the iron, probably not or you would be getting iron injections or transfusions... Even if you stop the iron tablets gastritis can continue because your stomach acid is now attacking the inflamed lining. You might need the likes of omeprazole to stop the acid production for a while allowing everything to settle, if that's the case. You should see your GP tomorrow about whether you can stop the iron or change it to a different formulation; Sytron a liquid iron is easier on my stomach, and whether your pain includes gastritis.

So back to the agony. Where, what, when? you need to think about this to get the best out of anyone here, or your GP, or the registrar/consultant you see at the hospital. Just saying its not working, wont help anyone to help you.

If it isn't gastritis, from the iron, it might be pancreatitis from the azathioprine. Or some other azathioprine related thing. Combination of entercort and azathioprine should see you improving, but it might not be strong enough to be complete in itself. So another pack of pills may well follow, and they might not work either - welcome to Crohn's, it stinks.

How long have you been on the azathioprine and how much? days, weeks, months, are you still getting weekly blood tests? If you have only been on aza a few weeks it may well be pancreatitis as these things generally appear in the early stages. So does the pain radiate to your back?

You said pred didn't work earlier. That's most unusual. Pred should do something. Have your doctors mentioned surgery. Have they done any tests to determine what's going on?... like colonoscopy, gastroscopy, or small bowel follow through?

 

[KayleighK]

I think it's just I'm having a bad flare up because I never had any problem with Iron before ( I was given Iron before diagnosed with Crohns for anaemia ) My lower abdomen feels like it's been kicked by a horse! When I do go to the loo (which has been 5 times already today) I feel like I could pass out the cramping is so bad, literally causing sweats. I get a shooting pain that travels to my left shoulder (I have mentioned this to docs before and they never said anything about it) I was put on Pred when I kept passing blood clots and lots of fresh red blood. Was on the Preds for weeks and was still passing clots that's when I was admitted to hospital. During my hospital stay I was put on these new meds. I was in hospital 5 days. I asked to go home as I was having to wait for an MRI scan which they wouldn't do over the weekend so I'm down for an outpatient appointment just waiting for a letter. No mention of surgery as of yet. I'm wondering if a liquid diet might help to settle things down. I had a colonoscopy in June of this year which helped to diagnose me so next thing is this MRI which I hope comes soon just to put my mind at ease anyway. It's all relatively new to me...and yes it stinks!!...also only been on the azathioprine for a few weeks now. I'm still getting bloods taken every week.

 

[beth]

Ah right. Lucky with the iron, it does terrible things to me. It can still cause you grief at any time, so do keep an eye out for upper pain.
I know how frustrating and horrible hospitals are, in this case it might have been better to have stuck it out to get the scan in quickly, but hindsight an' all that.
Lower abdominal, and been 5 times. Hmm, could be a stricture, they're horrible like that. Do you have bloating or distended abdomen/stomach?

Could also be IBS. Have you tried an antispasmodic like Buscopan/Spasmonal? - I'm not saying you have IBS as fecal blood says otherwise, but you might have it as well! And since you can get those over-the-counter are easy to try out, a bit of relief is always a good thing no matter how small.

However, I'm concerned you're getting so much pain. There are complications with this disease such as perforations which are a full on 'blues and twos' medical emergency. So I do not want you to accept being in pain is just the way things are. It isn't, not without knowing exactly what is going on in there!

If you're not seeing your GI until later in the week I'd go along to your GP tomorrow: to check you out, make sure nothing is getting out of control too badly, and to see if they can chase up your MRI appointment.

 

[Astra]

Kayleigh

The shoulder tip pain needs investigating, could you be pregnant?
Shoulder tip pain could be down to a number of things, ectopic pregnancy, injured spleen, blood draining from the diaphram or gas.
If it's gas then sipping, not drinking, cooled down boiled water will help.
I agree with Beth, you're in pain for a reason, get to the GP and insist and persist.
Good luck
xxx

 

[KayleighK]

Seen my GI doctor. Got to keep taking the steriods for another 2 weeks and then he wants to see me again. If things havent settled i've to go back into hospital and get steriods intravenously. blurghhhhh

 

[Ian]

Hope the Pred works for you over the next 2 weeks, and if not, then the IV steroids. Hopefully if they can get you under control, the Aza will have time to kick in (after just a few weeks it probably isn't doing squat just yet!).

If neither work, they'll probably start you on a biologic; Remicade/Inflximab or Humira/Adalimumab. I'd guess Remicade since it tends to be faster acting and if you've been hospitalised with your symptoms they may not want to just release you on a drug than can take a couple of months to kick in! Remicade is considered more of a 'rescue' drug; it can do wonders overnight for some people.

Good luck, hope you're on the mend soon