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Crohn's Disease Forum » Your Story » How many pentasa?


03-26-2017, 02:20 AM   #1
Armelle
 
Join Date: Jan 2017
Location: Lytham st annes, United Kingdom
How many pentasa?

Hi,
I've written on here in December . I am not officially diagnosed with UC but I have an IBD nurse who says I have that. I was put on Pentasa in january 4 tablets a day. I reduced that to 2 after 1 month. The bleeding came back. A gastroenterologist put me on 2 pentasa tablets and 2 suppositories a day as he said suppositories work better for the area where I have inflammation and to do that for 2 months. However the pharmacist and IVD nurse do not agree and told me to take only 1 suppository and 2 tablets. I am unwell. Nausea and exhaustion but no bowel problems. I also have brain fog. Who to trust and believe.
Anyone had any confusion over dosage etc...
Thank you.
03-26-2017, 09:55 PM   #2
Trysha
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It may be time for you to talk to your gastroenterologist and let him know of the conflicting advice you are receiving.
Speaking personally I would be choosing the advice of the gastroenterologist over that of others.,that you mention.
It does seem that your therapy is not working for you and therefore it would be advisable for you to see the Gastroenterologist in any event.
Feel better soon
Hugs
Trysha
03-27-2017, 02:01 AM   #3
Armelle
 
Join Date: Jan 2017
Location: Lytham st annes, United Kingdom
Thank you Trisha,
I will do that today.
03-29-2017, 12:27 AM   #4
Armelle
 
Join Date: Jan 2017
Location: Lytham st annes, United Kingdom
Hello Trisha,
I saw the IBD nurse yesterday who put me on predisolone enema for a month, mesalazine foam enema and 4 g pentasa. God I hope this cocktail works. Seeing the gastro in a month too and doing blood test for the fatigue. I have just been diagnosed with glaucoma and that is mentioned on predisolone leaflet. I hope I am ok.
Thanks for your support.
Armelle
03-29-2017, 01:44 PM   #5
ronroush7
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Hope the best for you.
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Diagnosed in 1990. On Humira, Imuran, Gabapentin, Colestipol, Synthroid, Lialda. Resection in April of 2010. Allergic to Remicade, Penicillin, Flagyl, Doxycycline. Thyroid issues and psoriasis and neuropathy and mild cerebral palsy. Mild arthritis in my lower back.
03-29-2017, 06:31 PM   #6
Lady Organic
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local/rectal use of pred will diffuse very little in the body, thats one of the advantages of rectal therapies. So i would not worry too much about the effect on the glaucoma. it is still important you mention it to your GI team. Im crossing fingers the new medication regimen will work for you. good luck
__________________
''UC-like Crohn's'' since 2001:
on: 25mg 6-MP (purinethol)+ B12 shots
minor hands/wrists chronic arthritis since 01/2013

Diet: ''IBD-AID'' : http://www.nutritionj.com/content/13/1/5+ organic food only
suppl Curcuminoid extract, Inulin,psyllium, apple pectin, Vitamin D

past meds:
pred 50mg, 5-ASA, cortifoam, Imuran (failed) Purinethol (success) methotrexate (failed CD and arthritis).
04-09-2017, 02:53 AM   #7
Armelle
 
Join Date: Jan 2017
Location: Lytham st annes, United Kingdom
Hello again,
This new treatment is not working properly. I have periods in the day when I feel great especially in the afternoons but mornings are terrible after a good sleep. Fatigue, achy lower back and still rectal bleeding. I won't see my consultant until 27th April. The IBD nurse said to continue prednisolone enema for another week. I am supposed to start work on 18th April and I can't see myself managing it the way I feel. She said she can't prescribe oral steroids. The consultant has to do that. If it takes at least 2 weeks for them to start working I am left with another month of feeling dreadful. I was given a leaflet about UC last June after my sigmoidoscopy and no medication until this January after a colosnoscopy. I find all this waste of time shocking. Do I have to book a private appointment with the consultant to get these blasted steroids? Fed up
04-10-2017, 11:28 PM   #8
Armelle
 
Join Date: Jan 2017
Location: Lytham st annes, United Kingdom
One more question please. I spent the night in hospital feeling really poorly. They gave me IV steroids once and sent me home with 6 weeks of oral steroids. How long do they take to work? I am supposed to be back at work next week.
Thank you
04-10-2017, 11:44 PM   #9
ronroush7
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One more question please. I spent the night in hospital feeling really poorly. They gave me IV steroids once and sent me home with 6 weeks of oral steroids. How long do they take to work? I am supposed to be back at work next week.
Thank you
I don't know the answer but I am sending support and prayers.

04-11-2017, 12:09 AM   #10
Layla
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Depending on the dose they usually work very quickly. My first time on 40mg of Prednisone made a difference within a few hours, that quick!

What dose are you on?
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Layla
Diagnosed with UC in 1994, CD in 2014, "IBS" in between
Lactose intolerant, IgA deficient and Arthritis.
Resection due to strictures in 2014
Currently taking: amitriptyline, zinc, multi vitamin, b12 shots, Vit D, B complex, magnesium, calcium, Psyllium and the occasional iron infusion, probably sarting a medical trial soon

Previously on Remicade, Humira, Prednisone, Azathioprine, MTX, Pentasa, Asacol, Salofalk
04-11-2017, 03:26 AM   #11
Armelle
 
Join Date: Jan 2017
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Great. I started prednisolone 30g today and then went to sleep again.
04-12-2017, 09:21 PM   #12
Lady Organic
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it depends, it can kick in very fast in few hours or it can take up to 3 weeks to kick in. I have experienced both scenarios.
04-13-2017, 03:54 AM   #13
Armelle
 
Join Date: Jan 2017
Location: Lytham st annes, United Kingdom
Day 3 and I feel better apart from tummy cramps and chills in the night. I am definitely better than Sunday. I am looking after my daughter's little dog and I am walking a mile twice a day. Makes me feel alive.
How long were you in remission after taking the steroids please?
04-14-2017, 10:53 PM   #14
Lady Organic
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nobody is the same. without maintenance treatment, flare came come back at the end of treatment or soon after or one can be lucky and experience ongoing remission for a while after. ideal is to have a maintenance of remission plan and maybe your dr will propose the pentasa pills or suppositaries as maintenance. Do you still take these?
04-16-2017, 09:36 AM   #15
Armelle
 
Join Date: Jan 2017
Location: Lytham st annes, United Kingdom
Yes I do. 4mg pentasa, I asacol enema, 30 mg pred, movicol as I am constipated and buscopa. I have been suffering for IBS constipation symptoms for many years but now with the rectal bleeding, they call it UC. All these meds don't seen to have much effect. I am still bloated, noisy stomach etc... seeing the consultant on 27th. See what he says.
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