What meds? What side effects? Benefits?

[My Butt Hurts]

I was thinking (I know - dangerous for me ) that there are so many medications out there. It would be great to get a list of medications (or other things) that work, or have worked for people, and side effects, and benefits.

I know that everyone has different symptoms, and every med works differently for people, but just a random sampling might be of interest to people. Some I have never heard of or tried. I guess I'm just scared to try anything new, if my latest pill combo doesn't work. For example, a relative of mine is very happy on Imuran, but I've read of people on here who are disliking it, or scared of the side effects. (My doctor mentioned 6mp, which I have seen on here, but never heard of before.) I'd love to hear what others are doing, and how it effects them! I'll start.....

*Sulfasalazine - an anti-inflammatory - worked well for quite some time, had a somewhat normal life, until it quit working. No side effects.
*Asacol - similar to Sulfasalazine, only used while breastfeeding, then switched back to Sulfa. No side effects.
* Prednisone - Been on it twice, starting at 40 mg, tapering off in 8 - 10 weeks. No side effects, other than I think it made me a little hyper. Didn't mind that though. Who couldn't use extra energy?
* Librax - an antispasm, supposed to help with urgency. Helps a bit, I think, but not a lot. Also contains an anti-anxiety, I believe. No side effects.
* Metronidizole - antibiotic for fistula. No side effects.
* Ciprofloxacin - antibiotic. No side effects.
* Pentasa - anti-inflammitory, I belive, similar to Sulfasalazine and Asacol?
Went on it instead of Sulfa. Did bring my # of BMs down from 15 or more to 4 - 6. (Along with the help of the Prednisone.) The only thing I don't like about it, is that there are tiny seedlike particles in the medication that pass through my system. I thought it was irritating me, but that could've been the fistula, or skin tags . (The doctor removed them during my fistula surgery?? How EXCITING!! No 5 skin tags!!:ylol2: )
* Vicodin - for pain after fistula surgery. Makes me sleepy, and sometimes feel feverish, but no fever. It's supposed to constipate you. Yippee!! The nurse told me to eat lots of fiber when I got home. I laughed in her face.
* Calmoseptine - an over the counter cream for butt irritation. Works wonders!! Shower, dry, then slap some of that on! It's thick, drying for chapped fanny, cooling, soothing, ahhh.........
* Lidocaine - a numbing gel, not long lasting, but okay in a pinch.

That's all I've been on. (Multi-vitamin and iron daily) Will be getting some probiotics once I settle into a pattern.
Right now it's Pentasa, Librax, and soon to quit Metro Cipro and Vico.

 

[soupdragon69]

Hi MBH,

Thought would help you out on the Azathioprine, Imuran and 6MP front.

Azathioprine and Imuran are one and the same thing. Azathioprine IS the drug and is the generic name, Imuran is the BRAND NAME used by companies to identify it.

Our bodies CONVERT Azathioprine to 6MP so it can be used. Some folks dont do too well on Azathioprine but manage fine on the 6MP so it seems to be something to do with the converting process that doesnt agree with them. In the USA my consultant tells me they just put patients straight onto 6MP whereas here in the UK they usually try Azathioprine first. Might be something to do with the costing of it not sure. I know he said if I didnt do well on the Aza he would swap me to 6MP to see if I got anywhere but am fine on the Aza so didnt need to change.

There are side effects with everything and sometimes its a case of working out what we can live with symptoms and side effects wise and as our disease changes so must we with our balancing act of everything.

Hope this helps.

 

[kpratte]

Metronidizole - Most people get a metallic taste in their mouth after a day or so. Doesn't make a difference whether it is taken orally or via IV.

Pentasa / Asacol - 5-ASA drugs (Mesalazine) - I haven't heard of any issues with it from GI or otherwise.

Prednisone - Steroid that suppresses the Adrenal gland. Once on, you can't just stop, need to taper down. Side effect depend on duration and dosage and number of previous times you've been on it.

A normal taper (least for me) is 40mg for 2 weeks, then 30mg, 20mg, 15mg, 10mg, 5mg, 5mg every other day till done. Total duration about 3 months.

Issues I've seen:
20 - 40mg - Mood swings, hyper, trouble focusing (mental wise), insomnia, oily skin, acne, increased appetite, muscle cramps, increased stomach acid, frequent urination, increased hair growth.

15 - 0mg - Oily skin turns into dry skin, get tired easier, most other issues gone.

One other fun thing that it does: leech calcium and potassium while causing sodium retention. Depending on how much you have been on it, osteoporosis starts to become a concern and calcium supplements may be needed. The potassium issues I have found to be a direct cause of my muscle cramps. I usually try to drink more OJ, but can't touch the stuff in the morning due to the increase in stomach acid.

- Ken

 

[Kev]

You can lump Salofalk in with the more commonly known 5-ASA drugs (Pentasa, Asacol). I wouldn't say it's totally side effect free, as it is a very potent anti inflamatory, and typcially given in pretty high doses... but most are moderate & can be accomodated by taking it with food and at the same times every day.

 

[dehma20]

I use neither of the medicine…..my doctor has prescribed me betamethasone; http://www.drugdelivery.ca/s33710-s-BETAMETHASONE.aspx because the swelling had extended deep into the lining of my intestine. I use to get extreme abdominal pain too. I log on to this forum so as to get more information about this disease….i hope that I will.

 

[kpratte]

I use neither of the medicine…..my doctor has prescribed me betamethasone;

It sounds very similar to prednisone.

"Betamethasone is a moderate-potent glucocorticoid steroid with anti-inflammatory and immunosuppressive abilities, used especially where water retention is undesirable."

"Prednisone is a synthetic corticosteroid drug which is usually taken orally but can be delivered by intramuscular injection and can be used for a great number of different conditions. It has a mainly glucocorticoid effect."

- Ken

 

[Kev]

Quick update. Though not a side effect, per se... but I just got confirmation on my allergic reaction to Imuran/Azathioprine. I hadn't heard from my "birth" mother in a while. Reason. She was hospitalized for a month after suffering an extreme allergic reaction to Imuran. Escalates my concern for my kids should they ever require it... whether it's for IBD, or for organ transplants, whatever..

anyway, to all parents out there... If you suffer an allergic reaction to any drug, this info should be passd along to your childrens doctors (if different).. Just an FYI for your consideration...

 

[MarkyB]

Thought I'd share my experiences with some of these drugs.

PENTASA - Taken regularly (2g per day) over last 10 years - no side effects.

METRONIDIZOLE - Gave me severe (worst hangover ever had) headaches - taken off them after a week.

PREDNISOLONE - The usual spotty, bloated face if taken for any length of time. Mood swing, one minute happy, the next very depressed (usually when taking 20-40mg over any length of time)

AZATHIOPRINE - Just started, took 25mg for 7 days and then straight onto 150mg (which I have been on for 5 days now) The same day I increased to 150mg was violently sick about 4 hours after taking. Each day since have felt very sick approx 3-4 hrs after taking, but does seem to be easing off a bit.

REMICADE - Will let you know after I have had my first infusion in November.

Hope this gives other some idea of how these drugs can effect you - BUT REMEMBER - everyone with Crohn's seems to have different symptoms and everyone can react differently to these drugs!

As for the benefits - well since 1989 I have had three re-sections around the terminal Illeum, the last being October 2006 and I am now going down the Biological route (Remicade) say no more!

 

[Guest]

i've been using prednisalone suppositories for a few weeks... then 3 days ago was advised to stop, and use asacol instead.

since the changeover, i am passing black mucous - obviously this is blood. am just waiting to see the gp later today. i've checked on the side effects of asacol & it says "stomach pain, cramping, bloody diarrhoea... etc", so i am hoping that the bleeding is a direct reaction to the asacol and nothing more sinister.

i just wondered, does anyone think the prednisalone may have thinned the mucus membrane and therefore the asacol had a worse effect than it should have done?

just grasping at straws to calm myself down, really this has really frightened me.

dingbat

 

[katiesue1506]

I don't know... but I didn't know the made Prednisone suppositories... interesting. I'm sorry I can't be of more help to you. But I CAN tell you not to stress about it... it makes everything worse

 

[Kev]

Yeah, steroidal meds come in a variety of 'packages/delivery systems'. I've had steriodal suppositories, steroidal enemas (OMG, they were the WORST) and steroidal cremes. (usually in very mild concentrations). the pred in pill form isn't bad, except when I had to split the pills for 1/2 dosages. the taste left a lot to be desired.

 

[Shane]

Current drugs,

PENTASA - No side effects. Unsure of benefits (if any) as always taken alongside other more powerful drugs.

METHOTREXATE - No side effects noticed as yet. Again unsure of benefit as taken alongside Pred before, and now Infliximab. UPDATE DEC 20TH; Has caused nasty inflammation in my Liver! Discontinued use.

INFLIXIMAB/REMICADE - Side effects, very tired for 2-3 days after infusion. Red blotches on skin once or twice (minimal). Benefits, kept me off Pred so far. Feel similar benefits to when I was on Pred. Optimistic about this one.

Past drugs,

PREDNISOLONE - Side effects; insomnia, moon face, back covered in dark red spots. Maybe some mood swings when over 20mg per day. Headaches. Severe joint pain (although this may have been a symptom of Crohn's as opposed to a side effect of the pred). Benefits; awesome change in condition. Able to eat and function near normally.

AZATHIOPRINE - Gave me pancreatitis. 'Nuff said!

METRONIDIZOLE - Helped clear up pancreatitis. No side effects.

CODINE - Side effects; knocks me out for 2-3 hours. Benefits; takes the edge off the joint pain.

 

[Guest]

thanks for your responses guys.

seen the gp.. we've decided to leave me off any meds at all, see if this reaction calms down, then have a rethink in a few weeks.

its a pain in the bum.. literally. lol


dingbat

 

[Kev]

Well, typically suppositories and enemas are much stronger concentrations. I wonder just how potent your drugs were. I hope this turns around for you.

 

[Guest]

thanks kev


dingbat

 

[Guest]

it seems my hunch was right about the predsol causing the alarming bleed... have been back to clinic today. the asacol was 1g, which the (different) physician i saw today thinks was far too high a dose for me, particularly as it was a suppository.

so, i will be back to predsol shortly, in retention enema form, plus .25g asacol.

hopefully, this reduced dose, plus the hydrocortisone, will calm things down.