5 drugs and the nightmare of side effects

[MD24]

hi
i was diagnoised with CD yesterday and my Dr prescribed me 5 drugs:
-Imuran: 2x50mg/day for five years
-Mesalazine:4x400 mg/day for two years
-Prednisole:3x20mg/day for a month then to be reduced by 1/4 tablet every week
-Metronidazole:2x500 mg/day for two months
-Ciprofloxacin HCL: 2X500 mg/day for ten days
It has been only one day and havent felt athing yet but already terrified about the side affects which i learned by reading the publication and experiences of ppl who tried some of those on the net
they r just too many and most of them r too hideous
pls if u tried one or some of this drugs on the list tell me what side affects it caused ? or if u have any stats about this issue pls share
sorry about sounding like a coward but its just my first official day with CD
and by the way the only side affect ill be happy with is gaining weight and having the moon face which ll be a good change from my bony face :ybiggrin:

 

[My Butt Hurts]

Hi MD24, sorry about your diagnosis, but now you can get to treating yourself.
The list of side effects are things that COULD possibly happen. Even the patients on the placebos had side effects, so you can't tell if they are caused by the drug or just coincidental.
I've had almost no side effects for any off the many meds I have taken, not even the pred moon face, so it is possible that you'll be just fine taking them.
Are you taking your prednisone all at the same time or spread out? It may help to take it in the morning, sleep problems occur in a lot of us with pred.
Good luck with everything, and welcome to the forum!

 

[shazamataz]

Welcome and I must say: YIKES!

That seems like a lot of drugs! So I can understand your concern. The bottom 2, by my understanding are antibiotics and I expect wouldn;t be a long term thing, but I am a little surprised about using all of the other ones.

However, you haven;t said anything about the severity of your symptoms or anything, so perhaps you are really ill?

My experience, brieffly, may help, to gauge why you are on so many meds:

Diagnosed just over a month ago with inflammation/stricture in terminal ileum plus an abscess. Was having a lot of pain, sweats, fevers and constipation.

In hospital for ten days and on lots of antibiotics plus prednisone. Sent home with tapering sose of prednisone and nothing else and it seems so far to be doing the trick - fingers crossed.

Did they give you any advice on diet as well? There are a lot of things I am slowly learning you can do in this area which also help.

I kinda agree about the moon face. I was worried about it but have actually just filled out enough to actually look healthy. haven't really managed mych body weight gain yet (only 1.5kg in a month) but still trying!

Take care fellow newbie. It isn;t the best news to be diagnosed with CD but at least we can tackle it with knowledge!

 

[imisspopcorn]

I have been on every one of those meds at one time or another. The only side effects I ever had was on the Prednisone. (And they are kind of expecteded with that drug.) Some people react to every med they take and others do not. I have a love hate relationship with Prednisone. I hope you start to have some improvement soon.

 

[misscris]

Hi MD24 and :welcome: . Sorry to hear you have CD and such a scary list of medication for you to come to grips with so quickly. But like MBH said, now you can get to treating yourself. I know it's just overwhelming to stare at such a list of medications that you don't want to take in the first place and then you read the side effects and it makes it even worse. I know, I did the same thing. My Doc told me to research them first before he prescribed them. That backfired on him because then I didn't want to take any! hehe I haven't started any medication myself yet, but hopefully soon if my Doc will get busy and write the prescription already. :ymad: grrr

So anyway ... welcome. We are a pretty welcoming bunch.

 

[Wizbit]

Hi MD24...

I have been on the Mesalazine (4 x 800mg/day) and Prednisolone (max 40mg/day) for over 4 months now and have noticed very minimal side effects. The only thing I have noticed is that my skin on my face becomes more oily and I get more spots. This is easily combated with increased face washing and moisturiser though.
Admittedly, I haven't had a massive dose or been on them that long compared with some people, but I have had no weight gain or appetite problems. No hyper-activity, insomnia or aggression. No moon face... etc.


Not trying to be blasé about the potential side effects, but I am a firm believer in a positive mental attitude. Just try and put any preconceived ideas about what is going to happen to you out of your mind and don't worry about it. Easier said than done, I know, but you almost have to be arrogant and decide that you are not going to let the drugs effect you in a negative way.


Having said all that... the relief that I get from the steroids is probably worth some of those nasty side effects! :tongue:

 

[ChronsSUCKS]

The most noticable sideeffects are probably from the prednisolone. But you also might get no sideeffects at all. This applies even to the same person taking the pill at different times. Maybe when you get prednisolone now you get no sideeffects, but then after a few years you go on the treatment again and get every sideeffect possible.

Just keep in mind that all of the sideeffects from any of these pills are alot better than having surgery.

 

[MD24]

Are you taking your prednisone all at the same time or spread out? It may help to take it in the morning, sleep problems occur in a lot of us with pred.
Good luck with everything, and welcome to the forum!

yes all in the morning,i did not know why not after every meal but this is the reason i guess.thanks for the info

 

[MD24]

shazamataz

actually my symptoms r not that bad compared to other ppl, my abdominal pain is bearable , the worst thing is dropping weight(i weigh 45 kilo which is about 100 pound and thats too little even for s short guy like me)
fatigue is a problem too
though my Doc told me that my crohn is severe and advanced so am confused about that
thanks for sharing yr story and i hope u get better
no specific diet has been given to me,just told me to stay away from milk,vegetables,fruits but am researching, the Doc was so brief on everything which pisses me off, i had to learn about the disease on my own with the help from ppl like u
thanks again

 

[MD24]

imisspopcorn
thank u
---------------
misscris
i feel much better 2day, i think it was the shock of having to deal with all these drugs, i just felt terrible leaving the pharmacy with a big bag of drugs then started to think and worry about the rare side effects but hopefully day after day ill learn how to deal with this situation in all aspects
thanks for replying
-----------
Wizbit
yes this is what am counting on,that the relief ll outshine the side effects
--------
ChronsSUCKS
oh yeah ill follow any diet or prescription to try to avoid surgery
------
thank u all for replying, u really made me feel better

 

[forum contributor]

Hey, MD. Welcome aboard

I'm sorry that I don't have much to add b/c although I'm on 3 meds, they aren't any of those.

I just wanted to say hi and welcome!

 

[MD24]

thanks

 

[Lisa5326]

Welcome welcome! Good luck and hopefully this is the start to you feeling better.

 

[shazamataz]

Hi again MD

Diet-wise i think it depends on exactly what is going on. I have a stricture/narrowing and so have to avoid anyting fibrous and anything with 'bits' likes eeds or pips for now.

You don;t weigh much at all! I would suggest asking your gastro doc to prescribe some high energy drinks which can help get the calories in. In New Zealand we get one called Fortisip, which is a bit like a milkshake and tastes really pretty good. I get an extra 900 calories a day with three of those and, on prescription, they don;t cost me anything.

I don't know if they have helped me yet but supplements are a good idea as you arent absorbing food properly. I'd get a good multivitamin (was recommened a mens one with no iron as taking iron can cause problems in the tummy, but others here take it). Also get your B12 looked at as this is often low and can make you tired. I was also given calcium and Vitamin D by the doc, as crohns and the drugs can lead to problems with osteoperosis later on - some calcium absorbtion issue.

I believe every little thing we do can be beneficial, and every thing we do that does not involve chemical intervention has to be a positive. But I guess you still have to check with the doc first?

good luck and keep us updated with how you are doing

shaz
:Flower:

 

[MD24]

hi again shazamataz
i really don't know if i have stricture or just inflammation,as i said my Dr almost told me nothing except (u got crohn disease,no fibers or milk,take this prescription)!
and as i learn more about it,i have lots of questions so am gonna see him next week and get some answers
i live in Syria, im not sure u can find high energy drinks here.i could't even find soya milk. and prescription doesn't get u anything free or even a discount here but they r not that expensive.
am gonna see my doctor next week and gonna ask him about taking supplements.i already have weak bones and am worried about drugs reducing bone desity.also gonna see if he recommend me working with a nutrition specialist, i really wanna gain weight asap cuz i look ridiculous
thanks again

 

[shazamataz]

Hi again,

You definately want to go to the doctor prepared with questions. I found the ones here hopeless and I was sent off, like you, with very little information. Any information I did get was because I pestered them for it, but in my newly steroid-induced semi-mania, I didn;t ask all that I needed to or likely remember what they said!

You may of course not have a stricture, but I thought that was one of the main reasons they put me on low residue food, so certainly ask.

The energy drinks are medical ones. They use them here in old people's homes and for people in hospital who can;t tolerate food or swallow solids or whatever. Definately something to ask about because at least they have lots of nutrition as opposed to something you may buy at the supermarket. Even if you have to pay, it may be worth it to get those extra calories in.

Yes, so, I understand where you are at. Questions. Questions. Questions! Write a list - I did when i had a follow up and I think the guy was like 'oh, no not this one again.'

Doctors can be arrogant and not treat the patient like a person. They just want to give you drugs and send you on your way. Mine didn;t even tell me about the Prednisone side effects which I reserched myself.

It's all about taking control yourself.

good luck and I look forward to hearing how it goes for you

shaz :Flower:

 

[shazamataz]

Ooh, and do look into the bone density thing. I too will be getting that checked when I see the doctor next.
s

 

[MD24]

yeah,making a list of questions is a great idea,thank u.gonna do it.things i came up with so far r:
-where s my crohn? illeum,colon,both?
-what kind? just inflammation?,structure?abscess?
-what is the chance that i ll need surgery?
-can i /should i take any vitamins ,supplements with the drugs am using?amino acid,iron ok?and should i get a blood test to know what i lack?
-what r the side effects from drugs that i should report?
i think ill be ok and settled after getting my answers, i hate not being well informed about anything,not to mention a lifelong illness
doctors can be arrogants, but actually mine is a very famous and brilliant doctor and u dont find much of those here.my aunt spent years switching doctors and they performed 2 unnecessary surgeries and missed up real bad with her body b4 she saw him and he diagnoised her with crohn and she really improved since.his clinic is so crowded all the time that even with an appointment u might have to wait for 3-5 hours so i understand him being brief but still not leaving that place next time without my answers!

 

[Mazen]

Hi MD. so you are from Syria? I'm from Lebanon so we are neighbours. I also travel a lot to Syria for work.

When I was first diagnosed , I was also given all the drugs you were taking except the Imuran, which I took later.

Now that you have been diagnosed, you should focus on getting better and having remission. Diet wise, I think a low residue diet should help. I also advise taking a multivitamin as well. Since you are on prednisone, try to eat a high protein low sugar, low salt diet and take Calcium since prednisone can cause bone loss.

If you have any questions, please don't hesitate to ask. Good Luck

 

[MD24]

ahla wa sahla my neighbour Mazen
u might be able to help me with something:all the drugs i take r made in Syria except the Imuran which s made in Germany.foreign drugs come here through Lebanon mostly and iv been told that recently there r lots of fake drugs there.is this true? and if yes how can i tell ?

 

[fenway1971]

Hi MD,
Seems like a lot of drugs to take at once. I started with mesalamine, then prednisone, now 6mp (imuran equivalent).

prednisone had worst side effects for me. i agree with your fellow middle-easterner - focus on getting better and achieving remission. Healthy diet, vitamins, etc. is best.

Make sure your doc checks blood regularly - supposed to for imuran to make sure your body accepts the drug - and also check for vitamin levels. I was found to be Vitamin D deficient which many of us crohnies are.

Welcome!

 

[shazamataz]

I agree with the Pred mania thing.

Mine seems to have eased off now after a month, but for the first few weeks I got so much done! Didn't like the shakey feelings, but the motivation to do stuff was amazing. I also felt really, really happy, almost euphoric. I am hoping that some of that is also 'me', being finally happy to know what is wrong with me - better than spending years thinking you are 'mental' because you always feel unwell, but with no reason.

So, yes, you may find a big burst of energy on the Pred, but remember to rest too. I have to force myself to have a lie down after work at 3, even though I don;t feel like it. I still feel very tired, but it isn;t as debilitating, and i don;t want to rest as there is always stuff to do, especially when you have been off for a while and things have piled up.

And, I also found to start with the Pred made me want to eat ALL the time. I couldn;t stop thinking about food and aftre dinner i was ready to eat the whole thing again. This isn't such a bad thing when you actually need to put weight on. The appetite seems to have eased off for me now too but I must battle on as have only put on less that 2 kilos in a month and need about 3 more to be back to 'normal'.

Good list of questions. Make sure you write things down that they tell you so you can do some of your own research too.

ciao
shaz :Flower:

 

[shazamataz]

I totally relate to that!

I am on Pred at the moment and, while I am tapering and the mania seems to have calmed down a little, I was told by several people when i was at my highest that I was 'exhausting'. Apparantly i was lucid and not saying anything weird or out of the ordinary, I was just FAST!

Quite fun really, almost a shame it is wearing off - I got heaps done

I feel bad for those who get the depression/moody/angry effect of Pred, and hope I don;t have that coming

Shaz :Flower:

 

[MD24]

this is not good,this even worse than my symptoms b4 taking any drugs.
am having constant fever and headache,sleeping disturbance,terrible nausea and feel like about to vomit but never did so far,stomach pain,am even having nightmares when i sleep, all these things r new to me so am sure its the drug
man,it s only been a week, i dunno how am gonna deal with this thing

 

[Mazen]

Hi MD. All the drugs I take are foreign (except the Prednisone which was made in Lebanon). In order to make sure the meds you are taking are not fake they should have the medicine trador's stamp. It is a shiny sticker with RPF written on it.

P.S: The Imuran I was taking was made in England not Germany

 

[MD24]

thanks Mazen
--------
Metronidazole was awful to me,the nausea was terrible and consant but im feeling better after dr told me to stop taking it

 

[Hope]

Hey everyone....I'm pretty new here as well! I have had Crohns for 25 years now, and have been on every medication that is out there. Speaking of side effects, I am currently on Humira and I did the starting doses, and now i am now one injection per week-so it's been almost two months in. I have had fevers for the last couple of nights, and usually after the injections (the same evening or the next couple of days) I tend to get wild cramps and my stomach makes crazy gurgling noises. I usually will have this for 3-4 days after my injection. Has anyone experienced fevers and this abdominal cramping-distention-painful feeling after a Humira Injection?

 

[littleone]

Hey everyone....I'm pretty new here as well! I have had Crohns for 25 years now, and have been on every medication that is out there. Speaking of side effects, I am currently on Humira and I did the starting doses, and now i am now one injection per week-so it's been almost two months in. I have had fevers for the last couple of nights, and usually after the injections (the same evening or the next couple of days) I tend to get wild cramps and my stomach makes crazy gurgling noises. I usually will have this for 3-4 days after my injection. Has anyone experienced fevers and this abdominal cramping-distention-painful feeling after a Humira Injection?

i felt awful. i had to quit taking it (w/o my dr's clearence) b/c i felt so bad. i took the loading dose expecting to feel really sick as it said it can make you nausous (especially b/c i'm only 100 lbs and god did it.) but after a few days i only felt a little better and still feel awful. it's not really one particular thing, but i just feel worse than before. i treid calling my dr after a week and he never called back so my mom called and i called again and finally i called the humira/remicade nurse (by this time it was two weeks) and she said "no. you shouldn't feel that bad at all" and she called all the offices to get him to call me and he was real rude about it, "well i thought you wanted to feel better" yeah i did but don't be a weinie. he only tried me on asacol for 6 weeks then went straight to that. i started to wonder if drs perscribe a certain number of patients certain drugs and get a kick back. and i never used to think like that, but now i really wonder. there are sooo many other drugs out there. why not try me on something else. or keep me on the steroids for a little while longer while i was on the asacol. i'm searching for a GI crohn's specialist now rather than just a GI.