Prednisone

[SunshineSmile]

Was in the hospital and had prednisone through my IV for the last 4 days.
First time taking them orally this morning, and i've just felt awful.
really bad cramping, nausea, and just had diarrhea and mucus...
Anybody dealing with this or has dealt with it?

Are there any medications that you think work really well? What options of treatment are there?

I still feel like I have to have diarrhea again.. i'm just really not feeling well. And my doctor said i should be feeling great with a big smile on my face, but not yet.. I felt good in the hospital.. but not anymore.

Any advice???? please!!

 

[guest9933]

I hate that stuff worst drug for me I get cramps a eat like a pig also it bloats me like theres no tommorow

 

[Mountaingem]

Oh God, a funny doctor-the worst when you're not feeling good. Sorry but I think maybe you aren't on a high enough dose of the pred. When you switch from the high IV dose to oral it might have triggered the flare to return-it's happened to me several times.I know it sucks but if you're still having that many symptoms I think you better call your GI. What other meds are you on?

 

[SunshineSmile]

Yeah crazy doctor, right!? lol.. All I know is that he said i was suppose to be happy, and well, i'm not.
I keep calling my doctor but they just said that they'll see me on the 14th for my appointment, and I would like to talk to someone before then. Oh well I have to wait. but I'm going to call everyday to keep seeing if they have any cancellations.

Right now all I'm on is prednisone and tapering down for the next 3 months.
He prescribed Pentasa but it's huge and i have a terrible reflux and nausea problem so I don't know how that pill is going to work.. I just think I need to talk about other options with maybe a little bit of a small pills or maybe shot injections or infusions or something, i'm not really sure how this Crohn's thing works...

 

[Emily]

What about Entocort? It's another steroid but it focuses only on your GI tract instead of your whole body like pred. Entocort was a godsend for me. The kind of goodness that people say they had on pred is what I had on Entocort. Also there was no side effects that I noticed.
You should have this option. I told my GI that I had a miserable time on pred as a child, so he said no problem and gave me Entocort.
Hope this helps!

 

[SunshineSmile]

Thanks Emily! I'll have to ask him about Entocort.

 

[mickey]

Hope you feel better!

Sorry to hear you are not feeling well. Meds for everyone is different and affects each of us differently. When I was first diagnosed I was put on that and it did not make me feel better either. They also had me on anti-inflammatories..etc...to no avail. I did a great deal of research and convinced myself that I would beat it and get rid of it. Eight years later I am free of it. Was off meds within a few months. I realized I did not feel better overall, did feel less swollen, but did not like med side effects and realized meds were band-aids and not cures. Do not put anything in your mouth that is not a pure food...no sugar. Stay focused on a healthy diet and research...you can beat it!

 

[SunshineSmile]

Mickey, that's great! glad you are feeling better
How did you get rid of it, what do you mean? like surgery?

 

[Mountaingem]

The acid reflux/nausea problem can be from the prednisone, the flare or both. I feel like a fire-breathing dragon when I'm on pred. See if the GI will give you Prevacid, or you can try the OTC kind.

Pentasa is important to keep taking because the effect is cumulative so try to stick with it, I got the best results about three weeks after I started taking it. Hope this helps!

 

[mickey]

Mickey, that's great! glad you are feeling better
How did you get rid of it, what do you mean? like surgery?

No, no surgery. I used somewhat non-conventional methods by first figuring out my "triggers" causing the inflammation and learning ways to reduce inflammation in my body. I went off meds within 3-4 months, since I realized they were only bandaids and curing my problem, no helping me beyond reducing inflammation. I then had allergy test to determine food allergies, changed diet, learned massage methods to improve digestion and blood flow to help body heal itself, took digestive enzymes, probiotics and took up Bikram yoga. Everyone's body has different triggers, but we all have to figure out how to help our body heal itself. Has been an eye opening journey for me and I continue to learn more. My second colonoscopy (8 years after first) confirmed Crohns completely gone.

 

[SunshineSmile]

wow, amazing! Great job!

 

[monkey]

I think what you're experiencing is fairly normal... They give you IVs then send you hame with a 10th of the dose to take orally. Its awful!!
In my experience, they are unlikely to give you anything stronger than a 5asa drug-like pentasa- until they are certain of your diagnosis and sure the 5asa doesnt work for you!! Keep at it, you can get pentasa sachets, they are like fairy dust that you put on your tongue and swallow wih water... They taste rank but might help with the swallowing? Or just quarter them before you take them??
5 options to treat CD in my understanding...
5asa- steroids - immunosupressants - biologicals - surgery
Ive had CD for 10 years and only now are they prepard to start the immunosupressants- partly because of my career and the effect it may have on that, partly because all deugs have a limited use-until your body gets so used to them they stop working for you... They wont want to hand stuff out too quick! Biologicals are what you get via infusion and again, limited lifespan...
My advice to you, call your GI, keep trying pentasa, it worked for me for years!! What dose pred are you on?? Try and stick at 40mg till you see your GI-if you're not already on 40mg, phone your GI and ask to go up... Thats the highest useful oral dose...
Now i have pred munchies and its not even 6 am...
xxx

 

[SunshineSmile]

Monkey, thank you! Lots of info! love it, thank you!
I'm on 40mg of pred right now, and tapering off for about 3 months.
I haven't actually started taking the pentasa yet because I can't get it down which is one of the reasons why I need to see my GI doctor so that we can get this figured out so I can take it! but also find other treatment plans of course.
Since Pentasa may work really well, I would like to try to take it so hopefully he can get me a smaller dose maybe and i'll just have to take more of them a day, or something. Gotta get it figured out so I can get into remission!
So, i'm assuming that most people start off with pills, and then work their way to biologics depending on how well the meds are working?

By the way... what foods do you all think are the best with Crohn's Disease?? Like, snacks, meals, desserts? I want to try to eat things that are good for Crohn's, not things that will make it flare up. thanks again! <3

 

[Mountaingem]

You can definitely try to get off the flare dose of Pentasa onnce everything calms down-I've done it for years. Keep in mind everyone's different-I had Crohn's for 20 years before I had to move on to the stronger stuff.

As for foods during a flare, my favs are whey protein shakes with banana, bananas, white rice, pureed pumpkin, eggs, boiled chicken, hommade chicken noodle soup (with veggies strained out), Greek yogurt, sourdough bread, applesauce. I would give this disclaimer-try all of it in small amounts, this way if something doesn't agree it keeps the consequences to a minimum. As you can tell from my list I tolerate some dairy, you might be different. It's really important for healing that you get as much protein as possible, which is where the eggs and whey and Greek yogurt come in. I know the veggies are important but it's really harsh on the inflammed tissue; I make a hommemade veggie stock, stain out the veggies and sip the broth for the nutrients. Once you aren't flaring you should try to introduce other foods, and check out a thread here on "safe" foods for more ideas. Feel better soon!

 

[xX_LittleMissValentine_Xx]

I'm so pleased you have a diagnosis! As horrible as this disease is, I hope they are right and you can get some relief now! Although you still have a long journey with this ahead of you!

For me pentasa works really well. I take the sachets and wouldnt be able to take the tablets either! I have pretty much been on this since diagnosis.

The food thing takes a while to get sorted. At this stage of your illness, I'm guessing your inflammation is really high, so anything you eat will probably hurt as it goes through. If you feel really good when you are in remission, you might find that you can eat anything. I have had crohn's for almost four years now, and I have only just started experimenting with food and diet.

Talk to your GI about diet to see if they will give you any support (mine havn't). If they do, it is far better you are getting professional help with it so you are not cutting out too much as this could lead to deficiencies, which you are prone to anyway from inflammation stopping you absorbing nutrients. Its all about finding the best way to reduce your symptoms.
Maybe start looking into a low residue/low fibre diet. Its not too hard to follow.

And with the pred - The others are probably right, your dose is just a lot lower than what you were on before. You might find you feel slightly worse with each decrease of dose. Keep your GI informed so you can reduce your does as quickly or slowly as you need to.

Good luck with everything! x x

 

[SunshineSmile]

Thank you!
yeah I'll have to ask about the sachets instead of the pills, because those pills are not going down lol..
Today i took the prednisone, and it STAYED DOWN!! YAY i was so happy!! I think the pred is going to work out very well, it just takes time for my body to get used to it like you all said. My next GI appointment is the 14th, so I'll have lots of questions to ask him about diet and meds.
I'm upset that what i've had all along was Crohn's, but it makes so much sense now, and now I can get some treatment and start feeling better at least and help it be more easy to deal with. It stinks that this is a life long illness, but I guess the best we can all do is just take our meds and do our treatment plans and hope we stay in remission for a long time.
There needs to be more awareness for Crohn's Disease... it makes me upset that there isn't nearly enough of it.

 

[SunshineSmile]

I shouldn't have done anything today.. I thought I was getting better but I actually feel like I'm in a flare again just like I did on friday! All my symptoms and stuff are back right now and have been for the night. I think I didn't eat for too long, and then when I did eat, it was already upset at me. And my ears kinda hurt and I just started getting a sore throat (Idk if that's because my immune system is getting lower since the steroids or what) but it's awful... ughhhh, I think it's just gonna take time...
So yeah, i'm not really doing well again...
when I went to the mall i bought new jeans since mine are waaaay to big from all the weight loss i've been having, and I USED to wear a size 3.... NOW I wear a 00!! CRAZY!! >_< that's like 4 jean sizes that I lost... very crazy. but now I have pants that fit better. they were on sale too, so that was a good thing that happened for the evening. lol.. but then it went downhill from there.

I have a question about the pred...
Did you still get joint pains? and almost like a weird blood circulation fullness in your arms when you lifted them up. like my arms are very sensitive when I lift them up now, they feel like warm and tired (kinda like if your raising your hand for a long time and it gets that tired feeling) but just does it very easily now. and i kinda have a tightness in my calves after I sit for a little bit.

 

[archie]

Hi sunshine ru drinking enough water some of those signs sound lime fluid retention, my advice would be to walk a lot every day, limit salt in ur diet and drink loads of water to prevent this side affect of pred. I also struggled at first with the size of the pentasa but eventually learnt the knack by again drinking loads of water with them. Don't split them as it ruins there protective coating which is required to dissolve in small intestine and therefore work in the right spot. Do try and take them it takes practice but try putting ur head back to open ur throat up more. Sorry about ur diagnosis of crohns but hopefully it's a step forward to getting treated and feeling better.

 

[Artificial]

Hi Sunshine,

Sorry to hear youre not feeling great still :-(

I'm not sure if anyone has mentioned it but you can get Pentasa granules in a sachet that are really easy to take (i'm rubbish with tablets to!).

In terms of food, my nurse said a low residue diet is quite good which basically means really low in fibre. If you google it you should get some good food ideas.

Hope you start to feel better soon

Rachel x

 

[Mountaingem]

Hi Sunshine-just try to be patient Sweetie-it takes a while to fully stop a flare once its started, my doc usually says 6 weeks! So it's probably just more of the same, not a new flare, if that's any help

I'm a jeans girl, too but I love me some leggings or jeggings when I'm on pred and flaring-they stretch when you need them to in the tummy area, and shrink to fit on their own lwhen you lose lol. Also it's important not to constrict digestion, so usually looser pants around the waist are better for me in a flare. Do you have an Old Navy near you? Their Rock Star jeggings are the best! My neighbor also rec's maternity pants-I know, scary right? They have elastic at the top but your normal size on the bottem. She brought me over some really cute maternity jeans from Target and I love them, when you wear your shirt on the outside, there's no way you can tell.

 

[SunshineSmile]

Artificial, I'm definitely going to bring that up to my doctor for my appointment on this wednesday! And i'll look up some good food ideas

Mountaingem, Yeah I think I just got excited because everyone kept saying how fast pred works, so I was thinking it would be the same for me, but I was in a REALLY awful flare, so you are 100% correct, it'll probably take some time. And for the jeans, it's funny, even though I know now that I wear a 00, I still want to keep my HUGE jeans (the size 3) just because if I'm not feeling well I know that they are good 'comfy' jeans. haha But even the new jeans I bought that are the 00, are actually still lose on me, and have some stretch in them, so I like that I love old navy! I must go get some of those jeggings!! Sounds fantastic when in a flare! It's always good to have those 'flare clothes' and 'non-flare clothes' lol. Thank you so much!

 

[xX_LittleMissValentine_Xx]

Yeah, I wear trackies when I'm not planning to leave the house! Nice and comfy
When I had my first flare before I got diagnosed I lost so much weight too, but I didn't buy any more clothes, I just looked tiny in my suddenly massive ones!
I soon put it back on when the pred got going so don't through out those old ones yet!

 

[SunshineSmile]

Yeah, I kept all my old clothes just because I know they are big and I love big comfy clothes especially when I'm not feeling well.
I'm up again tonight.. i think it may be another long night up.. cramping is really bad again ughh

 

[mickey]

Try some hot (or warm) chamomile tea or tulsi tea, when you get cramps. It may help calm your stomach. Warmth will keep the stomach sinews warm and relaxed. Belly rubs too! Feel better soon!

 

[Mountaingem]

Also, a heating pad works good, too.