Another positive meeting with my GI

[bushydougie]

I saw my GI today and as the title suggests it went really well again.
The hospital where I attend has 2 consultants that you can see. I have no idea how they decide which one you go to but last time I saw one and this time I saw the main guy again.
He did most of the talking for the appointment which was great as it showed he had a plan of action!! Although my last two tests (CT and small bowel) were negative my blood test results have shown slightly elevated levels in anumber of areas. He still believes it is CD but that they have not yet found it.
He is putting me on Entocort (yet again Cat I seem to copy you :ylol: ) for at least the next 6 weeks and then I'll have a follow up meeting with him. If it's working then he will continue with me on this and if not then he said he will put me on Azathioprine and pred until the Aza starts to work.
I am so glad that he has a plan for me. I was so worried again about the appointment and what would be said about my undiagnosed self!! The past 3 weeks without pred have been a real struggle but now I can be positive and know that the medication should help me through
On another note I asked him if he thought I should get a flu shot and he said he thought it would be a good idea especially as I work with children.
Thanks for reading. Any advice about Entocort then please let me know

Sam

 

[Jerman]

Hey Sam, I have no advice or knowledge about endocort, just wanted to say I am glad things are looking like they are moving in a positive direction for you. Take good care & good luck.

 

[Cat-a-Tonic]

We're twins! Ha ha, welcome to the Entocort club. As you know, I've experienced a few side effects on it. Dizziness, which was sporadic but only lasted about a week, and more notably, chronic headaches. Hopefully you won't experience any side effects, but if you do, let your doctor know right away - my GI just put me on Amitriptyline for the headaches. Oh, and keep in mind that Entocort takes longer than pred to start kicking in - I counted the days, and by day 9 I started to feel significantly better, although my appetite started improving around day 3. Then around day 15ish I had some d, nausea, pain, and a little blood on the TP, but that seems to have cleared up now and I'm feeling much better again. So don't get discouraged if you have a bad day or two while on Entocort.

And you're copying me again (ha ha) by getting the flu shot - I'm getting mine this Friday. I don't work with children but I want to make sure I'm protected anyway. The last thing any of us needs is to get sick on top of already being sick!

 

[bushydougie]

Thanks Jerman and Cat. I knew you'd both be please
Might have to change my name to Copy-Cat!!
My GI said that I should start to feel the benefits within a week but know from reading on here that it might take longer. I'm more than willing to give it a go!!
I've got my flu shot in two weeks they're also going to give me a pneumonia (?) one too. That's what I said to the GI. I don't want to be any sicker!

 

[Cat-a-Tonic]

I should get a pneumonia shot as well, good idea. Now I'm copying you!

When do you start Entocort? Not sure if they told you this, but you should take it first thing in the morning. It's not as potent as pred, but it can still cause some insomnia, so it's best to take it early in the morning. They told me to take it with food, but I cannot stomach solid food first thing in the morning, so I drink 1/2 an Ensure and take it with that.

Hopefully you don't have to pay much for your Entocort. I'm not sure how it works over there, but here, if you don't have insurance or if your insurance won't cover it, Entocort is over $1000 per month. My doctor had to appeal to my insurance and then they decided to cover most of it. So I pay $75 a month for it, which is still a bit pricey but obviously better than $1000.

 

[bushydougie]

Ha! That makes a refeshing change!!
I've handed my prescription into my GP and will be able to pick it up after work on Friday so I guess I'll start taking it on Saturday. Fingers crossed!!
We just have to pay a prescription charge every time we pick up some new medication. I think its about £7.50 not sure what that would be in dollars? I can't believe it is so expensive. I'll have enough tablets for 6 weeks.
Are you taking calcium and D3? My GI told me to continue taking them

 

[2thFairy]

Wonderful, Sam!! Hooray!!

 

[Cat-a-Tonic]

Yes, I take 4000 IU of D3 and I do the chewable calcium (don't remember offhand how many mg those are).

I was curious so I googled a currency converter. 7.50 British pounds converts to about $12 US. The $75 I pay for Entocort translates to about 47 British pounds (I don't know how to type the symbol for pounds on this computer!). So you're still paying a lot less than I am for Entocort! For generic prescriptions, I usually pay $10 with my insurance. But there's no generic version of Entocort, which is why it costs so much more.

Good luck on Saturday when you start the Entocort! Let me know how it goes.

 

[bushydougie]

Yet again I am thankful for the NHS!!!
I shall certainly keep you updated and hope that everything goes well.

2thfairy - thanks for your encouragement!!

 

[DustyKat]

YAY SAM!!! I'm am so happy to read that everything went well with your appointment and the doc is taking action. What a relief that must be for you! Keeping my fingers and toes crossed that all goes well.

:mademyday:

Dusty.

 

[StarGirrrrl]

Ha! That makes a refeshing change!!
I've handed my prescription into my GP and will be able to pick it up after work on Friday so I guess I'll start taking it on Saturday. Fingers crossed!!
We just have to pay a prescription charge every time we pick up some new medication. I think its about £7.50 not sure what that would be in dollars? I can't believe it is so expensive. I'll have enough tablets for 6 weeks.
Are you taking calcium and D3? My GI told me to continue taking them

So pleased things are going well for you. I'm in the UK and buy a Prescription Pre Payment Certificate. Ideal if you need lots of meds. Available as 3& 12 months, for the latter I pay £10.40 for 10 months by Direct Debit. I believe for the 12 month you'd need 14 items to break even, but sometimes it's worth having anyway if say you needed a course of antibiotics you wouldn't have to find the money.

Having lived in the US, where they once wanted $50 ($32 odd) for a small bottle of medicine, £7.50 is cheeeeap!

 

[rottengut91]

Hey Bushy
Good Luck with the med. hope it brings relief.

 

[Silvermoon]

YAY SAM!!! I'm am so happy to read that everything went well with your appointment and the doc is taking action. What a relief that must be for you! Keeping my fingers and toes crossed that all goes well.

:mademyday:

Dusty.

^^^Ditto!

 

[bushydougie]

Thanks Dusty, Stargirrrl, Rottengut and Silver.
I'm looking forward to starting the Entocort on Saturday!
Have been in a really good mood today and have had lots of fun at work. Suffering now as I'm shattered but it's worth it

 

[bushydougie]

Tried to pick up my medication tonight so that I can start taking it tomorrow. Tried 6 chemists but none of them have it Finally the 7th have some tablets in so I'm going to head down there in a bit to get them. Just what I need on a Friday night when I just want to sleep... Hey ho at least I can start it tomorrow now

 

[DustyKat]

Good luck and let us know how it goes!

:goodluck::goodluck:

Thinking about you, :hug:
Dusty

 

[Cat-a-Tonic]

Good luck, Sam! Hopefully it works really well and you don't get any side effects. Let us know how it goes!

 

[bushydougie]

Got to the next chemist and they didn't have it. It was the wrong tablets... Argh! So had to drive to the other side of the city to get them. Finally have them now after an hours drive!! D day tomorrow

 

[Cat-a-Tonic]

Oh no, what an aggravation that you had to drive all that way! I guess I was lucky that my usual pharmacy had them available. They must not be commonly prescribed if you had to check with that many places and drive that far just to get them. Hopefully they work well so your long drive wasn't a waste!

Well, good luck tomorrow! I think I said this before, but it took awhile for me to feel a difference. I noticed my appetite was improving around the third day or so, but it took about 9 days for me to feel a vast improvement in symptoms. I've heard others say it took about 2 weeks for it to fully kick in for them. Hopefully it kicks in quickly for you!

 

[Entchen]

Okay, new meds in hand, ready to start tomorrow morning --- fingers crossed for you!!!! Maybe this will be the first day of a new bend in the road for you, one that brings improvement in your symptoms.

 

[bushydougie]

Luckily I have a fantastic boyfriend who drove me around last night to get them! Some of the pharmacists said that they don't stock them as they're not popular but could order them for Monday. I wanted to take them asap as I know they can take a week or so to start working and I want them to start working quickly
Took my first one this morning. Feeling really positive so that's a start

 

[Cat-a-Tonic]

Sam, are you just taking one Entocort pill? What dosage are you on? I take 3 pills a day, they are 3 mg apiece so 9 mg total. Glad to hear you are feeling positive!

 

[bushydougie]

No. Sorry my mistake. I'm taking 3 the same as you.
Yeah. Looking forward to this time next week and hopefully feeling better. How are you doing?

 

[Astra]

Hiya Sam

bit late as usual, been living it up - birthday wise!!
so best of luck with your new meds, fingers crossed that they work!
love lots
xxxxx

 

[bushydougie]

Thanks Kelly and Joan. Am still feeling really positive so I guess that alone will help me. Plus I've only got 4 more work days til half term

 

[Cat-a-Tonic]

Happy birthday Joan! Sam, I'm doing well and I hope you are too. What's half term, do you get a break from work? If so, I hope you are able to rest and feel well during that time.

 

[bushydougie]

Sorry Cat I forget that certain terms are not known world wide
Half term is a weeks holiday in the middle of a school term so yes I will be able to rest. I'm also hoping that the Entocort will have started kicking in then so that I'll be able to enjoy doing a few things too

 

[Cat-a-Tonic]

That was what I would have guessed, but wasn't sure. I don't think schools here get a break during this time of year, at least I don't remember getting a week off during the fall when I was in school. Glad to hear you get a little break from work, and I do hope the Entocort has kicked in by that time so you can enjoy your week off!

 

[Cat-a-Tonic]

How are you doing today, Sam? Have you noticed the Entocort having any effect yet? It's still working pretty well for me. I hope you are doing well. Thinking of you!

 

[bushydougie]

Manimation - yes it is a hazard! We have 104 kids come through our nursery in a week so we have antibacterial gel stockpiled! My assistant once had a child tell her he had something for her. She held out his hand and he was about to wipe a bogie on her. Eugh!!

Cat - I've had a bad few days. Worked a 12 hour day on Tuesday which almost killed me! Then was washed out on Wednesday and suffered awful nausea on Thursday. Felt better today. Not sure if that's the tablets, because I slept well or because it's the holidays now!! Did you get any nausea with th endocot?

 

[Cat-a-Tonic]

Sam, I'm sorry to hear you're not doing well. But glad to hear you're a bit better today. I haven't experienced any nausea from Entocort, but according to my information sheet that came with the pills, nausea is a fairly common side effect. As I'm sure you know, I experienced chronic headaches the first few weeks I was on Entocort (another common side effect), but thankfully the headaches have gone away now that I'm on Amitriptyline too.

Are you taking your Entocort pills with food? My instructions say not to take it on an empty stomach or nausea is more likely. I always drink an Ensure just before I take my Entocort, as I'm supposed to take the pills first thing in the morning but I cannot stomach solid foods first thing in the morning.

If your nausea continues, definitely talk to your doctor right away. I waited 2 weeks with the headaches before I couldn't stand it any longer, and my doctor wrote me a prescription for Amitriptyline the same day I called him - now I wish I'd called him sooner! With regards to anti-nausea medication, I do have a prescription for Zofran, and it works really well for me (I don't take it every day, just whenever I feel I need it). I have experienced zero side effects from it and it stops my nausea in about 30 minutes. There are several prescription anti-nausea meds, and some of them have awful side effects. I took one during my first flare called Compazine - it made me very dizzy, and it made me feel like I couldn't breathe. Horrible side effects! And the worst part was, it didn't even quell my nausea. So make sure to ask about side effects if your doctor does prescribe something for the nausea. Good luck, let me know how it goes!

 

[bushydougie]

I was eating before taking the Entocort but I noticed that my tablets say that I should take it half an hour to an hour before food so I tried that for the first time on Thursday so maybe that's why I had nausea. Not had it today though so maybe it was just a blip. Hope so
Glad you're still doing well

 

[Jerman]

Hey Sam, guess it must take a while after being out of work to build back stamina huh? this is one of my concerns in going back hope I can tough it out as admirably as you have.

 

[bushydougie]

Thanks Jerry. Though not sure I've been very admirable. Just gone to work and slept mostly It is very tiring going back to work after being off for 8 months. I am so glad that I've only gone back 4 days a week. That sure helps! But it's also great to be able to work again. I suppose it gives me more purpose and I love working with children which helps

 

[Astra]

Hiya Sam

have a great half terms rest! Lucky you! I have to go in for 3 days next week, holiday club!
You're right about the Entocort, unlike Pred, you have to take it on an empty stomach or half an hour before food.
If the nausea continues, ask for Cyclizine, this is what I was given in hospital.
Hope you're ok
xxx

 

[bushydougie]

Thanks Joan. Only read the bottle after having it for 5 days. Whoops! Nausea seems to have settled now so fingers crossed.
Poor you having to work another 3 days Hope you manage to get some rest in
x