New to the forum

[Shirleyb]

Hi, I am 63 years old and was diagnosed with crohns in 2008. Since then I have rarely felt well. I have been prescribed large doses of prednisolone which worked at first but do not seem to have the same effect now. I tried Pentasa which did not work at all , azathioprine which made me vomit non stop and am now on Mercaptopurine. I seem to go a few weeks and not feel too bad but then suddenly I seem to be back to square one, totally worn out, feel rather dizzy and spaced out and just cannot be bothered with anything in fact I am becoming very depressed with how I feel, this has just taken over my life. Also now, I don't know if anyone else has experienced this, but my tongue is very coated and sometimes it is as though my mouth is burning. Anyway, I would love to hear from others as it is easy to feel very alone with this problem and I seem to get nowhere with doctors and specialists.

 

[ameslouise]

Hi Shirley and welcome!

It can a long time to hit on the med or med combo that will work for you. Sorry to hear you haven't found your cocktail yet!

The meds can cause that spacey feeling. It's also natural to get depressed after being/feeling so sick for so long.

You have come to the right place for support and advice. I would have been lost without finding this forum. The great people on here have really added to my ability to get thru the past year and my recent surgery with strength and grace.

- amy

 

[Astra]

Hi Shirley
and welcome

I'm sorry you're feeling so blue, hope this forum and all who sail in it can help you.
I can't advise you on the burning tongue, maybe it's the meds? But I found this dental site for you, check it out, lots of info on people suffering from 'burning mouth syndrome' and they talk of all the reasons for it, maybe you'll find your answer there.
good luck and lotsa luv
Joan xxxx

http://www.medhelp.org/posts/Dental-Health/Burning-Sensation-Sensitive-Tongue/show/653

 

[xJillx]

Hi Shirley and welcome! I am sorry you haven't found much relief since being diagnosed. As Amy said, it can take time to figure out what meds work best. I am still trying to figure that out myself. And, actually, I too suffer from issues with my tongue. It can feel swollen and/or feel like I burnt it on eating something hot. My doctors were stumped, so I visited an ears, eyes, and throat specialists, but I didn't get much answers there either. I know it can be very uncomfortable. But, luckily, I don't have any tongue or mouth sores (*knock wood*).

How long have you been taking Mercaptopurine? I know it can take several months to take full effect. I hope will start kicking in soon, so you can start to feel better. Please keep us posted!

 

[dreamintwilight]

Hi Shirley!

Sorry to hear you aren't able to find your perfect drug combo yet. It took me a little while to figure mine out. I'm on all the big guns--Humira and Imuran-- and at the max dosage for Humira.

Make sure you are letting your doc know how you are feeling. I know sometimes it's easy to feel like we are inconveniencing the doctors by reporting every little symptom, but it helps them find the right meds for you more quickly, I find.

Maybe the 6MP is just not the one for you. Though, i agree with Jill, sometimes it can take a while to kick in fully. If not, there are the biologics, which have worked for many people.

With the burning mouth, I am not too sure, as I have not had anything like that personally. The first thing that came to mind though was possibly thrush. Maybe look into the symptoms and see if any of it sounds familiar.

 

[Shirleyb]

Thanks

Just a quick message to thank all those who have replied to "my story". It is very comforting to know there are others out there with similar problems. I have felt very alone with this and nearly driven myself mad searching the net for answers. Back on 6 weeks course of prednisolone at the moment plus the 6MP but still feeling rough!!! All this has really knocked my confidence and I struggle to go out of the house sometimes as because of the dizzy, spacey feeling I am always afraid I may faint (embarrassing). Anyway, thanks again for the positive comments.

 

[Nancy Lee]

Hi Shirley and welcome to the forum!
Hopefully this round of Prednisone will help to get you straightened out.
I would talk to your doctor about the dizzy spacey feeling you are having though.
Also having a serious chronic illness can cause depression,
perhaps your doctor can give you something to help with that as well.

I have had the mouth sore on and off and my doctor
prescribed a mouth rinse to use..it really helps.

Make yourself at home here...
All the best~Nancy

 

[Crohn's 35]

Hi Shirley, welcome :bigwave: I know you are going through a rough time and I am one who hates drugs, because I have had this disease long before my diagnosis about 35 years, and I was asked by my husband to try a mild Antidepressant Pristiq, it is new and no side effects for me, you still have to think positive (yeah hate that word too). Prednisone is not good to be taken long term or many different times. It is a bone robber and I am really hoping being your age group you are taking a good amount of Calcium and vitamin D3. Most doctors know that pred is an evil drug.

Have you given some thought to the biologics? There is side effects to all meds, but Pred in my opinion (and many others here) agree if outweights the side effects that are rare in biologics. Hope you get relief soon, we are here for ya! ((hugs))

 

[Jer's Girl]

Hi Shirley! A lot of us know how you feel. Sometimes it is like your life is on hold with this disease. I hope you get your meds figured out soon. This forum is a great place to come for sympathy, information, and people who truly do understand exactly what you are going through because we have been there too. Welcome!