Newly diagnosed/Aza side effects....

[tillylala]

Hi, I was hoping for a little bit reassurance and advice, this is all new to me.
A brief history....
Ten year ago I had perianal abscess, 3 operations, and never bothered again. At no point was the term Crohns mentioned, I was 6 month pregnant when the trouble began.
2012 diagnosed with UC after a spell of urgent BM after I ate, I had a flexi sygmoidoscopy eventually, by the time the appointment came thru for that my symptoms had more or less gone.
May 2013, 3 weeks of severe flare up, GP seemed unresponsive to my plight, eventually they prescribed me Asacol, I had lost 27lbs in these 3 weeks.
Got so low ended up admitted to hospital thru A&E. Discharged after 6 days.
2 days later re admitted, unrecordable BP, body in septic shock,ended up intensive care with septicaemia, and streptococcus strain.
So after another stint in hospital I was discharged with azathioprine.
4 weeks later, I still don't feel much better, I am wondering if I will feel back to "normal" again??

Slightly blotchy skin, very low energy levels, sometimes feel sickly, sometimes feel like I am gonna get sore throat/cold, tiredness and sleeping thru the day.
Due to see IBD nurse on 16th, I really want to give these meds a chance if they are gonna work!!!!

Sorry bit long winded!!!!!! (pardon the pun):ylol2:

 

[Crohn's gal since 1989]

Azathioprine can take up to 3 months to begin working. Usually the doctors prescribe a steroid like Prednisone with it to reduce inflammation during that waiting period before the Azathioprine starts working.

Hang in there! I hope you start feeling better soon! Be your own best advocate, if you are not seeing improvements, see your doctor again.

 

[valleysangel92]

Welcome to the forum .

You might want to ask if you can have a course of something quicker acting to help you out with your symptoms and start you on the way to remission while you are waiting for your medication to kick in.

If you dont start feeling any better, you can go back to your doctors and keep on at them, sometimes doctors need pushing to act. If your doctor wont help you then it is your right to ask for a second opinion from someone that will..

For the nausea, you might want to try some peppermint or ginger, many people find this helps to settle their stomach. Its pretty common for IBD sufferers to have a lot of fatigue, this should start to get better when your condition gets more under control.

I hope this helps you a little, feel free to ask as many questions as you like, there will always be someone around who will try to help you and we will all support you as much as we can with this. You aren't alone .

 

[tillylala]

Thanks ladies, I had Pred tapered course, which ended last Tuesday, maybe I am being hasty.....
When you have been relatively well in the past and this just hit me like a bus, especially the intensive care stint, I cant wait to feel "normal" again..... I really hope I can feel "normal"!!!!!!!
Altho the docs are the experts, sometimes its nice for someone who has experienced similar to say its gonna be OK....

xx

 

[valleysangel92]

Sometimes the side effects of the steroids take a little while to stop too, so maybe this is contributing to the way your feeling at the moment.
Its natural to want to see/feel a change, its the only way we have of knowing the medication is doing something at times, and it can feel frustrating if it doesnt feel like it did.
There is definitely hope that you will get back to normal, its just a case of finding the right treatment for you .

 

[Crohn's gal since 1989]

Thanks ladies, I had Pred tapered course, which ended last Tuesday, maybe I am being hasty.....
When you have been relatively well in the past and this just hit me like a bus, especially the intensive care stint, I cant wait to feel "normal" again..... I really hope I can feel "normal"!!!!!!!
Altho the docs are the experts, sometimes its nice for someone who has experienced similar to say its gonna be OK....

xx

That's for sure, until you've experienced Crohn's first hand, you never truly understand what we suffer through. Doctors are experts, but they are knowledge/book experts. It's great to know you are not alone out there, and while everyone knows someone who has Crohn's disease, usually they have different symptoms. It this great network of CD & UC sufferers, there is always someone who "knows exactly how you're feeling!" :hug:

 

[Beach]

Good luck Tillylala! Hope you feel normal again soon.

With your mention of experiencing blotchy skin, and with summer in full swing remember this writing on Dr. Hunter's sight about azathioprine and sun exposure.

"Azathioprine and Photosensitivity"

http://crohns.org.uk/professor_hunter/blog/azathioprine-and-photosensitivity

 

[tillylala]

Hi, I did read this article, I stay out the sun even in UK, I wear very high sunscreen too if I ever venture out. I have always done that tho.

Seeing GP today because my blotches have turned into more of a "hard lump" they are all on my legs too which I have read is a symptom of Crohns? One on my right leg especially is just a big hard lump........quite worrying??

x

 

[Beach]

tillylala - Hopfully the GP will have an idea of what the lumps are and what treatments can be helpful. Good luck!

I have MC so different from Crohns. From my experience, often I would develop red lumps on my chest. I remember pointing them out to doctors in the past. In my case none seemed overly concerned about the bumps, and would say it was a rash.

I've been felling better of late to my stomach. With that the red lumps have gone away. So it does seem for my condition, the GI issues and the red bumps are connected.

 

[Beach]

tillylala, Hope your GP was able to help out with IDing the leg bumps. If not, last night I was reading through Dr. Hunter's book on IBD conditions again. Saw he has a mention about leg bumps from IBD. It reminded me of your thread.

From his writing:

"Skin Lesions: When IBD is very active, tender purplish red nodules may appear on the kind particularly on the shins. These are called erythema nodosum and usually disappear when the IBD is brought under control. A less common skin problem is pyoderma gangrenosum. Pus-filled blisters appear on the skin often of the legs and they break down to form a deep red ulcer, which can be very difficult to heal...."

& additionally

"...A more typical lesion which is usually a sign of active CD is erythema nodosum. This produces painful raised dark red lesions, typically on the legs, especially the shins, and is commoner in relatively young patients...."

 

[houston]

Hi, I was hoping for a little bit reassurance and advice, this is all new to me.
A brief history....
Ten year ago I had perianal abscess, 3 operations, and never bothered again. At no point was the term Crohns mentioned, I was 6 month pregnant when the trouble began.
2012 diagnosed with UC after a spell of urgent BM after I ate, I had a flexi sygmoidoscopy eventually, by the time the appointment came thru for that my symptoms had more or less gone.
May 2013, 3 weeks of severe flare up, GP seemed unresponsive to my plight, eventually they prescribed me Asacol, I had lost 27lbs in these 3 weeks.
Got so low ended up admitted to hospital thru A&E. Discharged after 6 days.
2 days later re admitted, unrecordable BP, body in septic shock,ended up intensive care with septicaemia, and streptococcus strain.
So after another stint in hospital I was discharged with azathioprine.
4 weeks later, I still don't feel much better, I am wondering if I will feel back to "normal" again??

Slightly blotchy skin, very low energy levels, sometimes feel sickly, sometimes feel like I am gonna get sore throat/cold, tiredness and sleeping thru the day.
Due to see IBD nurse on 16th, I really want to give these meds a chance if they are gonna work!!!!

Sorry bit long winded!!!!!! (pardon the pun):ylol2:

Hi I been on aza since may and got out of hospital last night from a flare up. Im on 100mg maybe they need to up my dose but my consultant is on holiday (typical for me) The Aza takes a while to kick in so Ive been told. The hospital have gave me budesonide if I flare up again feeling not good Hope you feel better soon
Sandra

 

[tillylala]

Hi, thanks for your posts.
My IBD nurse diagnosed erythema nodosum, judging by some things I have read and seen I have a mild case. I have been given another 6 week course of Prednisolone tapering from 30mg. I started these Friday and I feel like a different person already!!!
So at the mo got 75mg Aza, and the Pred.
When I was reading about the EN it said it usually starts with flu type symptoms and feeling unwell before the lumps appear. So this maybe why I felt grotty too. just all new feelings and symptoms to me, just taking one day at a time.

Thanks again for your posts and advice.
T x