Advice please.....

[galmaier]

advice please.....

hiya

this is my first time here, so please bare with me....)
guys - i need your advice please.

i was diagnosed (finally) 18 months ago after the stupid gastroentrologist decided that I have IBS... long story short : I was on steroids, but they really aggravated my depression, so I was on azathioprine which caused pancreatitis and drug induced lupus (nearly died). now I have the pleasure of being on methotrexate.
i was on 25mg injections for the last 4 months, and now the gastroentrologist (a new one) reduced it to 10mg. everything that was acheived by the higher dose went away, and my pain is back, and the arthritis (lower back and knees) got so bad that i can bearly walk on some days. My GP decided to take the dose up again, but i am not a happy bunny:-(
The MTX gets me soooooo sick. i vomit, have headaches, sleep most of the time. I am not a human for 4 days after. I hate it! I don't know what to do anymore. I don't want to keep going on it, and it is not a drug to take at such doses for too long, but I can't take steroids and i need something that will also sort the arthritis.
the new gastroentrologist is very impatient and not much of a consulting type... I don't know what to do, I get so down:-(

please - any advice?

 

[tiloah]

Have you considered getting a second opinion from a different GI (one who is the "consulting type")? I'm sorry the metho is making you feel so awful. Has your GI ever mentioned biologics? (Like Humira, Remicade) or seeing if they can work with your depression with drugs or counseling.

I hope you're able to find something that works for you that doesn't make you feel so awful. Don't give up though, there are still things to try. Welcome to the forum.

 

[galmaier]

This GI was the second opinion after the first one dismissed me with IBS....
He never mentioned biogical treatment as an option. I am not sure if this is available at the NHS (national health system). He is a good GI, but has too many patients to see, and not enough time....

 

[Grant]

I had Crohns back in 1983, but it was dismissed as IBS. 2 yrs of diarrohea, bloody motions, night sweats & cramps.
Finally diagnosed as Crohns, before that I had convinced myself I had cancer. One Dr in particular I hope had his knuckles wrapped because he more or less accused me of imagining it. At that point I did convince myself I was imagining it.
Grrrrrr

 

[galmaier]

i know how you feel. I kept complaining about right sided pain. the GI decided to do sigmoidoscopy and not full colonoscopy saying that the sigmoid colon represents the whole colon.... when this came clear, he said i have IBS, and the right side pain is because of accumulation of stool!!!. I knew this can't be right and asked for a second opinion in a different hospital. They did a full colonoscopy and found the right iliac inflammed.

 

[ameslouise]

Hi Galmaier and welcome!

sounds like you got yourself a coupla quacks there. Is it possible for you to find yet a new GI?? Biologics are available thru NHS, as there are some folks here on them. Not sure how difficult it is to get approved, though. Check out the Treatments section on Remicade and Humira.

I was on Metho for four months and it was dreadful. I felt just awful, sleepy, fuzzyheaded, dizzy... I feel your pain!

Good luck - Ihope you find something that works for you soon!

- Amy

 

[galmaier]

thanks Amy for you kind words!
I don't know why it took me so long to join you guys:-( for the last 18 months I felt so alone.

my new GI is good, just VERY busy, and not much of a talking type. it is very hard to consult him about medications, and you feel like another number. I don't want to go back to the initial hospital. I am seeing my GP next week and will ask her about the chances of getting biologics.
i feel so bad and was off work for 2 months now, but my leave ends on Wednesday:-( not sure how i am going to cope at work - i am so tired, but i am afraid to lose my job if i keep taking sick leave. been off a lot for the last 18 months.

thanks a million for your response!

Galx

 

[Dexky]

Hi Gal, welcome!! I saw you in Aura's metho thread! I don't have any advice or experience with the metho! Just wanted to say Hi!!

 

[galmaier]

Hi Mark - thanks!!

Gal