Fosamax and osteoporosis help please!

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Heathcroft

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I was diagnoised 15 moths ago with Crohn's and have had it probably for years with childhood surgery meaning I grew up with a short small bowel.

After 6 months on prednisone I went on azathioprine (Imuran) and I was just about coping OK with it, when I was referred for a bone density scan.

Not by my specalist (who said last year it wasn't necessary). NO! But by my chiropractor who seemed worried about my back.

It turns out that I have osteoporosis of both hips and spine and I sent the results to my GI guy who put me on Fosamax (a weekly dose). I had the first one today and had violent diarreah this afternoon and cramps.

I am hoping it will be a temporary effect but wanted to ask if anyone either has similar experience, what to expect, or knows about any alternatives that can be taken by injection to avoid this?

Thanks a lot!
 
Hello!

I was put on Fosamax and calcium as well as Iron and Vitamin C... with that said...I don't think that I received any side effects from the Fosamax. Of course I was flaring so I'm not sure whether it caused diarrhea or not ( you know?)
 
haven't been diagnosed with osteo, but i have been getting pains and soreness in all my joints, i have developed a rash under my arm and now it is starting to pain me. doctor said it was the flu, because of aches and pains, i'm taking 2.5mg of pred at moment, i've been reducing down over the last few weeks. Has anyone experienced these symptoms, a friend of mine said that i may have shingles.I dont feel great ,and to top it all off i have diarrhoea all morning. HELP!!!!
 
yep, i have been on fosamax, but didnt have the effects you did heathcroft, although i did have a lot of upper gastic discomfort afterwards, which is a known side effect. i have heard that there are alternative meds, and in particular one by injection. i'll try & find out the name and get back to you.

dingbat.
 
Welllll... skin rashes are common with Crohn's Disease... also.... soreness in the joints and bone pains are common in Crohn's Disease. It basically stems from the fact that there is so much inflammation in our bodies that it inflames the joint tissues and even skin or eye tissues. The reason we have the inflammation is because our immune system thinks there is an outside invader (bacteria) in our body, so its trying to attack it... when in reality it is attacking itself. The body's natural reaction to this internal warring is inflammation.

I'm in no way saying your doc is wrong... obviously I'm just a common person, but those symptoms are common of Crohn's Disease... maybe your disease is progressing to a more active state... 2.5 mg of Pred isn't very much... are you tapering currently? Maybe your body is reacting negatively to the tapering.

***all just speculation
 
Katiesue, you took the words right out of my mouth. I suffered flu like symptoms on my last pred withdrawal. Sounds very reminiscent of that going on to me.
 
i was on Fosamax also,because of my bones,thanks to pred.for that.
There is an infusion thta you can get called ACLASTA which I just got on Wed.
This drug last for one year.Hard to believe. I don't really notice a difference as of yet.
To soon to tell.If you need more info,just let me know cause he gave me a phamlet on this drug.

I am surprised that I have not seen any threads on this drug?

TAMMY
 
katiesue,

thanks for your advice, i have been tapering down over the last few weeks, i,ve been on 5 mg for 6 weeks, and i will be on 2.5mg for another 4 weeks. I'm in so much pain today, i feel like crying. My neck is really stiff since yesterday and the pain is really bad. I feel like i have a really bad flu, my arms are sore, i had diarrhoea this morning and i vomited as well.

I was sure my crohns was in remission, my symptoms had calmed down but now this. HELP !!!!
 
I would talk to your GI... it sounds like your body isn't reacting well to the taper. They may send you back up a couple mgs... I had the same symptoms and after I was finally off of the Pred, they found out that my body wasn't responding well to the Pred and imuran and they put me on Remicade.

Also... if you think about it... its much easier to drop your body down from 20 to 15 than it is from 5 to 2.5 because that is a 50% drop.... versus the other is only a 25% drop. But really... I'd talk to your GI ASAP.
 
Yeah, I agree with katiesue. Sounds like classic pred withdrawal. i went thru the exact same thing, even before I finished taking my last pred. I still had 2 days to go... I'd tapered down from 40 mg slowly, dropping 2.5 mg a week. I hated taking the 1/2 pills, they tasted horrible. and my pred withdrawal symptoms were worse this last time than they were the time before. At least on the previous one I went 4 weeks after coming off the pred before all of my symptoms came flooding back. Like, this time, as soon as I went below 10 mg I started getting severe flu like symptoms, and at 2.5 mg my IBD symptoms came flooding back. While on pred, I always feel great, but I don't think the pred is really able to stop the IBD..., I think it just stops the immune system from doing its thing. Now, that's just my gut reaction, I totally have nothing more than my personal 'feeling' to back it up. I just think that sometimes the 'shock' to your system of going on pred causes the IBD to go to sleep for a while.. but it isn't a guarrantee. Also think that once 'used' to the shock, repeated attempts to get the same 'shock' reaction rarely work. I think maybe the docs suspect that too, but they got to try it anyway. Like I said, I'm no doctor, just guessing at this. I think it's sort of like... well, in some cases, this shock tactic derails the old IBD train... could take lots of time for it to get back on track. Whereas, once used, the next time, it just blocks the track. Once the pred is removed, or reduced, it doesn't take long for the IBD train to get back up to speed. That's a very poor analogy, and it may be nothing more than my uneducated take on the issue, but it's what I personally think happens. Just a shame that pred is too potent to stay on long term. As it is, I think for the majority (again, just an opinion) of us, pred simply provides a little vacation from IBD, at best a short remission. It doesn't seem to make IBD go away for any extended periods of time. I could be totally wrong.. (like they say about opinions and rectums, everybody has one)
 
thanks katiesue and kev,

i'll give the my GI a ring tomorrow. hopefully the pains will start to ease. I'm having an early night tonight, i'll be bringing the hot water botle with me, i have to be up at 7 for work tomorrow. Don't know how i'll get out of bed in the morning with the pains

Thanks for your help. I'll let you know how i get on with GI.
 
I feel for you minnie winnie, I know what you're going through. The joint pain has had me climbing the walls on numerous occasions.

I wish you the best of luck with it all.
 
Thanks shane, i'm waiting on my GI to ring me today, still feel terrible, and i've been getting pains in my stomach all morning.

i'll keep you posted.
 
hi katiesue, kev and shane,

my gi rang me and has decided to up the steroids to 7.5mg for 4 weeks, 5 mg for 4 weeks and then he wants to see me. i dont know if he intends to keep me on a low maintenance dose i'll have to wait and see. the aches and pains aren't too bad today, but i'm feeling very nauseous and i've have stomach cramps and diarrhoea and i'm just not feeling too good.

thanks for the advice lads. much appreciated.
 
Hi minnie winnie,

With me, my gi didn't want me to stay on the steroids. Tried azathioprine first, that just made me ill. I'm now on methotrexate and infliximab and optimistic in this therapy.

I hope the increase in dosage helps you to feel a bit better, good luck.
 
I think all GI's are extremely reluctant to keep us on steroids for protracted periods. And with good reason. Whenever I was tapering, if I had a flare-up bad enuff, my GI and I had a plan. Would up my dosage to the last known good spot, stay there till stabilized, then resume the taper even slower. Like, if I was going down in 5 mg decrements BEFORE a flare, after getting stable and staying stable for a week, would start the next taper by either 5 mg per 2 wks, or 2.5 mg a week. Sometimes it worked, sometimes had to repeat the process
Don't think there were ever any hard/fast studies to backup that method, just trial and error from past experiences with other patients. But, whatever works
 
Shane,

I tried taking imuran, but i couldn't tolerate the drug, muscle spasms and vomiting..i increase the steroid yesterday to 7.5 mg and i feel a bit better , but i keep getting nauseous especially after eating a meal. hopefully the steroids will start to work, if not i'll just have to wait and see what the GI has to say in 8 weeks.

thanks a mil for your good wishes.
 
The doctors I transcribe for all prescribe Calcium 1,500 mg a day AND Vitamin D3 1,000 mg a day. The two work together.
 
I know you can take Magnesium to bowel tolerance, which would be tricky with Crohn's. I have not heard of it bothering the guts, but maybe with Crohn's it is different.

Dan Bergman
 
I wonder if it's a principal ingredient of "Milk of Magnesia", (or even if that is still on the market). OTC product that was supposed to deal with upset stomach, and if memory serves, diarrhea. course, too much could lead to just the opposite, the big 'C'. Before all this IBD nonsense, I really had a thing against taking anything, even just a lowly aspirin. now, with IBD, everything one ingests has to be taken into consideration. how much, how often, how does it react/relate to other drugs, does it mask significant symptoms, aggravate any.
when you get right down to it, having this damned disease is a pain in the ass!
 

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