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Took myself off all meds...

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Ulcerative Colitis
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Posted 9/24/2008 3:23 PM (GMT 0)
Being sick (not UC sick) for two days and so just stopped my Rowasa and Lialda.  I am calling the NP/doc and telling them I will not take anything with mesalamine or like it again.  I feel like I have the flu but I know what it is since I had it before I took myself off Colazal and Rowasa in August.  I will have to make them listen this time.  I would rather take my chances with no medication and use Imodium or pepto when needed like I did for a year or so as long as I don't get much worse!!

Just wanted you all to know.  I will see what the doc says when I call.

I do believe he and the NP (who is great) think I am just a whining old lady sometimes - wish that was the case.

ElaineNY

Posted 9/24/2008 3:26 PM (GMT 0)
You're no whiner, Elaine, and I'm sure your doctor and NP recognize that. Hang in there!
emory
Posted 9/24/2008 3:27 PM (GMT 0)
When your medications are making you sicker than the disease they're supposed to treat, it's definitely time for a re-assessment, Elaine. I hope they are up-to-date enough to consider trying other treatments.
Posted 9/24/2008 3:36 PM (GMT 0)

Makes me extremely mad that these medications have worked quite well, stopped bleeding, cramping, D, etc. but I can't live with the side effects.  Steroids and immunsuppresants have been mentioned - I hate the idea of both - I know the side effects could be much worse for me - I have such a sensitivity to medication.  For example, I have never found a narcotic pain killer that I can tolerate, no antihistamines, very few antibiotics and I can only take 1/2 of lowest dose Xanax or I go through the wall and feel strung out.

ElaineNY

Posted 9/24/2008 3:42 PM (GMT 0)
You know, I had that same history of bad reactions to medications (including several formulations of mesalamine), but had no problems on Imuran. And it worked. You never know!
Posted 9/24/2008 3:51 PM (GMT 0)
I assume any immunosuppressant would be one of the next choices. I have a problem with them because they could make me more likely to catch viruses, etc. right? My husband had lung cancer and I don't want to expose him to anything - since his immune system is compromised. I would have to talk with his oncologist.
Also, I cannot have knee replacement while on immunosuppressants and I need surgery badly - however, surgery might have to wait as it looks now.
ElaineNY
Posted 9/24/2008 4:02 PM (GMT 0)
That is possible, but I personally never had a single infection while I was on Imuran (and for much of that time I was on prednisone, too, which ought to have made me even more immune-suppressed). And I work in public schools, so I am exposed to plenty of germs! I think the drug information about Imuran gives a distorted view of how likely the side effects really are, especially because much of the data comes from people who take it after organ transplants, when it's given in much larger doses.

I checked with my GI about a lot of stuff that "immune-suppressed" people are cautioned about (could I get shots? could I fly on a plane? could I be in the same room as someone who had shingles?) and they okayed all of it. The state of immune suppression you'd be in with a UC-level dose of Imuran is just not the same as the immune suppression people get with HIV/AIDS, or with post-transplant immune suppression. (After transplant, Imuran is usually one of a cocktail of other drugs.)

I'd had UC that was not really controlled by mesalamine-type drugs for 10 years, and I was always resistant to Imuran because it seemed so drastic. Frankly, I wish I'd chosen to take it much sooner. (Since then I've had surgery--because I had dysplasia--and that has turned out much better than I expected, too.) I kick myself for the time and experiences I lost by not bringing out the so-called "big guns" earlier.
Posted 9/24/2008 4:44 PM (GMT 0)

Thanks - certainly something to think about.  Maybe it would help me get into remission and then I could quit it at least long enough for my knee replacement.  I know the surgeon will not do the surgery while on it.

ElaineNY

Posted 9/24/2008 8:23 PM (GMT 0)
since being on immune supressors I am really careful about washing my hands before I touch my eyes, mouth area, etc. and before I eat.

This past winter my husband had 3 colds and my sister had 5 bad colds. I only had one case of the sniffles that did last 3 weeks but that is all.

I'm not some crazy handwasher or germophobe, I just really made sure to wash my hands before I did anything that involved carrying germs into my mouth and eyes. My sister and my husband are always on the go and they dont realize that the lunch they are eating on the go and they did not wash their hands is carrying all the germs they touched since they last washed their hands.
Posted 9/24/2008 8:34 PM (GMT 0)
I was on immunosuppressants for 1.5 years and never got sick. I don't think we are given the exceptionally high doses that transplant patients are given making us not as susceptible to illness.

Sue
Posted 9/24/2008 9:04 PM (GMT 0)
While technically it is true that you would be more susceptible to illness while on immunosuppresants, I don't think that is the case for most. I have been on them over a year and never been sick. In fact, I am wondering if they are also helping with my usual bout of fall allergies. As I understand, hayfever is when the immune system goes bonkers as a reaction to pollen or other allergens. Well, if my immune system doesn't work well, it doesn't become active by these allergens. Call me crazy.
Posted 9/24/2008 9:29 PM (GMT 0)
Elaine I was also on immunosuppressant medication for about three years and had no infections - I think I had one cold during that whole time, when the average American has two to three colds a year.

Also, my ortho operated on me three times while I was on Imuran. One surgery was arthroscopic, but the other two were big, open procedures. She covered me with IV Vancomycin and I had no problems at all. Perhaps you could ask the ortho if he'd rather operate on you while you're on immunosuppressants or while you're bleeding. (Actually, both of the above were true for me for all of my surgeries - I was on Imuran and still bleeding.)
Posted 9/24/2008 11:08 PM (GMT 0)

Thanks!  I have not talked to OS about surgery yet - he originally said he would not do the surgery until the bleeding was "under control".  That was before I tried all these medications.  The doctors work same hospital and I know they will consult each other.  Planning on talking to OS as soon as I DO have some control!  (whenever that might be)  It is certainly unnerving when I had this knee replacement scheduled almost three years ago on left knee and had panic attacks.  As soon as I get those under control I develop UC bleeding. Last year I could have had the knee surgery but my husband was fighting lung cancer. Knees are not life threatening so they take a back seat right now.

ElaineNY

Posted 9/25/2008 5:37 AM (GMT 0)
I had a similar experience a few months after I was first diagnosed in 94. The sides were horrific and like someone said earlier "when the meds make you sicker than the disease its supposed to treat, its time for reassessment." I agree 100%. Pentasa, Pred, donnadrol, and some misc stuff not sure what it was. Unfortunately I was told that these meds were the best course of action at the time. I disagreed. I went cold turkey. I would not recommend this. I was so sick and tired of being sick and tired so I stopped them all. I roughed it for a few miserable weeks and then started to get drastically better. I am still off them and all meds and count my lucky stars every day that I was fortunate to have benefitted from it. Moral of the story is be careful with going cold turkey, I was lucky and you may be too, but be careful. You make your own decisions concerning your body, just make sure they are well-thought out and what YOU feel is best for YOU. I'll pray for your increased health.
Posted 9/25/2008 2:00 PM (GMT 0)

No - I will not be completely off medication I am sure.  I want to have the knee surgery.  Just had to get off what I was taking.  Feeling so much better today - no flu symptoms - just UC symptoms which of course is not good.  Putting a call in to my NP to see what we do next.  Hope the doc and her don't write me off!  That happens to seniors a lot on Medicare, you know.

ElaineNY

Posted 9/25/2008 2:23 PM (GMT 0)

I was on Imuran for about a year until we decided it wouldn't work for me. I've now been on Methotrexate for the past 9 months or so, first as an oral med and now as a weekly shot since April. I get every cold, sniffle, flu, virus, whatever that comes down the pike. If anybody in my family has something, I'm sure to get it. I saw my daughter last night who caught her daughter's head cold and guess what? That's right, I've sneezed about three or four times this AM and have blown my nose at least three times. Guess I'm in for it.

Since I NEVER got flu or colds until I was dx'ed with this dd in 1999, I blame it all on the meds.

Posted 9/25/2008 2:28 PM (GMT 0)
LightenUp

Can you take Zicam when you first feel the signs of a cold approaching...it really helps me.
Posted 9/25/2008 2:30 PM (GMT 0)

Yes, my concern is with giving what is just a "cold" to be serious problems for my husband who has COPD and lung cancer.  I have to consider the life threatening germs I would give him.

As for Zicam - works sometimes - at least helps me and hubby also!

ElaineNY

Posted 9/25/2008 4:41 PM (GMT 0)

Talked to NP, Rachel, and she will talk with my gastro doc this afternoon and I will probably have to go see him to see what I can do next. 

Today feeling almost normal - after stopping the meds - except for a little left-sided discomfort.  I know UC is still there - still little blood and I KNOW I have to try something else.  See what doc says.

ElaineNY

Posted 9/25/2008 7:12 PM (GMT 0)
Elaine,

Good job recognizing that your meds were making you sick and sticking up for yourself to your doc. I was on Asacol for two years before I made the connection between how crappy I was feeling and when I started the Asacol. Instead of going cold turkey, you really might want to consider a taper, but aside from that, get yourself healthy again! I hope you start feeling better soon.
Posted 9/25/2008 7:31 PM (GMT 0)
Hi Brandon,

I didn't realize you were sensitive to 5-ASAs, or is it just Asacol? What kinds of symptoms did you have?
emory
Posted 9/25/2008 8:06 PM (GMT 0)
Brandon - I did taper the Rowasa to every other night and then quit both same day - Sunday.  Been feeling better every day since.  ElaineNY

Posted 9/25/2008 8:11 PM (GMT 0)

Hey "granny" lol:

I just wanted to give you some advice about the knee.. don't put it off for too long.  My mom walked on a disentegrating knee for years, in pain, and now that she has the replacement she really wishes she had done it sooner.  But you are right, there are all kinds of infection scares with that.  The recovery is no picnic.  It is a lot of hard painful work.  So I would recommend only doing it when you feel emotionally ready for a battle, and physically of course! But once you get through that it is totally worth it.  She needs her other one done now.  Her doc doesn't know how she is walking on it.  But, she has lyme and chronic UTI's so her doc is making her wait a bit longer too.  So frustrating.  Oh, and her acchiles tendon is messed up too.  She's a train wreck lol.

Posted 9/25/2008 8:34 PM (GMT 0)

That is what is so frustrating - me and my knees are definitely ready - now if my colon and surgeon were ready for me!  LOL

All I need is gastro doc to ok that I don't have serious bleeding for infection.  I also need both done.  Believe me - I am NOT waiting because I want to - should have been done three years ago.  My husband had cancer and I had panic attacks.  It will happen when it happens, I guess.

ElaineNY

Posted 9/25/2008 9:31 PM (GMT 0)
I cannot take anything with mesalamine as well. I tried 3 different kinds of 5ASA's and they took me from mild UC to severe UC while I was on it. I'm currently not on anything right now. I think pregnancy hormones and a short stint on pred b/c of poison oak put me in remission. I hope you find something that works for you.
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