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Sjogrens Topics => Living With Sjogren's => Topic started by: eye2dry on June 10, 2016, 08:24:25 PM

Title: off my meds
Post by: eye2dry on June 10, 2016, 08:24:25 PM


hello to all

I saw my rheumy yesterday. He was interested and concerned about my
recent 3 day stay at the hospital. A few weeks ago I had been on Augmentin 875 mg
twice a day for a sinus infection. I then had abdominal pains, vomiting, bloody stool, fever
after 5 days on Augmentin.

My diagnosis was ischemic colitis with melena and they weren't sure exactly why it happened
and I have to have a colonoscopy in July.

Anyways.....my rhuemy told me to stay off the meds he gives me (plaquenil, methotrexate,folic acid)
until after I have my colonoscopy. He said I don't feel anything I give you could contribute to
this but why take a chance. I can take my prednisone if I feel I need to and I can take Tylenol.
So, I have 5 1/2 weeks until the test...wonder what I'll feel like without my meds.

Doesn't  Plaquenil stay in your system for quite some time after you DC it ? I know methotrexate
has a very short duration...it's in and it's out.
Maybe I won't feel different at all.

shelly
Title: Re: off my meds
Post by: hopeforall on June 11, 2016, 01:24:32 AM
I was prescribed Augmentin 875 mg twice a day for a Sinus infection three days back. I felt like my sicca symptoms got worse after starting to take it. I asked my ENT but he said he wanted me to continue taking it  :( So far, haven't had the side effects you have had.
Title: Re: off my meds
Post by: gurs on June 11, 2016, 04:19:35 AM
It was that darn augmention. Doubt if it was your meds. They are known for really causing tummy issues. When I get sinus infections now, I try not to take anything. Omnicef worked for me. My ENT said not as hard on the tummy. I would load up on probiotics until your testing.

Gursie
Title: Re: off my meds
Post by: irish on June 11, 2016, 10:01:54 PM
It is possible that you could have another autoimmune issue that causes some clotting problems which can result in the ischemia in the colon.

I have a cousins daughter who has this. There are blood tests that can check for blood clotting issues which can be treated with meds. Some of these diseases are autoimmune and a few are genetic diseases. My cousins wife has a genetic disease that causes the clotting problem. It often happens that autoimmune diseases are accompanied by genetic issues. Don't ask me why, but we see it on occasion on this site.

I hope that you doctor doesn't just blame this on the med but follows up on the other testing to help find the cause. Good luck. Irish
Title: Re: off my meds
Post by: eye2dry on June 12, 2016, 07:22:40 AM


********You know I just remembered something that happened to
me that is similar to my colon bleeding event above.


4 years ago I just started bleeding from my bladder at work one day.
I noticed when I went to the bathroom there was blood on my underwear
and I hadn't had a period in 6 years. When I peed it was total blood with clots.
No pain. This went on for many hours. Went to urgent care...they diagnosed UTI/hematuria and gave
me a 10 day course of antibiotic.

After 10 days I saw my GP.....my urine looked good but still was positive
for blood.  I then had to have a CT of abdomen and a cystoscopy...never
showed a thing wrong. Eventually my urine quit showing blood in it.
No explanation for that episode was ever given to me.

Could bleeding from bladder and colon be related?

What blood tests should these drs be looking for?

I think the only thing they ran in the
hospital (beside CBC , chem profile) was an INR.

shelly
Title: Re: off my meds
Post by: SjoGirl on June 12, 2016, 04:53:47 PM
How frightening and terrible.

I learned this from experience, a bad one, Mexotrethate can mess with Plaquenil and cause it to rise to toxic levels. Also Mexotrethate and folic acid have to be very well balanced or it alone can have nasty side effects.

I became very ill when on both and it did impact my ability to clot. That said I am also prone to thrombocytopenia which can affect clotting.

Your doc seems to be following his oath, first do no harm. Hope they find a reason.
Title: Re: off my meds
Post by: SJSman on June 13, 2016, 01:36:50 PM
Hi eye2dry,

I always had to go off of my immunosuppressant Imuran when I got an infection and was put on an antibiotic.  I am sure it is the same case with the generic Cellcept that I am taking now.

I am pretty sure that if you have an infection, or even might have an infection, one has to go off their immunosuppressant because if you stay on it the infection won't be checked by your immune system at all and then the infection might overpower the antibiotic and make you extremely ill, perhaps even causing a fatality.  So I think you are likely experiencing standard procedure in being removed from your methotrexate while on any antibiotic.

Changing topics slightly here.  I suspect that if you do not feel different when you discontinue your methotrexate then perhaps you don't need it?   

When i go off of my generic Cellcept I become extremely sick, deeply sick and I never want to experience that again.   I dread getting an infection and having to be removed from my immunosuppressant.  That is one reason that I am housebound now - to avoid people who may be carrying germs - but in reality the major reason I am housebound is simply that I don't have the energy to go out.  If I do go out, then I find myself sleeping even more excessively than usual in the following days.

If I could go off my generic Cellcept I would - why take strong medications with serious side effects if you don't need to?    I don't think the immunosuppressants provide the same kind of "slowing the progression of the disease" that is attributed to plaquenil, rather I always thought the immunosuppressants (mtx, Imuran, and Cellcept) were more short-term, as in if you feel better when you take them then take them.  Your doctor knows better than I do of course.

I am a little surprised that you take prednisone and methotrexate at the same time if you do that, however, I don't know a lot about either because prednisone doesn't work for me and I have never been on methotrexate.

I hope that you feel better soon!