Want to go off meds.....but a little afraid to.

[familytradition]

Hello. Is anyone out there familiar with being on a lot of different meds, but not really feeling better, actually feeling worse?  Has anyone had the courage to go off the meds and try to give the body a fresh start with things?  I am at a point where I can't enjoy waking up in the morning, eating or drinking anything- nothing has flavor or is too spicy, clothing bothers me no matter how soft it is, it is taking so much energy just to get hygiene taken care of for the day that other than that I feel no accomplishments.  I know there is depression, but I just feel like I have too much medication in my system and it makes me feel weak and cloudy.... but is it the sjogrens making me feel that way?  I'm afraid to drop it completely, because what if things get worse?  Has anyone ever gone off the medication just long enough to see if they feel better without it? Please help this miserable "I Love My Cats Lady" follow her gut feeling which says to get back to nature.  I'm taking Plaquenil 400 mg daily, Imuran 25mg daily, and other medications relating to headaches and muscle spasms.  My cognitive function has been effected by the sjogrens as well as movement, breathing, and vision.  Any advice.

[Joe S.]

Work with your Dr.
Check for interactions on the web.

While I am on meds for diabetes and related issues, I am not for the other AI issues. Check out my list below as a place to start.

[salsen]

I have gotten off my meds because they were causing more problems than the AI issues.  Please let me emphasis : DO this under doctors care and after having a long discussion with him.  Never try to stop on your own.  Many of these medications effect the chemicals in your brain and can cause serious problems if stopped suddenly.   All of mine were taken down with doctors supervision.  My sister-in-law was on a large amount of medications due to AI issues and tried to stop by herself.  She ended up having a psychotic break that took months to straighten out. 

These are strong medications, please make sure your doctor is working with you to help you if you wish to stop.

[lynnmarie219]

Hi FT,

I second what Salsen and Joe said...it's very important to work with your doctor before going off these medications...so please talk to the docs and work with them on a plan to decrease slowly.

One thing to think about is that you may not realize that the meds are working until you get off of them....but I guess you will never know that until you try to start a plan of reduction. If you find that the medication was helping more than you knew you can always start back up on it...mention all of this to your doc first though so you are both working with the same ideas in mind!

[tmarie0183]

I too have been wanting to go off all of my meds, but am too scared!!  Let me know how it goes if you decide to do it (under your doctor's care of course:).  Thanks!!

[Ntysin]

Hi familytradition,
Hope this message finds you well.  I agree with everyone else consult with your doctor!!  Be sure that each of your doctors know ALL of your meds.  A common mistake many people make is failure to share ALL their meds with their doctors.

You must share ALL your meds...because many meds conflict with other meds...you know kinda defeats the purpose and could POSSIBLY cause worst cases...

Good Luck to you!!

[Joe S.]

When I facilitated the pain support group in Fargo, we had one fellow that told us he was going cold turkey after he had surgery on all of his toes. He had previously showed us the shopping bag of empty prescription bottles he had for each month before (45 bottles). We tried to talk him out of it. He went in for surgery and we did not hear from him for six months. He did come back after and talk to us once. He used the Tones, Meditation, Carrot Juice, and Reflexology most of the time to manage pain. We did not see him again. He called me once to let me know that he was still doing very well.

This is not the way to go off your medications. This man was very lucky that he made it through alive with minimal withdrawal.

[familytradition]

Thank you all for your advice about getting off of meds.  I did as most of you recommended, and I spoke with the doctors of the meds that I felt were in question, and I did go off Topamax after being on it for 6 months with no real relief from headache.  My taste was SO distorted that I have lost weight simply because nothing tasted right (especially sodas and sweets).  I needed to loose some of the weight because I had just finishes 8 months of prednisone that made me put on about 20 lbs. (but I have to say that in the long run it was worth it because it helped so many of my problems... I have movement problems along with sjogrens).  I had to taper off of Topamax, and finally my taste has gotten a little more normal, but I still feel several dry patches that are probably more of a problem with sjogrens that the medication.  I was considering being taken off Imuran as well, because my liver enzymes were getting very high, but my last check on them was dropping, so he told me to increase to 50mg daily of Imuran and in a month he would start decreasing some of the Plaquinel.  So, I am finding out that it is not that simple getting off medication, but it was good advice to work closely with the doctors in doing so.  I think that the Topamax was also causing a sensitivity throughout my body and have just been diagnosed with vulvar vestibulitis, but am hoping that it was only temperarily made worse because of the Topamax.  My goal is to decrease in use of medication, but if it happens, it will be a long process, because the facts are that the problems still exsist to need them in the first place.  I just want to feel like there is a light at the end of the tunnel that doesn't shine on MORE MEDICINE!  I felt like I was starving not being able to eat very much because of the soreness in my mouth, but I finally enjoyed a mildly spiced dish of chicken marsala this evening.  One day at a time I guess is what we all have to take it.  Thanks again for your advice.