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Fentanyl Trial: Genetic Testing for Metabolism/Absorption of PM Meds

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Posted 3/4/2015 5:16 AM (GMT 0)
Hello Y'all...

Yes, It's me, Dixie=)  It seems as though I've been gone forever, but nonetheless it feels good to be back.  I've missed y'all as I've been trying to get my own health train back on track.  I'm not there yet, but wanted to share my conversation with my ortho today.  I welcome your thoughts and input, as this is unchartered territory for me.

My ortho injected both knees with Synvisc One today.  She asked how PM is going for me.  I told her that we remain in the trial stages @ one year into PM.  I've been through trials of Methdone (NO) Morphine (NO) Oxycodone (NO).  As of February 11, I surrendered to the Fentanyl patch at 25mcg every 48 hours.  I told my ortho that I just don't feel like the patch is the answer, either. 

As with previous mentioned trials, the crippling constipation and night sweats outweigh the little (if any relief) I experience.  No doubt the transdermal delivery is optimal for my surgically altered tummy pouch, with adverse SEs of oral meds.  Back to my ortho's question:  She asked if I've had a genetic swab testing to determine how my body metabolizes pain meds?  What?  No, I've never heard of this process.  She suggested I discuss this with my PM tomorrow. She said it's a simple test with a swab of the cheek cells.  The results should tell him whether my liver is metabolizing at an optimal level.  If so...then next possibility would be mal-absorption due to tummy issues.  She said the profuse sweating, etc. could indicate that I'm losing much of the medicinal properties through night sweats.  She asked if I've noticed low grade fever/chills...(yes, nightly).

I am acutely self-aware, and ever so hopeful for finding an effective protocol for reducing my pain.  I truly feel little to no relief from patch thus far, but extreme sedation is crippling.  I would have thought that 3 weeks in, the SEs would have subsided somewhat by now.  I fear an increase of mcg because I can't tolerate intensified sedation.  I am using the Mallinkroft (sic) label of patches, but my pharmacist says he'll order whatever label I prefer.

I plan to discuss this with my PM tomorrow as I am to update on progress at his office.  It is difficult on a good day, to have a rational discussion with him.  I realize that my multiple maladies are not easily sorted out.  Our questionable communication skills play a large role as well.  He will ask me what I want to do.  Well, I want him to guide me through this frightening maze, as he is the Pain Specialist.

I hope that at least some small part of this post makes sense.  I have ice on both knees, with HP on back and tummy.  This has been yet another exhausting day with anxiety about tomorrow.  The Shingles in my eye have re-flared once again.  There are many contributing factors to the elevated cortisol and stress, from pain and suffering to stressing over my mom's failing health.  She spent over 2 weeks in hospital with severe bronchitis.  She has yet to regain cognitive skills or physical strength.  She depends on me, as she knows she can.  I need help from my siblings, which I don't get.  Bless my DH's heart, as he does all he can to lessen my load. He, too has been sick with severe infection in his ethnoid sinuses.  

I thank all of you for listening.  I absolutely want your input/experiences with anything remotely familiar in my post.  I can't think straight with frogs chirping outside, thinking "Spring has Sprung".  The Dalmatians are snoring in stereo in front of the fireplace...as is my husband. The weather channel is screaming FREEZE for the South again.  I don't thing the frogs should pack away their winter wear just yet=) Misissippi had 8+ inches of snow last week.  It was a rare and beautiful sight.

Take Care and Keep Warm=)

~~Dixie

 

Posted 3/4/2015 6:03 AM (GMT 0)
Hi Dixie,

I had this testing done years ago, when it first came out, because I was so resistant to EVERY medication that my docs put me on for both pain and depression. At that time, they only tested 3 CYP450 pathways (the 3 most important ones involved in the metabolism of the majority of prescription medications that undergo hepatic metabolism). And it was a blood test, not a cheek swab (shows you just how far the testing has come in only 6 or 7 years). We discovered that I had double mutations in 2/3 of the pathways (of course THE two most important ones), such that I cannot metabolize any drugs that are broken down by those enzymes -- including the majority of all pain medications, and the majority of all antidepressants. Of course that explained why none of the medications worked for me. But since then, it has also meant that I have to be VERY careful about ANY drug that I take, because I'm at a greatly increased risk for drug induced liver damage/failure and/or drug toxicity/overdose (which has happened) if I take the wrong meds. For example, taking any NSAID is now a big no no. So if I need to take anything OTC for pain, it can ONLY be tylenol.

I actually had the newest testing that you are talking about (cheek swab, not blood) done a few weeks ago by my PM. And I should get the results when I see him tomorrow. This new test is done by a company called Proove Genetics. There are 3 different tests, which look at the genes for about 20 different CYP450 pathways, as well as a handful of other genes involved in drug metabolism and the perception of pain. It's pretty neat stuff. And there is a lot of information about the testing -- as well as a ton of research -- on their website. This new more extensive genetic testing has only been clinically available for a year or two, and I think that it is only recently becoming used widespread.

It will be interesting to see what my test results are, given that we already know that I have several genetic mutations. At the time that my original testing was done, my results were so highly abnormal that my doc got a phone call from the head of the lab/company that did the testing (not the same company that does this new testing). I have long suspected that I have additional mutations in my CYP450 pathways, which at the time there was no way to test for. Because even with the information we had from the original testing about what medications SHOULD work for me (depression and pain wise), still, none of them ever have been anything more than marginally effective, at best. So I'm very curious to see what the new, more extensive results show.

Based on the results of the testing, we are hoping to select a different opioid to switch me over to, which will hopefully work better for me than what I am on now. Because my current medication regime, which was mildly effective initially, is no longer of any significant help in reducing the pain. Plus we'd like to switch me over to a long acting medication, as I've only been taking short acting meds for the last few years, since we were never able to find a long acting med that worked for me before.

Anyways, if you are interested in learning more about the testing, definitely visit the website of Proove Genetics (yes, there are two o's). There is a lot of great information there about what the tests are, and why they are done.

Skeye

Post Edited (skeye) : 3/3/2015 11:24:53 PM (GMT-7)

Posted 3/4/2015 8:02 AM (GMT 0)
i hope the testing helps you dixie. my healing thoughts for your pain and that of hubby too. skeye has given you excellent wisdom. good to see you.
Posted 3/4/2015 8:33 AM (GMT 0)
Welcome Back Dixie!
I checked the Proove Genetics web site and it is very comprehensive, it analyzes all sorts of chronic and back pains. Would definitely be worth a talk to your Dr. about. In the meantime I would leave the patch behind as it seems to be doing more harm than good. A weaker med like HydromorphoneIR could help, it might not be bad to try it while waiting on results from swab test. Then again, you migh be one who cannot metabolize pain meds. I do hope that this Dr. Id up to date enough to perform this simple procedure. Once again, it's the Proove Genetics swab test . . . Q
Posted 3/4/2015 2:08 PM (GMT 0)
Thank y'all so very much for your responses thus far.  Skeye, it sounds as though we share similar issues.  I am very interested in the outcome of your most recent testing.  Is the testing expensive?  Is it covered by health insurance?  I feel such empathy for your trials and tribulations, right down to the NEED for anti-inflammatory.  I cannot tolerate OTC or prescription strength (ulcers).

Jamie and Quincy...Good to see y'all, too.  I've missed everyone.  Yes, I'm leary of the Fentanyl.  The sweats and itching persisted throughout last night.  If there was "some" relief, I could endure.  My nerves are just tattered in anticipation of today's PM appointment.  I'm literally nauseas with anxiety. 

I awoke this morning to the continued flare of the Shingles in my eye.  As a "stand alone" this virus is enough pain and suffering to "drive" one insane (especially since I feel that I'm within walking distance, even with hobbled knees). 

I think it's Roccky who has said that "one disease per person is enough...some of us are over-achievers".  Indeed.

I will certainly research the website, although I must confess...The mere thought of wading off into my murky gene pool...Yowzer=(

~~Dixie

Posted 3/4/2015 9:53 PM (GMT 0)
UPDATE:  I just returned from my appintment with PM.  He wants to leave me on the Fentanyl 25 mcg every 48 hours for the next 2 months, then re-evaluate.  I explained the profuse night sweats, itching and constipation.  He said that the sweating/itching should subside with time.  He suggested Linzess for constipation, which is EXTREMELY expensive.  Yes, my daily protocol for chronic constipation includes softeners and laxatives.  However, the Fentanyl (like the Morphine trial) is exacerbating the bowel issues.

Believe me, I am grateful just to have a PM specialist under the umbrella of the nearby hospital.  Otherwise, I'd have to drive 1.5 hours one way.  Having said that, he's not a doctor I would choose if I had a choice=(  I asked about the genetic testing recommended by my ortho.  His response was "It's expensive and unnecessary.  The best gauge of med effectiveness is how you feel".  Well, I feel like walking dead (limping, actually).

Most days I just wish I still had Darvocet option.  No, it didn't manage my pain.  But I could manage my life of pain for the many years that I took it.

I need to take scripts to pharmacy.  Mine only carries Mallinkroft, but said they could order from another manufacturer if I preferred.  I don't know what to do.  Something's going very wrong with this patch.  I should feel something other than harsh side effects.  At least the end would justify the means.  Right now...not so much.

If anyone could chime in about the Mylan vs. Watson vs. Mallinkroft?  Back in 2005, I used the Duragesic brand 25 mcg.  It was a larger patch with reservoir of med in center.  I like the convenience of the smaller patch, but I just believe somehow the combination of med/adhesive is perhaps not metabolizing or absorbing.  I'm no scientist or doctor, of course.  I'd just like to hear from anyone who is using the Fentanyl patch for their PM protocol.

Thanks~~Dixie

Posted 3/4/2015 11:06 PM (GMT 0)
Hi Dixie,
When I was on the patch I preferred the Watson gel pac. The glue would sometimes cause a bit of a rash but it didn't last more than two days. I liked being able to tell that something was actually going into my body rather than just an expensive bit of duct tape. I tried the Mylan matrix for six months and just plain got better relief from Watsons. I've heard good things about the Sandoz gel pac but am not sure that it's still around. I think they went to matrix.

I can't believe that your Dr. Would keep you on the patch when you are having all those SEs. I guess some just go by the book and stick you with thee months. . . Q
Posted 3/5/2015 12:52 AM (GMT 0)
Hi Dixie,

I wanted to chime in about the testing cause I remember them doing a cheek swab a while ago for some kind of tests to see how I would be able to metabolize the meds I was on. Sooooo...... I pulled out this handy dandy little card they sent me weeks later. It was from "Millennium PGT Pharmocogenetic Testing", my results indicate: CYPD6 Gene was Extensive. The doc said I was good to go as far as the Fentanyl patch and my BT med of Oxycodone. I didn't have to pay anything for this testing, I think they billed medicare for it but I didn't have a copay or anything.

The patch, I have been on Fentanyl Patch 50 mcg every 48 hrs for 3 years now. I started off with a 25 mcg patch and then went up to the 50 mcg about 4 months later. I used the Maillinkdrodt (can't remember the spelling) matrix patch with a Tegaderm on top of it for better adhesion. I have NEVER had any side effects from it and it has helped control my pain very well. The best part is that I never got a "high" or "euphoric" feeling from it.

Your PM doc may be keeping you on the patch for a while to see if the initial side effects subside and you get better pain control, since there is not too much more above that that you can take for pain.

Hope you feel better soon!

Hugs from Texas,

Pam
Posted 3/5/2015 2:08 AM (GMT 0)
Hi Dixie,

As far as I know, the testing was completely covered by my insurance. But I'll find out when I get my next insurance statement/doctor's bill. I was told that the testing was covered by insurance, anyway.

Did get my results back today. Results agreed with the previous testing that I had done, plus revealed a handful of other deficient enzymes (confirms what I had long suspected). Based on the testing, essentially the only options that I have for opioids that should work are fentanyl (been on it in the past, bad side effects, not going there again), buprenorphine, methadone, and morphine. So not much...

Based on the results, we are stopping my hydromorphone and switching me to buprenorphine (butrans patch). And then we will re-evaluate in one week. I'm not thrilled about another patch, since I had so many problems with the fentanyl patch (many of which were a result of being allergic/sensitive to the adhesive). But as my doc said, it's worth trying, because we don't have too many options left (which is a little scary in itself). So I'll start the patch tomorrow night (pharmacy had to order it).

The other thing the test showed was that I have a "moderately low sensitivity to pain." I'm not exactly sure what that means. The little blurb says that I may be underestimating/under-reporting my pain, but also that I would be expected to recover faster from surgery, etc, than other people. I don't know if that means that I have a high pain tolerance (which I think I do), and so that it must take a lot of pain/more pain than your average person for me to be in the pain that I am in? Interesting? But doesn't make a whole lot of sense to me. My doc didn't mention anything about it, so I doubt it is anything important. I only know because I asked for a copy of the test results. I'll look into it -- might make more sense once I look into the actual science. But otherwise, I don't know that this result really means anything/makes any difference.

Skeye

PS - Dixie, we have more in common that you realize, because my source of chronic pain is my eye (retrobulbar nerve and tissue damage from a severe eye injury 8 yrs ago). So I feel for you with your shingles. I know all to well what it is like to feel like you want to rip your eye out because of pain. Welcome to my life! I would give up my eye in a second, if it meant that it would get rid of the pain. But unfortunately, it's not that simple/easy. Hang in there. Hope the side effects from the fentanyl subside, and that it starts helping with your pain!

Post Edited (skeye) : 3/4/2015 7:14:20 PM (GMT-7)

Posted 3/6/2015 1:39 AM (GMT 0)
Hey Y'all...Thanks again for sharing your experiences with me. As all of you know, this process of "managing" pain is exhausting, as if we aren't struggling enough already.  I'm trying to be patient, but January marked a year since I enrolled in PM.  I guess I'd just hoped to be farther along by now. 

I'm sorry if I repeat myself, but I truly feel that the shingles in my eye were brought on by the stress that PM has caused.  Granted, my immune system "left the building" shortly after Elvis did.  But with EVERYTHING I've been through, the potential for shingles never crossed my mind.  I was not even aware that I could have gotten the vaccination at age 50. I don't recall TV commercials airing prior to the onset of mine in June 2014.  Even the ones that air now do not come close to the horrid reality that is SHINGLES. This virus is the cherry on top of a crap sundae that is my life.

I will continue the patch for now, in hopes the SEs will dissipate.  He offered to keep me on the Oxycodone for BT, but I declined.  I prefer to "see" what the Fentanyl can do as a stand alone for now. 

I still would like to have the test done, if my health insurance will cover most of the cost.  I don't have prescription coverage since downsize, so "trying" expensive meds out of pocket is a challenge.  It seems the test is a no brainer for my altered gatrointestinal system and liver failure in 1994.  I didn't know this test existed until my ortho explained it to me on Tuesday.  I did the saliva collection test (in the mid 90's following surgery) through my then cancer surgeon.  As gross as that experience was, I would do that method if it would provide answers today.

Just thinking aloud, but...SP and Skeye...If I got the swab done by another of the specialists I see, would I have the results/proof for my own piece of mind?  My ortho mentioned that my GI can do it, but questioned (as I now do) why the PM wouldn't want to do it.

BTW...There's 2 inches of sleet here with low of 17 tonight.  Y'all keep warm=)

~~Dixie

Posted 3/6/2015 4:31 AM (GMT 0)
For me
Watson brand

Adhesive bothered me - itchy & redness
No issues if I prepare application site
First clean with alcohol
Nasal steroid Spray
Let dry

No more itching

I have gotten considerable pain relief from using the Fentynal patch.
Posted 3/6/2015 5:48 AM (GMT 0)
Hey Dixie,

I don't see why it would be a problem for you to get a copy of the test results from your doc -- whatever doc it is that does the test -- to keep for your records/pass along to your other docs.

I have a copy of my test results (both the original testing I had done years ago, and the most recent testing that I just had done a few weeks ago). My PM had the swab results up on his computer screen when he was discussing them with me, and so I asked him for a copy for my records. Wasn't a problem. He had the receptionist print me a copy on my way out.

Skeye
Posted 3/6/2015 10:56 PM (GMT 0)
My PM doctor suggested the tegaderm covers, which I will try.  I don't have a problem with the patches sticking.  I alternate the sight from left upper arm to right upper arm.  There is always an outline of adhesive that is difficult to remove.  I wonder (though clueless) if I could be losing the med delivery, since it's impregnated into the adhesive?  Any thoughts? 

Although I'm willing to try the covers, I fear an allergic reaction.  I have "that skin" that gets red, irritated, raised and angry, with even a bandaid.  Hospital post-op bandages leave nightmarish wounds.  But again, I am willing to try to make this work.  I am anal retentive, so I keep a journal of time/date change, along with ebb and flow of feelings/pain level.  I'm so disheartened right now, because I would think that the 25 mcg/48 hr dosing would be helping by now (10 patches in).  I just literally want to SLEEP.  During the night, I sweat profusely like I did w/menopause and I scratch myself bloody. (TMI)  I don't have the episodes of sweating during the day and very little itching...HELP!

Diane...Did you have SEs when you started with the Fentanyl patches?  If not too personal, did you have extreme constipation?  I've learned the hard way that opiates can cause constipation in a "normal" digestive anatomy.  My constipation issues long preceded my enrollment in PM  year ago.

I apologize for whining.  I just know that there are members here who have knowledge and experience far beyond mine.  I'm truly still a newby to PM.

Thanks y'all and Have a Good Weekend=)

~~Dixie 

Posted 3/7/2015 8:24 AM (GMT 0)
Dixie are you using the GoodRx app to look for better deals and coupons for your meds?

Second thing that keeps jumping out at me is the time I was tried on fent was a period I was able on Hrt and sweating from the hot flashes repeatedly and the flushing allows the fent to dump to much meds or at a faster rate then it normally would,in turn I was getting only about one day of relief out of it but at a much higher dose then should have been and that could have been dangerous but definitely led to fast building tolerance issues.

Don't know if you or your Dr have considered any of that but wanted to put it out there to consider at least.
Posted 3/7/2015 9:54 PM (GMT 0)
Thanks, Vickie...Yes I am, but the patches are expensive even with Good Rx.  As I've posted along the way, I've held off from the patches due to cost and previous experience (bad) with 72 hour dosing.

However, the IR med trials have been unsuccessful, so I'm at a crossroads.  The ER form of Oxycodone is astronomical in price.  The IR, which has been my "trial" for several months, has done more harm than good.  For me personally, the strength of dose seemed to hit hard and dissipate too quickly.  It left me with too many ups and DOWNS.  I don't like those feelings, so we felt I needed to surrender to Fentanyl.  For now, I'm using Fentanyl 25 mcg only, along with my gastro maintenance meds and AD.  Oh, and I'm also taking Gabapentin for Shingles in my eye/face.

I went through surgically induced menopause in the mid 90's, so I'm WAY PAST that.  It has to be the med that is causing the sweating and itching.  I recall last year upon enrolling in PM that we tried MS Contin.  It had great potential for pain relief, but the SEs were bad (night sweats, severe itching, sedation to the point of drooling) and even worse (life-threatening bowel obstruction from constipation).

I wake throughout the night fiercely clawing my flesh, especially my face, eyelids, neck and arms.  I am wringing wet with sweat (soaked t-shirt and sheets) yet literally freezing to death.  I awake in the morning feeling much as I did pre-PM with PAIN (crying out with movement) and stiffness.  It lessens to a degree as I am up and around, but truly no more than it would from Darvocet.  I am SO sleepy throughout the day, unable to focus.

I will add that I continue to battle an unwelcome companion of UTI with most recent Cipro.  It's recurrent for at least 2 years, causing severe flank pain and dark smelly urine.  Sometimes it hurts so bad that I can't stand upright.  I saw my GP 2 weeks ago.  She ordered the Cipro.  It was just early winter that I took Levaquin for a 30 day cycle.  It will clear, but rebound, it seems.  Perhaps it's due to my surgically altered anatomy (rectal/vaginal).  Either way, I fear kidney damage.  Something's just not right.  I have a sub-rotated (pelvic) kidney on my left side.  That is the side (flank/pelvic) that terrorizes me, whether it's kidney or endo-related.

My PM doctor doesn't really have "conversations" with me.  There is a failure to communicate, whether it be cultural or otherwise.  He says he doesn't remember me from one visit to the next "because he has so many patients". He forgets our previous discussions. Those should be on record so that he can refresh his memory.  YES...that scares the begeezers out of me.  He went ballistic last year when I took a 4x6 photo for his file to provide visual prompt.  I wasn't trying to be a smart arse.  I was (am) worried that he is more scattered a cat in traffic.

I am unapologetically OCD when it comes to record-keeping.  Thankfully, for now, I am blessed with a phenomenally sharp memory and recall.  I have journaled throughout my adult life, also, and kept copius amounts of notes and medical records.  Although I love the convenience of our technology, I'm an "old school paper trail" kinda gal.  I have more ring binders than I can count on 2 hands=) This has served me well as I have yet another tool to advocate for my extensive medical history.

Vickie, I'm so happy that you posted, as I can certainly use your knowledge as a nurse.  I am fully aware that medical advice is prohibited here, and rightfully so.  However, the best and most accurate information can be obtained by fellow pain peeps that are LIVING this life.  Anything you have to offer will be greatly appreciated.  I just feel LOST and AFRAID...so alone in this.  What am I missing?  What do you think is happening with the patch and the sweating?  Do you think the med is dumping during the night?  Could that be why I'm feeling no relief of pain during the day, yet sedated?  What can I do?

OT, but I loved reading your post about your recent move with your daughter's family. Your happiness came through like rays of sunshine.  I BELIEVE in family...warts and all.  I always have, though mine was certainly never the Hallmark version.  That doesn't exist.  Mine is fractured into pieces, though I try constantly to glue it back together.  I think we need family.  I admire the cultures that live together multi-generationally.  The circle of life is completed when the elders live in harmony with the "young'uns".  I cried tears of joy (I know, silly) when I read about y'all sharing not only a home, but tasks and chores.  There is nothing IMO that is more comforting than a table full of food and fellowship, shared amongst family and friends.  People NEED people...but in this crazy fast paced sell-absorbed environment...Well, yours is the exception.  I love the "anything goes" for supper night.  My DH and I have those several nights a week! smilewinkgrin   

My DH is baking us a cake right now.  I was SO disappointed that Brachs isn't making chocolate covered jelly beans this year.  It's the little things=) YES, I'm obsessed...I contacted the company when they weren't stocked with the Easter candies recently.  Bless his heart, he knows how down I've been...not about the candy...well, maybe. BTW, I also enjoyed the thread about Little Debbie cravings.  My DH KNOWS that cake is always the answer.  The smell wafting from the oven, as he brings in firewood, lifts my spirits.

Hugs~~Dixie  

Posted 3/8/2015 4:54 PM (GMT 0)
Hi Dixie,

Just wanted to say good to see you back here! But sorry you are having such problems with pain. Finding the right meds sure sucks sometimes! Just so hard and frustrating…

Don't give up. It will get better!!


Sunny.
Posted 3/8/2015 7:53 PM (GMT 0)
Thank You Sunny...I do hope that your recovery continues at a steady pace.  You are such an inspiration to me, as you've soldiered through so much.  I know you have a long road to complete recovery, but I pray that every day brings progress.  I also pray that you can find the serenity in KNOWING YOU WILL FEEL BETTER.  Please know, too, that as I've said many times...You are NEVER alone, my friend.  Email me any time you feel like it.  I'll always be there for you.

Hugs~~Dixie

Posted 3/9/2015 12:24 PM (GMT 0)
Vickie and all other GoodRx users,
Did you know that you can send coupons to friends via GoodRx? Just get their zip code or use their nationwide coupon, it makes it easy on your friends and makes you feel good . . .
Posted 3/9/2015 4:18 PM (GMT 0)
Hi Dixie,

I just wanted to tell you that sometimes coconut oil capsules can help with constipation. And coconut oil is good for so many things. I use it. It didn't help with some strong narcotics, but it helps a lot with some other meds that constipated me. It may work for you too. I found taking one stool softener and one cascara sagrada kept me moving. I would take them at night before I went to bed. In the morning I was regular.

Morphine use to make me sweat and itch. Sometimes as your body gets use to the medications these things will go away. I don't know about the constipation though because narcotics slow your system down. I would drink a good amount of water too Dixie. It helps a lot with constipation.

The cascara sagrada is a stimulant for the bowels. I hope that this helps.

Good to see you back. Pop in to depression when you get a chance.

Hugs, Karen...
Posted 3/9/2015 5:41 PM (GMT 0)
I can't thank y'all enough for your suggestions.  Yes, last night was another sweat-soaked night.  Again, I don't mean to whine and complain.  I try to focus on solutions, rather than my problems.  My PM doc says the SEs should lessen with time, but it will be a month this Wednesday. 

The most frightening aspect is little to no relief from the Fentanyl patch.  I cannot afford to be "sweating" away the cash cost of the patches (and any relief they should offer).

I will certainly try the coconut oil capsules, GB.  That's probably the only thing I haven't tried=(  The Casada Sagrada required several huge capsules, that I couldn't seem to "keep down". I drink tremendous amounts of water throughout the day, even keeping it bedside at night.

I feel like I'm re-arranging the deck chairs on the Titanic.

~~Dixie

Post Edited (Dixie6) : 3/9/2015 11:48:32 AM (GMT-6)

Posted 3/9/2015 8:08 PM (GMT 0)
Dixie, I sweat if I miss a dose of lyrica, is it possible you're missing a dose of a different med? Like your gabapentin or something that affects anxiety? Do you take your gabapentin at bed time?

Or maybe your body is just trying to get rid of the toxins as quickly as possible.

I did some research when I couldn't figure out why my patches only worked overnight and it turned out that having so many layers of clothing and bedding (plus heating) was raising my body temp too much. Is it possible this is happening?
Posted 3/9/2015 8:35 PM (GMT 0)
Hey Anna...No, I'm not missing dosages.  I take the Gabapentin morning, noon and night.  I take the Zoloft and Ativan at night (for years now). I change the Fentanyl patch @ 8 p.m. every 48 hours.

The nightsweats and rabid itching occurs only at night.  Should I change the patch earlier in the day?  Or...would that just cause me to sweat all DAY?  Any ideas as to why there is little if any pain relief with the patch?  I'm using no BT med until we can establish an ER med protocol.

I sleep in a lightweight tshirt/panties.  We keep the thermostat LOW at night with a lightweight quilt ONLY.  I just started the night sweats again w/Fentanyl start on 2/12.  I had them last year (just the same intensity) when I was trying MS Contin. 

I didn't have these episodes when I went from MS Contin to Oxycodone.  But...like I've said...I really don't want to take any more Oxycodone, even as a BT med.

HELP!!!  Any ideas welcome=)

~~Dixie

Posted 3/9/2015 8:43 PM (GMT 0)
How about taking an allergy pill at night? That has worked for me before. I tend to itch with what seems to be higher doses of medication. Even Vicodin would make me itch.

Hugs, Karen...

The cascara sagrada I take is 450mg. It says to take one. It says preferable with a meal, but I still took them at bed time. One of each. Within a couple of days it was working. Gets you back on schedule.
Posted 3/9/2015 9:14 PM (GMT 0)
GB, I appreciate your suggestions so much.  I welcome any thoughts you may have to help me.

Yes, I tried Benadryl for itching, but those have a "drying" effect in the bowel (for me) causing even worse problems with constipation.  Multiple abdominal/pelvic surgeries have left me with slowed motility in my bowels.  I never knew just how these pain meds could further complicate that issue.  I guess it's the ole chicken vs. egg? 

When the MS Contin nearly caused an obstruction for me last year (9-11 days no BM) I was trying the suggested Cassada Sagrada.  A friend said I could take up to 3 a day.  I was vigilant, even with projectile vomiting...but couldn't get them to work for me.  I know many people for whom the methods I've tried have worked.  So my intent is certainly not to disuade anyone from helpful remedies that might work for them.

I realize that PM is a trade off for most, as we must endure SEs.  I refused PM for so long, I fear that my pain cannot be "managed".  I just need a "break"...not of my fragile bones, though=)

~~Dixie

 

Posted 3/10/2015 12:30 AM (GMT 0)
I have a ton of gi issues, which is one reason I was on TPN for so long. Pain meds are awful for motility. One reason I am on Fentanyl is that it does not need to be absorbed by the gi tract. With the inflammation, I have absorption issues.

You need to set up a bowel regimen and it's important to maintain it. Even missing a day can undo all your work.

First-make sure you don't have a bowel obstruction. I've had a few and they are awful, and need medical intervention.

Currently I take two doses of miralx and Milk of Magnesia daily. Initially it takes a few days to kick in, but if take it on schedule, it works for me. If I miss a day, I start back at day one.

When my autoimmune issues flare up, my gi issues increase. Occasionally I'll go a month with no bowel movement. When inpatient the Drs use Relistor which is an injection. VERY painful-but very productive. It's a palliative care med, so the Dr needs to request it's use. Hopefully you'll get moving and not need medical intervention, but if you reach that point, there are interventions to help you out.
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