Pain Management- need help, too many side effects!

[bookbabe]

Hi all, I guess it's been so long since I last posted that my account disappeared, so here I am again. Please bear with me on the length of this post.

I am having a really bad flare. My current med regimen isn't working and I'd appreciate some input about what to ask my Dr. in my next appointment.

I am not on Plaquenil - bad enough reactions to consider it a med allergy, so that is not an option.

I take Wellbutrin SR 100mg x2 for depression, and that has been fine, along with Cymbalta  30mg x1 for pain. I was originally prescribed 30mg x2/day but had sexual side effects, so I halved it and do not wish to go back to the higher dose.

I was prescribed Amitryptiline, up to 20mg at bedtime, by the P.A., to help with sleep and pain. My Dr. switched me to Ambien as he said the Amitryptiline can be drying and I'd progressed to needing punctal plugs. The Ambien works fine for sleep (although I did laundry in my sleep once!). I don't know how much difference the Amitryptiline made in pain management and if, therefore, the switch to Ambien has contributed to increased pain.

I was taking Ibuprofen at 800mg/day. My Dr. (or maybe it was the P.A.?) changed this, I'm not sure why (although my liver is showing effects of all the anti-inflammatories). We tried Diclofenac at 75 mg. x2.  This gave me horrendous mouth sores, so I started doing just once a day.  No mouth sores, but less pain relief, so my Dr. switched me to Sulindac 150mg x2.. This also gives me mouth sores at higher dosage; they are not as bad at once a day - I can at least eat - but I want an anti-inflammatory that I can take at a clinical dosage so that it helps as much as possible with pain!

I was taking Evoxac with good result, but it was $60/month, so I decided to try Salagen instead at $10/month. It doesn't work nearly as well, and I am now reading it causes many people constipation, which has become not just a discomfort in the past two weeks, but an urgent concern.

Because the pain has been so bad and I can't up the dosage of Diclofenac or Sulindac, I am taking the max of 400mg Tramadol daily. I am now having constipation of not only the dry type, that could be from Salagen or anything else. I am not having peristalsis - no amount of prunes or apples or bran or water help because the muscles aren't working to move things along. This is, of course, a side effect of the stronger opioid painkillers, which is one reason I'm only taking Tramadol. I have Percocet on hand, but I'm afraid to start taking it as I'm also deathly afraid of drug dependence. My mother was dependent on Rx meds, plus I happen to work on an inpatient pscyh unit where we medically detox people who have become addicted to pain meds. I never want to go through that.

I don't know what to do!

Any ideas on other "families" of anti-inflammatories I might ask my Dr. about? I think the Sulindac and Diclofenac aren't for me.

What pain meds work for you, and with what side effects?

Have you taken anything like Amytriptiline, Cymbalta or anything else for of-label pain management?

What about complementary treatments or home remedies? Accupuncture does nothing for me. Hot epsom salt baths comfort a little while I'm in, but I have dry rashy skin, and anyway they're not really an answer.

Finally, what about laxatives and painkillers? Have you found anything safe and reasonably comfortable that allows you to use stronger pain meds? The oral laxatives I've tried (MoM and oral Dulcolax) caused diarrhea, besides which, I don't want to become laxative dependent!

Thanks for just being here, and thanks for your input


         

[Scottietottie]

Hi Bookbabe 

I'm sorry you are having such a hard time. This sounds a bit odd - but does it matter if you become painkiller dependent? I was told it could happen with Tramadol but if we're on painkillers for the rest of our lives - so what? I take slow release Tramadol interspersed with paracetamol. I miss the NSAIDs but I can't take them because of stomach issues.

I totally sympathise about how awful constipation is. I was recently away on a boat with a group of kids from work and was so constipated by the end of the week I didn't know what to do with myself. That was despite taking 2 senna tablets every night and making sure I ate fruit every day. I eventually ate an inordinate number of prunes and spent a very painful two hours in the bathroom but things eventually shifted. I think I will make a doc's appointment though to see if there is anything I can take as well as senna, which used to work, but is now not as effective.

I take Amitriptyline at night for pain. If I don't take - it makes a difference. I only take 10mg but even that makes a difference. I would like to take more - but more is too drying.

Have you tried a pain clinic or anything for advice?

I hope you find relief soon.

Take care - Scottie 

[Joe S.]

You are taking some large doses of Antidepressents with multiple antidepressents. My first suggestion would be to do a web search of the the medications that you are currently taking and look at their side effects and drug interations. If the problem is pain their are many other option but you need a doctor to review them. Cobroxin, 222's, and valaium are a few of the multiude of options.

Personally I take a different path with supplements, juices, meditation, CBT, reflexology and Reiki. (You can PM me for more information.)

On any changes speak to your doctor first. Arm yourself with information from the internet about the medications that you currently are taking and look up your illnesses on something like webMD.

[bookbabe]

Hi Scottie,

You ask an interesting question, "...if we're on painkillers the rest of our lives - so what?" That thought occurred to me as I was writing my post. I guess I don't think there's any hard and fast should or shouldn't - it's what works for each of us. What's relevant to me is, why do I have such a resistance / fear for myself? Does it ultimately help or hinder me?

I know that this constipation has really put me in a funk. I've always managed to get through any bout before with lifestyle changes (diet and exercise) and had taken laxatives only once in my life until now. I hate this. My partner can usually put himself in my shoes at least a little bit but with this, no. He says, "I don't get it: you eat, you poop, you eat, you poop". Ah, the things people take for granted!

Thanks for your feedback on the Amytriptiline. I might give that a try again and see if it makes any difference. I'm not all that impressed with our pain management clinic. Maybe my rheumy can recommend someone else.

Thanks and regards

Hi Bookbabe 

I'm sorry you are having such a hard time. This sounds a bit odd - but does it matter if you become painkiller dependent? I was told it could happen with Tramadol but if we're on painkillers for the rest of our lives - so what? I take slow release Tramadol interspersed with paracetamol. I miss the NSAIDs but I can't take them because of stomach issues.

I totally sympathise about how awful constipation is. I was recently away on a boat with a group of kids from work and was so constipated by the end of the week I didn't know what to do with myself. That was despite taking 2 senna tablets every night and making sure I ate fruit every day. I eventually ate an inordinate number of prunes and spent a very painful two hours in the bathroom but things eventually shifted. I think I will make a doc's appointment though to see if there is anything I can take as well as senna, which used to work, but is now not as effective.

I take Amitriptyline at night for pain. If I don't take - it makes a difference. I only take 10mg but even that makes a difference. I would like to take more - but more is too drying.

Have you tried a pain clinic or anything for advice?

I hope you find relief soon.

Take care - Scottie 

[bookbabe]

Hi Joe,

Thanks for your reply. Yes, I have checked on the antidepressants. The concern here would be Serotonin Syndrome. Wellbutrin and Cymbalta have slightly different mechanisms, I believe, and I am on less than "a clinical dose" on each. However, this lower dose of Wellbutrin is good enough for me with depression, and the dose of Cymbalta does help the muscular pain, too. I would not go up because of the sexual side effects.

I do take Omega 3's at 1000mg/day, Quercitin for sinus support and CoQ10 for my gums. Reiki has been helpful for me in the past on a processing level, and I  am quite familiar with meditation and MBSR, but sometimes I have periods where I just say scr*w John Kabat-Zinn and making space and moving through it all with equanimity and loving-kindness, dammit - I'm here in a body and I hurt and don't want to hurt anymore. Guess that's where I am right now. Part of the process, too.

I am interested in what juices you use and wonder if you have any experience with an Arthritis / Anti-Inflammatory diet?

Thanks so much,
bookbabe

You are taking some large doses of Antidepressents with multiple antidepressents. My first suggestion would be to do a web search of the the medications that you are currently taking and look at their side effects and drug interations. If the problem is pain their are many other option but you need a doctor to review them. Cobroxin, 222's, and valaium are a few of the multiude of options.

Personally I take a different path with supplements, juices, meditation, CBT, reflexology and Reiki. (You can PM me for more information.)

On any changes speak to your doctor first. Arm yourself with information from the internet about the medications that you currently are taking and look up your illnesses on something like webMD.

[Joe S.]

After trying several I just use carrot juice to help replenish endorphins. I have not tried the anti inflamitory diet but my meat intake has dropped and so has my soda intake. My water intake has increased. I have very bad reaction to most common meds for fibro, lupus, and Sjs. I am left finding other options.

[voiceteacher]

Well, I can't help with the pain issues, but as for constipation I am a fan of Mirilax everyday.  I mix it in my morning coffee and after several days, I am now regular - life is good   My colorectal dr said it's fine to take everyday - in fact, it only really works well if you do.  He said it's even ok to take twice a day if necessary.  It's a little expensive but I find it cheaper at SAMS or COSTCO.  Give it a try - - I tried eating all of the fiber in the world - nothing - I eat a very high fiber diet and drink a ton of liquid so it's not that I get bulked up - - some of us just have trouble getting things started - - mirilax is a miracle!!!

Voiceteacher

[BonusMom]

I, too, am a fan of Miralax.  My insurance company continues to pay for the generic brand. As to narcotic pain relievers, they all slow down the digestive system, so it's no wonder that you're constipated. Give Miralax a try and drink lots of water. FYI Miralax takes a couple of days to "work" but it doesn't cause painful cramps or gas.

[Lesleybird]

  You need to try Lyrica or neurontin for pain. It looks like you don't have one in this drug class and they work wonders for pain. Lyrica saved my life. I could not function without it.   Lesley

[EllenS]

Have you ever heard of Relistor?  I blogged about it a while back.  I'll post part of it below.  Hope it's helpful. 

Dr. Goldberg knew that the drug Naltrexone, long used in high doses for drug addiction, might hold the key to his friend's suffering, and he was right. He began by testing derivatives of naltrexone, blocking the body's opioid receptors which gives no place for the opioid drugs to attach and effect the body. In a person using naltrexone, codeine and even morphine have no effect. Addicts take the opioids and no 'high' is achieved.

Naltrexone is also being used off-label in very low doses to treat autoimmune and other disorders. Patients (who are not taking opioid pain relief) take tiny doses of naltexone at bedtime which block the opioid receptors in the brain and gut. Because it blocks the action of the normally present natural chemicals made by the body, but only at night, this action encourages the body to make more of its own endorphins and other chemicals with beneficial effects to the patient.

The drug Relistor is a derivitive of naltrexone called Methylnaltrexone bromide. Taken as an injection up to once daily, this type of naltrexone doesn't cross the blood brain barrier. This means that the opioids remain effective in the brain as pain relievers, but do not effect the rest of the body. In the case of the digestive system, it remains functioning as it normally would without the presence of opioid pain relievers. This means no constipation and no nausea. Other studies suggest Relistor may also be useful in relieving other side-effects including urinary retention, pruritus (itching) and to facilitate feeding in critically ill patients.

You can read the entire post and get links here:  http://is.gd/50PGz  There is an additional post with links here:  http://is.gd/4O6YB

It reads (in part)...

For those on chronic opioid therapy, constipation is often much more than an annoyance - it can radically change their lives. Today there are at least 3 drugs being studied, in trial, or in use that can help this problem, without stimulating the bowel.

Relistor is an injectable drug I blogged about a while back (see Treating Opioid side-effects with a new/old drug) that was recently put on the market to block opioid side effects like constipation. Injections typically are difficult, and acceptance of the drug seems to be slow - sadly, I know of no patients suffering chronic pain related to cancer or otherwise that have been offered this medicine by their doctors, and no doctors knew of it when approached by patients I knew who were interested in it. New oral preparations called ALKS 37 and NKTR-118 may be what it finally takes to get patients and doctors to sit up and take notice.

On October 27, 2009, the company behind the drug ALKS 37, Alkermes, announces the beginning of a Phase 1 clinical study of ALKS 37 specifically for the treatment of opioid-induced constipation.

Like Relistor, the drug blocks opioids from the rest of the body. Since pain is actually a phenomenon that happens in the brain, pain relief needs only happen there. Until Relistor and AKS 37 patients had to dose their entire bodies to get the benefit of pain relief. AKS 37 is intended to allow patients to take their opioid pain relief and block the drugs' actions outside of the CNS. This first study is to see if AKS 37 works for constipation, but it will probably also block other peripheral side-effects as well, and I really look forward to keeping an eye on it to watch how it changes the lives of chronic pain patients!

Additionally, AstraZeneca reported that its phase II study data for NKTR-118 (a related drug with the same ability to block opiates from the rest of the body where it causes side effects) was in re: opioid induced constipation, and looked very favorable.


If you have any questions how this works, let me know and I'll try to answer them.  I'm not a doc, but selfishly, I've had my eye on these for a while now.  Interesting stuff!

~EllenS

[tomsmom]

I can't help very much with the pain issue except to say that high dose fish oil helps tremendously with my inflammation.  I'm talking a minimum of 3000mg daily.  Always check with your doctor as it can have a slightly blood thinning effect.  I may be able to help with the constipation issue.  My son has muscle issues and that greatly impacts his intestines as well.  His intestines don't have the ability to push things through and prunes don't do a thing for him. 
The one thing that does get him to going is Miralax.  It's been a lifesaver.  I mean that.  He almost had to have a colostomy before miralax. 
There are two drugs that can help also; Reglan-- even though it's associated with neurological issues can help.  And the antibiotic Erythromycin.  Both have side effects but can help peristalsis.  I'd advise you to give the miralax a try first.  Right now, miralax is the only thing I use with my son. 
Take care!
Danni