9 replies to this topic

[sharon123]

Hi

My 81 year old father is diabetic, has declining kidney function and was put in Duloxetine by an Endocrinologist for neuropathy and mild depression. He has been on 30mg daily for about a year.

 

Due to severely high blood pressure (and nausea, racing heart rate of a night, severe tiredness, urinary infection, severe dry mouth, inability to clench a fist due to swollen hands), plus it wasn't really working for either depression or neuropathy anyway, he decided to not continue the duloxetine. The original prescribing dr can't be contacted so we'll have to deal with GPs unfamiliar with the drug's effects.

 

He has not tapered off, and it's about day 13 or 14 of stopping cold turkey - but since day 9 he could barely lift his arms due to the shoulder, arm and wrist pain. The pain hasn't worsened, but hasn't improved much either.

 

He is not experiencing brain zaps etc that others discuss, and is only having suicidal thoughts NOW because the goddamn muscle pain is so severe and not improving much.

 

We'll have to go to emergency if this continues, and we'll stop the rosavestatin in case that's doing something, but does anyone have any words of wisdom?  The pain and muscle stiffness he has now has only commenced since stopping duloxetine, but my father is reluctant to get a prescription for a compounding chemist to create a custom tapering dose now, if it's going to prolong the agony any longer. Over the counter pain killers don't work, and since we've had so many problems due to prescription med. combinations as it is, don't want to add more pills into the mix. The pain is not the usual neuropathy, so things like alovera gel don't relieve the pain either.

 

I've read that improvements are more likely to happen from about day 18 - anyone with the same muscle/joint issues, primarily in the shoulders and arms, and know what to do about it?

 

Thanks -

Sharon

 

 

[fishinghat]

Hi Sharon

 

Cymbalta is a strong SNRI which means it regulates the neurotransmitters serotonin and noradrenaline. With the lack of medicine the nerves are having to readjust to controlling these two. It has been quite common for our members with arthritis, neuropathy fibro and other painful conditions to have a strong rebound in pain with withdrawal. Certainly the cold turkey of Cymbalta is not a wise choice. The FDA and manufacturer warns of the risk of suicidal thoughts, seizures and many more complications. I would recommend immediately reinstating at 30 mg and stabilizing. Once he is stable then he can begin bead counting. This is a process where you count the number of beads inside a capsule and drop by about 1% a day. For example, if there are three hundred beads in his capsule then drop by 3 beads a day. So remove 3 beads the first day, 6 the second, 9 the third, etc. Do not underestimate the withdrawal from this drug, especially at his age. Many of our members have taken as long as 1 year to come off this medicine. Please let us know if there is any way we can help or if you have any questions.

[fishinghat]

Oh, by the way, Cymbalta is not recommended for patients with kidney issues.

[sharon123]

Yep - I was frightened before and now I'm totally shit-scared (pardon the French). I knew you couldn't stop duloxetine suddenly, but I would have done the one tablet every 2 days/3 days thing instead, and only became aware about the bead reduction method a bit too late. My father insisted on not getting another script, and still says he does not want to resume duloxetine at all.

 

Unfortunately, my Dad has painful muscle shrinkage of his left hand rendering it unusable, which started while STILL ON the Duloxetine, and may have been excascerbated by a combo of multiple conflicting blood pressure meds, (which a kidney specialist since took him off). The kidney specialist we saw last week did NOT mention he shouldn't be on duloxotine, I'm in Sydney Australia, and not sure if the generic duloxetine we have here is made in Australia or whether it's all made in the US, and all has the beads in the capsules.

 

If resuming duloxetine shoots my father's blood pressure back up, brings on the racing heartbeat, brings back the urine infection, and increases his blood sugar, and reduces his kidney function further, I doubt we've even GOT a year to taper down -

 

Given he's been off his 30mg daily dose for over 14 days, can we assume that he will feel PAIN RELIEF on resuming the duloxetine, given he's been off for this time?  Will the muscle shrinkage of his hand return to normal, or does that sound like permanent nerve damage that's now irreversable ? He's not concerned about seizures etc, just the severe muscle pain. Thanks, we'll get to a GP but I need to hear others' experiences

[fishinghat]

"Will the muscle shrinkage of his hand return to normal, or does that sound like permanent nerve damage that's now irreversable ?"

 

It sounds like it to me, especially given his age. You have to realize about these drs is that when a warning is issued (here in the USA)about a medicine neither the FDA or manufacturer is required to notify the drs. I guess they are suppose to learn about it by metal telepathy. lol 

 

You have a couple choices here.

 

One dr recently published an article about his treatment of Cymbalta removal. As symptoms got real bad he would give his patients a few beads in an empty capsule. Just enough to take the edge off and help the patient deal with the withdrawal symptoms.

 

Another choice is to go on an alternate med such as a benzo, clonidine or hydroxyzine. The benzos are very addictive though while the last two do not have a withdrawal. All anxiety medicine calms the person and as such will lower the blood pressure. Even some of the OTC (over the counter) stuff used to treat anxiety has that effect.

 

Your father seems like a tough person. He may be able to weather the storm but I hate to see people suffer too. One thing I was thinking is that most members by day 14 were having bad crying spells, mood swings, anger, fear, panic, etc. If he is not showing any of this by now then it is a good sign that he might be able to deal with this.

 

Just food for thought.
 

[gail]

Hi Sharon,

I didn't answer your post as I was a bit bewildered about what was going on and also I didn't really know what to answer as your dad is almost 80.

But and but, I agree with our counselor, if a small dose here and there can alleviate the pain, I am all for it.

And, I think that your dad can tolerate the cold turkey method. He seems strong of mind, and real conscient. He does not want to reinstate the Cymbalta, ok!

A few alternatives here, but I would go with what your dad wants. Unless anxiety or depression should arise, then this is another matter.

Bottom line, do whatever your dad wants! I say this because he is sane of mind. That is what my conscience says! Come by whenever you need to, you are welcomed! Just remember that we are not God!

[sharon123]

Hi

Thanks for your replies - the few alternative meds you've suggested do seem like a good fallback, and the 'few beads' in an empty capsule method makes sense to me, and hopefully would be less brutal than returning to the original 30mg daily dose. I can't tell my Dad what to do, that's for sure, but these sound like good options for me to gently suggest, to him and the GP.  He is becoming more agitated, and the muscle pain is certainly adding to the agitation - 

 

Diabetes-related chronic conditions are tricky I know - my Dad's main worry, (and mine) is the muscle shrinkage of his hand, and severe stiffness and pain in his shoulders and elbows, as he didn't have those symptoms a month ago - 

 

I know most of the experiences on this forum relate to the depression/anxiety side effects, but if anyone does have similar anecdotal experiences with rebound neuropathy, pain and muscle shrinkage, and if you really think that I can't make the muscle aches & shrinkage any worse by doing the extremely low dose, ie a few beads in an empty capsule - I'd like to hear about it, and I'll try to convince my Dad to do it - guess I'm needing some reassurance, as my father and I are totally on our own with this  - thanks again - 

[fishinghat]

Sharon, I might suggest that you do a search on this site for muscle pain and joint pain. You will find a large number of posts. Most have this strong rebound effect which fades as the withdrawal fades. How long that takes varies a lot from per son to person. It can take as little as a couple months to a year or more depending on how sensitive the person is to this medicine. Please keep us posted on his progress as that is how we all learn about coping with this drugs effects.

[DrugOrPOISON]

I have been taking Cymbalta/Duloxetine for about 7 or 8 years.  Last year my psychiatrist raised me from 60 mgs. a day, then to 90 and now I am taking 120 mgs. a day.  With each increase in the dose I began experiencing worse side-effects within days of taking the increased dose.  I thought they would subside, but they never did.  I now have SEVERE JOINT PAIN and bad muscle pain as well.  There are days I can barely walk.  With my last increase in Duloxetine, within two days of taking it, i would wake up several times a night.  My hands would become so numb that they actually HURT!   (I know that sounds contradictory, but it happens).  Because of all of the pain throughout my body, I have not had a decent night's sleep in over a year because the pain keeps waking me up.

 

I also have pain in my knees, hips and shoulders and recently it has been spreading to my back and shoulder blades and the collar bone. Now it has spread to my jaw joints and the pain is radiating across my face and into my head leaving me with many headaches as well.  There are also days when I feel sick as if I have been poisoned!   This so-called medication has RUINED my life!  

 

I tried reducing the dose my SLOWLY counting out the beads and discarding them.  By the time I  got to reducing each capsule by 10 only beads, my mind was filled with nothing but thoughts of suicide (I take this for severe depression).  I had to return to the full dose again for fear that I would commit suicide, so I am STUCK on this horrible poison and living a miserable life!  From the pain alone, on really bad days, i still do consider suicide to end the pain.  Yes, it IS that bad!

 

I do have to do a lot of reading here, but I just don't think there are any real answers for me.

[fishinghat]

There is hope DOP.

 

First of all you did the right thing about reinstating the Cymbalta.

 

Cymbalta only has a 50% success rate in treating most pain issues. Secondly, if it doesn't work a significant number of people develop the symptoms that you complain about.

 

We have had members with 350 beads in a capsule that wound up being so sensitive to the withdrawal they could only drop 1 bead a day. She did wind up getting off the medicine in less than 2 years (occasionally stopping to stabilize before continuing). By the way, how many beads in your capsules and are they all the same size beads? How long did it take yu to drop the 10 beads?

 

Another choice is to cross taper from Cymbalta to Prozac, Zoloft or Lexapro which have less of a risk of suicide and suicide ideation. You still would have to taper of them but the success rate is better than for Cymbalta. A cross taper is where the dr sets up a schedule of slowly reducing your Cymbalta over a 4 or 5 week period and increasing the new med slowly over the same period.

 

There are meds that can be taken to help with the withdrawal but they are only minimally effective on the suicidal tendencies.

 

Let us know if we can be of any help and together we can handle this. It will be tough and require a great deal of patience but it can be done.