221 replies to this topic

[invalidusername]

"It seems as though the low WBC count and high lymphocyte count, which initially alarmed me greatly, was a lab error."

 

That is great news - glad to hear it!

 

"but I just want to get done with this whole thing already!"

 

Be very patient with this. very patient. It will make all the difference. Listen to your body and not your emotions.

 

"is there any advantage to taking 2 beads every 12 hours, instead of 4 beads every 24 hours?"

 

==================================================================================

No - no advantage as you will not reach peak level, and as Cymbalta has a half-life of around 5-6 hours, this would not compound from one dose to the next, so it would be comparable to a drop. So, in short, stay as you are as it will mess up the blood levels that your body has been used to. 

 

[EDIT] Please see posts below. I was thinking of Lyrica when I wrote this! 

[fishinghat]

"....is there any advantage to taking 2 beads every 12 hours, instead of 4 beads every 24 hours?"

Absolutely. This will provide a more stable blood chemistry level, less daily fluctuation up and down.

Don't underestimate the importance of the ast and alt being elevated in your blood test and your difficult time with Cymbalta withdrawal. These enzymes have a primary role in detoxing the Cymbalta and its decompensation products. Normally these values will return to normal on their own after a couple momths off the Cymbalta.

[fishinghat]

Just saw your post IUN. You should note that Cymbalta has a half-life of 12 hours and therefore it will have a significant effect on the next dose.

If taken every 24 hours..
Dose to max when taking the 4 beads
At next dose the blood levels will be down 75%. A fairly large swing.

If taken every 12 hours....

The dose will only reach have of max when taking 2 beads compared to 4.
50% will still be in the system when the next 2 beads is taken 12 hours later.
A 50% swing is better than a 75% swing as well as a 50% lower max blood level when taking 2 beads every 12 hours.

[invalidusername]

Oh for goodness sake!! I was thinking of Lyrica/Pregabalin (as this is on my mind for the obvious reasons at the moment)!!!

 

I am so sorry everyone!!! Thank you Hat for pointing this out. Not to make excuses, but the right answer was in my head!

 

I will edit so as not to confuse people in future...

 

What a do-nut....

[fishinghat]

Trust me IUN. I have made worse mistakes than that. It is so hard to focus when you are going through what you are experiencing.

[invalidusername]

Thank you - makes me feel better!

[Vinpin]

HI IUN - no worries, please, about your first post! I knew the half life was 12 hours ..... but still wasn't sure if changing to 2 beads every 12 hours made sense. FH has set us straight!!! What would we do without him!!!

 

-VinPin

[Vinpin]

HI FH,

 

As always ..... thanks again for your great guidance.

 

My ALT enzyme was 55 (norm range 10-49) and AST enzyme was 34 (norm range 0-34). It is a great relief to hear this could be due, at least in part, to the Duloxetine withdrawal. I'll continue to hope for good news come Wednesday when I get the results.

 

So it is true, then ..... keeping a more consistent level of the Duloxetine would be better at this critical time, and can be accomplished by going to 2 beads every 12 hours, then. Its a done deal, then - that's what I will do. Today (Day 11 on 5 beads) was a good day for me in general, so I will probably move forward with the 2 beads every 12 hours strategy starting Tuesday AM, unless I regress before Tuesday.

 

One more question FH: I will need empty capsules for the additional dosage PM every day, to put 2 beads into. I remember hearing drug stores sell them ...... but, is there anything specifically I should look for when purchasing them from my local drug store???

 

Thanks FH!

 

-VinPin

[fishinghat]

Almost always they are gelatin capsules and not acid resistant capsules but that is OK. Not all pharmacies will have the capsules. It is mostly the compounding pharmacies (Those that make custom blends of medication) that carry them. You can also get htem on line at places like Amazon.

[invalidusername]

The term used for the capsules is "enteric", which refers to the acid-resistant coating. I found using that as a search term brings up more results.

 

Let us know how you get on with the 12/12 4 beads. You've been through a lot and done well. Wishing you strength for this next part...

[Vinpin]

Thanks IUN!

 

Question for everyone (it was embedded in my longer post ..... but am isolating it here so as to get specific responses....)

 

I'm strongly considering accelerating the weaning process over the next few weeks/months. I completely understand that is going to bring more intense withdrawal effects during this time - especially with more significant and frequent brain zips, since I'm already experiencing very slight, mild versions of the zaps doing what I've been doing). But ..... my specific question is whether this acceleration will help me get to the finish line earlier? Timing wise, I would like to visit Europe this July, and would like to have this whole ordeal behind me - even if the time between now and say, April, is very tough. Do I improve my chances of feeling better come July, if I accelerate the weaning off, and come completely off say, by April 1st?

 

Thanks for everyone's input!

 

Best, VinPin

[invalidusername]

Hi Vin...

 

OK - now obviously this is going to be very much subjective so I can only answer this from a perspective of scientific base - most of the theory you will already be aware of, so I will cut out the unnecessary as you are clearly a very clued up chap.

 

When the Cym is in full swing, along with the reuptake of serotonin, the neopinephrine is being triggered. The brain is aware of this so it attempt to counteract by blocking off the receptors it would normally use so as to make up for the "imbalance" it is noting. When you reduce your dose, obviously these levels will drop and the brain will be readjusting to the new levels, BUT the receptors that were once blocked are discarded, as you can't unscramble an egg! New ones are therefore produced to restore balance. These take time, so obviously by going slower, you are giving your brain the chance to catch up with the imbalance it notices. 

 

Here's the punchline. Your brain will only go at a fixed speed during this time. It will be hindered by stress from everyday circumstances where the chemistry is again disrupted and has to again re-evaluate what is the "norm". No-one can say quite how long it will take. If you have a really good stretch over the next few weeks, dare I say you could cope with an accelerated pace, but we never know what may occur. It will take only one downturn and it will set you back further than if you had gone slower.

 

Your choice as to how to proceed. But weighing up the risks and being aware of what to look out for will keep you vigilant. You always have the option of going back if absolutely necessary.

 

Apologies if you read most of this thinking "yea yea, I know that IUN", but for the sake of others who read this in the future who are possibly a little less learned in the science, I want to be thorough in my explanation.

 

IUN

[invalidusername]

Sorry - so to answer the question of whether it will be quicker... in theory, the brain cannot allow for an imbalance of zero beads before it gets there, but lets say it needs to allow for an increase of 10% at 2 beads, and then another 15% at zero. Yes, you can go directly to the 25% and it will start there. You are allowing the shortcut here, and it is likely to carry with it more side effects. As to whether it will be quicker I state the subjective argument again as to how circumstances turn out.

 

I am sure 'Hat will have something to say about this, and he will have the experience of others on the forum who have done this so can give you a better odds, if you will.

 

Speaking for myself, I accelerated the last 10mg (NOT my choice) and I can for sure tell you it was worse. Whether or not it sped the process up, I do not care, as I have been through hell. As anyone here who has been through it will tell you - most of all our Hat'ster - I would go a few weeks/months longer at a bearable withdrawal than less time at unbearable.

 

Either way, I wish you well VinPin. 

[fishinghat]

"whether this acceleration will help me get to the finish line earlier?"

It will be quicker but much much more intense. Most who have tried this approach wind up giving up and going on another ssri/snri.

"Do I improve my chances of feeling better come July, if I accelerate the weaning off, and come completely off say, by April 1st?"

No, given the severity of your withdrawal so far I would say that you have at least 6 1o 10 months left without before you START to see improvement. Just an educated guess you understand. My option would be to hold a steady dose from now to July 1st and give your body time to heal. Then go on the trip. As you well know he trip will be very exciting and stressful as well as wonderful. You don't want any relapses on this trip.

[invalidusername]

I remember a good quote that was coined when I first joined the forum (I forget the member), but I feel it is very fitting here;

 

"Withdrawal is a marathon, not a race"

 

[KathyInFL]

Vinpin, I agree that you should not accelerate your taper, in fact, I'd stay at the same amount for a few months before and during your trip. I did that last summer when I had a new job, and it was the best thing I did. Unfortunately the job was about the worst one I've ever had in my life.          

 

I believe the Hat is fond of saying "Slow but steady wins the race". 

[invalidusername]

"Slow but steady wins the race". 

 

One of the classic 'Hat taglines

[fishinghat]

When things are on a rollercoaster of emotions I also like the line...

"Steady by jerks like a frog hopping" or "slow but steady like a toad walking". I told you all I was really really old. lol

 

[KathyInFL]

When things are on a rollercoaster of emotions I also like the line...

"Steady by jerks like a frog hopping" or "slow but steady like a toad walking". I told you all I was really really old. lol

 

 

I wanted to like this, but my 2 or 3 likes for the day are gone! Gail, I need to buy some of yours!

[Vinpin]

Hi again!

 

To my kind responders on this thread, IUN, FH and KathyinFL:

Thanks so much for your insight. You all speak from experience, so it means a lot to me. Although it's easy enough to reduce the Duloxetine dosages more quickly.... it seems as though the withdrawal itself cannot be accelerated (thx IUN, for explaining that the brain's receptors need time to catch up, and therefore, going off faster doesn't really buy anything).  And, even though each of your independent comments are of value to me .... they mean even more together since there seems to be an overall consensus, at least on this thread .......

 

The Latest with me (and my new concerns):

The 2nd draw from my Hematologist confirms that the ALT & AST liver enzymes are above normal (thanks FH, for commenting that this could be Duloxetine related). HIV, HPV, Hep B & Hep C tests were newly run on the 2nd draw. All tests came back negative .... except the Hep B e-Antigen test - which came back positive. Somewhat contradictory, two other Hep B tests (surface antigen and core antigen) came back negative. It's not only alarming, but was also very confusing to me ..... because I connect Hepatitis B with risky sexual behavior, IDU needle sharing and blood transfusions..... and I know with 100% certainty it cannot be due to any of these. HOWEVER..... I followed up on FH's comment and checked the web to see what I could find on Duloxetine and Liver function. Lo and behold ........ there are indeed some cases of Hepatitis B in patients newly on Duloxetine, and no history of risky sexual behavior, IDU needle sharing, blood transfusions and no self-reported alcohol consumption. So, that means (as rare as it may be) ..... there's at least some evidence that Duloxetine could cause Hep B.

 

So now ..... my hematologist is rerunning the Hep B Antigen test, and is expecting it to be negative. I have an appointment with him on Wed 1/23, to discuss what could very well be another positive test result. I'm hoping that, if indeed infected, it is acute and treatable.  Hopefully only the e-antigen for Hep B being positive is good news, and it could be treated before the virus intensifies. Also, will probably elect to have a Liver UltraSound - we talked about the possibility of this last time. I think I would need to seek out a GI doc or Hepatologist, if there is liver damage. Hoping that anything liver damage I have is reversible.....

 

So now, this puts the withdrawal in a different light. If the Hepatitis B is confirmed, wouldn't coming off of Duloxetine sooner allow my liver to detox sooner, and possibly even allow me to avoid the more significant effects of Hepatitis B? I was all set to go at it slower ... but now this makes me feel like I need to come off more quickly, even if I have to endure more severe withdrawal symptoms.

 

With all this going on - the withdrawal is actually coming along OK. After three weeks on 5 beads, with the last week being decent, I decided to move to four beads. Yesterday, I transitioned over from 5 beads once a day to 2 beads twice a day. I bought the gelatin caps from a local compounding pharmacy .... no problem there. We will see how I progress .....

 

Any further comments appreciated ...... thanks for listening!!!!!!!

 

-VinPin

[fishinghat]

"..... there's at least some evidence that Duloxetine could cause Hep B."

Actually the Cymbalta can damage the liver and that reduces its resistance to Hep B.


"Hopefully only the e-antigen for Hep B being positive is good news, and it could be treated before the virus intensifies"

Actually the antigen only means you have been exposed to Hep B at some point and you may not actually have the disease however the dr will probably error on the side of caution and start therapy if it indeed comes back positive again.

With liver damage from Cymbalta, if you don't have symptoms then the damage is usually reversible.

"wouldn't coming off of Duloxetine sooner allow my liver to detox sooner, and possibly even allow me to avoid the more significant effects of Hepatitis B?"

Yes, coming off quickly will reduce stress on the liver and be safer but it would be harder on you mentally. Going on another ssri/snri would help you mentally but would present the same risk for further damage. I believe the Hepatitis positive is in error. The elevated ast and alt are common with Cymbalta withdrawal and are seldom (but possible) associated with actual liver damage.

[Vinpin]

Hi FH,

 

Thanks for your lightning fast reply. It is very considerate of you to offer some timely feedback (as usual ......)

 

So ..... I am still really confused, unfortunately, when you say:

 

"Actually the Cymbalta can damage the liver and that reduces its resistance to Hep B".......

 

If that's the case (which I believe....not doubting you......), then wouldn't there still need to be some way the virus got transmitted to me, that has nothing to do with the Duloxetine??? (Like sexual transmission,  needle transmission, blood transfusion, something else???). I'm clueless as to what that might be! So ..... it seems if I can't conceive a transmission method .... then maybe it is a false positive after all.....

 

I hope it is. I'm scared about having chronic Hep B, especially over the long haul. I'm battling the Duloxetine withdrawal, Vitamin B12 & D deficiencies etc, and the two liver enzymes - that's enough!!!!

 

I will keep my fingers crossed that there's no Hep B at all.

 

-VinPin

[fishinghat]

"then wouldn't there still need to be some way the virus got transmitted to me, that has nothing to do with the Duloxetine??? (Like sexual transmission, needle transmission, blood transfusion, something else???). I'm clueless as to what that might be! So ..... it seems if I can't conceive a transmission method .... then maybe it is a false positive after all....."

I agree and also think it is probably a false positive.

[fishinghat]

FYI
It is possible to get Hep B (but rare) from someone elses saliva such as sharing a drinking glass, bottle of soda, etc.

https://www.webmd.co...s-hepatitis-b#2
"Only 5% to 10% of adults and children older than 5 who have hepatitis B end up with a chronic infection. "

[Vinpin]

Hi all .... update on me:

 

Relieved to receive confirmation that I DO NOT have Hepatitis B. In hindsight, I should have never even been worried about it in the first place..... I don't partake in any such risky behaviors for something like that. It would have been a real freak occurrence to have picked it up (e.g. by Fishinghat above .....). But that is behind me now.

 

Still have high AST & ALT liver enzymes, and I'm trying to find a Hepatologist (liver doctor) to advise on that. Sounds like one of the next steps might be an Ultrasound of my Liver, since many liver issues can be diagnosed using Ultrasound imagery. I may have Non-alcoholic Fatty Liver Disease, and also, FH has mentioned that metabolizing the Duloxetine over years takes a toll on the liver .... so maybe a combination of eating better and being almost off Duloxetine will help.

 

Regarding the Duloxetine withdrawal, I'm currently down to 4 beads a day. As per FH and other forum members, I am splitting it up into two doses of 2 beads every 12 hours. Started out OK last week, but this week I am feeling more of the flu-like symptoms across the board. It is truly amazing to me that if I go 2-3 hours past when I am due for my next dose, the symptoms intensify like clockwork. This happens in the AM if I sleep a little late. I guess that's why they call it an addiction.....

 

Today, I am depressed about how long its been that I have been at the weaning (one full year now) Still, when I am more logical and less emotional, I realize that I have made progress -- all on my own (along with my forum buddies here.....), but with little guidance from a doctor. A year ago, I was on a 30mg capsule and in Feb dropped to a 20mg. Now, I am down to four beads, which I estimate to be about 1mg. The flu-like symptoms take a toll on me, but overall I am finding a way through this mess. I can't wait to be well enough to pursue so many things in my life I have "on deck" . I suppose that kind anticipation and hope for the future may have helped you guys that have been through this withdrawal, too.

 

Thinking about how I will tackle the drop to 3 beads in 1-2 weeks (hopefully). Considering either 2 beads around 8am and 1 bead at 11pm ........ or, 1 bead every 8 hours (maybe something like 8am, 4pm and 11-12pm). Any thoughts on this you guys???

 

Best,

 

Vinpin

[fishinghat]

It is great news about the Hepatitis. I would do the ultrasound but I bet the findings will be minimal. Probably 10% fat infiltrated or so with little to no damage. I can hope anyway. lol

I would definitely do the one bead every 8 hours.

[KathyInFL]

Vin, so glad you don't have hepatitis! C has been linked to liver problems, I hope since you are only on 4 beads that your issues will improve.

 

 

It is truly amazing to me that if I go 2-3 hours past when I am due for my next dose, the symptoms intensify like clockwork. 

 

 

I had a host of problems with C, weight gain, brain zaps, memory loss BUT the biggest reason I wanted to get off the C was what you said above that I just quoted. I got withdrawal symptoms if I was a few hours late in taking the C. I didn't want to be on a drug that was as powerful as this. I could not imagine what the C was doing to my brain if it caused such intense withdrawals in a matter of hours! 

[invalidusername]

Glad to hear your news Vin - and my thoughts remain as before. Listen to your body with regards to the reducing. We cannot say anything further than that. Only you know what is best, but just don't rush this last bit - you have come so far... well done my friend.

[Vinpin]

Hi all,

 

Update on me ---

 

Going through a very rough couple of days. Started 3 beads a day (1 bead every 8 hours) one week ago. Was OK the first few days, but have gone progressively downhill from there. Worked out too hard yesterday at the gym .... and that completely did me in. Symptoms include the usual suspects .... headache, aches and pains, dizziness, chills and lethargy.

 

But also, this past week, I am also trying to endure a level of irritability I have never experienced before. Everything and everyone bothers me. I tend to be the introverted type normally ..... but now, I just want to lock myself away and be left alone. I go to see my Psychotherapist for our normal weekly appt tomorrow, but not sure what good that will do. 

 

Also experiencing very bad Hyperacusis (extreme noise sensitivity and pain in both ears) - the worst I ever had. This condition caused me to go on permanent disability 6 years ago - no cause of it has ever been identified by a doctor, nor have I received any purposeful relief from something I take or do. I have it all the time .....  but now it is even worse, and intensifies whenever my withdrawal symptoms pick up.

 

I am so down - I want so badly to "live my life", and I just cannot ...........

 

-V

[fishinghat]

Your getting close Vinpin. This is the tough part but these symptoms will fade with time and you can wean more. Are you taking anything for the withdrawal symptoms?