Jump to content



Photo

Trying To Take My 88Yr Old Mother Off Cymgen (Cymbalta)


  • Please log in to reply
56 replies to this topic

#1 Ayla65

Ayla65

    Member

  • Members
  • PipPip
  • 25 posts
  • LocationCape Town
  • why_joining:
    Helping my beautiful mother to get off Cymgen (Cymbalta)

Posted 04 November 2018 - 09:29 AM

Hi 

 

Please could you help me?  My mother was put onto 60mg Cymgen in South Africa (Cymbalta) in 2015 for peripheral neuropathy (no diabetes at that stage) and anxiety.  She was on Lyrica and another medication for anxiety but the Lyrica had made her dizzy from day 1 and  Cymgen was suggested as the perfect solution to peripheral pain and as an anti anxiety medication in one.  

 

She found the 60mg did not take the pain in her feet away and she was then put up to 90mg Cymgen.  This was just before going on holiday with us to the UK (which we now refer to as the holiday from hell).  My mother started to have these profuse sweating episodes during the day and at night (these started days after she started on 60mg).  On her holiday she blacked out twice with no warning signs at all.  She then started with a very sore throat and nose with symptoms which presented as a tonsillitis - something my mother had never suffered from, and the doctor was not convinced and very confused by her symptoms.  After three weeks all of her symptoms peaked as she started with unbearable pain in her head.  My mother never complains about anything and here was this 85 year old woman literally clinging onto her head, in tears, repeating 'The pain, the pain, the pain'.  We had never experienced anything like this ever and it was shocking to see.  Panado eased the pain for a couple of hours only and then it would start again.  Long story short, she ended up in hospital with a very high CRP and ESR count.  None of the top specialists (after two hospitalisations in emergency) could work out what was wrong with her at all.  She was eventually put onto prednisone and that dropped the inflammation which no one could explain.  It was very odd and my sister and I were convinced that it was just too much of a co-incidence that she had started this new drug and then fallen so inexplicably ill.  

 

Three years later and a very long exhausting road of weening off steroids with a re-ocurrance of the 'mystery' condition - this time headaches and random pain anywhere in the body off and on, and periods of complete confusion, episodes in the last year where she would lose her power of speech and ability to walk or mobilize and then become completely unconscious for around an hour every time.  Doctors are totally confused as they have never seen this before.  Tests galore, all vitals perfect when this happens, no dementia, no heart problems absolutely no reason for any of these episodes of confusion, random pain, and becoming unconscious.  Well we have all now pretty much concluded the one reason clearly is Cymgen and we are now starting to ween her off this nightmare drug from HELL!

 

Mum's Cymgen here in South Africa come in capsules (blue and green) and have 569 tiny white balls (of poison) in each capsule.  After reading all your messages etc, I did this calculation but have no idea if this is accurate or the right way of calculating this:

 

So my thinking was:-

 

60mg = 569 balls

therefore

Divide 569 by 60mg = 9.48 balls

therefore

1mg must = 9.48 balls

 

On this calculation I have been taking 5% of 569 balls - which = 3mg out every 2 weeks

So:

1mg = 9.48 balls therefore

3mg that = 28.44 balls.

 

So every 2 weeks I take out another 3mg

 

Week 1 & 2:   Taken out 28.44 balls (3mg) (rounded down to 28 balls) thereby reducing each 60mg capsule to 57mg per capsule

 

Week 3 & 4: Taken out 56.88 balls (6mg) (rounded up to 57 balls) thereby reducing each 60mg capsule to 54mg per capsule

 

 

Week 5 & 6:  Taken out 85.32 balls (9mg) (rounded down to 85 balls) thereby reducing each 60mg capsule to 51mg per capsule.

 

and so on.

 

We are now down to 48mg per capsule.

 

There is definitely a reaction to each drop even at 3mg per 2 weeks after 2/3 days from the new drop.  This takes form of at least one whole day sleeping.  Jumping legs.  A lot of anxiety.  Bad dreams.  Of course a lot of these symptoms have been ongoing over the years since she has been on this drug anyway.  But after a couple of days she stabilises.

 

Are my calculations right?  Am I doing the right thing?  Our doctor is on board but as ignorant as we are as to how to do this properly.  He advises to go as slowly as possible according to her reactions.

 

Should I just keep going?

 

My concern is that the balls themselves may not work in a way which I am wildly assuming i.e. that 1mg is made up of 28.44 in potency.  I am hoping they put the same amount of ingredients in each ball in which case we should be okay.

 

I HATE seeing my most beautiful mother in such an awful state.  What a disgusting criminal thing to do to people.  What a way to spend the ending years of her life when she would otherwise be in a much better state.  So sad. So awful.

 

Thank you for this site!!!!!!!!!

 

Regards

Ayla

 

 


#2 fishinghat

fishinghat

    God-like

  • Active Members
  • PipPipPipPipPipPipPipPip
  • 10,625 posts
  • LocationMissouri

Posted 04 November 2018 - 09:55 AM

Ayla, welcome to the site.

You have done a wonderful job so far. Your math is right and you have come a long way already. One word of warning. As your dose gets down to 10 or 20 mg the effects will get worse. So when she starts to recover a little slower from her drops in dose then you need to slow way down. WAY DOWN. I would recommend about one ball every 4 to 7 days. Once you see how she does on that dose you can adjust up or down accordingly.

Please keep us posted and don 't be afraid to ask questions. We are here to help.

God bless

#3 Ayla65

Ayla65

    Member

  • Members
  • PipPip
  • 25 posts
  • LocationCape Town
  • why_joining:
    Helping my beautiful mother to get off Cymgen (Cymbalta)

Posted 04 November 2018 - 10:04 AM

Hi fishinghat

 

I am actually in tears. Suddenly very overcome by relief and gratitude for you and the site you have created.  Thank you so much.  I feel like we have found the light in what has been a very long frightening (for mum and us all) years.  Thank you so much.  I will refer our GP to this site too.  I believe he will also be grateful for this input.  He is a very good guy, keen to see Mum well.  

 

Bless you too,

Ayla


#4 fishinghat

fishinghat

    God-like

  • Active Members
  • PipPipPipPipPipPipPipPip
  • 10,625 posts
  • LocationMissouri

Posted 04 November 2018 - 10:10 AM

Thank you for the kind words Ayla. It actually isn't my site but was started by a gentleman named Ken (administrator) who still stops by from time to time. I am just like so many of those on this site who have been through this time in torture and just wanted to stay around and return the favor because of all those that helped me through tough times.


#5 invalidusername

invalidusername

    God-like

  • Site Supporter
  • 3,507 posts
  • LocationKent, UK

Posted 04 November 2018 - 01:23 PM

Hi Ayla,

 

Just wanted to also welcome you to the family here. Reading your post, it all seems perfectly plausible, but as 'hat says, do not underestimate the last few mg. I have only been on them for 4 months, and I went 60 to 30, 30 to 20 and 20 to 10 with a break of 2 weeks between each. I've hit the 10 and it has really done a number on me. Fortunately I have the guys here to help me through it.

 

I sincerely hope that between yourself and everyone here that your mother can comfortable come through this.

 

Regarding the potency, unfortunately there is no way of knowing. From a scientific standpoint, you could argue that the coating will substantiate more of the non-potent part of the beads, thus the smaller ones may not be as potent, but short of getting a micrometer and laboring at it, I really wouldn't consider this. What you may loose in potency in one dose, will be made up in a subsequent dose.

 

Bless you for all you are doing for your mother. Thoughts are with you both.


#6 Ayla65

Ayla65

    Member

  • Members
  • PipPip
  • 25 posts
  • LocationCape Town
  • why_joining:
    Helping my beautiful mother to get off Cymgen (Cymbalta)

Posted 29 June 2019 - 07:46 AM

Hi Everyone

 

I am back.  Mum is now down to 34mg a day.  I slowed it right down even at this higher dose to one ball out per capsule per day.  Sometimes staying at the same dosage for a longer period as Mum's reactions are quite severe.

 

Our doctor has suggested that I drop her from 34mg per day to 28mg per day in one go as he feels the difference is not significant between these two dosages?  Is this right?  

 

I was dropping mum by 1mg per day which was 7mg per week.  The reactions became far to much for her to deal with therefore I slowed down to 7 BALLS out per week (one per day).  There are 9.48 balls in 1mg so that is under quarter mg per week.

 

This is taking very long and clearly we want her off this poison as soon as possible.

 

Any advice how to go forward from here.

 

She also has 

 

-  1 x Vit B 12 injection per month

-  Vit C and Vit D every day

-  1 x slo mag (magnesium)

-  10ml Floravital liquid for iron and other supplements

 

 

and recently started her on Omega Fish Oil 5ml per day.  I read the information on it which indicates it could cause dizziness so I got nervous and stopped.

 

Anything else I can give her as we drop?

Should I drop in bigger doses down to 28mg and then go slower from there?

 

Doctor also suggested that if she has a big reaction we should give her valium called Lexotan 3. One table three times a day if necessary.  Its main ingredient is Bromazepam and I am unsure if it is a good idea to

 

Mix Lexotan 3 with cymbalta?  

Or start her on another medication that may make her more prone to falling etc

 

She was on Lexotan years ago for many years and it took us AGES to get her off that so loathe to start it yet  again.  She got very dizzy on Lexotan and it did not do much for her anxiety.

 

Thank you in anticipation

 

Ayla


#7 invalidusername

invalidusername

    God-like

  • Site Supporter
  • 3,507 posts
  • LocationKent, UK

Posted 29 June 2019 - 09:36 AM

Hi Ayla - 

 

Good to see you back. If your Mum has had no adverse reactions to dropping one bead per week then by all means try moving this up to 2 (possibly 3), but for goodness sake, do not drop her as directed by your Doctor. They really do not understand. This process must be done gradually. If you Doctor wants her to move faster and feels she can this needs to be a gradually accelerated process, not a sudden change. 

 

The other vitamins I will let FishingHat comment on as he has a better working knowledge, BUT, the liquid iron. Please make sure that this is taken a good 2-3 hours between doses of other medication and minerals as it absorbs a lot of things taken at the same time (the amount varies on what is taken, but it is a good idea to take all Iron supplements at different times of the day to the rest of the meds).

 

Omega can cause symptoms, but it needs to be tried to be sure. It is a very useful supplement when withdrawing from AD's. You say 5ml, but this depends on how much overall omega this contains, and more importantly how much EPA/DHA this yields. Ideally you need close to 2000mg of combined EPA/DHA to have the intended effects. If the 5ml is more, then you could cut the dose back.

 

The Lexotan also needs FishingHat's consideration, but this will get you started.

 

IUN 


#8 Ayla65

Ayla65

    Member

  • Members
  • PipPip
  • 25 posts
  • LocationCape Town
  • why_joining:
    Helping my beautiful mother to get off Cymgen (Cymbalta)

Posted 29 June 2019 - 09:49 AM

Hello Again

 

Thank you for your response.  

 

I am dropping one bead from each capsule.  Meaning 1 bead per day which is a 7 bead drop per week.  But I then keep her on that dosage usually for 2 weeks or 3 depending on how she reacts.  7 beads per week is only a drop of 1/4 mg.  So if I drop 7 beads per week for a month it will be more or less 1mg a month.

 

Thank you for the advice re IRON.  I will endeavour to do this.  Sometimes difficult as Mum may sleep through an afternoon then go back to bed early etc.  But will work on that - thank you.

 

Omega is 5ml per day which apparently consists of

Omega-3 Fatty Acids 1600mg

EPA 767mg

DHA 530mg

Other Omega - Fatty Acids 303 mg

Since the EPA and DHA and Other Omega's all add up to 1600mg, the first line must be the total of same.

 

I understand the Lexotan 3 is in case she is having severe side effects and is traumatised by them.  But it seems to be give as needed which may add to withdrawal effects if not constant?

 

FishingHat - should you see this - you advised me previously to 

 

As your dose gets down to 10 or 20 mg the effects will get worse. So when she starts to recover a little slower from her drops in dose then you need to slow way down. WAY DOWN. I would recommend about one ball every 4 to 7 days.

 

Did you mean one ball from each capsule daily as I am now doing? Or only one ball every 4 to 7  days which would mean on one day of the week one of the capsules would have one ball less?  Unsure.

 

Deep gratitude

Ayla


#9 invalidusername

invalidusername

    God-like

  • Site Supporter
  • 3,507 posts
  • LocationKent, UK

Posted 29 June 2019 - 12:11 PM

The levels of EPA/DHA are on the very minimum to be effective for withdrawal. Ideally another 1-2ml would be better, but see how she reacts to it. Side effects at that level are fairly rare, but they do occur.

 

Hat meant 1 bead removed every 4 days - that slow. If you were previously dropping 1 bead per day, this would be 25% the drop rate, which when you hit 10mg is about right. 

 

He will be along later and fill in the blanks which I cannot answer...

 

... Man it is hot outside today. 27 degrees. I cannot take this level of heat!!


#10 fishinghat

fishinghat

    God-like

  • Active Members
  • PipPipPipPipPipPipPipPip
  • 10,625 posts
  • LocationMissouri

Posted 29 June 2019 - 01:39 PM

Just incase you didn't know it your drs are idiots. Lexotan is not recommended for use in the elderly as they are very vulnerable to its effects, addiction and their age makes the withdrawal worse. Of course many drs prescribe benzos for help with Cymbalta and other withdrawals. The manufacturers and the FDA recommend bot using benzos for more than 4 weeks due to its addictiveness and it looses its effectiveness. Both clonidine and hydroxyzine are used to treat the anxiety effects of Cymbalta withdrawal and they are not addictive and have no withdrawal. These should be tried first.

IUN's comments on the iron and the Omega 3 are spot on. Other things to help is Benadryl *the one that contains diphenhydramine), L-theanine, Meclizine for dizziness, Zantac for antacid, stomach upset and anxiety, ginger for nausea, sublingual melatonin for sleep,

And...

Dos and Don'ts

DON'T ...
take Omeprazole (Prilosec)
Significant drug interactions.
omeprazole ↔ citalopram
Applies to omeprazole and Celexa (citalopram)
Talk to your doctor before using citalopram together with omeprazole. Combining these medications may increase the blood levels of citalopram and increase the risk of certain side effects, including an irregular heart rhythm that may be serious or life-threatening.
Caution - Omeprazole causes the increased absorbtion of nearly 500 medications. It should NOT be taken with.....
Benzos, Atenolol, Celexa, Lexapro and many other ssri and snri, st. john's wort, etc.
take St. John's Wort, 5HTP, tryptophan, SAMe, Dextromethorphan (a cough syrup/cold medicine) with an antidepressant - Serotonin Syndrome.
Don't take Stimulants (Make anxiety worse)
Caffeine
Over-the-counter cold preparations contain phenylpropylamine and pseudoephedrine*
Sleep deprivation
m*********
Magnesium*
MSG
Alcohol
Stress
amphetamines
ecstasy
nicotine
Ginseng
L-Tyrosine
B Vitamins*
aspartame
Coconut Oil
Taurine
DHEA
Ginkgo
Iodine
Arginine
Sugar
Kava
* - Only some people have this reaction.

Things containing caffeine..
Coffee, Espresso, Cappuccino, some Teas, Low calorie, non-cola soda containing aspartame, Low calorie colas containing aspartame or saccharine, Energy drinks, Some types of alcoholic drinks.
Chocolate ....Baking, Dark, Sweet and semisweet, Pudding, Cereals, Fudge , Milk chocolate, Syrup, Mousse, Soymilk, Fat free cookies, Cookies, Cake, Frozen Yogurt, Ice cream, Frosting, and Shakes .
Java Pops, Chai Mints, Green Tea, Warp Mints, Penguin mints, and cinnamons. Caffeinated Energy Strips, Caffeinated Fruity Lollipops, HyDrive Energy Chews, Caffeinated Nixie Tubes, Foosh Energy Mints, Atomic Energy Bites, Buzz Bites, KickBricks, Energy Chews, Reload Energy Strips, Movit Gummies, Caffeinated jellybeans, Morning Spark, Oatmeal, Sumseeds (caffeinated sunflower seeds), Lightning Rods (beef sticks), Engobi "Energy Go Bites" (crispy snacks), Jolt Gum, Blitz Energy Gum, Think Gum Stay Alert, Vibe Black, Black Go Fast!, Dozens and dozens of herbal supplements.
https://www.caffeine...ffeine-database
List of energy drinks with caffiene. (over 100)

take Depressants (Make depression worse)
Oxalic acid is found in members of the spinach family and cabbage, broccoli, brussels sprouts, chives and lamb's quarters are high in oxalates, as are sorrel and parsley. Rhubarb leaves contain about 0.5% oxalic acid.
Can cause depression, lack of minerals, kidney stones, and more. Cooking does not affect oxalic acid. People with kidney disease, a history of kidney stones or suffer from depression should avoid these foods.
other depressants:
Aspartame
Gluten
High Fat Dairy
Sugar
alcohol
Trans fats
Sodium
Caffiene
Pesticide residue on foods
GHB
exposure to organic solvents (paint, varnish, stains, cleaning solvents, paint thinner, etc).

#11 Ayla65

Ayla65

    Member

  • Members
  • PipPip
  • 25 posts
  • LocationCape Town
  • why_joining:
    Helping my beautiful mother to get off Cymgen (Cymbalta)

Posted 29 June 2019 - 02:08 PM

Hi Fishinghat

 

Thank you for helping out again.

May I check ... all of the above is the DONT'S list.

 

The only DO's are these two parapgraphs:

 

Both clonidine and hydroxyzine are used to treat the anxiety effects of Cymbalta withdrawal and they are not addictive and have no withdrawal. These should be tried first.

IUN's comments on the iron and the Omega 3 are spot on. Other things to help is Benadryl *the one that contains diphenhydramine), L-theanine, Meclizine for dizziness, Zantac for antacid, stomach upset and anxiety, ginger for nausea, sublingual melatonin for sleep,


#12 invalidusername

invalidusername

    God-like

  • Site Supporter
  • 3,507 posts
  • LocationKent, UK

Posted 29 June 2019 - 02:15 PM

"Just incase you didn't know it your drs are idiots"

 

Been a while since you've said that Hat. And for sure not Omeprazole with Citalopram, although my local hospital though it was fine the last time I was in.

 

Yes, you are right about the "don't". This is quite an exhaustive list, there may be one or two exceptions, but given your mum's age, I would err on the side of caution. Diphenhydramine is also very likely to make her drowsy - almost certain, but this is not a problem whatsoever. Just make sure she doesn't take it when she needs to be awake...  or operating heavy machinery :) :)


#13 Ayla65

Ayla65

    Member

  • Members
  • PipPip
  • 25 posts
  • LocationCape Town
  • why_joining:
    Helping my beautiful mother to get off Cymgen (Cymbalta)

Posted 29 June 2019 - 02:25 PM

Mum does take:

 

SLOW.MAG

Ingredients: 535mg Magnesium Chloride, equivalent to 64mg elemental magnesium. Dose 1 a day at night at the same time as her Cymbalta.  

To Treat:  She has taken it for years to help with 'jumpy leg' syndrome.

 

REUTERINA DAILY (chews one tablet after breakfast)

Ingredients: 100 million live, freeze-dried colony forming units 9CFU0 Lactobacillus reuteri Protectis (strain DSM 17938), xylitol and isomalt.

To Treat:  Improve microbial balance in her intestines.  

 

FLORAVITAL (LIQUID IRON AND VITAMIN FORMULA) 10ML A DAY

Ingredients: Roselle flower (Hibiscus sabdariffa), camomile flower (Matricaria recutita), spinach leaf (Spinacia oleracea), Mixture of fruit juice concentrates, grape, pear, blackcurrent juice, cherry, blackberry, carrot.  

Iron (as ferrous gluconate), aqueous rosehip soft extract (Rosa canina) contianing 4% Vit C (L-ascorbic acid), Vit B6 (as pyriodoxine hydrochloride), riboflavin (as riboflavin sodium phosphate), thiamin (as thiamin hydrocholoride), Bt B12 (cyanocobalamine).

 

VITAMIN B12 DAILY ORAL SPRAY 100ug (whatever that measurement is I don't have a key for it on my board)

2 sprays in mouth a day

 

DLUX 1000 Daily Vitamin D 2 sprays in mouth

 

Vitamin C 1000mg in water (Buffered)

 

Omega-3 Fatty Acids 1600mg

EPA 767mg

DHA 530mg

Other Omega - Fatty Acids 303 mg

 

That's it.  Is any of this dangerous?

 

Sorry to pile it on. 

Thank you 

 

IUN hope it cools down for you.  I am in Cape Town.  One minute cool rainy, the next like summer never left.  Our weather patterns sure are changing. 

 

Thank you both x


#14 Ayla65

Ayla65

    Member

  • Members
  • PipPip
  • 25 posts
  • LocationCape Town
  • why_joining:
    Helping my beautiful mother to get off Cymgen (Cymbalta)

Posted 29 June 2019 - 02:41 PM

Is it necessary to use any of these drugs, the ones we can use, if i reduce her dosage really slowly as I am?  If she is drowsy at night she may well fall going to the toilet despite having assistance.  Her legs are already weak.  

 

Sorry to be slow myself.  The tablets she takes at the moment are CYMGEN (CYMBALTA) 60mg here in South Africa.  Those are the ones that have

570 small balls in each capsule.

 

I keep reducing each 60mg capsule instead of swapping to any other make or dosage.  So at the moment I take 245 balls out of each capsule.  Leaving 325 balls in each.  That means she is getting currently 34.28mg per capsule daily.  

 

If I take ONE ball out per WEEK does that make sense and do I take that one ball out on the same day every week every Monday for example.  

 

Maybe you are talking about capsules that have far fewer balls in them?

 

Confused.com lol


#15 invalidusername

invalidusername

    God-like

  • Site Supporter
  • 3,507 posts
  • LocationKent, UK

Posted 29 June 2019 - 03:13 PM

Magnesium can cause undesirable side effects from GI disturbances to depression, but these are usually at mush higher doses. Chloride is OK - farm better than Oxide, but the elemental is less compared to Citrate or Chealate. But if that works fine, stick with it. If he finds her legs need more, switch out to the Citrate first. 
 
You can't really go too far wrong with Vitamin C or B12. You need huge levels before problems generally occur. 
 
Vit D is good providing there is a need for it. Hat will no doubt say the same. Too much can cause issues - especially with the elderly - just monitor her. See;
 
 
That is quite a lot of balls for a 60mg capsule, but slow is always a safe bet. When it comes to the bead per week, yes, same day every week so reduction is uniform. What you might do is gradully ease this period in. For example, take a bead out every 2 days, give it a couple of weeks. Then down to a bead every 3 days etc. If she is stable after the two week mark, she could stay where she is. But in some circumstances, especially with the elderly, prevention is better than cure.
 
Hope this makes sense...

#16 Ayla65

Ayla65

    Member

  • Members
  • PipPip
  • 25 posts
  • LocationCape Town
  • why_joining:
    Helping my beautiful mother to get off Cymgen (Cymbalta)

Posted 29 June 2019 - 03:20 PM

Do you think my aim should be to get her off the CYMGEN altogether or is it just too risky at this age 89years old.  I don't know if staying on with current side effects and the limitation to take any other meds with Cymgen is better than exposing her to withdrawal symptoms.

 

I don't know what is worse.  My heart breaks to see her suffer.  She is such a beautiful soul.  And if she understood what you are providing help wise she would thank you so very much.  x


#17 invalidusername

invalidusername

    God-like

  • Site Supporter
  • 3,507 posts
  • LocationKent, UK

Posted 29 June 2019 - 03:57 PM

This is a difficult one to say. The reasons for stopping Cymbalta are just like for stopping any other AD - it has served its purpose, it does not work, it causes too many side effects or it clashes with other meds or life circumstances. If you feel her life would benefit from not being on them, then this is reason enough. If done slowly, she should not have a problem. But this is your call as the daughter - and what a wonderful job you are doing thus far.

 

Does your mum voice an opinion about it? Or does the decision making stop with yourself?


#18 Ayla65

Ayla65

    Member

  • Members
  • PipPip
  • 25 posts
  • LocationCape Town
  • why_joining:
    Helping my beautiful mother to get off Cymgen (Cymbalta)

Posted 29 June 2019 - 04:48 PM

Hi

 

Thanks for all this.  Mum voices an opinion insomuch as she wants all the side effects of this hideous drug to stop.  She would like to be free of this drug altogether.  At the same time she is frightened when she feels any withdrawal symptoms.  However she does not want the 'episodes' she has been having for years since being on this drug and the other side effects to continue so is prepared to trust me to slowly get her off this drug.  The pain she has in her body seems to get more as she comes off.  Mainly in the shoulders where she has got some problems anyway.  She just never felt that intensity of pain before she went on this drug.  The only thing it did seem to help was the pain she had in her feet with peripheral neuropathy.  Oddly as the drug dosage has got less though she seems to feel much more sensation in her feet and legs now and not the pain she had before.  The higher dosage seemed to numb her feet but take the previous pain away.  The lesser dosage now seems to have enabled her to feel her feet and lower legs better but not pain. I hope it stays that way.  However the pain she has in her shoulders oddly seems to have intensified.  

 

I can't wait for her to be pain free hopefully and off this drug and hopefully have a side effect free rest of life.  That would be joyous and that is her wish too.  

 

I believe for me personally that her consent is an absolute must and her incredible will power the only real thing that can help her.  

 

And this site with all this help and the love of her daughters too.  

 

I love your Jimmy Dean quote. Beautiful.

 

So for now I am going to continue down to 20mg from 34mg SLOWLY and may I check in with you at that point to see what comes next?  

 

Thank you both x


#19 fishinghat

fishinghat

    God-like

  • Active Members
  • PipPipPipPipPipPipPipPip
  • 10,625 posts
  • LocationMissouri

Posted 29 June 2019 - 05:05 PM

Yes Ayla, those are the list of don'ts and only those two paragraphs at the beginning are DOs. Most of the dos we covered with the list of supplements to take.

Like IUN said if the slow mag helps stick with it. If it causes digestive issues (diarrhea) then I would recommend chelated magnesium and citrate second. One thing I am curious about. Slow Mag company advertises 2 products. Both are 143 mg magnesium (elemental) and one has calcium and the other contains vitamin B6. The calcium is fine but I do NOT recommend the B6. Drs recommend that anyone taking a magnesium supplement should have their magnesium checked at least once a year as well as calcium as magnesium will lower your calcium levels.

Nothing wrong with REUTERINA. I would recommend one of the Ultimate Flora probiotics though as it contains around 12 different strains of good gut flora. A more balanced mixture but expensive. I am a firm believer in probiotics.

FLORAVITAL does not seem to be too bad. I am not a fan of these herbal products which contain a dozen or so plant based additives but this one isn't too bad. I don't like the approach of many as they contain cns depressants as well as cns stimulants in the hope it will bring you a balanced mood when all it really does is jerk your body around but the levels in this product seem reasonable, especially the vitamin B6. It is a very popular thing these days to take loads of vitamin B6 and that can be toxic with time. Iron toxicity is one of the most common supplement side effects. Iron can buildup to dangerous levels, damaging the liver and other organs before symptoms are detected. anyone taking an iron supplement should have their serum iron levels checked every 6 months.

VITAMIN B12 DAILY ORAL SPRAY - I have no issue with that.

More to follow...

#20 fishinghat

fishinghat

    God-like

  • Active Members
  • PipPipPipPipPipPipPipPip
  • 10,625 posts
  • LocationMissouri

Posted 29 June 2019 - 05:24 PM



"DLUX 1000 Daily Vitamin D 2 sprays in mouth"

I could not find this product on the manufacturers website, only a vitamin D3 oral spray?! I don't have any problem with D2 anyway.

"Vitamin C 1000mg in water (Buffered)"
Good idea but it can cause an erratic heart beat in the elderly or someone with a history of cardiac arrhythmias.

"Omega-3 Fatty Acids 1600mg

EPA 767mg

DHA 530mg

Other Omega - Fatty Acids 303 mg"

Excellent. You will need twice this amount daily.

"Is it necessary to use any of these drugs, the ones we can use, if i reduce her dosage really slowly as I am?"

Are you referring to the prescription drugs or the supplements?

"I keep reducing each 60mg capsule instead of swapping to any other make or dosage. So at the moment I take 245 balls out of each capsule. Leaving 325 balls in each. That means she is getting currently 34.28mg per capsule daily.

If I take ONE ball out per WEEK does that make sense and do I take that one ball out on the same day every week every Monday for example."

Most brands have around 300 or so beads in them and we recommend 3 beads removed per day. That is 1
% and I personally feel it should be more like 1 bead a day. Given your mother's age and the severity of this darn withdrawal I would like to see her drop one bead a week but that would leave her about 6 years of weaning left. Just watch her symptoms and adjust the wean rate accordingly. The slower the better.

More to follow....

#21 fishinghat

fishinghat

    God-like

  • Active Members
  • PipPipPipPipPipPipPipPip
  • 10,625 posts
  • LocationMissouri

Posted 29 June 2019 - 05:36 PM

"Do you think my aim should be to get her off the CYMGEN altogether or is it just too risky at this age 89years old. I don't know if staying on with current side effects and the limitation to take any other meds with Cymgen is better than exposing her to withdrawal symptoms."

I was thinking about my mom and what would I do. I think given the severity of symptoms that can occur I would probably remove one bead a week for two weeks, if she handles that well then 1 bead removed every 4 days for 2 weeks and if that is OK then remove one bead every 3 days and be happy there if that is OK. At the very first sign of withdrawal symptoms then stop weaning until she stabilizes and then resume weaning at a slower pace.

Pre-existing pain is often worse during withdrawal but typically goes back to precymbalta levels once the withdrawal is over.

Oh Goodness Ayla, you and your family is welcome here anytime. Any questions you or your siblings have we will be glad to answer and if we don't know the answer we will do everything we can to find out. You are always welcome.

#22 invalidusername

invalidusername

    God-like

  • Site Supporter
  • 3,507 posts
  • LocationKent, UK

Posted 29 June 2019 - 05:48 PM

Absolutely - as Hat says, the calcium level is what you want to keep an eye on with the magnesium. The chealated is overall a little better from citrate, but it is a lot more expensive.
 
Glad that Hat agrees with the taper rate as I suggested. The 1 a day is working, so that is good, but as I said, if you did decide between you that slightly fast is needed, then go to 2 beads, but no more. And certainly don't do 1 bead one day and 2 beads the next - this will end in disaster! Again, as Hat and myself agree, always give it AL LEAST 2 weeks for symptoms to a drop to show before making any changes.
 
We are only too happy to help - any time. This must be a lot of stress on yourself as well as your dear mother. You are doing the very best you can in seeking the correct help. Like you say, you want the best for her Winter years and rightly so. This is a time for your mother to relax and reflect on her lovely long life.
 
God bless you both.

#23 Ayla65

Ayla65

    Member

  • Members
  • PipPip
  • 25 posts
  • LocationCape Town
  • why_joining:
    Helping my beautiful mother to get off Cymgen (Cymbalta)

Posted 29 June 2019 - 06:25 PM

Okay Hat, so sorry as I need to spell this out to get it right.

I am currently taking 245 beads out of each capsule.  Her dosage is therefore 34.28mg per day. 

 

...so, going forward...

I would probably remove one bead a week for two weeks,

Do you mean one bead from each capsule for two weeks?  

So I would be removing 246 beads every day instead of 245 beads every day therefore dropping her dosage to 34.17 per day.

 

if she handles that well then 1 bead removed every 4 days for 2 weeks

Then all being well I will remove 247 beads from each capsule on Mon, Tues, Wed, Thurs dropping her dosage to 34.07mg

Then 248 beads from each capsule on Friday, Sat, Sun dropping her dosage to 33.96?

 

Am I understanding this correctly?  

 

So sorry I am struggling to get it.   :blink:


#24 fishinghat

fishinghat

    God-like

  • Active Members
  • PipPipPipPipPipPipPipPip
  • 10,625 posts
  • LocationMissouri

Posted 29 June 2019 - 06:25 PM

"The 1 a day is working, so that is good."

IUN, she is dropping 1 bead a week not a day.

#25 fishinghat

fishinghat

    God-like

  • Active Members
  • PipPipPipPipPipPipPipPip
  • 10,625 posts
  • LocationMissouri

Posted 29 June 2019 - 06:28 PM

You got it Ayla. That is correct.

#26 Ayla65

Ayla65

    Member

  • Members
  • PipPip
  • 25 posts
  • LocationCape Town
  • why_joining:
    Helping my beautiful mother to get off Cymgen (Cymbalta)

Posted 29 June 2019 - 06:29 PM

So how I do it currently is:

 

245 beads out of each capsule.  Her dosage is therefore 34.28mg per day. I give her the identical amount every day for 2 weeks (7 days Monday through to and including Sunday x 2 - 14 days).

 

If all goes well I take another bead out, so it would then be 246 beads out of each capsule.  Making every day for the next two weeks 34.17mg per day and so on.

 

It's just her Doctor suggested I drop faster from her current dosage of 34.28mg per day to 28mg per day.  Which is too radical I am sure and will not do.  

 

I will try Hats suggestion and see how that goes which would be slightly faster than I am doing currently. 


#27 Ayla65

Ayla65

    Member

  • Members
  • PipPip
  • 25 posts
  • LocationCape Town
  • why_joining:
    Helping my beautiful mother to get off Cymgen (Cymbalta)

Posted 29 June 2019 - 06:34 PM

then remove one bead every 3 days and be happy there if that is OK

 

So Hat would I just keep going removing 1 x extra bead from each capsule and give for 3 days. Then on day 4,5,6, another extra bead from each capsule and so on and keep going like that until I reach 20mg per day and slow down after that or just keep going at 1 bead drop every 3 days until 0 beads?

 

When you say every 3 days does it mean same dosage for days 1,2 and 3.  And the next drop in dosage day 6,7,8. The next drop day 9, 10, 11 and so on?   


#28 invalidusername

invalidusername

    God-like

  • Site Supporter
  • 3,507 posts
  • LocationKent, UK

Posted 29 June 2019 - 07:02 PM

So what Hat is suggesting is yes, to remove the extra bead following this period.

 

Three days is the point at which levels start to balance due to the shorter half life and withdrawal symptoms will start at this point. 

 

Thank you Hat for pointing out my confusion here. I am still thinking of erring on the side of caution with regards to giving sufficient time for the withdrawal symptoms to show up. Would it not be better to initially start with 5 days and then move to 3 days rather than make the jump from 7 to 3?

 

Ayla with regards to when to drop less, this would be a case of keeping an eye on the symptoms and making the judgement. Some will be fine until they reach 10mg before any difference begins to show up. So it is not a case that you put the brakes on at 20mg. However, should you get to 10mg on the 3-bead suggestion I would again stress the point of prevention rather than cure and reduce the frequency regardless.

 

So if the 5-day frequency works, then the 3-day, I would keep an eye on that until you reach the 10mg mark and then wind it back a little. But should she show signs of not coping with the 3-day BEFORE the 10mg mark, then you will need to bring it back earlier, but I would like to think she will be fine until the 10mg point.

 

Hat will be in the land of nod, so we'll hear from him tomorrow. But I'd like to get his opinion on the above, and then I think we have our way forward.


#29 Ayla65

Ayla65

    Member

  • Members
  • PipPip
  • 25 posts
  • LocationCape Town
  • why_joining:
    Helping my beautiful mother to get off Cymgen (Cymbalta)

Posted 29 June 2019 - 07:17 PM

Thank you IUN. 


#30 fishinghat

fishinghat

    God-like

  • Active Members
  • PipPipPipPipPipPipPipPip
  • 10,625 posts
  • LocationMissouri

Posted 30 June 2019 - 07:50 AM

"So Hat would I just keep going removing 1 x extra bead from each capsule and give for 3 days. Then on day 4,5,6, another extra bead from each capsule and so on and keep going like that..."

You got it. IUN is right, I would use this pace (if well tolerated) down to 10 mg and then go slower.



0 user(s) are reading this topic

0 members, 0 guests, 0 anonymous users