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FireBird

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Hello,

 

This is my first post. I am so grateful to have found this site - In the middle of withdrawal hell, I found you all and was so relieved to find that I was not out of my mind at all.

 

I am a 67 old woman living with breast cancer that has spread to both my lungs. I was diagnosed in 2009. This is my second bout with cancer, having had a lumpectomy and radiation in 2001.

 

I also suffer from Fibromyalgia, Osteo and Degenerative Arthritis, Lymphodaema in my left arm. I have also being plagued with Mixed Tumours since 1968 and have had several surgeries for this.

 

Since my Cancer diagnosis, I have felt like I slipped through the crack with respect to support for my cancer. I was no one of the lucky people who was able to carry on after an appropriate time off work. I was very ill following radiation and was left with a huge sore under my breast that took some time to heal.

 

I started to feel anxiety and panic shortly following the Cancer and sometimes would feel so low that I would find myself sitting in the same position for hours, with the remains of toast and tea on the table with no real recollection of having prepared and eaten it.

 

I recently retired and in the process, had to change my health insurance provider, the major change being that instead of paying only paying a percentage of the cost of medication, to having to pay the full cost, then submitting my invoices to get my deduction. In addition, my financial status was drastically reduced.

 

The upshot was that I found myself having to decide between Cymbalta 60mg for pain and Letrozole 4.5mg for Cancer. I chose to buy my Cancer medication.....talk about been between devil and the deep blue sea!

 

Within one day, I was having practically all the bad symptoms described for withdrawal. Brain zaps, dizzyness, lightheadedness, nausea, vomitting, intense pain and burning...among others.

I was able to afford the Cymbalta yesterday, and although I would like to start to taper off, I would like to hear from anybody in the same situation as I am.

 

My Meds:

 

Letrozole - 4.5 mg for Cancer - 2009 (till I die or a cure is found)

Cymbalta - 60 mg. for pain - 28 Jan, 2012 -

Crestor - on and off - off now.

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Hello,

 

This is my first post. I am so grateful to have found this site - In the middle of withdrawal hell, I found you all and was so relieved to find that I was not out of my mind at all.

 

I am a 67 old woman living with breast cancer that has spread to both my lungs. I was diagnosed in 2009. This is my second bout with cancer, having had a lumpectomy and radiation in 2001.

 

I also suffer from Fibromyalgia, Osteo and Degenerative Arthritis, Lymphodaema in my left arm. I have also being plagued with Mixed Tumours since 1968 and have had several surgeries for this.

 

Since my Cancer diagnosis, I have felt like I slipped through the crack with respect to support for my cancer. I was not one of the lucky people who was able to carry on after an appropriate time off work. I was very ill following radiation and was left with a huge sore under my breast that took some time to heal.

 

I started to feel anxiety and panic shortly following the Cancer and sometimes would feel so low that I would find myself sitting in the same position for hours, with the remains of toast and tea on the table with no real recollection of having prepared and eaten it.

 

I recently retired and in the process, had to change my health insurance provider, the major change being that instead of paying only paying a percentage of the cost of medication, to having to pay the full cost, then submitting my invoices to get my deduction. In addition, my financial status was drastically reduced.

 

The upshot was that I found myself having to decide between Cymbalta 60mg for pain and Letrozole 4.5mg for Cancer. I chose to buy my Cancer medication.....talk about being between devil and the deep blue sea!

 

Within one day, I was having practically all the bad symptoms described for withdrawal. Brain zaps, dizzyness, lightheadedness, nausea, vomitting, intense pain and burning...among others.

I was able to afford the Cymbalta yesterday, and although I would like to start to taper off, I would like to hear from anybody in the same situation as I am.

 

My Meds:

 

Letrozole - 4.5 mg for Cancer - 2009 (till I die or a cure is found)

Cymbalta - 60 mg. for pain - 28 Jan, 2012 -

Crestor - on and off - off now.

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Welcome, Fire Bird!

 

I'm so sorry you're carrying such a heavy load. I hope we can help you, and I know you'll meet lovely, caring people here for support.

 

First of all, I'm so glad you were able to get the Cymbalta. You absolutely cannot cold turkey off that. And of course you must get your cancer meds.

 

A couple of initial thoughts re getting the meds you need --

 

Have you tried contacting the manufacturers of the meds to see if you qualify for any programs they might have to provide these meds for those who can't afford them? Given your having cancer, I would think that might make you eligible.

 

Is there any social service organization that can help facilitate that or advocate for you? Or could your doctors' offices assist with it?

 

And have you told your doctors about the dilemma? Maybe they can get manufacturers' samples from the pharma reps, that they can give you.

 

I'll try to think of more, and I'm sure you'll hear from many more people here, though maybe not until the morning given the hour now. But keep checking this thread, and again - welcome!

I was "TryingToGetWell" (aka TTGW) on paxilprogress. I also was one of the original members here on Surviving Antidepressants

 

I had horrific and protracted withdrawal from paxil, but now am back to enjoying life with enthusiasm to the max, some residual physical symptoms continued but largely improve. The horror, severe derealization, anhedonia, akathisia, and so much more, are long over.

 

My signature is a temporary scribble from year 2013. I'll rewrite it when I can.

 

If you want to read it, click on http://survivingantidepressants.org/index.php?/topic/209-brandy-anyone/?p=110343

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  • Moderator Emeritus

Hi FireBird,

I am so sorry to hear about your situation - i think Brandy has good suggestions - it seems very unfair that you need to make decisions based on what your insurance will pay. I thought Canadian insurance was better than that.

Started in 2000 - On 150mg most of the time, (but up to 225mg at highest dose for 6 months in the beginning)
Reduced off easily first time - but got depressed (not too much anxiety) 6 months later
Back on effexor for another 9 months.
Reduced off again with no immediate w/d - suddenly got depressed and anxious ++ again 3 or 4 months later.
Back on effexor - this time for 3 years
Reduced off over a month - 6 weeks later terrible anxiety - back on.
Rinse and repeat 4 more times - each time the period before the anxiety comes back got shorter and shorter
Jan - July 2012 75mg down to 37.5mg;, 8/3/12 - 35mg. 8/25/12 - 32mg. 9/11- 28mg, 10/2 - 25mg, 10/29 - 22mg, 11/19 - 19.8mg; 12/11 - 17m,
1/1- 15.5mg; 1/22 -14mg, 2/7 14.9mg, 2/18 - 17.8mg - crashed big time: back to 75mg where i sat for 2 years....

4th  March 2015 - 67.5mg;   31st March - 60mg;  24th April - 53mg; 13th May - 48mg; 26th May - 45mg;  9th June - 41mg; 1 July- 37.5mg; 20 July - 34mg; 11 August - 31mg; 1st Sept - 28mg;  1st Dec - 25.8mg;  28th Dec - 23.2mg; 23rd Jan-21.9mg; Feb 7th- 21mg; March 1st - 20.1mg, March 30th - 18mg

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Hi FireBird,

 

I'm so sorry to hear about your situation. It's awful that you have to choose between cancer or w/d! Surely there must be a way for you to obtain both? Brandy had some good suggestions. I hope one of them works for you.

2003-2011: Paroxetine,Citalopram,Effexor; Aug/Sept 2011: Effexor to Mirtazapine; Oct 2011: C/T Mirtazapine back to Effexor; Nov/Dec 2011: Fast Tapered Effexor - w/d hell; Feb 2012: Reinstated Effexor 37.5mg; June 2012: Dropped to 35.6mg; Jan 2016: Propranolol 2.5mg per day for general anxiety; Feb 2016: Finasteride 0.25mg per week to slow hair loss; 18th May - 8th June 2019: Started Vyvanse 7.5mg and increased by 7.5mg weekly to 30mg (lowest “therapeutic” dose for adults).; 21st June 2019 - 12th July: Cross tapered from venlafaxine brand Rodomel to Efexor (1/4 > 1/2 > 3/4 weekly before ditching Rodomel); 13th July 2019: Cut Vyvanse dose to 15mg; 15th July 2019: Akathisia returned after years of being free; 16th July 2019: Went back up to Vyvanse 30mg

Supplements: Omega-3, Vitamin D, Zinc, Phosphatidylserine 

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Hi Firebrand,

 

What an awful position for you to be in. I hope Brandy's suggestion works for you. Will keep you in my thoughts. Caro

1995 Post Natal Dep - Zoloft ?dose (as well as 5mg valium and sleeping tablet) Quit after a couple of months.

1998 PND - Effexor-xr 150mg. Tried reducing but failed due to heightened anxiety. Quit cold turkey when pregnant with 3rd child.

2003 PND again on Effexor-xr 150mg. Numerous times tried to wean.

2006 75mg.

2010 Weaned off too fast as per dr recom 75mg every 2nd day etc. was Effexor-xr free for 3 months. Reinstated 75mg

1/6/12 = 72 mg

2/7/12 = 69 mg

16/7/12 = 67.5 mg

1/8/12 = 60 mg

19/8;12 = 52.5 mg

4/9/12 = 45mg

2/10/12 = 37.5 mg

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  • Moderator Emeritus

Hi FireBird,

 

Welcome to the forum. I'm glad you found your way here but so sorry you had the need. The people on here are the best in the world IMHO. You've gone through so much and I'm so sorry about your situation.

 

I'm going through WDs too, as are many on the forum. It is very difficult at times so I can't imagine having the extra burdens that you are having to deal with. I will have you in my thoughts and prayers.

 

Love and hugs,

 

Tezza

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  • Administrator

Hello, FireBird, welcome to our community.

 

I agree with Brandy, see if you qualify for any of the pharmaceutical manufacturers' assistance programs.

 

How are you feeling since you started taking Cymbalta again? Did the withdrawal symptoms go away? How many days did you not have the Cymbalta?

This is not medical advice. Discuss any decisions about your medical care with a knowledgeable medical practitioner.

"It has become appallingly obvious that our technology has surpassed our humanity." -- Albert Einstein

All postings © copyrighted.

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Hello to all you wonderful people. Thank you for so many messages conveying your good will and hope for me.

 

This is so fuzzy, I was without Cymbalta for about 3 days, and tonight I will be taking my fifth capsule.

 

Strange to say, one of the things that didn't bother me at all during my 3-day withdrawal was that my knees weren't so spongy feeling and painful to bend........Now that I am on again, I can feel the joints complaining and stiffening as I take a step down or up. I have to hold on so as not to fall as my knees don't hold me up very well.

 

My head is better, but now I am bound and determined to get off this drug...none of my pain was as bad as those feelings.

 

As for my medical insurance stuff, I have made inquiries and found out that since April, I could have gotten my Cancer medication for free, this decision made by the Manitoba government to reflect the position of many other provinces. My oncologist should have advised me and made the paper work....So that is a blessing for sure. Again, falling through the cracks!

 

Now, for the hard part. How do I start to taper off the Cymbalta? what do I do with the bits that I remove from the capsule. Can they be saved for later on or do they have to be destroyed? I would appreciate any advice.

 

Also, will this post be sent to the taper off forum? (Just so I know where to look next}.

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I'm so glad to hear you can get your cancer med for free!

 

(Any chance you can get reimbursement for the money you laid out for them while eligible for free meds?)

 

(Even if not, at least you won't have to make the unthinkable choice of cymbalta or cancer meds! Thank goodness!)

 

Others can advise you better on the particulars of cymbalta tapering, but I did want to say that I found that when I went off paxil, some physical problems I'd never attributed to paxil lessened or went away, but I still should have tapered very slowly off the paxil because my too-fast paxil withdrawal caused long-term problems that far exceeded even the worst physical problems I'd had while on the med.

 

I hope that the return of some of those side effects will decrease as your body readjusts to it, but I do know that sometimes there's a tradeoff. At least by finding out that certain problems were caused by the med, you'll know that by tapering off it the recurrence will only be temporary til you safely taper off.

I was "TryingToGetWell" (aka TTGW) on paxilprogress. I also was one of the original members here on Surviving Antidepressants

 

I had horrific and protracted withdrawal from paxil, but now am back to enjoying life with enthusiasm to the max, some residual physical symptoms continued but largely improve. The horror, severe derealization, anhedonia, akathisia, and so much more, are long over.

 

My signature is a temporary scribble from year 2013. I'll rewrite it when I can.

 

If you want to read it, click on http://survivingantidepressants.org/index.php?/topic/209-brandy-anyone/?p=110343

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  • Administrator

Your post is in the right place. Your Intro topic is the place to talk about your particular situation, the ins and outs of your taper, reactions, etc.

 

(The Tapering forum is for more general conversation.)

 

Do you feel better from the withdrawal symptoms now that you're taking Cymbalta again?

 

Well, it sounds like you've always had an adverse reaction to Cymbalta -- that feeling in your knees. Or maybe it's conflicting with one of your other drugs.

 

See this info about tapering off Cymbalta http://survivingantidepressants.org/index.php?/topic/283-tips-for-tapering-off-cymbalta-duloxetine/

 

You can open the capsules and take some of the beads out. Take the same number out every day, gradually increasing the number, to taper. (Put the extra beads in a medicine bottle for later.)

 

I might start with taking 10 beads out in a week or so, after your nervous system stabilizes from the cold turkey.

This is not medical advice. Discuss any decisions about your medical care with a knowledgeable medical practitioner.

"It has become appallingly obvious that our technology has surpassed our humanity." -- Albert Einstein

All postings © copyrighted.

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Thanks for your replies.

 

I will be sending my invoices to my insurance provider this week and so get my reimbursement percentage for all the medication I purchased since April. Those funds will be put aside to pay for subsequent purchases.

 

Altostrata, thank you for the info about tapering off. I will start to do so next week.

 

Until then, my best thoughts to everyone on this site.

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  • Administrator

Please check in with us and let us know how you're doing.

This is not medical advice. Discuss any decisions about your medical care with a knowledgeable medical practitioner.

"It has become appallingly obvious that our technology has surpassed our humanity." -- Albert Einstein

All postings © copyrighted.

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My Meds:

 

Letrozole - 4.5 mg for Cancer - 2009 (till I die or a cure is found)

Cymbalta - 60 mg. for pain - 28 Jan, 2012 -

Crestor - on and off - off now.

 

You've gotten great advice but lertozole can make you have mood side effects. It is stopping your body from producing estrogen, one of the "good feeling" hormones women need. Obviously you have an estrogen positive cancer.

 

I've had to take it for fertility and was always glad when I got off of it.

 

Just wanted to let you know, as Mds will often not tell you the med side effects, especially onco docs.

 

They just worry about providing the gold standard, not quality of life.

 

Hope this helps!

Years:150mg Wellbutrin (to concentrate) 20-30 mg Celexa (rumination).

CT 8/2011 during a pregnancy attempt under MD orders. (Idiot!!!) Pregnancy hormones allowed it.

Felt great with 6 mg of melatonin per night to sleep plus preggo hormones-didn't last:(

Best time of my life. Botched IVF in Dec 2011.Stress.

Bone chilling exhaustion and told to go back on celexa and wellbutrin.

4/9/2012 Back on celexa wb for some relief, wb gave me heart palps so dropped and only need 6.6 mg celexa and 1/4 melatonin pill...IMPROVEMENT because my doses are much lower!

REMEMBER to get your thyroid and hormones checked/out of whack ones can appear LIKE MOOD DISORDERS!!

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  • Administrator

FireBird, are you taking fish oil? See http://survivingantidepressants.org/index.php?/topic/36-omega-3-fatty-acids-fish-oil/

 

Also, you might have a vitamin B12 shot, before you start tapering, while your nervous system is relatively stable. A lot of people have subclinical B12 deficiency, and it sounds like you've been under a lot of physical stress that might deplete it. You can get it from a GP, it's very inexpensive.

 

B12 deficiency can cause a lot of "psychiatric" symptoms, plus affect the overall functioning of your body.

This is not medical advice. Discuss any decisions about your medical care with a knowledgeable medical practitioner.

"It has become appallingly obvious that our technology has surpassed our humanity." -- Albert Einstein

All postings © copyrighted.

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FireBird,

 

Just wanted to say hello and offer my support. I'm sorry you've had so much thrown your way but glad to hear that you are able to get your meds now. What a horrible predicament to be in.

 

I'm glad you've found your way here.

 

B

Pristiq tapered over 8 months ending Spring 2011 after 18 years of polydrugging that began w/Zoloft for fatigue/general malaise (not mood). CURRENT: 1mg Klonopin qhs (SSRI bruxism), 75mg trazodone qhs, various hormonesLitigation for 11 years for Work-related injury, settled 2004. Involuntary medical retirement in 2001 (age 39). 2012 - brain MRI showing diffuse, chronic cerebrovascular damage/demyelination possibly vasculitis/cerebritis. Dx w/autoimmune polyendocrine failure.<p>2013 - Dx w/CNS Sjogren's Lupus (FANA antibodies first appeared in 1997 but missed by doc).

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  • 3 weeks later...

Hello Everybody,

 

Thank you all so much for your support and comments...Time seems to have gotten away from me....can't believe it's almost 4 weeks since I came onsite and 'let it all out'.

 

I have taken the advice given and so, here is my report on tapering off from Cymbalta:

 

I started by removing 25 of the little pellets. I did this for three days;

I went on to removing 30 for three days, then 35 for three days, 40 for three days or so; I removed 45 a few days ago and today removed 49 - (getting a little chicken, here).

 

So far, I have had a few headaches, some slight buzzes and dizzy spells, but am functioning well, and my mental health is good.

 

Tomorrow, I hope to take 'the big leap' and remove 50 pellets - yeah for me!

 

My wrists and thumbs are still hurting quite a bit and as usual, with the changing season, be it sun/rain, summer/fall, the arthritis stuff is continuing - pain one day, bad pain another, some days none at all- just like life, eh?

 

Today I read Kian's story, being drawn to it because one of my nephews is named Kian. So much to deal with...and here I am feeling like it's all me.....

 

To all of us who are willing to take a chance on ourselves and our own good judgement instead of that of the good doctors and manufacturers who would have us all under their thumbs - I say Right-On.

 

Will try to post more often if time does not run away from me again.....

 

 

My Meds:

 

Letrozole - 4.5 mg for Cancer - 2009 (till I die or a cure is found)

Cymbalta - 60 mg. for pain - 28 Jan, 2012 -

Crestor - on and off - off now.

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Hello Everybody,

 

Thank you all so much for your support and comments...Time seems to have gotten away from me....can't believe it's almost 4 weeks since I came onsite and 'let it all out'.

 

I have taken the advice given and so, here is my report on tapering off from Cymbalta:

 

I started by removing 25 of the little pellets. I did this for three days;

I went on to removing 30 for three days, then 35 for three days, 40 for three days or so; I removed 45 a few days ago and today removed 49 - (getting a little chicken, here).

 

So far, I have had a few headaches, some slight buzzes and dizzy spells, but am functioning well, and my mental health is good.

 

Tomorrow, I hope to take 'the big leap' and remove 50 pellets - yeah for me!

 

My wrists and thumbs are still hurting quite a bit and as usual, with the changing season, be it sun/rain, summer/fall, the arthritis stuff is continuing - pain one day, bad pain another, some days none at all- just like life, eh?

 

Today I read Kian's story, being drawn to it because one of my nephews is named Kian. So much to deal with...and here I am feeling like it's all me.....

 

To all of us who are willing to take a chance on ourselves and our own good judgement instead of that of the good doctors and manufacturers who would have us all under their thumbs - I say Right-On.

 

Will try to post more often if time does not run away from me again.....

 

Firebird,

 

Wow, after reading your story, I was grieved and feel for you. Nice to hear you have a nephew named Kian. I like the name.

 

I am struck with awe and compassion as I read of what you are having to go through now. I hope with all my heart that you make progress, no matter how slow it needs to be and that you get back to a better life, someday....but until then, you will be in my thoughts. Take care of yourself...

 

Kian

Klonopin 21 years (did an 8 month taper off of 2mg's then had to reinstate @ 7 months out)Current Dose is 1.5mg daily.

Dilantin 19 years @ 300mg (did a 6 month taper...had a few doses since then but off it now)Off Since 1.5.2012

Remeron Started 3/30/2012. Helped me for 2 months, not so sure what it is doing to me now. Still take 15mg @ night

 

**Currently not stable and trying to "stabilize".

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  • Administrator

Firebird, good to hear you're doing well.

 

So, you are reducing by 1 more pellet every 3 days. Don't go any faster than this.

 

Do you still have the buzzing and dizzy spells when you reduce?

This is not medical advice. Discuss any decisions about your medical care with a knowledgeable medical practitioner.

"It has become appallingly obvious that our technology has surpassed our humanity." -- Albert Einstein

All postings © copyrighted.

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Hello Everyone,

 

Said I'd try not to let time run away from me but here I am again a whole week later.........

 

Just an update since 20th, I did take 50 pellets out on the 21st, and, talk about mind over matter, I felt so good, so 'normal', so free - I didn't take any Cymbalta for four days, then slight buzzes, dizzyness so I went back on.

 

Two days ago, I decided to take the bull by the horns and took out an arbitrary 50% from the capsule......I didn't count them, I didn't spend a lot of time thinking about it, I just put the excess in my little bottle and took the capsule.

 

I missed yesterday, and today, there is just a slight tingle and a bit of heaviness in my head......

 

Surprisingly, My left wrist is worse.....it actually feels like fractured inside. I am wondering if I hurt myself and was so caught up in the withdrawal from the time when I didn't have any Cymbalta that I didn't realize it. I'll be going to see my doctor and get xrays tomorrow. Will post the results.......

 

I wonder, now, how many of us hurt ourselves and don't realize it because we are so doped up on nasty meds or going through withdrawal because of the nasty meds........

 

Anyway, as usual, my spirit is good, still able to laugh with and at myself, still waiting for a cancer cure, and moreover, freedom from Cymbalta.

 

 

Altostrata, I read your post today, and feel kinda bad for not slowing down some more, but I think feeling my wrist today has put be back on track - going to be patient with myself.....

 

My good wishes and compassionate thoughts to all.

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  • Administrator

Good to hear you're doing all right.

 

Please please please be more consistent with your dosing. Taking a small dose every day is better for your nervous system than skipping doses.

 

You might not feel it now but you might feel it later. It's like Humpty Dumpty. Once you break it, you'll have a hard time putting your nervous system back together again.

This is not medical advice. Discuss any decisions about your medical care with a knowledgeable medical practitioner.

"It has become appallingly obvious that our technology has surpassed our humanity." -- Albert Einstein

All postings © copyrighted.

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