peggy: 13 years of Effexor

[peggy]

thanks Karen, yes, i have gone a long way - but i always seem to stumble when i get down under the 20mg mark.  

go on to youtube and find some of Jon Kabat Zinn's meditations.  The body scan is a good way to start. I am committing to daily practice from here on in.

 

Alto, that is a good idea to halve the dosage with capsule and liquid to swap over... just got to find someone to make me a liquid!

[Fresh]

Hi Peggy ,   sorry to hear you've hit a snag , good plan to consolidate for a month from the sound of it.

 

I've been taking 25mg pristiq for a few weeks , and I only had 10mg capsules.   I found I could take the top off a capsule , tip out 5mg worth of dust onto the scale (i.e. 0.187mg) and pop the top back onto the cap.  

Easy-peasy.

Two compounding pharmacies I use are KingswayCompounding(email:compounding@kingswaycompounding.com.au)

and Randwick Day/Night (email: randwickdn@nunet.com.au).

You'll need to email them with your request and see who has the best quote , like your own private silent auction  .

If you're taking 28mg now (or 37.5?), it will be loads more cost effective for you to get a tonne of 10mg capsules (you'll need 3 a day) and remove 2mg to make your own 8mg caps , and decrease like that.

 

Darn those bouncy little beads . . . hope you're feeling a bit better today.

[peggy]

I have been unable to find a phy to make a liquid from the capsules.  I did speak to a couple of compounding pharmacies that could compound the effexor into smaller doses but when quizzing the pharmacist discovered that they are allowed through their quality control to have up to 3% margin of error in their dosages.  I think that's a pretty big margin...

 

So, for the moment i will continue to count out - whilst i am on about 31.5 i think i can handle some variation. In the meantime i will continue to look for a more accurate scale - i wish the beads weren't so bouncy and difficult to handle!!

[calithebold]

Hi Peggy

I am not looking forward to finding somewhere to do my dose changes when I start to get down to that end of the taper. I found two compounding pharmacies that are close to me, not for now but for then and I would also be worried about such a big margin of error when we need to be so precise. I hope you can sort it out soon. 

Sarah

[AliG]

 Hi Peggy ,

 

I hope you sort it .  Looking forward to meeting you , soon  .  

[peggy]

feeling solid again  on about 28mg, thinking i will not take another cut for a few more weeks.  And then it will only be about 5% so will just take out beads.  Wanting to make sure all is stable in the Peggy household over the silly season.  

[peggy]

Had a little accident yesterday.. went on a hike up a mountain that is quite steep and rocky.  They have erected posts and chains on the really steep bits that i don't usually like to use - most times you can traverse a little to reduce the steepness.  Anyway, coming down is more dangerous and i try to go slow - i felt myself slipping so grabbed the chain - however it was actually the pole and unfortunately it had an exposed  bolt that caught the solid gold bangle that i had around my wrist.  I don't know what exactly happened but i felt shearing pain as i landed on my bum.  And looked at my hand that was swelling rapidly. I could see two cuts - one that looked a little white (bone?) - and i looked up to the pole and there was my bangle dangling on it - so my hand has been wrenched through the bangle attached to the pole. 

 

Had to walk a long way back down and out to the car - hubby took me to a local hospital for an X-ray. 3 hours later i was seen.  I major soft tissue damage and probably just a small chip on one bone, but the Dr said i have really thin bones - that shocked me as i am very active.  I will follow this up with my GP as I don't want to develop osteoporosis.  I am aware that SSRI's can cause osteoporosis... all the more reason to be more diligent and careful in my slow march down with my effexor dose.

 

i just restarted HRT last week with bone health in mind.  

 

I have a very swollen sore hand - the Dr put me on antibiotics to prevent infection getting to the bone - i think i might go see my local dr today anyway - i didn't mention to the dr at the hospital that i saw something white...when i took the bandage off this morning, the dressing underneath was quite bloody. 

 

Such a klutz!

[Fresh]

OOps - a- daisy . . . you poor chook , that's so sad!

 

Are the antibiotics ones you've had before?  Better to use one that's been okay previously than a new one.

The bone density thing is easy - you lay on your side and they take scans to assess your bone density.

 

Looks like the universe wants you to take it slow.  I hope you heal quickly.

 

[peggy]

Thank you Fresh...  I have taken the AB before..

 

I went to my local Dr and she called the radiology dept for the X-ray report and they reported no fracture and normal bone density   .  The Dr mentioned that she would be surprised really if i didn't have good bone density given the amount of soft tissue damage that occurred and no fracture.   I have pulled muscles and stuff all the way up my arm to my shoulder.

 

I am having a nice quiet afternoon with my dog on my feet on my bed watching a TV series (with the aircon on)

[Karma]

Hi Peggy,

 

I'm sorry you had an accident and injured yourself.  Keep an eye on the antibiotics.  I've had certain antibiotics result in uncomfortable symptoms while on Effexor ... so if something comes up it may be the antibiotics and not your progression off of Effexor.

 

Did you ever find anyone to make a liquid solution for you?  I have had great success with a liquid solution made here locally by a compounding pharmacy.  But through the thick of it I was only reducing by about 5%.  I'm actually able to go at a higher percentage now that I have reduced down to 6 mg.

 

A quiet afternoon with a dog on your feet watching a TV series sounds like a good way to begin the healing .

 

Karma

[peggy]

thank you Karma!

 

i will keep an eye on any new symptoms whilst on the AB - i have taken this one before with no problems

 

I have not been able to get a liquid made - we cannot get immediate release effexor in australia - we used to be able to but not any more.  I think i will start next time with only a 5% reduction -and count OUT the beads - it is a waste of beads, but i think i will just discard them for the moment. I am currently taking out 30 beads of the 37.5mg capsule (there are about 125 beads in a capsule) -  next time i drop I will go with 35 beads.  

[AliG]

Hi Peggy ,

 

Sorry to hear about your little accident. I'm happy that you didn't have a fracture. You might want to look into some weight training , as insurance against osteoporosis, in the future. I'm glad you came out of it intact. It could have been a lot worse. You were lucky.  Please take it easy for a while. Rest and recuperate.

 

Ali

[peggy]

so, i am slowly, slowly creeping down my dose.  3 days ago i went to around 18mg.  I am ridiculously tired - but that is mainly because we have been babysitting our 2 year old grandson whilst mummy and daddy were  off having another baby!  5 am wake ups, with no lying in bed having a cup of coffee and waking up slowly! - it's go, go, go right from the moment they open their eyes - it's no wonder we have babies when we are younger!

 

seriously though, i think i have had an upset tummy for a couple of days and my feet are burning more than usual.  trying to really get into my physical body to sense if there are any changes and how long they take to settle.  

[Fresh]

Welcome back peggy , I'm hot on your tail on 21mg , lol.

 

Congrats on the new grand-baby!

 

Remember the Coles Greek Yoghurt for burning feet. I'd honestly love to know if it works for you!

 

[peggy]

oh Fresh - I won't be slathering yogurt on my feet - i would never get my dog off the bed!

[peggy]

so, 4 weeks on around 18.5 mg.  I started to halve each capsule rather than counting out what i thought was the correct amount - i forgot again about the wide variations in the number of beads per capsule.

 

This drop has been a bit more tricky than previous ones - i think i will stay here for a while.  My feet continue to burn - not really noticeable during the day as i am out and about, but particularly noticeable in bed.  A few times i have had twitchy feelings in my muscles during the night also which i figure maybe variations in my dosages - i am definitely going to get a good scale - even trying to count beads and divide the capsule in half i think is causing day to day variations.

 

And my mind has been a bit cloudy - by this i mean that i feel stuck in my head - i am stuck with the awareness that i am withdrawing rather than it being in the background - and then i will go awhile without having it in my mind - so weird because i won't know that it isn't in my mind until i remember that it wasn't in my mind 

[buggedout]

Good progress Peggy, I hope you feel better soon.

 

One thing I noticed helped me ... was to only count how much I was putting IN to each (empty) capsule rather than counting what I take out of the full capsules. This is a sure way to leave zero error and always have the same exact amount in each capsule. Seems the lower you go, the more important that becomes. You should be able to get a good scale on Amazon for a reasonable price.

 

The liquid thing sounds way too complicated for me, but I agree the beads are a pain in the butt! One thing I did was use a piece of black felt cloth I got from wal-mart for like a dollar and the beads stand out and do not bounce around when dumped onto it. I just use the empty capsule to scoop up the beads and it goes quite quickly! I spend more time with the scale it seems.

[peggy]

Thanks bugged- I was doing the counting out too- and the counting in- but with my effexor capsules each bead is a different SIZE so it really is not possible to be entirely sure without a scale- I think on higher doses for me it's not so crucial..

[peggy]

oh dear - peggy has crashed again... had a bad day anxiety wise yesterday - tried to distract with some success - i was trying to just wait for the clouds to part and not engage in the anxiety - it got worse by evening and when i went to bed the knot in my stomach was very strong - and as i tossed and turned the adrenaline waves started to  hit - the crushing tsunami type waves.  I endured them for a while - they would come in escalate and then subside back to the dull ache of anxiety, only to be quickly followed by another - i got up and had a shot of vodka!!!! - I never do that - i don't even LIKE vodka, but i thought it would take the edge off and let me sleep - which it did - for about 3 hours.

 

So, after i woke at 4am -not really cortisol spikes, just anxiety and crushing depression again I decided to updose.  I just don't think i can do it - i spent a bit of time reading journals yesterday and dear Songbird hit me hard - and then Mapleleaf girl too - long, slow careful tapers with the prescribed holds and bang, crash.  I know we are all different and just because something happens to one person it doesn't automatically mean it will happen to someone else - i realise there are wide variations in experience.  However, I know from my experience that going up little bits doesn't help - i tried that back in 2013 and ended up in a terrible mess - I want to avoid that again.  

 

I will updose to 30mg - i know that is probably overkill and hopefully i am not sensitised - (i have never been in the past so i don't see why this should be different), but i think the faster you stabilise the better for your nervous system.

 

I am truly starting to believe that i will be one of those that won't come be able to come off 

[ChessieCat]

Hi peggy,

 

Are you currently taking 18 mg (I'm going by your signature) and planning on updosing to 30 mg???  If so, that seems incredibly risky to me.  And just because it worked for you previously doesn't necessarily mean it will work for you again.  You were on 31 mg mid August last year and have tapered gradually since then so your brain will have adapted to not having as much of the drug during that time.

 

Maybe try and hold out a bit longer?  Drinking alcohol won't help your brain and you may find that over the next few days you might be reacting to that.  Perhaps you can hold on your current dose for a bit longer, or if your symptoms are unbearable maybe updose a small amount, hold for a while and then drop down by smaller amounts.

[peggy]

thanks Chess cat - know its risky - but back in 2013 i did the updose a little and wait for a few weeks and then again twice and it didn't work - i just got sicker and sicker.. and i do know the dangers of the alcohol - it was only a mouthful..

[ChessieCat]

A few of the members have mentioned that when they start feeling worse they realise it is time for another drop in dose.  Unfortunately I can't remember their names.  I'll ask the other staff and see if they know.

[peggy]

i don't really think its that - this is about the 4th time it has happened this way in my tapering journey - going up a reasonable amount seems to be the best fix for me - i realise we are all different and i also realise that we can change within our own experiences.  It normally takes me about 28 days to stabilise again too.  I think i might be someone whose reductions catch up over a many months - not just a few weeks.

 

my dose of 18.5mg was really only an approximate dose because of the wild variations in numbers of beads in a capsule - they vary from 115 - 150 - so even when you take an average of 125mg per capsule it can still lead to a daily variation of 3 o 4 mg - so i could have been taking between 15 and 22 mg per day.

 

time for a GOOD scale i taper again - i had a gemini scale that i didn't think was that accurate

[ChessieCat]

Do you leave a weight on the scale?  One of the members does this and finds it more accurate and can be easily checked if it needs recalibrating during weighing.  Or batteries.  Apparently they can cause an issue if they are losing their power.

 

Accuracy is definitely very important, especially the lower in dose you get.  This could well be what is causing the issues.  Maybe that is the first thing you need to get worked out.  Not going any higher than 24 mg might be a good idea too.

[peggy]

yes, i do leave the weight on the scale - i did read that on someone's thread.  I am fairly certain it IS the inaccuracy that is causing the issues..

 

and yes, maybe i will just go to 24mg (ish)  

[JanCarol]

Oh dear Peggy - {{{HUGS}}}}

 

I've only skimmed this when I saw your name come up.

 

I'll read this in detail soon, Chessie giving you good suggestions.   I believe you can successfully come off, but you may have to be stricter, slower, more careful because each one of these bounces makes the "wires" brittle and the neuroplasticity a little more elusive.

 

I know this has happened to you several times before, and without reading about it in detail, in my memory it always seems to involve too-fast tapers, dosage mistakes, or intensification of life issues.

 

Can you take some down-time?  Rest and repose?  I know it's hard for you to STOP - 

 

but maybe that's what your body is telling you?

 

 Please also consider this:

[peggy]

Thank you JC - yes, a couple of times i went too fast and then a couple of time inaccurate measuring - but i am TRYING to be accurate - its just very difficult with the beads being different sizes - i will have to invest in a more expensive laboratory type scale.

 

I did enquire about have doses compounded and two pharmacies told me how they would do it:

 

you tell them what dose. they do 100 capsules at a time and they ask for a script.  Then they work out how many effexor capsules are needed to compound them - so if i wanted them to compound 100 x 18.5mg capsules they would need 50 x 37.5mg to do the job.  They then open them ALL up and pour them into a big homogeniser and then add the appropriate amount of filler and then the machine whirrs it around and spits out 100 x 18.5mg compounded effexor capsules.  The pharmacist said quality control allows for them to have a 10% variation.  I said thanks (but NO THANKS)

 

Another pharmacy said they would just count them (and charge me $100 plus the original script) - i said thanks (but NO THANKS).

 

If we could get regular effexor here without the time delay coating i could have it made into a liquid and i would feel better about medication dissolved in solution being accurate - after aa good shake of course!

[Karma]

Hi Peggy

 

Sorry I didn't make it back last November to finish the conversation about liquid compounding.  I think my compounding pharmacy actually crushes the time-released beads to make the liquid suspension.  Once the beads are crushed the XR coating is basically destroyed and it then acts like immediate-release venlafaxine.  I'll see if I can find out.  Here is something I found on the internet about making a liquid venlafaxine suspension.  It states crushing XR tablets, but I would think the same would apply to XR beads.  Might be worth asking the compounding pharmacy to check out.

  https://www.google.com/url?sa=t&rct=j&q=&esrc=s&source=web&cd=3&cad=rja&uact=8&ved=0ahUKEwjkpom5i7nMAhVpv4MKHcvFCREQFggsMAI&url=http%3A%2F%2Fwww.mipedscompounds.org%2Fsites%2Fdefault%2Ffiles%2Fstandard-formulations%2FVenlafaxine.pdf&usg=AFQjCNHeA71oK9EoVzts5KrSLa_RohvKAw

 

I'm sorry you are having a difficult time.

 

Karma

[peggy]

Hi Karma,

Thank you SOOO much for the link to that info! I will take it with me next time i am in the vicinity of the nearest compounding pharmacist and chat to him about it.  I really think that a compounded solution is my only hope.

 

I am feeling way less anxious today - i have the intrusive thoughts still and the disconnect from me and adhenonia that go along with this type of wave/crash whatever it is, but i find that easier to deal with than the outrageous level of anxiety i had yesterday - i can cope with a moderate level, but when it was like it was it's all bets off.

 

i took 24mg this morning (ish).  see if i can just stay there.

[ChessieCat]

For anyone reading this topic, I have been tapering Pristiq using compounded capsules with slow release formula.

 

tips-for-tapering-off-pristiq-desvenlafaxine

[Allreadygone]

Hey @ChessieCat is it possible to get the compounding capsules with Effexor IR?

[Rozon1]

hey @peggy Was just curious how your effexor taper was going? Any progress? How do you feel? I'm 3-4 months out and I'm having such a hard time. Physical symptoms along with anxiety does not make this easy.

 

Would love an update from you to see how you were doing! Hope you're well!

[Altostrata]

@peggy, how are you doing?

[buggedout]

Any updates, Peggy?