☼ ChessieCat: so I'm not the only one (Pristiq / desvenlafaxine)

[Dejavu]

@ChessieCat, glad you've gotten to the root of the hives problem. I hope you are now settling on your latest cut and things are going smoother. I'm always worried about trouble behind the wheel, withdrawal or not. Sounds like you handled both incidents like a boss!

 

You are always so kind to me; just wanted to offer my best wishes!

 

[bubbles]

Hi @ChessieCat

 

Just calling by to say hello and see how you're doing. Glad to hear you've got to the bottom of the hives issue - do other related vegetables do that too?

B

[ChessieCat]

Hi dejavu and bubbles, thanks for dropping by.

 

No I don't seem to have any trouble with other foods.  The funny thing is that at the start of summer I got hives when starting the coleslaw (cabbage) but kept eating it throughout summer.  Then the weather got cooler so I wasn't eating it.  It may just have been a coincidence but happening twice is definitely interesting.

 

It's now been 4 weeks and 4 days since the scooter incident and my body is still on higher alert than normal.  I'm not nervous when driving, however I have noticed that I do allow more room around me than previously and I also find myself braking/partial braking more than before too.

 

I did hold for an extra week (4 instead of 3 - I'm reducing less than 10% because of my capsules doses) and reduced from 4mg to 3.75mg last Saturday.  Depending on how I feel I might only stay on 3.75mg for 2 weeks instead of the planned 3.

[ChessieCat]

Finally starting to feel a lessening of the hyper alertness.  It's still there but not as high as it was.  I'm really thankful that I understand what is going on because I am able to accept and use non drug coping to deal with it and I know that with time and patience it will settle.

 

As an example of self care, earlier this week I politely refused to go into a small room with 10 people because I knew that it would increase my agitation and I would then have to work to settle it down.  I am pleased that I was able to be assertive and didn't even get upset when I said I would "sit it out".  I have previously made them aware that I am having difficulties so I didn't have to explain why.

[Carmie]

Hi ChessieCat, 

 

I’m glad you’re slowly starting to feel better. It looks like you’re getting really great at self care👍💚

[ChessieCat]

Thanks Carmie.  Self care is very important, even for people not withdrawing from a drug.

 

Another reduction today, down to 3.25mg.  Seems such a "stupid" amount and I still get the urge every now and then to stop but know that it's a stupid idea.  My reasoning is that I've got this far and done okay and that taking such a small dose isn't "hurting me" per se like the higher doses were so I might as well continue in a careful way.  I think a good analogy is like being impatient and opening the oven door too soon when you are baking a souffle, even though I've never tried to make one!

 

I have a good example of multiple things making it difficult to know what caused an increase in anxiety/agitation symptoms.  Two weeks ago I was getting over a mild cold, did some strenuous yard work towards the end of my cold and ran out of magnesium.  It could have been any one of them or a combination of any or all.  At least I realised the possible causes and was able to accept and knew that things would settle down, which they did fairly quickly.

[brassmonkey]

Yea, CC you're doing too well to risk a jump now.  This is one of those times that a taper just turns into a slog that you have to make it through.  Around this point I found that the tapering part was just one of those things that had to be done every day and was just part of the routine. Symptoms would come and go and had to be dealt with as needed.  Other things in life started to take on a bigger importance and I could feel a new phase starting.  It sounds like it's about the same for you.  I'm glad the wave is washing itself out and you're feeling better.

[neroli]

On 4/13/2019 at 10:22 AM, ChessieCat said:

I politely refused to go into a small room with 10 people because I knew that it would increase my agitation and I would then have to work to settle it down

 

This is brilliant, ChessieCat.  I've had that going into small rooms, or even big rooms with lots of people, thing since the drugs hit me - it really is essential to take these self-care steps to be able to continue functioning.

 

Best of wishes to you

 

Neroli 💜

 

[ChessieCat]

Feeling really excited about reducing to 3mg tomorrow.  The end is in sight.

[manymoretodays]

That IS exciting Chess!!!!!!!!!!!!!!!!!!!!

Best,

L, P, H, and G,

mmt

[puthappinessfirst]

On 5/10/2019 at 5:54 PM, ChessieCat said:

Two weeks ago I was getting over a mild cold, did some strenuous yard work towards the end of my cold and ran out of magnesium.  It could have been any one of them or a combination of any or all.  At least I realised the possible causes and was able to accept and knew that things would settle down, which they did fairly quickly.

 

I'm in this same way, currently!

 

Went to a friend's wedding which was so fun but hectic, was up late each night I was away, got the flu or something else very nasty right after it, had to get a steroid injection for my asthma/lungs, ran out of magnesium the week before and didn't get more, started my period, switched over to full liquid dose. WOW, writing that out I just realized how much that all is. But as you, I know the anxiety and agitation from it all should settle down soon.

 

You are oh so close! Can't wait to be where you are!

[JackieDecides]

8 hours ago, ChessieCat said:

Feeling really excited about reducing to 3mg tomorrow.  The end is in sight.

 

I hope it goes well for you. 🤗

[ChessieCat]

Thanks folks.  It's nice being able to share with other people who do truly understand the patience and endurance that are needed to get through this.  Even with a fairly uneventful taper symptom-wise, it is still a slog at times, more mental than physical.

 

Every now and then I remember what I experienced before reducing (mild serotonin toxicity symptoms) and withdrawal symptoms that I had early on in my taper.  I can concur with what some others have stated that the non drug coping techniques that I have learned and am using during this time are going to stay with me for life.

[mdwstrx]

1 hour ago, ChessieCat said:

Thanks folks.  It's nice being able to share with other people who do truly understand the patience and endurance that are needed to get through this.  Even with a fairly uneventful taper symptom-wise, it is still a slog at times, more mental than physical.

 

Every now and then I remember what I experienced before reducing (mild serotonin toxicity symptoms) and withdrawal symptoms that I had early on in my taper.  I can concur with what some others have stated that the non drug coping techniques that I have learned and am using during this time are going to stay with me for life.

Hi Chessie!  Very excited to see you get down to 3 mg.!  You've helped me a lot through my wd and it makes me want to cry for happiness for you that you're that much closer to the end.  What tapering method are you using?  Since you're on a different AD, is 1.25 your drop off or does your chart just stop there?  I realize it may be comparing apples to oranges.

I've been on the 10% Brassmonkey slide for two months; May being the first full month.  The last few days have been tough.  I noted you said your taper was fairly uneventful and also that you had wd symptoms early on.  Hoping my taper can get smoother as it sounds yours did?  I'm on day 8 of the scheduled two week hold.

 

 

[ChessieCat]

24 minutes ago, mdwstrx said:

is 1.25 your drop off or does your chart just stop there? 

 

No, I won't be jumping at 1.25mg.  That was as far as I had worked out because at by time my brain was starting to "explode" trying to do the calculations.  My current reductions have been 0.25mg reductions.  Below 2.5mg I will be making 0.125mg reductions.  Below 1.25mg I will be making 0.0625mg reductions.  After than I'm not sure what I will do.

 

29 minutes ago, mdwstrx said:

I noted you said your taper was fairly uneventful and also that you had wd symptoms early on.

 

It hasn't been totally uneventful.  However, my comparison is made against the mild serotonin toxicity symptoms and then what I experienced when I reduced from 100mg to 50mg for 2 weeks, which is when I found SA.  During that 2 weeks I experienced extreme cog fog and even walking took my full concentration.  It was like trying to think with mud for brains and moving through molasses.  After 2 weeks I got to the stage that I was unable to type.  Because I am a professional typist when this happened I knew for certain that something was really wrong.  SA had suggested updosing and when this happened I increased my dose and after only about 4 hours I was able to type again and the cog fog started lifting.  I consider my situation unique to many members because I had a benchmark and knew for a fact that it was the drug and not my imagination or wishful thinking.  The difference was like night and day.  I think having experienced such an extreme difference has helped me to remain patient and accept the mild withdrawal symptoms as part of the process of getting off the drug.

 

Knowledge and understanding what these drugs do and that the brain has to adapt to not getting as much of the drug are also helpful tools.  And of course the non drug coping techniques!

 

41 minutes ago, mdwstrx said:

I've been on the 10% Brassmonkey slide for two months; May being the first full month.  The last few days have been tough.  I noted you said your taper was fairly uneventful and also that you had wd symptoms early on.  Hoping my taper can get smoother as it sounds yours did?  I'm on day 8 of the scheduled two week hold.

 

I learned very early in my taper that listening to my body and symptoms and holding when needed is key.  It's also important to learn not to panic when you get some discomfort.  Whenever I feel discomfort I observe but try not to get involved with it (just thinking ah, that might be a WD symptom) because that adds stress and then the possible WD symptom/s can get mixed up with stress symptoms.  And another thing is to learn to just get through a bad day the best you can.

[neroli]

Hello ChessieCat

 

Good news on the latest taper, must be so good to have come all this way.

 

Thank you for explaining what your symptoms were like early on and later in your taper, it's encouraging to read.  this is also extremely useful:

 

6 hours ago, ChessieCat said:

It's also important to learn not to panic when you get some discomfort.  Whenever I feel discomfort I observe but try not to get involved with it (just thinking ah, that might be a WD symptom) because that adds stress and then the possible WD symptom/s can get mixed up with stress symptoms.  And another thing is to learn to just get through a bad day the best you can.

 

Thank you and all the best

 

Neroli 💜

[bubbles]

Well done! I know what you mean about brain exploding. I had to do it in a spreadsheet to make any sense of it all!

[mdwstrx]

Thanks for elaborating. Your replies are very helpful! Especially about learning to not get involved with the discomfort.  💜

And agree with you and Bubbles. Calculating out can be formidable! I keep coming up with different dates on my own end of taper but it's far enough out, I'm not too concerned.  

[Carmie]

Hi ChessieCat, 

 

Great to hear you’re doing so well. You are an inspiration to all of us💚

[Callie]

Hello, Chessiecat!

 

I am hoping you can answer a couple of questions for me regarding a post of yours somewhere here on SA that I recently saw,  although it was posted months ago. You had mentioned that there was a time when you experienced hypersensitive touch, and gave an example of how you could feel every single little fiber in your clothing. Did this symptom ever disappear for you? Also, how do you or did you cope with it? Any tips?

 

I have this symptom, along with many others, and it just won't quit; it's constant. It's been more than 2 years now and really tough living with it.

 

I would certainly appreciate your help!

 

Callie

 

 

[ChessieCat]

I don't think it has disappeared completely, but it doesn't seem to be as bad as it was.  However, because of the change in season (now winter in Australia) I am wearing different clothes so it is difficult to know how much better it is.  Also not sure if the hot weather increased it so it may reappear when the weather gets hot here at the end of the year.

 

I do seem to be able to feel textures with my fingers more than I used to.  And I've noticed that when I am in bed the creasing in my pillowcase, bed linen and nightie bother me more than they used to.  I am now 61 and my skin has been thinning over the last few years so it may be caused by that, or contributing to it.

[Callie]

Chessiecat:

 

I so appreciate your quick response and finding out from you that this symptom does improve! It's so hard to deal with it though day after day after day. It's endless. If you ever discover or hear of any coping strategies for it, please let me know.

 

Thank you so much!

 

Callie

[ChessieCat]

6 hours ago, Callie said:

If you ever discover or hear of any coping strategies for it, please let me know.

 

I found that specific fabric/items of clothing seemed to be more noticeable than others, so I tend/ed to steer clear of those and try to wear things that didn't irritate me.

 

If you are finding that the seams irritate you, you could wear the item turned wrong side out (eg underpants).  But of course you wouldn't do that for the outer clothing if you are going out in public.

[Callie]

Yes, seams are the worst. Thanks for the tips, Chessiecat!

 

Callie

[ChessieCat]

Oops!  Just took my last morning dose of my 3 weeks and there is one 2mg capsule left.  When I count them out at the beginning I always double check the quantity so I know that there was no mistake made there.  So, on one day during the last 3 weeks I have only taken 1mg and I have no idea when it might have been.

 

Oh well, I'm not going to stress about it because there is absolutely nothing I can do about it.  However I probably should buy a daily pill storer.

 

And yes, I'm still going to be making a reduction tomorrow, down to 2.75mg, but that will be for 4 weeks.

 

And that reminds me that I need to work out my next compounding order.  I've got 8 weeks before I need it, but I like to do it in advance when my brain it working and not leave it until the last minute and get stressed about it.

[Yogendra]

On 6/21/2019 at 3:51 AM, ChessieCat said:

Oops!  Just took my last morning dose of my 3 weeks and there is one 2mg capsule left.  When I count them out at the beginning I always double check the quantity so I know that there was no mistake made there.  So, on one day during the last 3 weeks I have only taken 1mg and I have no idea when it might have been.

 

Oh well, I'm not going to stress about it because there is absolutely nothing I can do about it.  However I probably should buy a daily pill storer.

 

And yes, I'm still going to be making a reduction tomorrow, down to 2.75mg, but that will be for 4 weeks.

 

And that reminds me that I need to work out my next compounding order.  I've got 8 weeks before I need it, but I like to do it in advance when my brain it working and not leave it until the last minute and get stressed about it.

Dear CC,

 

Your journey of tapering is inspiring. 

I am on Desvrnlaflaxine 50 mg ER film coated. Can this be cut/crushed and weighed in machine and then put in capsules as per tapering schedule. I am worried as it is extended release film coated. And in India we do not have compounding pharmacies too.

[ChessieCat]

Copying this here for my own information:

 

Just now, ChessieCat said:

 

At the start of my taper there was very little information on SA about how to get needed doses of Pristiq because it comes in a tablet where the slow release is actually part of the tablet matrix (the "glue" in the tablet) so when you break up the tablet it becomes immediate release IR.  Also the tablets are a shape that makes it difficult to cut them evenly so it is difficult to get consistent doses because of the irregular sizes which would mean irregular release of the drug depending on the size of the pieces.  Of course I also didn't have much knowledge at the time so was having to really on SA information.  Only yesterday I had the thought that the Pristiq tablets could be filed down and weighed, which I probably would have done on the larger doses and it would have saved me a lot of money.

 

I asked my compounder what are the smallest doses he can make and he said that he can do whatever I need.  For my next batch I will be getting 0.125mg capsules made, and the batch after that (about March 2020) I will be getting 0.625mg capsules.

 

There is one member who was having difficulties stabilising when she changed to capsules so she had some tested and there was a fairly large variation in the doses.  I will admit that it was something that I hadn't even considered, but after finding that out, I decided that it was no good worrying about it.  I had been using capsules for about 3 years at that time and I'm not patient enough to be weighing out tiny amounts of powdered Pristiq, which would need to be halved and taken twice a day once crushed and IR.  And I feel reasonably confident that the doses my compounding pharmacist is creating are more accurate that what I would be able to manage.  Once I under 10mg I started splitting my doses (not in half) and taking it twice daily.

 

The one big issue for me with using compounded capsules is working out how many I need because I have to make assumptions about the holding time on each dose.

 

Andie is another member who is using capsules to taper.

 

 

[neroli]

Hi ChessieCAt

 

Just looking at your signature - you are doing so well - what a wonderful thing to see how far you have come in your taper.

 

best of wishes

 

Neroli 💜

[ChessieCat]

Thanks Neroli.

 

It's funny how different things bring the realisation home about how far I've actually reduced.  I was checking on some information in my spreadsheet the other day and had to go to nearly the top of the page.  I was surprised at how long it took me to scroll to the top.

[ChessieCat]

Well I discovered this morning that I have missed 2 doses during the last 3.5 weeks.  One morning of 2mg and one 0.5mg evening.  Hopefully they weren't consecutive.

 

Time to print of a chart to cross off when capsule.

[ChessieCat]

Just adding this here so I have a record of it.

 

Late Tuesday got what I thought was gallbladder pain.  Ultrasound showed clear.  Most blood tests back.  Indicated some inflammation.  Doctor doesn't know the cause but said it might be viral.  Still painful this morning, Thursday.

[Frogie]

14 hours ago, ChessieCat said:

Just adding this here so I have a record of it.

 

Late Tuesday got what I thought was gallbladder pain.  Ultrasound showed clear.  Most blood tests back.  Indicated some inflammation.  Doctor doesn't know the cause but said it might be viral.  Still painful this morning, Thursday.

I hope it’s not your gallbladder. I had mine out years ago.

 

Hopefully it is viral and will go away soon.

 

I’m sending good vibes to you. And lots of well wishes. 😊

 

Take care,

 Frogie xx

[ChessieCat]

Thanks Frogie.

 

I was given Ciprofloxacin and had the script filled, came home and then read the FDA warnings about it so I rang the doctor and asked her to get a second opinion from my regular doctor.  She rang me back and said that they understood my concerns and that because the pain was easing and I didn't have a temperature to hold off taking them and go in for a blood test this morning to see if the infection markers are going down compared to the test I had 2 days ago.

 

It is good that I am being heard but still being taken care of.

[ChessieCat]

I've just spoken to the doctor's office and the blood test results have come back within normal range.  Very thankful.

 

I was supposed to be making another reduction tomorrow but because my body is busy fighting an infection I've decided that I will leave well enough alone and not rock the boat unnecessarily.  I'll hold for at least another week and see how I am then.

[ChessieCat]

Held for an extra week.  Reduced to 2.375mg today.  Plan was to do that for 3 weeks but because I held at 2.5mg for 5 weeks instead of 4 I'm hoping to only do 2 weeks, which should be okay because I've only made a 5% reduction.

[Frogie]

7 hours ago, ChessieCat said:

Held for an extra week.  Reduced to 2.375mg today.  Plan was to do that for 3 weeks but because I held at 2.5mg for 5 weeks instead of 4 I'm hoping to only do 2 weeks, which should be okay because I've only made a 5% reduction.

You are doing awesome! You are almost there😊

 

Hope your feeling well through this.

 

Take care,

 Frogie xx