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RachelSusan

Oh my goodness, you are down to 2.375mg. Amazing, wonderful. I like the fact that even though you have a timetable you are flexible when it comes to tapering.  You listen to you body. It took me a while to learn that but now I am much better off for doing so. Congratulations.

 

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ChessieCat

Thanks Frogie and Rachel.

 

Well I realised this morning that I've been "on edge" for the last few days.  It's a feeling that I've had before where I'm doing something but want to be doing something else.  Just a general feeling of being unsettled.  I've also noticed that my body isn't as relaxed as it had been and I'm not breathing as naturally as I was.  I don't know if it is from the reduction of health issues.

 

When I had the ultrasound done 2 weeks ago for what I thought was gallstones (none found) they found a complex cyst on my kidney and I'm beginning to wonder if the pain I've been getting for the last several months is related to that.  I also remembered that on the morning of the day before I got the really bad pain I had used my physio back roller and I'm wondering if that made things flare up.

 

I'm going for a CT scan today but I won't get the results until at least Monday.

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Frogie
2 hours ago, ChessieCat said:

Thanks Frogie and Rachel.

 

Well I realised this morning that I've been "on edge" for the last few days.  It's a feeling that I've had before where I'm doing something but want to be doing something else.  Just a general feeling of being unsettled.  I've also noticed that my body isn't as relaxed as it had been and I'm not breathing as naturally as I was.  I don't know if it is from the reduction of health issues.

 

When I had the ultrasound done 2 weeks ago for what I thought was gallstones (none found) they found a complex cyst on my kidney and I'm beginning to wonder if the pain I've been getting for the last several months is related to that.  I also remembered that on the morning of the day before I got the really bad pain I had used my physio back roller and I'm wondering if that made things flare up.

 

I'm going for a CT scan today but I won't get the results until at least Monday.

 ChessieCat:

 

I wish you well with your CT today and hopefully everything will turn out just fine.

 

Please keep us posted 💜

 

Take care,

 Frogie xx

 

 

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Carmie

Hi CC, 

 

Sorry to hear you’re having health issues and you’ve been in pain. I hope things sort themselves out. Please let us know how you go with the CT scan, sending hugs🤗💚

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RachelSusan

Hi ChessieCat,

Good luck with that CT scan.  I hope they can figure out what is causing you the pain. Please do let us know when you get the results.

Rachel

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getofflex

Hello chess Cat, I enjoyed reading your introduction.  Thank you for the support you've given me in this forum.  I'll keep you in my prayers.  Jennifer

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mdwstrx

Hi Chessie,

Wanted to stop by and say congrats on the new drop!!!  It seems you're doing very well and inspiring many of us! 

Thank you for your support, inspiration, patience and kindness.  It's very appreciated!  

 

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ChessieCat

Thanks Frogie, Carmie, Rachel, getofflex and mdwstrx.  And I appreciate you all too.

 

Update on the pain.  I did not end up taking the Cipro.  The CT scan showed that I have a urethra which split and then reconnects.  Also showed something which the doctor said indicated the infection.  He did a urine analysis.  I'm assuming it came back clear because I haven't heard from the surgery.  He didn't say what he thought was the cause.  However, I'm wondering if I passed a small kidney stone.  Some time back (can't remember when, possible 20+ years ago) I did have a major pain across my back which felt like I had been cut with a knife, but the ultrasound was done afterwards and nothing showed up.  So that may have been a kidney stone.  The pain this time was nowhere near as bad.  Of course, I'll never know.  The good thing is that even though I did feel some mild pain on and off for about 1 week after the scan it seems to have cleared now and I'm actually starting to feel better in myself.

 

And on that note, I had been considering reducing 1 week earlier than my original plan and try and go a bit faster so I can finish sooner but because I'm enjoying feeling okay I've decided that it's silly to do that.  The short amount of time that I might end up gaining isn't really going to make a lot of difference.

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ShiningLight
2 hours ago, ChessieCat said:

And on that note, I had been considering reducing 1 week earlier than my original plan and try and go a bit faster so I can finish sooner but because I'm enjoying feeling okay I've decided that it's silly to do that.  The short amount of time that I might end up gaining isn't really going to make a lot of difference.

 

Yessss! I did that last month and it cost me at least 2 weeks more of holding. So it took longer. Good for you! Stability and less symptoms is a great decision.

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Dejavu

I'll bet you did pass a stone. Glad you're feeling better.

 

I'm also glad you didn't have to take the Cipro. I broke up a dogfight last year (what was I thinking?) and got bitten in the process. Probably by my own dog, but since we couldn't  be sure, the ER put me on a prophylactic course of Cipro. At the time, I didn't yet realize I was in withdrawal. What ensued was 5 days of unrelenting vomiting and other unpleasant gastrointestinal...ahem..."experiences." Had I known then what I know now, I never would have touched it. It was meant to be a 10-day course, but I stopped taking it after 5 and decided to take my chances with infection. Fortunately, it turned out to be the right call.

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Frogie

I have missed your posts.

 

Are you doing ok? I hope so.

 

Take care,

 Frogie xx

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mdwstrx

Hi Chessie, 

I'm with Frogie... are things well I hope? Miss your posts as well. 

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ChessieCat

Hi everyone, thanks for dropping by.

 

Things are going okay with me.  I've been off SA for many months but have still been checking on some members.

 

Tapering:  I'm now down to 1.25mg and have planned my drops which will get me to 0.25mg using compounded capsules.  This will take about 13 months.  However, once I get under 0.25mg I may need to start using Pristiq made into a liquid.  I will have some 0.125mg capsules left so would do a crossover using 0.125mg capsule and 0.125mg liquid for a couple of weeks before going to all liquid.

I'm a bit annoyed because I repeatedly asked the owner of the compounding pharmacy what was the lowest dose he could make and he kept saying any dose you want.  When I went in recently I found out that he is only in on particular days and the pharmacist I saw told me that they can't weigh the small doses I want.  I told him that I had previously got 0.125mg capsules and he said that was the lowest they could do.  Because I have arthritis in my fingers I don't want to be using liquid.  But I do have plenty of time.  I plan to find out when the owner is available to talk to so I can find out if I am able to get doses of less than 0.125mg made into capsules.  However, I realise that accuracy is important and that I could dilute a liquid to make it easier to measure if needed.

 

Because of covid19 I've been off work for the last 4 weeks.  I have started walking nearly every day (started at 2kms and now 3kms) and yesterday I clocked up 50kms.  It's a bit hard on my knees (arthritis and also floating bodies in one knee) but it's a catch-22 situation where I need to lose weight to help my knees.  I'm wearing good joggers.  I'm reasonably okay walking straight on an even surface but get pain if I try to side step or walk on a surface that has too much sideways slope.  The place that I walked has several small and short inclines and one longer incline at the halfway point.  When I weighed myself yesterday I had lost a small amount and I also tried on a blouse which was a bit tight about 5 or 6 weeks ago and it was almost comfortable enough to wear.

 

Mentally I'm managing fairly well.  I'm really pleased that my cat is still with me (she's nearly 21.5 years old).  My daughter has done some shopping and dropped it in for me so that breaks things up a bit.

 

BTW I have had some minor pain again recently and am starting to think that it might be pancreatitis.  I don't drink alcohol so it's not from that, but the times when the pain has happened has been after I've eaten a lot of refined, sugary, bad fat things.  On a positive note, it means that I have been limiting those types of foods and of course that will help me to lose some weight.  I'm hoping that the people at work will notice a difference when I go back.

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mdwstrx

Hi Chessie!!

 

Just signed on to check something and saw your post.  

I'm so happy to hear you're well and still successfully tapering! Even with

the frustrations you're having, it sounds like things are going well!  

 

Nice to hear you still have your little cat. 😸 Our animals help give us unconditional

love.  Even cats ...lol  (I have a little dog).

 

I'm sorry to hear about your pain but hopefully you can fix it with diet.  We're

all putting weight on since the weather is still cold here and we're not out much.

But we can get out and walk if we bundle up.  So you're inspiring me with your stories 

of walking daily. 

 

You were such a big help when I was going through my 4 months of acute wd.  I'm very

grateful and want to say hello and welcome back!  

 

Best regards,

Md 💜

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ChessieCat
Posted (edited)

Thanks mdwstrx.

 

Tomorrow I drop to 1 mg

 

Well after asking my compounder multiple times what was the smallest dose he could make and him telling me each time that he can make any dose I need, I found out today that he can, or is only willing to, make "rounded" amounts and only as low as 0.125 mg.  Because I take a dose twice daily to help reduce interdose withdrawal this means that my last compounded dose will be 0.25 mg.

 

So I've worked out my taper plan using 0.5 mg, 0.25 mg and 0.125 mg doses and increasing the hold by a week each reduction .  If it all goes okay then I will be off in 49 weeks' time.  That will be a total of 6.5 5.5 years (I started tapering at in October 2015).

 

Here's my plan, including the percent reduction.

 

 

1 to 0.25 taper plan.jpg

Edited by ChessieCat

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ChessieCat

Once I finish my 0.25mg dose I will still have 54 x 0.125mg capsules left so I've decided that I will take 1 x 0.125mg per day, but I will open the capsule and try to divide the contents in half and take it am and pm.  At least that gives me plenty of time to make the decision about when to stop completely.  I'm already starting to think about what I might do and/or buy to celebrate.

 

I just posted this in Terry's topic but want to put it here for my own reference:

 

"I've been tapering off 100mg Pristiq since October 2015 and I'm now down to 1mg.  I'm doing okay and have noticed improvements during that time.  Some of it is very subtle and isn't obvious until I recall how I was at different times earlier in my taper and suddenly realise that something isn't as bad as it was.  For example just yesterday I realised that my tinnitus is now very mild; at one time it was very bad.

 

Recently I've felt a bit irritable which I have noticed when something small happens, like dropping something and having to pick it up, or getting annoyed with my cat.  It was when it returned (but not as bad as before) that I thought oh I went for quite a while where I wasn't irritable.

 

Another thing I noticed is that I seem to be thinking much more clearly now.  There was also a time 2 1/2 years ago when I started getting excited about things, whereas 6 months prior I wasn't.

 

Recently I had a looping song and again realised that it had been a while since that had happened.  And a few days ago I had the feeling that I couldn't settle which was something that bothered me for many months a few years ago.

 

Oh yes, and my leg muscles don't get tight when I walk.  A few years ago I had difficulty stepping up the gutter from the road and would have to use the slope.

 

If all goes okay I will be off about mid 2021, which will be almost 6 years of tapering.  I had hoped to be off by my 60th birthday; I will be almost 64 when I'm finished.  It might be possible to get off sooner, but after going carefully for so long I'd rather not take the risk of upsetting things."

  

 

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getofflex

@ChessieCat thank you for this encouraging post!  I suspect that those of us in this age range (I'm almost 59) have a harder time with WD as a general rule. I started my (too fast) taper in August of 2017, and am now taking things extremely slowly and carefully, especially during the COVID19.  It was very difficult before I found this forum due to tapering too fast, as per my (unfortunately ignorant) doctor.  I, too, feel much better now than I did 1.5 years ago, thank God.  Jennifer

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ChessieCat

Hi getofflex, that's good to hear that you are doing better.

 

I just wanted to document here for the benefit of other members who may not release the impact that the covid-19 situation might be having on them.

 

In a nutshell, I am in a "good place" (detailed below) and the covid-19 situation is starting to have an affect me.

 

My covid situation:  I know that I will still be at home for the next two weeks.  I am not overly worried about the covid situation.  I live alone (I don't mind my own company) and have been home from my volunteer work for 8 weeks now, but not working from home.  I have no added stress due to money or employment.  I have no worries about members of my family.  I do not watch TV or listen to the radio and only check the news on the internet a couple times a day, but I do have a couple of FB sites which I get information from to make sure that I know what it happening "out there".  My daughter has visited a few times and I am in contact with a couple of good friends for long chats.  I've been for several long drives (I've noticed that my driving confidence has dropped a bit) to pick up purchases from places with no crowds (groceries have been delivered).  I've been exercising every day for almost 2 months; the first month I was pounding the pavement and walked 60 kms but it was making my knees sore (arthritis).  For the last (almost) month I've been doing 1 km / 30 minutes on a treadmill (my knees don't hurt as much).  My eating is fairly healthy and I've been maintaining a reasonable sleeping pattern.  I'm showering and dressing and meals at regular times.  I'm getting washing done and doing some other things around the house and keeping myself occupied.  My tapering has not been causing any major issues for a long while.

 

HOWEVER in the last week I've noticed that I am feeling unsettled.  I have found myself having to take calming slow breathes and tell myself that I am okay.  In the last couple of days I've been talking to myself a lot.  I've also noticed when I have an interaction with someone either by phone or in person I feel overstimulated afterwards.  I had been puzzling over some sewing patterns which was making me use my brain.  Perhaps I'm just getting bored and my brain needs to be given more to do.

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ChessieCat

Reduced to 0.875mg today.  I will stay on this for 5 weeks.

 

My reductions going forward will be 0.125mg because it is the lowest capsule dose I could get.  I will hold for an additional week after each reduction from now on.

 

I'm not feeling as unsettled as I had been.  I'm keeping myself occupied with sewing.  When I return to work (3 days per week volunteering) I ease myself back into it.  It's now been 10 weeks since I was at work.  The paid staff are still working from home so I won't be back for at least 2 more weeks.

 

Thankfully Aimee my cat (now 21.5 years old) is still with me.

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mdwstrx

Hi Chessie. .

Congrats on gettin so low!. Your excellent documentation is helpful.  I hit a bit of a bump here at 2.65 mg. Been on hold for about 20 days now and still having symptoms.  Was having emotional spirals and feeling depressed and panicked about living alone. One son is in Ca, the other lives an hour and a half south of me. Was advised to hold a couple months. Did you ever have to hold like this?  Makes we question  if I can ever get off. 
 

I’m glad Aimee is still with you. I love my little wire-haired dachshund. Animals are such gifts. 

Md 🌸

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ChessieCat

Hi mdwstrx, thank you!  It feels a bit surreal.  The realisation that there will come a day when I don't have to take a dose of AD is very exciting.  Just the fact that I know I don't have to calculate my doses and capsules on a Excel spreadsheet again is fantastic.  And I've already printed off all of my charts which I tick off after I take my dose.

 

Regarding your question, I've responded in your Intro topic.  For the benefit of others here is the link to my post:  mdwstrx

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ChessieCat

My further response to mdwstrx wondering about ever getting off:

  

Just now, ChessieCat said:

 

Instead of thinking can I ever get off, think in terms of I've reduced my dose, I'll see how low I can get.  Originally my plan was to get down to 50mg, then I just kept going, and going, and going.  It's not a race.  You go at the pace that your brain and body allow, taking your own circumstances into account along the way.  It's got nothing to do with how strong and/or determined you are as a person.

 

 

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Frogie

Hi ChessieCat:

 

I think it’s wonderful that you are almost done.

 

You taught me how to do a taper nice and slow among other things.

 

 I want you to know how much I appreciate your help through all of this.

 

It’s nice to see you back!

 

Take care,

 Frogie xx

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