bubbles

[apace41]

Chessie is spot on here, Bubbles.  Don't think that what you perceive as a small drop has little effect.  Depending on how sensitized our systems are we may be more or less able to deal with any drop or even any insult to our CNS.  Sometimes an outside stressor (work stress, fight with spouse, illness) can wreak havoc on our systems for an extended period.  Underestimating the power of the process is something that I know I've been very guilty of along the way.

 

Best,

 

Andy

[bubbles]

Andy, yeah. Either way, sitting at this dose for a bit is probably the right thing to do.

 

I had a good night's sleep last night and have woken up feeling pretty good. I'll focus on sleep and diet for a few weeks, which can only be beneficial. (Except tonight - I'm going out to dinner!)

[bubbles]

So, I started to talk about this in context of nz11's most excellent spreadsheet, but it was not in the right place, so here I am.

 

So, my calculations say I'll be another 2.7 years before I get down to 1mg. That's a long time, since I started to go down a little after 18 months on. 

 

So, I was on Lexapro for about 6 years, and tapered off over five months. It was a bit rough on the way down but okay and the side effects were not great. I was accidentally off my thyroid meds for three weeks and ended up bad again. At that point the doctor suggested starting a different med to see if it had a better side effect profile for me - it didn't. After 18 months on that I made a drop (25%, rough, but necessary due to the side effects which improved with the drop) and sat on that dose for a while. At about 2 years on the med (total, including the taper), I started to taper down to 50mg (over several months) and held that for several months. I'm down to 33mg now. I was due another drop now but didn't feel up to it, so I'm still on 33mg for another month and that will take me to about 3 years (in June) and half of that time has been spent working my way down, with a long time to still go.

 

At this rate, I will end up having been on it for 5.5-6 years and 4.5 of that will have been coming off.

 

Is that nuts? Why will it take longer to get off than I was on it at full dose? Or, do we need to consider that it was more like 9-10 years since I was first medicated, and will be more like 13 when I'm off. That means that the taper is a little under half of the total time on SSRIs. 

 

I worry, a little, about being on meds for so long. Wish I had a crystal ball. Some side effects are improved with the lowered dose.

[Fresh]

Bubble , that puts you spot-on with Anne Blake-Tracy's recommended taper - she suggests it should take

about half the time you were on meds. (which for me would mean tapering over 14 years , lol).

 

Don't judge yourself ... you know it takes as long as it takes.

 

[bubbles]

Anne Blake-Tracy! That was who it was!! I'll look up her articles.

 

Yeah, you're right. It takes as long as it takes. 

 

Thanks Fresh.

[bubbles]

Ok, I picked up another 6 weeks of capsules at 33mg. I'll see how I feel in a few weeks. I'm okay. I was stressed and scattered but that's improving - I dropped the thing that was causing me so much stress. I'm a bit tired (need to be more disciplined about bedtime and putting screens away). I also need to be more disciplined with cutting carbs and making sure I get lots of healthy fats in my diet. That makes a big difference to me.

 

The reason for the capsules being so expensive, apparently, is that I'm getting small amounts (30 or 42 capsules at at time) and the machine has to be set up differently for small amounts - 100 seems to be the magic number. I toyed with the idea of getting a larger number of 2mg and splitting a 50mg pill to give me 25mg plus one or two capsules etc of the 2mg to get differing doses, but I think it's better to stick with how I'm doing it for now. 

[Fresh]

nz has transcribed Anne Blake Tracy's book "Help I Can't get Off My Antidepressants". See posts around here http://survivingantidepressants.org/index.php?/topic/7571-

 

Regarding compounding , see the compounding thread for ideas. I got a range of capsules compounded

in 10's , 5's , 2.5's and 1's , so I can mix and match to make up my required dose.

Get quotes - there's huge variance , in Australia at least , in quotes. I recently got 300 capsules for

$80 , and was quoted $300 for the same thing at a different pharmacy.

[bubbles]

Thanks for the link Fresh.

 

The compounding - how long do your capsules last? I was told that, due to the compounding, the caps only last six months. I need to get about 100 - or more - to make it cost effective. I've got caps for the next 8-12 weeks in 33 and 31 mg doses, so I've got a bit of time to think about things. I've calculated a bit of a best-case taper of 2mg a drop each 4 weeks from 29mg to 20mg. That's in doses that do slightly *increase* for several drops but never exceed 10% and the last one is only 5%. I'll ring around a few compounding pharmacies (there seems to be one on every corner around here!!!) and see if they can help me. Once I've got that sorted out I can approach my doctor.

 

B

[elbee]

Hi Bubbles,

 

I'm new here. It's been really informative for me to read through your entire thread, thanks for sharing the info! You're doing great!

[bubbles]

Hi Elbee

 

Thanks for dropping by. I am doing well. I've had a few ups and downs but overall am doing very well. I'm continue with my small drops that I hold until I've several weeks of feeling good. It will take a long while, but in the meantime I'm doing much better than I did with a previous faster taper.

 

B

[SkyBlue]

Hi Bubbles (I love your name),

 

Glad to know you are doing well. 

 

I have a question for you: how do you define "good" during the "good" holds? No WD symptoms? 

 

I know it's individual, but I don't want to wait until I'm feeling perfect for a month before dropping down again-- bc I can't visualize that happening!!! 

[bubbles]

Hi SkyBlue

 

(I have no idea why I chose Bubbles - it just came to me.) 

 

"Good" is normal. No WD, feeling fine - I could stay like this indefinitely with no thought of changing doses etc.

 

I have no pressing need to go down quickly - no desire to become pregnant, for example, and the worst of the side effects have lessened now. I have prioritized feeling "normal" as much of the time as possible so that I can still function at work and school and with my parenting.

 

I do feel emotional symptoms with each drop, but I can wait them out after 1-2 weeks. A few times I've been on the brink of updosing when it passed. My hope is that by crawling down I will do so without any major symptoms and while allowing my brain to rewire itself a bit at a time. 

[bubbles]

Just parking this article here to come back to later: http://apps.who.int/medicinedocs/en/d/Jh1462e/3.3.html

[bubbles]

This is very rough, but I've taken the figures from chart from this thread - from the paper from the sertraline section. (From the Dose graph, I'm not sure that I can take much from the other one.)

 

75mg     85%

50mg     82%

45mg     80%

40mg     78%

35mg     77%

30mg     75%

25mg     70%

20mg     67%

15mg     60%

10mg     54%

5mg       36%

0mg       0%

 

It is vague and a bit "coarse" (in 5mg increments) because I was holding envelopes up to my computer screen to try to figure it out. Not very scientific. I should print it out as large as I can and get to with a ruler to do it more accurately. 

[bubbles]

I looked at that graph again and plotted 100mg (my highest sertraline dose) at about 87% (ish). These are all very ish. Nevertheless, I've gone from about 87% to 77% (ish, I'm actually on 33mg, not 35mg).

 

100mg   87%

75mg     85%

50mg     82%

45mg     80%

40mg     78%

35mg     77%

30mg     75%

25mg     70%

20mg     67%

15mg     60%

10mg     54%

5mg       36%

0mg       0%

[bubbles]

The underlined entries are where I was at the "top" - 100mg, and approximately where I am now. Today I'm actually at 33mg, so I should have tried to plot it more specifically, but there you go.

[Altostrata]

Bubbles, the curves are averages and don't reveal anything about the symptoms you might feel in the last leg down, after 5mg.

 

Although the curve seems to be negligible at the end, it is still a slope and we still advocate descending it very slowly, so as not to plummet to the bottom.

[bubbles]

The curve doesn't look negligible as it gets low - it looks terrifying. But I'll get there, eventually. I'm just a little discouraged today, looking at how extreme the bottom bit goes. Never mind, all will be well.

 

(BTW, Alto - I saw a video of you on Beyond Meds, speaking. You were looking great! Well done!)

[Altostrata]

Thank you!

[bubbles]

For myself, for later

 

[bubbles]

And this one

[bubbles]

Oops

 

[bubbles]

Ok, I'm feeling a bit crappy. Mood mostly, but also headaches - pretty sure I'm bruxibg again. Also upset stomach but that's common for me with a bit of anxiety.

 

So to try to ride it out or updose. Not sure but feeling a bit worn down and discouraged.

[Fresh]

Could you add the date of your last drop to your sig. Bubbles? If it was more than a month ago ,I'd

be inclined to hold rather than updose.

 

With regard to compounded capsules expiring after 6 months , please read the whole of the following article.

When meds were tested 14 years after their expiry date , they still had an acceptable level of potency.

http://commonground....y-ever-too-old/

 

Exerpts:

 

"It’s not the first time I’ve thought about the meaningfulness of expiration dates on our medications. Frequently, I wonder, “Does it make any difference taking drugs that are far past their expiry? And is it harmful to be swallowing medications that were made in the last millennium?"

 

"From a merchant’s perspective, a short expiration date drives return customers. If your clients only use your product intermittently, expiry dates get them back to purchase more of the product. You often hear pharmacists and regulators hectoring about medication expiry dates, warning you in grave tones that you could be taking dangerous chances by swallowing expired drugs. Hmm, how true is that?"

 

"His study looked closely at 14 expired drugs, 12 of which were “present in concentrations at least 90 percent of the labelled amounts.” This is considered the minimum “acceptable potency.” Basically, these decades-old drugs were as potent as the day they were manufactured; in fact, he found that those 12 medications “retained full potency for at least 336 months, and eight of these for at least 480 months.”

 

Alan Cassels is a pharmaceutical policy researcher, an occasional swallower of expired acetaminophen and the author of a new book, The Cochrane Collaboration: Medicine’s Best Kept Secret. @AKECassels. You can read more of his writings at www.alancassels.com or follow him on twitter @akecassels

 

I'm no longer at all concerned about expiry dates after reading this.

 

[bubbles]

Fresh, thank you. I will read the article. (I recall hearing that our expired medicines - that we return to the pharmacy - are sometimes sent off to third world countries! Presumably they wouldn't send off medicines that might harm someone. I never found out if that were true, though.)

 

I've updated my signature. I think it was about 17 March that I went down. It's coming up to 7 weeks - I measure out in a weekly pillbox from a Sunday, so on Sunday it will be 7 weeks.

 

I went out for a bit to run some errands and I feel a bit better now. Maybe I just need to force myself to do normal things and that will help.

 

Thanks

B

[bubbles]

The drop was a smidge under 6%, I think; held for almost 7 weeks so far. 

[Fresh]

Thanks bubbles. So if one more week will be 8 weeks , that makes the drop around March 1.

[bubbles]

Actually, think it was 6 March. Will fix the signature. Don't know why I said 17th!!!

[bubbles]

(I know it is nearly 7 weeks because I had a bottle of 42 pills (6 weeks), which I finished. I then opened up the new bottle for counting out pills Sunday just gone.)

[bubbles]

I've also realized that I didn't say - I recently swapped around the time I take my meds. I was taking my thyroid meds in the morning and the sertraline in the evening. But, I kept forgetting to take the thyroid meds before breakfast (they're meant to be on an empty stomach) and then I'd forget later and I'd end up taking the two at bedtime. So I decided to try them the other way around and it's much better. The iffy mood started before that, but I may have made things worse. 

 

(The thyroid meds are really important and I need to know that I'm getting a reasonably regular dose from them, so it is important to fix the problem.)

[bubbles]

And I think I'm having hot flashes. Not overly bad but an indication that something hormonal is happening.

[bubbles]

I have a Botox appointment for Tuesday for the bruxing. That ought to help over the next few weeks.

[bubbles]

OK, I've cheered up a bit. I've done some chores and made that appointment and decided to buy pizza for dinner. Probably not good for me, but there you go, a treat is nice sometimes.

[bubbles]

I'm feeling a lot better now. I guess this was a wave. It seems that with every drop I have to go through a stage of "this was a mistake, I want to updose". This one just took longer than usual. I have to decide now how much longer to stay on this dose - it will be eight weeks on Saturday. My next drop is also 2mg due to having the capsules already compounded (about 6% drop, I think). If this drop is also hard, I'll switch to 1mg drops for a bit (about 3.5%).

[bubbles]

I've been feeling fine now for a while now. I'm going to stay at this dose for the rest of this fortnight as I've got a stressful two weeks ahead of me. That's it at this dose tho, that's the end of the capsules! (I can get more but I don't need to.) I'll have spent 12 weeks at 33mg.

 

I'll drop to 31mg on a Sunday in about two weeks (that's how my pillboxes work).

[bubbles]

I dropped again on Sunday 29 May, to 31mg. I stuffed it up slightly by taking two pills on the Friday and none on the Saturday.

 

I usually take my ssri in the morning and my thyroid meds in the evening. I measure them out into a weekly pillbox. This week, I got myself all muddled up because the kids were home from school on Friday and it felt like a Saturday. I'd taken my pills in the morning - Friday pill, then at bedtime (after I'd convinced myself it was Saturday) I checked the Saturday strip. You can imagine what happened here. I thought "oh, no, I've forgotten my morning pill - again - I'd better take it now. So, nothing on Saturday, then the new dose on Sunday. In an ideal world I'd have left the drop a few days, but I only had one more pill left so I've kept that in case of a major disaster and moved on.

 

Anyway, despite that, all going well. I sat on 33mg for 12 weeks all up. I've currently got 6 weeks of 31mg capsules and I think a repeat script for the same again. At some point in the next month or so I'll need to decide if I'm going down again (which means doctor appointment) or staying there for a bit. As always, I've got a lot on my plate and I need to prioritize feeling well.

 

So far so good. I'll fix up my sig block a bit later.