HELP

[[fo...]]

I have long Covid and have been waiting to heal a bit to begin tapering my 1 mg K. I have had zero problems with my med until long Covid hit and it caused my brain not to recognize the K and I’ve been suffering tolerance. All along I thought this was long Covid symptoms but I truly believe now that it’s tolerance…..actually it’s bad enough it may be that it’s become paradoxical. I have horrid pins and needles (more life knives), I have tremor (I’ve had it for 10 months thinking it was long Covid) but im not unable to sit or sleep etc……my body just won’t shut off. I had planned a slow water taper with Bob7 and now I’m terrified. Can I taper from this state? What should I do? I certainly don’t want to go to a rehab and be pulled off, right? Please help.

[[Bo...]]

I’m so sorry! Ugh all the Covid stuff has thrown a kink in things for a lot of people.

 

Think slow and steady taper down from all I’ve gathered is what is best and if I can do it, you can do it!!!! It is intimidating to get started and I remember when I started my daily dry micro taper march 2021. I was a mess but once you get starTed and start moving ahead you gain some momentum and show yourself hey I can cope thru this and I’m making my way off. And I’ve actually felt better at lower part of my taper which I was always scared bc I thought well as I taper it will get harder. If you can find your speed that things can be functional along the way, and your brain can kind of adjust as you go along, you’ll be surprised that you can keep moving towards your goal of getting off bc your brain is adjusting and trying to sort things out among the way. Sure there will be bumps along the way, but you gain confidence as you go in knowing ok I know how to cope, what is best for me for xyz symptom and this is my go to for it.

 

If you ever want to understand a compounded liquid option for K, if you find a pharmacist in your state you live in, mine Nick Miller at Pharmacy Solutions in Arlington Tx is open to talking thru how he makes my compound (which is very basic since I’m sensitive to everything)….. so please feel free to get advice from him bc he wants to help people!

 

You’re going to be able to do this… you might even feel a bit better as people who hit tolerance have said once they started cutting it helped them some! keep reaching out to people and know that sometimes the first step in this is the scariest. And just be flexible along the way…. You can always change your approach as you go to meet your needs so you don’t have to stay tapering one way or the other. Find what is best for yiu for that part of the journey!

 

Hugs.

[[fo...]]

Thank you for responding and for the hope! Many of us with long Covid feel hopeless. We are Guinea pigs with a new crippling disease and the world wants go ignore it and say that the pandemic is over. For millions of us, it has taken our quality of life. For me, it also changed my brain enough that it’s not allowing any medications. I have a water taper that is a microtaper. I’ve been watching people have a lot of success with this method Vs cut and hold. I’m praying I can do this and remain able to function because my daughter is getting married in one year and I’m also taking care of my mom. I will decrease slowly, hope I can do this feeling as horrid as I feel and in possible tolerance, and know im doing what’s best for me. I agree with Pamster that I need to wait and let my long Covid run it’s course for awhile but the problem is that there are many people on year 3 of symptoms and I don’t believe I can wait that long. I wonder if a Compounding pharmacy can make it so that a microtaper is possible from a compounded liquid? You are kind and supportive and I can’t tell you how much I need that right now.

[[Bo...]]

Yes I do a micro taper from compound liquid. My compounder uses .25mg/10ML dosing and then I have various syringe sizes he gave me so I can make small precise reductions.

 

It is quite a bit pricier than the tablets so if you want to maybe switch to the compound a bit lower maybe around .5mg, some people start there for compound liquids. Could see how the water taper goes and as you progress if you feel you want to try compound liquid, always the option! Or could try it out right from the start.

 

Feel free to let us know if you need help figuring out the math to do micro taper if you switch to the compound liquid. I asked my pharmacist to put together a spreadsheet tgat he printed for me that detailed out values from mL to mg all the way to 0 from when I switched at .18mg. (.2mL intervals, but I was low).

 

However you start, remember flexibility is key and you assess along the journey. Always can adjust taper method or rate however you need or want.

 

Also, try to remember, many people can taper off these with minor symptoms and going slow increases the odds of being able to function throughout so keep the hope that will be your journey! You’ve found this at the start which is great. Slow and steady and reach out as you need. Hugs.

[[fo...]]

Hi. You had mentioned to let you know if I needed help figuring out the math  to do a microtaper of 1 mg K from a compounded liquid. I would very much appreciate help figuring out what I would want to do. My plan is/was to water taper but I would like a back up method in case I need it. I was going to use 450 ml water to taper 1 ml water. Can you help me figure out how to use a compounded liquid and decrease daily (I don’t want to cut and hold) so that I am decreasing by an amount that would be similar to the timeframe it would have taken to do the 450 ml for 1 mg K? I hope any of this makes sense. Thank you!

[[Bo...]]

Hi there…..

Ok, have you already found a compound pharmacy you feel comfortable with? If not that’s the first step even if you aren’t going to proceed with the compound, making sure you have one you feel comfortable with is key. Also highly recommend they are PCAB accredited and a PCCA member.

Here is the link of searching by zip code for reputable PCCA members in our area-

 

https://www.pccarx.com/Resources/FindACompounder

 

*it should be noted that PCCA is only reputable provider currently for pure Klonopin powder used in compounded formulas bc all others are on back order. Just incase pharmacy you find, incase they say they can’t find any, PCCA is carrying it currently*

 

2. Once you find one either in your area or at least in your state (they can ship overnight in cooler, mine comes from Arlington Tx about 3 1/2hrs away from Houston where I am), need to ask if they have compounded Klonopin before and what their formulation is they usually go with. There is a 50/50 Ora plus /Ora sweet mixture many use for benzo tapering but there are other options. My pharmacist uses a suspension vehicle from Letco and I can pass on more info if you’d like if you go this route. I am super sensitive to additives and he has removed flavoring and really made it as basic as possible.

 

3. The standard formulation that has been stability tested most have used is a .1mg/1mL formula. Since I was again more sensitive, my pharmacist made mine less potent in terms of reduction ability and getting precise, so my formulation he said to have my Dr write prescription for is .25mg/10mL. So making a .1mL drop in the syringe isn’t as large of a reduction as if the formulation was .1mg/1mL. Both have been tested for 60 day use period before needing to be discarded.

 

4. Once your formulation is decided, we could then decide how you want to micro taper off for the 450 days you’ve decided. Flexibility is key as you move thru your taper so there might be times you’ll want to slow down or maybe speed up if you’re doing ok. So trying to map out the full plan upfront we can do but likely will need to adjust as you go as many people do during this.

 

5. I had my pharmacist put together a spreadsheet for me with the equivalencies from 10mL= .25mg. 9.8mL =. , 9.6mL = .245mg, 9.4mL = .24mg. etc all the way to 0. Then I wrote out a plan of decreasing in .1mL increments every 4-7 days (7 as I got lower), but I was only switched to compound at .16mg so not from beginning.  Your pharmacist will also supply various syringe sizes and press in adapter to use syringes with the bottles (but write this down when speaking to them to confirm they will supply so you know ahead of time). My pharmacist sent 5mL syringes, 3mL, 1mL. .1mL and .05mL options.

 

6. Once we would know your formulation equivalencies, we can then map out how your micro taper would be to say ok, you’d reduce .01mL (just throwing out an example, not real right now), every night  or every other night.

 

7. If you would be set on 450 days which is 14.5 months, you’d probably be looking at dropping .1mg per month for the first few months(3 ish months), then maybe .05mg for next 4-5 months, then as you get to last third of coming off .375mg and below probably take that over the last 7.5 months bc the lower doses people usually do better slowing down.

 

8. Again, once the formulation is known (.1mg/1mL or any variation they feel comfortable making), then can help with an exact plan of doses and how that looks for the micro taper.

 

Rest assured you will have the help to come up with this!! And I hope Libertas can chime in here and offer any further points bc she has a good handle in terms of what to ask pharmacists when going this route.

Nick at Pharmacy Solutions in Arlington Tx is happy to help whatever pharmacist you find work towards coming up with a good solution for you so please reach out to him if that is helpful. 817-274-0050. 

 

Try to just take in finding the pharmacist first and getting that sorted and not get into the details of your schedule and night reductions at this point since that will be sorted no matter what once decision is made to change.

 

Hugs.

[[An...]]

This is such helpful information. Thank you so much for spelling all of this out. I am still considering switching to a liquid compound from my compounded capsules. How did the transition to liquid go for you? Was it mild? That is my only concern since my symptoms are already on the severe end of things. I talked with my compounding pharmacy and the pharmacist said he could do the liquid no problem. I'm just worried about the reaction to the switch. Would love to hear your thoughts. Thank you!

[[fo...]]

Hello Bogus11:

 

The pharmacy I have spoken with is both PCAA and PCAB accredited. I spoke at length with a pharmacist. He was very kind and said they would do whatever I would like as far as strength/dosage. They don’t have access to pure K Compunding powder but use crushed pills and use whatever brand is accessible. That concerns me a bit. She said they compound using an oil base so that it keeps for 6 months.

She stated they can do 0.5mg/ml or .1mg/ml…..whichever I choose. I told her I wanted to come down in dose daily and she stated they could try to make that happen but the little hash marks would be very difficult to see.

I am only stating 450 days because the current plan I have to water taper I have set at 450 days for my 1 mg K. I want to go slow. I intend to come down, add water, etc to keep the percentages more even. I felt like 12 months felt a bit quick. I must be able to function this taper. My mom relies on me solely and I’m planning my daughters wedding. I also have horrid long Covid. It’s completely altered my health. I’m really scared because Covid gave me POTS and MCAS and I read that tapering can aggravate these conditions. I’m already 40 pounds lighter in 3 months due to my illness. Horrible time to taper but I can’t tell what’s long Covid and what could be tolerance. I had zero problems with my K prior to Covid.

I know you probably need more details but I’m just confused and anxious. I know I would like to decrease daily, I want to taper slowly, I’m open to the pace. I want to microtaper. My CNS took a beating and I feel the microtaper is easiest on the CNS. I wish I wasn’t terrified of dry tapering but I can’t even begin to think of doing that,

Is this enough info to help write a plan? I’m so grateful for you and all the other admin who so kindly help those of us going through this. I dream of being done and feel like it will never be me….but it has to be and will

Thank you

[[fo...]]

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