(My ill attempt of a tag for a movie thriller sequel.)
So, it's exactly 4 mos. in the trial and I get a call from my home nurse regarding my upcoming visit to say that she will have to be there upon taking my dose because it has been increased from 8 m.l. to 10.5 m.l. This struck me as a surprise as I was advised to take it 3-4 hours before the visit. I guess they want to make sure that I will be okay? I mean they still will do the EKG readings 3 hours after but we're looking at a 4 hour visit. Is this normal protocol for increases?
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I had to do the same thing when I went from 10ml to 13ml. She came in the morning and watched me take the dose, then left for 3 hours and came back to do the ekg, etc.
She said she will be with me entirely (as if something medically major might happen). It really startled me to hear that and the fact she would have to witness my taking the dose. Thanks for the validation.
Mine had me take the dose increase and she just came 3 hours later and did the EKG. I think standard protocol is what you are saying and Tim mentioned. This last time she said I could go to work and just come back 3 hours later. (Apparently I'm not a risk? haha)
I'm at 10.5 ml, they were going to up it a few weeks ago, but then decided to keep it the same. I'm now around the 5 months.
Hi, I've always been told not to take the dose on appointment days and only take it after the blood draw? The 3 hours wait only changed when you lot started in the US? Plus we now need to have 3 ecgs? I'm sure you'll be ok as you started on 10ml?
That's true, I started at 10 m.l. so .5 won't be much of a difference. Didn't I recall someone had a minor increase (.5 or 1 m.l.) which produced edema? I really hope that I'm receiving the real McCoy.
When I went up to 10.5ml from 10ml, the edema kicked up. Which is interesting as that little increase you wouldn't think would trigger it. It could be a timed thing as well. When that started, the doctors seemed fairly confident it's the real deal. But as always we will never know, but if not I'm digging the placebo if not so keep it coming..Haha
Ah, it was you. (Good, I'm not imagining things.) I do hope I develop some water retention but regardless, I'm getting a lot of mileage out of it along with the best AMN care.
I don't think there's anything to be startled about the dose being witnessed. I believe it's just protocol for this to happen for purposes of record keeping.
I understand that the protocol has been changed so all participants get echocardiogram because more patients were experiencing water retention than expected, rather than because there will be a sudden impact on your heart if dose is increased.
I've been as high as 18ml over the process and experienced fairly significant swelling and weight gain well in excess of a stone from baseline. At that point I was prescribed a diuretic and dose reduced to 11, where I still am a few months later. Fortunately my weight has stabilised after an alarming period where it just kept rising. However I'm still over half a stone up from where I started.
However, I completely agree with this your comment below, and even if we're not on the real deal, we're in prime position to get it for real after the trial before it becomes available for prescription!
" I'm getting a lot of mileage out of it along with the best AMN care"
It's good to hear everyone's doses. This was actually my first increase since I went down to 8 m.l. but after hearing about your experience, I'm definitely more receptive and less alarmed. Thank you.
It's going to be really fascinating to learn which of you boys were on the placebo, and which were on the drug, come about 20 months from now. In the meantime, we all appreciate the updates. While I'm keeping realistic expectations, I am hopeful that this could be the first step towards a legitimate treatment for AMN.
Some have mentioned that they believe MIN-102 has helped with their neuropathic pain. Who has experienced this? Cheers!
Aaron, I was going to post on this but I wanted to make sure. I believe it really has lessend the pain! I'm now taking 900 m.g. of gabapentin. Far cry from up to 2100 m.g. Next week, I'm going to go for 600 m.g. Of course, if you remember, I am also taking venlafaxine which works in synergy with the gabapentin but I think something is working because I am not in any pain as I have been. I'm praying for some edema when I increase my dose. (That sounds way weird).
For humor purposes only : )
I really like my home nurse and she has a wicked sense of humor. Well, when she was pricking my finger (middle one - I wanted to try a different finger) to test my blood sugar, I kept holding and raising my finger until she said that I could put my finger down meaning that all that time, I had been giving her the middle finger! On another note, I said enema when I meant edema as in "checking for enema?"
I’ve noticed the “fire in the legs” has decreased slightly, more that I’m relaxed and don’t think about it. (But it’s still there.)
The cramps in my legs at night that started before going on the trial have since stopped for the most part.
I’ve had to be careful as my Endocrinologist wants to try new things and forgets I’m on the trial and everything has to be approved by them. Hold your fire partner haha
I hear you about trying new things. Each home visit, my nurse reviews my diary log for new medications, symptoms, over the counter, ....anything that is noted under the comment section.
Both times they changed my dosage (first up, second down) I simply had a phone call with the nurse. The only times when I've had to take a dose with a nurse have been on the scheduled visits at 4, 12, 24 and 48 weeks.
I'm just past the 4 mo. mark so my increase is a result of my 3 mo. visit and this is the only time I will have a nurse witness the dose. She just texted me yesterday and told me that she can leave for 3 hours after I take the dose.
How's everyone's weight gain? I haven't weighed for a while and I just had a bit of a shock! I was 75kg when I started and just weighed 84.4kg! Having Addison's I usually struggle to gain weight? I'm a eating machine now!
I'm still releived of neuropathic pain! Which is the best side effect!
Almost 20 U.S. lbs! That's a pretty big weight gain. Funny thing, though, I love to eat especially now and have no shame (sometimes) and now have put on some noticiable weight (5 U.S. lbs). But for me, picture Olive Oyl from Popeye swallowing an olive and it protrudes from her stomach. That's where any weight goes for me so I have to be careful. Now, if I really put on some weight after my .5 increase, well, watch out! : )
Oh, I just posted to Aaron above and I feel it has really helped my neuropathic pain! Again, I really hope I'm on the real deal 'cuz I don't want to fall for a placebo effect. : )
I'm getting a bit of a stomach too! I'm happy with a bit if extra lbs though! If it is placebo bring it on!
There's a documentary in the uk called the placebo experiment! Very interesting! Worth watching! Makes you think! I'm pretty sure I'm on the drug though as I've swelling in my calves and have creases from the top of my socks plus I never gain weight! I'm also urinating through the night due to the oedema! Even with Botox!
Myrbetriq is wonderful, Steve, as I've mentioned to you before. I've said many times before, apart from the drugs that are keeping me alive in spite of my Addison's, Myrbetriq is my very favorite. It's one of the very few medications that has really helped me at all.
There's a huge difference between waking up to pee 5 times a night and 1-3 times a night. That is life changing. Try it - I think you'll like it. Did your urologist mention the payment coupon that is available for this med? It makes my copay only $20 a month. Fantastic.
Every since you suggested that medication, it stuck. I started last night and the pharmacist said give it up to 8 weeks but results may be seen before then. I couldn't believe how elated I was to receive this! I can't use a coupon with my current insurance policy (Kaiser Permanente) but I'm giving it a 30 day trial. Last night, I went 3-4 x's, I think but I didn't sleep a full 8 hours, though.
Steve, it took the med about 1.5 weeks before I noticed the effects. You should definitely know in a month or two. Please let us know!
I'd recommend that you double check about the Myrbetriq Momentum Savings Program. It covers everything that my insurance doesn't cover, after the first $20. Pretty sweet deal. You never know if you might qualify! The link is below:
The Nocuria is not good! I was going once a night with the Botox but it's wearing off now and I went 3 times last night! Before the trial I'd sleep straight through! By the way I was reduced to 9ml after the 12 week appointment and its unchanged I was told at the 24 week appointment that it won't be changed again!
I dream of going 3 X's nightly! And it would be absolute heaven just to sleep the entire night away! I'm on 8 m.l. from 10 m.l. going up to 10.5 and hoping to be like KennyinPA and swell. Well, that isn't a pretty thought.
I've got to say Botox changed my life! Not good not being able to go normally again but I think it has made a huge difference! Especially when traveling! The downside is its lasted 6 months this time and 7 months last time! I've had it 4 times! Waiting to have it redone soon hopefully! I'm getting urgency but no leaks at all! After the Botox I was going 5 to 6 times tops
Today, when I met with my urologist, I had an ultrsound which indicated my bladder was empty which was great news for me! I am emptying! Because of that I will consider my new Rx for now. I've learned from you all that one must still catherize when receiving botox injections and there is a minimal risk. I'm holding out until there are no other options. I wish you relief on your next one!
By the way, I've learned that there is a device they can implant near the bladder to ensure flow. This procedure is commonly done for women so that option may be on the table.
I looked it up: InterStim procedure - InterStim therapy is a reversible therapy used to treat urinary incontinence, frequency and incomplete bladder emptying. An implantable device is used and sends mild electrical pulses to the sacral nerves. Located near the tailbone, the sacral nerves control the bladder and the muscles related to urinary function.
I will add in that I think bladder function has improved. While I'm younger, 34, and was only starting to experience the difficulty to start symptoms, that went away when I started the trial. I did have one incident where it was a close and I needed to go NOW, which was interesting to say the least..Haha BUT It's flowing though, which is good!
Definitely weight gain. I started the trial around 185lbs and am now close to 210lbs.
That is very interesting! Have you noted your diary or talk to your nurse or researchers about these changes? I just informed my nurse yesterday about the decrease in my neuropathic pain and had to really think hard when I first noticed it as I had been continuing my Rx pain regimen in rote until I started late one evening.
My diary is pretty empty as most days I don't know what to say after I haven't written anything the days prior haha I go back to the site next month in which I will be discussing these changes. I'm now done with my home nurse, except for the visit if they decide to up my dosage. The urologist next month wants to do some test that measures pressure in bladder function. It sounds like a blast and I really hope my flight is delayed..Haha
That will be a urodynamics test! 2 probs in the bladder and they fill it to measure the pressures! It's quite quick and good to have it checked as my pressures were damaging my kidneys! Self catheters release the pressure so they are good now!
Agreed on the improved bladder function. Bladder problems were my first concrete AMN symptoms, in my mid-20s, and well before any walking difficulties. I'm now 41 and well used to having to manage my fluid intake and know where the toilet is, but I can't remember the last time I had an unstoppable urge to go. This does mean that I am taking more risks so I am sure at some point I'll get get caught out but my bladder seems very manageable at the moment. The only exception is at night time, like a lot of the other respondents. I seem to be going less frequently during the day and more frequently at night. Trying not to link this with the drug trial but ...
Not a problem there but my fiber intake consists of whole grains, flax, chia and hemp seeds, walnuts/almonds/cashews, Saffron Road crispy chickpeas and other legumes along with plenty of fruit and vegetables. However, when I gotta go, I do gotta go.
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