Anyone unsure of their Tymlos side effects?

Posted by vansks @vansks, Feb 17 1:44pm

I'm starting my 3rd month of Tymlos. Right off the bat I was waking up with a mild headache that comes and goes all day. It's not horrible and I really want better bones so I'm ignoring it, I did report it. I am also more tired than usual, could it be from the headache, old age, Tymlos? How do we know? A few days ago I started getting an aching pain in my left calf, sometimes it runs from my hip to my foot. Anyone else have leg pain? It's not a cramp, it's a solid pain. Might be a long 2 years (sigh)!

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windyshores | @windyshores | Feb 17 3:39pm

@vansks when I started Tymlos I did it in the evening and woke up with a horrible headache. I switched to the morning and things were better. I know that seems strange! I would hydrate, eat something salty and try to be active after the shot. For some reason that helped vs resting in bed. But that's me.

In my experience side effects tended to fluctuate and ease over time. But I also regrouped and reduced my dose to two out of 8 clicks, then moved up to 4 clicks (half dose) then 5,6 and after several weeks 7. For me this helped with side effects. It sounds like you could ramp up pretty quickly since you are already doing full dose so you could go down to 4 clicks (half dose) for a week or two and move up quickly maybe. My doc approves this totally and uses it in his practice now, but I did it on my own.

Anyone doing this kind of thing needs to keep the pen refrigerated so it can be used past 30 days!

sue417 | @sue417 | Feb 17 4:47pm

Hi
How many mg are you doing?

vansks | @vansks | Feb 18 8:11am

80. Maybe I should have tried stepping down a bit, but I wanted the full benefit.

windyshores | @windyshores | Feb 18 11:29am

In reply to @vansks "80. Maybe I should have tried stepping down a bit, but I wanted the full benefit." + (show)

@vansks I got a 20% gain from 60mcg and then for the last year, mostly 70 mcg (I varied it depending on what I was doing that day but aimed for the highest I could tolerate).

I believe my body got used to it over time so tolerability increased. That may happen for you if you continue but if I were you I would try 60mcg (6 clicks) or even 40mcg and work up to 7 or 8 clicks. It helped me. I can't promise it will help you but it seems to be useful for a lot of us. But refrigerate the pen to last longer than 30 days!

sallyj2 | @sallyj2 | Feb 18 11:57am

In reply to @windyshores "@vansks I got a 20% gain from 60mcg and then for the last year, mostly 70..." + (show)

This was the most helpful info, it’s the only way I’d consider the drug. My Dr. finally acquiesced.

Justin McClanahan, Moderator | @JustinMcClanahan | Feb 21 8:42am

In reply to @windyshores "@vansks when I started Tymlos I did it in the evening and woke up with a..." + (show)

@windyshores, some good advice. I'd just like to add that if you are changing the clicks and dosage, it would be a good idea to discuss this with your provider as well. Changing dosages can have different effects (good and bad) with any medication and while this could help, it would be wise to keep the provider informed as well.

windyshores | @windyshores | Feb 21 11:01am

In reply to @JustinMcClanahan "@windyshores, some good advice. I'd just like to add that if you are changing the clicks..." + (show)

I always tell my doctors what I am doing, though sometimes after the fact. Great point. I am concerned that some on this forum are doing too few clicks on Tymlos (like two) and docs need to know - or that there is an idea that ramping up somehow avoids side effects. Tymlos side effects, if they happen, last a couple of hours at most, and my own intention in ramping up was to get as high a dose as I could possibly tolerate, assuming some side effects. My doc now uses this method in his practice so people keep trying.

drsuefowler | @drsuefowler | Feb 22 8:51am

I increased my Tymlos from 2 clicks to 3 a week ago. I am getting the expected dizziness and off and on headaches. Unexpectedly though, I have more pronounced ringing in my ears, as well as urinary frequency and urgency. I was taking 1000 mg of red algae calcium. My endo suggested that I cut that in half, since the urinary issues could be the result of too much calcium. I do not have a urinary tract infection and my blood calcium level runs high at 9.2. Has anyone else had these unexpected side effects? I haven't told my endo about the ear ringing, but I noticed this when I tried to take the full dose of Tymlos last year. In the past the ENT dr has just said that the ringing is hearing loss, but it can be irritating.

windyshores | @windyshores | Feb 22 3:03pm

I have tinnitus from loss of hearing (slight loss, loud ringing). I am concerned for you that such a low dose of Tymlos is not doing anything. That is a lot of calcium. Do you split it over the day? My level was 10.3 and I did not have those symptoms. I took 3,000 units of D3 while on Tymlos. Is your D level okay?

Do you think the dizziness and ear ringing are related and there is something going on that is not related to Tymlos? At two clicks it seems strange you would have such strong side effects.

If you can't get to at least 4 clicks, maybe your doc will switch you. I hope you are refrigerating the pen!

awfultruth | @awfultruth | Feb 23 4:23pm

In reply to @drsuefowler "I increased my Tymlos from 2 clicks to 3 a week ago. I am getting the..." + (show)

You are taking rather a lot of calcium though that depends also on how much you are getting in your diet. But, a calcium level of 9.2 is lower mid range per most of the testing labs. A quick search shows a number of sources citing 8.5-10.2 mg/dl as a typical range. So, 9.2 would not be high at all.