Tymlos side effects I've encountered

@sarahstuart my doc didn't do any testing to see if it worked, but did test calcium and Vitamin D. Near the end of my treatment I saw Dr. McCormick, who suggested a P1NP test and my PCP ordered if for me.

Thank you for your reply. It’s good to know you were able to help ease it with your legs up. I will start low and work my way up. I will stay positive and pray this works.
Best wishes to you on working your way up on the dose

That’s good to know windyshores. I have the bp cuff and will monitor myself. I got a very mild case of Covid last year and only symptom was low bp. It was in the 80’s over high 40’s and they had me eating salt and it finally got back to normal. So I have been using more salt in preparation for tymlos. You make me feel more at ease about starting my tymlos. My endo doc doesn’t feel a partial dose works so only wants me on the full dose but I have the blessing from my primary care doc to start at two clicks. Also Dr Mc Cormick agrees with starting that way.
Thank you for all your support and words of encouragement.
All the best to you with your reclast test dose. Please let me know how that goes.
Candy

I had a 20% gain in spine on 6 or mostly 7 clicks. That, for me, was better than quitting! My doc is head of endo at a major hospital and was happy with 6, even happier with 7, but I had tried for years to tolerate something. Studies were done with a full dose so I can imagine docs have to support the full dose presribed in the study.

Yes so true. It’s so nice you had such gains on a lower dose. I won’t give up.

Just an update. My pain returned and I am not sure if it is related to activity level. Does anyone know if metabolic bone pain from Tymos is exacerbated by physical activity. I see a correlation but I also have bad knees and foraminal spinal stenosis. I am in my 7th month of treatment.

Also, my PROCOLLAGEN TYPE I INTACT N TERMINAL PROPEPTIDE jumped from 20 to 156, a good sign that bone is increasing.

Thanks in advance.

Gwpitt.

One more comment. My rheumatologist recommended taking 80 mcg of Tymlos Monday, Wednesday and Friday with 4 off days rather than a smaller daily dose. I am not sure if that makes a difference.

Gwpitt.

Just to be clear, when I post about starting with a low dose that is only so as to ramp up as quickly at tolerable to a therapeutic dose, and many won't need to do that. For me it was necessary (ER with full dose initially) and it also may help those who would ordinarily be too anxious about taking it. But the goal is a therapeutic dose and I was told 6 clicks of the pen and above was therapeutic. Of course I aimed for full dose.

I have not been able to tolerate 8 clicks until the very end of my treatment but still had 20% gain in spine and 9% in hip.

I would be curious what your doc said about alternate days. I assume that is full dose on alternate days. I would not be able to do that. If I could tolerate a full dose I would do it every day! Sometimes I alternate 6 and 7 clicks during a week when I am feeling side effects.

The half life is one hour or so so it does not build up to a steady state, so maybe doing it alternate days is fine but my doc suggested lower dose, on a daily basis. For me it is not relevant because full dose even once a week would be impossible for me and I would have quit.

I only did 3-4 clicks in the first few days to get used to the medication and the whole process, but I doubt this dose was therapeutic, and my endocrinologist was very adamant that I try to reach a therapeutic dose as soon as possible. I kept going up to get the most benefit from the treatment. I have been stuck at 6 clicks for a few weeks because although side effects have greatly diminished, I still feel nauseous and tired for a few hours every day (and have occasional leg cramps or back and hip pain, although very tolerable). I'm waiting a little more to see if that diminishes so that I can try 7 clicks. I don't want to go through all this for nothing.

One note to everyone ramping up. Keep track of when you reach 6-7 clicks so you know how long you have been on it. I just realized my MD wants to do a Reclast infusion in July because the date of my original prescription was June. But I took a break after going to the ER with full dose, started low in Sept. and reached therapeutic levels in Oct. I am actually using Nov. 1 as my start date. We'll see if insurance allows enough to last me until Oct. so I can get the whole year despite the confusion about dates.

BTW second opinion also says no to Evenity after Tymlos.