Has anyone been using Tymlos?

@txmom Hello and welcome to Connect. Our mission as mentors is to do whatever we can to improve the quality of life of our members. We cannot diagnose or prescribe because we are not medically trained. What we can do is share our personal experiences as well as introduce you to others who are willing to exchange information. To that end, it would be helpful if you could share a bit of your Osteoporosis story, There seem to be three standard questions. How old are you? What did your scan numbers tell you? What has your clinician recommended for you?

I am glad to see someone else in this osteoporosis discussion who has walked down my Boniva path. I sometimes thought I might be imagining the intensity of the pain. I remember wanting all my teeth to be pulled. Thank goodness my PCP believed me and took immediate action.

So, if I have this right......you have three choices. Tymlos, Forteo, or Evenity? Would you be comfortable telling me why you chose Tymlos? And I will let you know that I had no jaw issues with Tymlos which I recently finished after two years. Other than the squeezy tummy for a few days, I had no side effects. I have migrated to Prolia and have only had one injection. So far....no side effects.

By the way, have you had any fractures?

May you be content and at ease.
Chris

Thank you Chris. I am 81 years old, my bone density number was 4.6 in March. I have always been active on the farm with only minor problems with arthritis until I suffered a compression fracture in my upper back in March of this year. My doctor recommended Tymlos and after finding the cost would be $550 a month, I have applied with the clinic's help from Tymlos.

Contentment does not come easy with having to rest often and not being as active. It is a big help knowing you have had no problems from Tymlos with your jaw pain. Thank you again for your reply.

Martha

Good evening @txmom, Let me look at this again. Do you mean 4.6 or -4.6? And was that from your spine or wrists or perhaps hips?

And the $550 a month....I wish it had only been that much. Depending upon your insurance and whatever donut holes you have, the bill was high at $1200/mo and then low at the end of the year like $99 per month. So the average was $121 per month for the two years.

I am glad you are going to get some financial help. Handling the $$$$$$heavy months was tough.

May you have comfort and ease.
Chris

Radiius has an assist program for people with low income. I am getting Tymlos for free. The cost prevented me from doing it last year, and I want others to know about it. So far I am having vertigo and headache. Forteo made my heart speed up and palpitate and I have afib so that was a no go. Tymlos is not affecting heart so far and blood pressure went down but not scary low. I have two lumbar fractures from osteorposis- recent- and three traumatic thoracic fractures. What a mess. Just turned 70 and feel suddenly like I am disabled. Lowest score at femur neck was -3.9, lumbar about the same at -3.7. I did cancer meds that made things worse. Good luck everyone!

Hello windyshores and Chris, I'm not sure about the number. I just remember the doctor said my average bone density was 4.6 (but could have been -4.6, since I know nothing about it) and he said it was worse than any he had seen. I have osteoporosis in my spine and right hip and osteopenia in my left hip. My fracture is causing pain when I use my arms and pain across my upper abdomen.

The $550 was after insurance and my husband has a very high medicine cost already with his health issues. I am sorry you have had so many problems, windyshores. I hope you have good help.
The cost you quoted sounds great so I am hoping to find out soon if they can help me. I think with my donut hole I would be paying $350 the rest of the year.

The information you all are sharing is such a help. Thank you.

I've been reviewing all of the comments in this discussion because I haven't been here for a while. @artscaping You said the price was high for a month or so before you hit the donut hole? For me, it's longer than that. I started on Tymlos in March and the price is still high for me now. I know it will drop at some point, but it hasn't yet. I'm due for a new prescription now but I am delaying it for a couple of weeks.

I am delaying my next month on Tymlos because I am having a lot of fluid retention, particularly in my belly. I have heard others refer to it as having a "puffy belly". Some, like me, are also experiencing fluid retention in their feet and lower legs. My physician has not heard of this so I checked with my transplant team to see if it was possible that it was from anything there and they said no. I did also check with my Tymlos "clinical educator" and she too had not heard of this side effect! Both doctors have suggested I see my PCP but after having heard of numerous others on Tymlos experiencing this I am just assuming that is the cause. I plan to take two weeks off of Tymlos to see if that makes a difference. Right now my pants (even my underwear) are all tight, as are my shoes. Despite neither my endocrinologist nor my clinical educator having heard of it, I think in a case like this where many people have commented on it that the anecdotal evidence is very persuasive.

Has anyone here had this problem? I guess it's more of a nuisance than anything but still, my clothes don't fit! Other than this, all other side-effects subsided in a short amount of time. This didn't start until about 3 or 4 weeks ago. If that's my only problem I will stick with Tymlos because the results I have heard of have been very good. I just dread deciding what I will do when I get off of Tymlos.
JK

So it is possible that dizziness and haadache will improve with more doses of Tymlos? I am trying to stick with it. I have been doing half doses every three days and working up to full dose every day. The vertigo and headache are concerning. I don't have much choice at this point. My FRAX shows 38% chance of other fractures in 10 years and that is much lower than the real risk since I have 5 total fractures.

@windyshores Those side effects cleared up for me within a month. The only symptom I have now is "puffy belly" and some fluid retention in my feet, both of which started about a month ago. I am just finishing my fourth month, so it took three months for those to present.

For me, the light-headedness happened the next morning! I started at a full dose and have stayed at that. I do plan to take a break for a couple of weeks to see the fluid retention goes away but in my past experience, it can take a while for fluid retention to clear up.
JK

Thanks! Yes the side effects are delayed. I am dizzy the morning after I do the injection. With Forteo I had an immediate reaction, lung pain, short of breath, fast heart, faint and that lasted about 3 hours. If I didn't have episodic afib I would try Forteo agaib . I already had episodic vertigo so not sure if Tymlos will be tougher, I saw an immunologist to try to get onto Forteo but they said my immune system was overreacting to it, I'll keep trying with Tymlos!

Hi JK.....You are probably better at the numbers than I am. Most of the lower prices are in the last three months. Without risking giving you wrong information because of a lousy memory, I will just tell you how I got a low average. One, I talked to the insurance resource person.....and she gave me some advice which helped. First talk to your pharmacist about specialty pharmacies. Then talk to the specialty pharmacy to find out the ups and downs of insurance coverage. Then talk to your endocrinologist or other clinician about getting a 3 month prescription.

What then happens is the pharmacist places the orders so that it is when the prices are the most advantageous. He/she keeps checking on the legal reorder date and works around it so that you get the lowest prices based on the insurance calendar.

I don't know if that helps and I don't know if it happens exactly that way. It did result in financial coverage that I could handle. The other choice is to see if you can qualify for financial support.

Good luck.
Chris