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@kilh hi there. it was for a medical reason, perhaps the result of my blood and urine tests showing way high calcium shedding and/or a high alkaline phosphatase level. and also some not good vitamin d issue. i wish it was due to testing for the propriety of a choice between medications. i have asked to work with an immunologist or even an allergist. i got no recognition of this, and i am in the Boston area, where one would think the docs would be on the cutting edge. i am extremely sensitive to chemicals, so this is a big issue for me. i have asked for titration. so far, having pushback. (despite the fact that Tymlos is now given in click titration). i had to stop Tymlos two years ago for side effects at the full dose. but had considered trying it again with the titrated clicks. doc said i am not suited to it or Forteo. and she is concerned about Evenity, “in case (i) have or develop lymphoma”. what ????? she wants me to have Reclast, i fear drug the overload. i am sooo fragile, even moreso than when i failed Tymlos and Fosamax.

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Replies to "@kilh hi there. it was for a medical reason, perhaps the result of my blood and..."

Kittiecat, that seems like an "out of the blue" comment regarding a concern about your having or developing lymphoma and the relationship to osteoporosis drugs. Are you at high risk for lymphoma?

@kittiecat7066 I see you have alot of issues and some similar to mine. My PTH was high, Vit D3 was very low, my ALKP was greater than 500, and Alt and Ast were pretty normal. Since 1965 I have worked in a hospital or outpatient lab mostly in the areas of chem and hemo.
My endo doc and I worked to bring my D3 up and my PTH to a normal range. Also worked to bring my ALKP down which is normal. So far no cirrhosis of the liver from liver biopsy. I think I was put on Tymlos because of my parathyroid and the drug deals with that gland.
Now in February, I got so fatigued, weak, lost weight which I did not need to do, and could hardly get much done in the house or on the farm. A short story is I went to ER and then to Main Hosp and to Rehab Hosp and finally ended in extended care for three weeks. I returned home two months later. I still was taking Tymlos up to about a week before all this occurred.

I need to get my annual checkup with the endo docs and my Bone Density is due. Many years ago I was taking Fosamax for years with no side effects but not much improvement. Years later, docs had me go on Reclast. I did not get my five years in only two (no side effects) but a dental implant got in the middle and never had any more infusions. Sometimes I wish I had. Looking at my scan results, from 2018 to 2019 my scores were lower(not good). So in came Tymlos(2021) I started at full dose for several months but got fatigued although I was retired now, I still had all my sheep chores to do (we raise sheep and cattle). The winter was hard on me, especially with lambing in the barn at all hours with ice and snow to fight. I got almost 5 months done and stopped the injections. Found out through Connect that I could adjust my pen clicks (starting @ 2 for a week and then adding more clicks as I could tolerate). I checked with my endo docs and they thought it was worth a try.
So I started at 2 and reached 6 or 7 with no side effects.
Everything was great until March 5th, my journey started and my life was turned upside down.
I came home with the diagnosis of AFIB and CHF. Who would have known? Perfectly healthy one day and now to make totally new life changes. As far as Tymlos goes, I would like to try if I could go back slowly again since this is one of the best bone-growing drugs. When I get my bone density done soon then we can make a decision. But living in the country and all my docs are 30 or 40 miles away(one way). I wish I felt good enough to drive myself and not take the other half away from his chores (I am not very good help anymore). I need to build my strength and confidence back up. I have so much buzzing in my ears, dizzy with some loss of balance. For me, I have had no problems since I got home to the war zone that was created while I was gone. Sure have no energy to get organized but little by little each day. Driving would really be wonderful for me, driving to the city would be fine but city traffic and crazy drivers, I am not so sure.
I did not get where the Lymphoma fits in, that is surely something I would have explained more clearly. Let me know what happens and what decisions you make for the future.

PS Forgot to say when I was Reclast, I would just run upstairs to the endo dept and get my infusion which took about 30-40 minutes. Then I would go back down to the lab and finish my shift. I did even feel any different from before and after. While I was still working, I never took the time to do any research on any of the topics that I have now read. I really was not very informed as to side effects, reactions, and causes. Since the mayo clinic connect came in my email, my knowledge gained is so much more. The people are so willing to help and guide and share their wealth of knowledge. I am so grateful to be a part.
In the meantime stay healthy and I will be interested in what you find out. Keep in touch. KLH

You are correct that Boston is an amazing medical center with some of the best doctors in the country. Keep asking around and you'll find a doctor that makes sense for you. I would suggest looking for an endocrinologist who also has a practice where s/he treats osteoporosis. I tend to think of endocrinologists as understanding the body's complex systems and many health issues tend to be systemic in the final analysis.