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Long Covid since March 2021- need to choose between Tylmos or Forteo?
Have had long covid since March 2021 with over a dozen chronic and recurring doctor diagnosed symptoms. My symptoms include moderate to severe myalgia’s, increased inflammation leading to bulging veins, headache, G.I. upset, paresthesias, and fatigue among others that are more intermittent.. The moderate to severe myalgias (just like fibromyalgia but Covid caused it) and fatigue are the most problematic and daily. I also have intermittent mast cell activation manifested as hives and itchy skin. My hips have osteopenia on Dexa but had a fragility fracture in February (thought it was muscle strain) and my spine in may had increased to -4.3. No fractures there yet but have no choice but to go this route . I have never done well with daily meds. PPI's for 9 years didn't help the GERD/LPR but docs insisted "to prevent cancer." Unfortunately they played a role in my osteoporosis. Before starting the meds Dexa was normal. Since age 16, I did weight bearing aerobic exercise daily and started weight/resistance training in my 40's. Currently I am age 73. Trying to decide between two bad options in my opinion. Could never do the fosamax drugs in the past because of GERD and newer ones seemed too scary. Anyone out there with Long Covid who has done OK with these drugs?
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You could do Evenity: monthly injection at doctor's office. Otherwise, it's a daily self-injection for 18-24 months.
@njx58 I know about that option and it was my original plan but because my alkaline phosphatase is low and despite genetic testing it doesn’t seem I have hypophosphatasia but no other reasons found it is risky for me then to go on reclast because it is contraindicated in those who have HPP. My bone doctor won’t start Evenity until I know I can tolerate Reclast. Prolia is out for me so at this time there is nothing I can go on afterwards. The recommendation is to at least build some good bones for two years unfortunately what comes next when all of that class of drugs are contraindicated. Unless that alkaline phosphatase comes back to normal and stays that way I really have no maintenance options right now. So basically this is my only option for the next two years and at that point if that other enzyme has stayed above normal I do have a maintenance if not it’s better than leaving my bones as they are even though ideally you need to follow up with something PS. As I’m sure you know you can’t just stop Evenity and not do something else because it builds bone rapidly but if you don’t have something afterwards you lose bone more rapidly than ever and you could end up worse than when you started. That is why my doctor always make sure a person has something that they can follow the Evenity with
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1 ReactionI would like to comment on your GERD and being on PPI's for 9 years! PPI's from what my doctor told me should not be taken for more than a year. I was taking PPI's and went to my doctor after my third time on that med. I told her every time I'm put on this PPI and then go off, my symptoms return. I do not know what this is doing to my insides because I cannot see my insides. Unlike a cut on my hand that I see is healing if I am treating it with the right product. Bless her heart, my doctor got on the phone with the GI department and I was scheduled the next day for an endoscopy. After the procedure, the doctor came in and told me point blank "Do NOT take that med, the PPI, ever again. It has made your cells "hypertrophic". Look that word up - it's not pleasant.
And that is when I decided it was time for a BIG change and turned to Functional Medicine - doctors who treat the CAUSE of your symptoms - get to the root cause of symptoms and healing occurs. Western medicine treats the symptoms, unless your lucky and have a doctor who understands the difference and wants to help you get cured. If you want to look at finding a functional medicine doctor, you can find one by city and state on the website ifm.org. You will need to scroll way down to "Find a Practioner Near Me". It's a journey getting back to health, took me over 6 years after being put on a PPI 3 times before I changed to a functional medicine doctor. BEST to YOU!
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1 Reaction@moumtainlover, if you haven't already searched, there are a few threads discussing HPP or issues related to low ALP.
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1 Reaction@mayblin thanks. Just joined yesterday so I will. It is frustrating not to know for sure but all the testing should rule it out but apparently the genetic testing doesn't catch all of it. So it is wait and see but until I know for sure and now the safest is the daily injectables. Before that low value alkaline phosphatase came back (first time below normal at age 73) I was going to do IV Reclast and then a year later go to the doc each month for Evenity. Medicare (regular) totally covers the in office stuff. The injectables are not covered as well though for 2027 there is an out of pocket max of 2400----another reason I am not starting until January 2027. My Current part D plan only covers Forteo and if I started I would have an extra year of the 2400 or more if they raise if in 2028.
@gigi4 I realized what you did back in 2009 when I stopped them totally. Prior to that they were pushing those drugs and I tried one after another had mainly lab abnormalities and none improved my symptoms or regular endoscopies. Once I stopped them I continued my life style changes I was already using and made dietary modifications and I manage it well symptomatically. The Endoscopies have been normal my laryngoscopes still show inflammation because I have LPR as well. Sleep with the head of the bed elevated 9 inches or so and totally slanting down. I was paying attention especially to the People's Pharmacy radio show (and podcast) which in 2009 and earlier they started talking about PPI's leading to osteoporosis among ever things. Now there is a black box warning but back then GI doc said need it to avoid cancer. PS: Have warned people since 2009 about the dangers of these drugs and how no one should be on them except for a short period or if they have a medical condition that warrants them. I think Zollinger Ellison might be one but it's been awhile since I researched it.
@moumtainlover Actually, it's Prolia, not Evenity, that has the severe rebound effect if you stop with no followup. The others have it, too, but not to the extent of Prolia. It has to do with how Prolia works.
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1 ReactionEvenity has the same rebound according to the bone experts I’ve seen they both do both Prolia and Evenity. With both of them you need to go to something else if you stop.Evenity you can only take for one year. There was also an osteoporosis expert on the Peoples Pharmacy that basically said the same thing about both of these drugs that you need to have another one to go to when you stop them. I have never been on any osteoporosis drug and even though I would get better results with Evenity my doctor says you can’t take a chance starting it unless you know you have something else you can go to. So her plan was to start the Reclast first. But then I had the low alk phosphatase.
@gigi4 As someone who has been taking PPIs for years and years, along with OTC famotidine, I cannot imagine what it would take for me to be without them. I already do most of the suggested non-med measures. I develop reflux eating nothing at all. My diet , of course, could be better, but I am busy , out of the house a lot during the day, and under a lot of stress, so it's hard for me to be organized enough to do a lot more with that. Wondering what it would possibly look like to be off the meds. My endoscopies show gastritis, a small hiatal hernia..nothing worse. What kind of regimen do you have?
@mountainlover1
Part D Medicare limits your copay for catastrophic drugs to $2100 annually regardless of how many catastrophic drugs your are taking. Could you explain the “2400” comment? Take care.