u/DueSurround3207

I was on prolia for eleven years for severe osteoporosis. My scores started out at -4.1 T score spine and -2.2 T score hip in 2014 at age 42 when I was first prescribed Prolia. I was recovering from anorexia nervosa and already in surgical menopause since age 33 but on HRT estradiol patch full dose. I really don't know why doctors chose Prolia over Reclast infusion, but that is what I started with in 2014. I suspect they were worried about my kidneys due to the eating disorder (I am fully weight restored and recovered by now) and Reclast can be hard on that. I did very well with Prolia, no side effects, and it raised my scores to -2.0 spine and -.8 hip by 2024 and they were very stable. In February of this year I was due for my Prolia shot when my insurance suddenly decided I didn't need it anymore due to my higher scores and the length of time I was on it. So they denied coverage, despite my doctor appealing twice and my high risk factors for rebound effect coming off (being on Prolia long term, severe scores at the start of taking it, young age).

To mitigate the danger of coming off Prolia and rebound effect, I was prescribed an infusion of Reclast in mid March, exactly seven months from my last shot of Prolia. Well, last week I had another dexa scan and my scores are already dropping pretty dramatically, with spine at -2.7 (from -2.0 in 2024) and hip at -1.2 (from -.8 in 2024). Apparently Reclast is not preventing or even mitigating the rebound effect. My doctor wants to appeal to insurance again and try to get me back on Prolia. She thinks it is too dangerous not to given my risk factors and how fast I am losing bone density. I am very very reluctant to go back on Prolia (even if insurance will cover it which I am not confident of), fearing if I do I will never get off it again. I read that some people who do not respond to the first Reclast infusion post Prolia are given a second dose before the one year dosing schedule. I want to try this strategy, but insurance may not cover this either since it is not standard protocol, and my doctor is reluctant to do that.

I am wondering if there is anyone else here who came off Prolia after ten plus years on it and required more than one dose of Reclast to stop the rebound effect. Did the second dose help? How did you avoid fracturing? When was the second dose given and did you have trouble getting insurance to cover it? I am so afraid I am going to crumble with being in the eye of the storm of this rebound effect so to speak. I really don't know what to do and I need to make a decision soon. I'm hoping to hear from other who were on Prolia 10 plus years and came off it safely. Thank you!

I have been struggling with urticaria (hives) for eight months, since Mid November. It seemlingly started out of nowhere. I woke up one day feeling nauseated with a dull headache and fatigue. My lips started to swell and then the hives started on my face, down my neck, into my chest and down to my legs. I had a stressful event a week prior so I chalked it up to that. I had hives for five weeks in 1999 during a stressful time period. After three weeks these recent hives went away and all was well until March. then it started again the exact same way. Only it never stopped. The headaches, nausea, swollen lips (and now eyelids), tight throat and shortness of breath all seem to precede a major attack, with mild hives the rest of the time. The major "attacks" last up to a month (though swelling of lips, tight throat etc only lasts a day). I've had about five major attacks so far.

Last Tuesday I went back to Allergy. I had been there in 2022 for chronic dermatitis that lasted two years (also on eyelids, arms, etc) and had allergy testing but nothing was found. That went away in 2023 with no explanation. Again on Tuesday I was tested for 23 substances, including dairy and gluten. It was skin pokes for the testing, no blood work. No immediate reactions, all negative. But the next morning I woke up and my arm was burning and itching. I had hives at every single hole from the pokes the previous day.

At any rate, the allergist told me to go dairy and gluten free for at least three months, even with the negative skin test (he had no explanation for the next day reaction). I am not new to dairy free. I was vegan for 6.5 years (2011-2017) before going back to eating animal products to recover from anorexia nervosa, which I am fully recovered from. But I do recall that when I added dairy back I started noticing chronic sniffling and sinus issues. Nevertheless I was so happy to be eating dairy again I ignored it. But I was so desperate by the time I went to allergy I was willing to try anything. I have been through all the antihistamines at up to 4x the dose (Zyrtec, Allegra, Benadryl, Claritin, Famotidine etc. I was also prescribed hydroxyzine at one point. None have worked. I was given a five day course of prednisone 40mg when I had my last major attack with sob and throat swelling and it helped but within 24 hours of the last dose the hives came back.

So I have been dairy and gluten free for 4 days now and my hives are almost completely gone, save a few spots around my ankle. I am very reluctant about doing this diet because of my eating disorder history and the hardship of it but I can not seem to find anyone willing to do more extensive milk or gluten allergy testing to confirm I am doing the right thing.

Just wondering if anyone else had hives, swelling of lips and throat etc from dairy? I read about digestive stuff but that just isn't an issue for me except the mild nausea that precedes an attack. Was it an immediate reaction or delayed? All my reactions seem to be delayed. Nothing is ever immediate, which makes this more frustrating to pinpoint. But right now the hives are the calmest they have been in months. My allergist said dairy and gluten contribute to inflammation so maybe its more to do with that than an allergy? I'm too afraid to add back dairy or gluten and rock the boat. I rarely read about hives on these dairy and gluten free forums so I want to hear from those who have that as their allergy. Also, what tests did you have to confirm those and what type of doctor/dept did them. Thank you!

For the record, I am 53 and have struggled with diagnosed AvPD since I was 14. I had a bout of hives that lasted for five weeks when I was 26 and had just moved out of a halfway house and was searching for work. Then it went away until last year after my husband of 27 years passed away. I forced myself to go to a church just to find a community to keep from totally isolating and in my grief as I have very little family, no kids, only one friend. That is when the hives started. I was so stressed out just going to church, making myself join groups there and volunteer. It was all too much. The hives were severe, sometimes also causing my mouth to swell, hard to breath (throat closing up), headaches, nausea when at its worst. I left church for several months, both from stress and because I had differences in beliefs/social values than the church I attended which was way too conservative for me. I started trying other churches in late March and have been trying to get to know people at one particular group (Its a Quaker Friends Meeting) but it is stressing me out way too much and the hives are out of control again. Yes my doctor has me on Zyrtec, famotidine and hydroxyzine while I am on a 3 month wait go get in to an allergy dr. But I am 99% sure my hives are induced by stress/anxiety.

I am wondering if anyone else has stress induced hives as part of your AvPD and how you are managing them. I also have zero idea how to be social with people even after all these years. It is very very hard to get to know new people. In this particular Quaker meeting, they all know each other and have known each other for years. I am the new person and very few of them are welcoming and friendly towards me beyond a simple hello. I feel so awkward. I am thinking about giving up on it. I am just so discouraged. I cry all the time quietly to myself. I feel like a different person than I was when my husband was here. He loved me so unconditionally and I miss that so terribly. The world seems so cold now. I feel like I am slipping so far back into the depths of my AvPD. I am in therapy but it isn't helping much at all.