Reclast?

hopedreams

Hi there..while u are researching.. U should also read about fosomax  actonel..and the reclast..IT'S ALL VERY DANGEROUS STUFF..  class action suit going on now with fosomax !!  company is being sued by many women.. many women here [on this link ]are just going their merry way..& not researching..it's sad..is all I can say..I am sure glad that I NEVER TOOK ANY OF THOSE DRUGS..& NEVER WILL... GOOD LUCK TO U CAKES..!! just be careful....Dr.s are getting big kick backs..for prescribing poisen..I think we have all been through enough at this time

Ariom

hopedreams, do you really believe that women here are simply being manipulated by Doctors and not researching the medications that they are taking?

If we were to take on board every contra indication, of every medication and reject it, because of that, no one would ever take anything. Do you think the women here actually want to do Chemo?

I for one, have only recently started taking Actonel after getting a -3 reading in my lumbar spine 11 years ago. I have done everything possible, in the "natural" world to improve that reading, but alas, at almost 61, I am still reading -3, I haven't decreased further, but I haven't improved my reading either. I had read all the negatives about this medication, and avoided, for a very long time, but do I want to risk a fracture or pain from degeneration from osteoporosis? I don't think so!

I fully support your choice, not to take any of these medications, you don't say that you are actually someone who has a devastating bone density reading, who needs to make that choice, but to suggest that others here follow blindly, without researching and making informed decisions, is both unfair and wrong.  

I doubt there are many who haven't read, or at least heard of Big Pharma, but we have to be pro active, take all the information and process it, then do what we believe is going to be right for us.

Momine

Ariom, that is really encouraging though that your reading has remained staple all this time.

conniehar

Yes, that is really encouraging!  I wish mine would stabilize! 

Great news on the height issue lago!  That is one of those things that can definitely fluctuate depending on who is doing the measuring!

lago

hopedreams you have already posted your opposition to these drugs on this thread on March 31st. We get it. But as Ariom we are well aware. I know my MD even talked about the issues with this drug... and she said I would only be on it for 3 years. I am too young to have osteoporosis but in spite of doing all the right things my risk factors, chemo and Anastrozole worked against me. For the most part you can't reverse bone loss. Breaking bones in my spine can cause serious issues.

Ariom

Momine and Connie, no one was more surprised than I was when I had this recent reading done. I had actually had a slight improvement in my hip, but since I have moved to a new area and have a new Doctor, he had a fairly "over the top" reaction to that whole reading and insisted that I do something now if I want to continue the active life I have.

I knew that I should have taken these meds years ago, but I had spent 7 long years on the chemo drug Methotrexate and steroids  and had a bad reaction to Reclast when it had first arrived in Australia. I hate taking anything, if I can help it but having RA, made it impossible to avoid those nasty medications.

I have an appointment on Monday to see the Doctor to change the sachet part of this drug suite to something more manageable. So far I haven't had any issue with the Actonel tablet, just the nasty calcium and vitain D sachet that goes with it.   

Ariom

Lago makes a very good point about being too young for osteoporosis, so was I. The medications that were needed for her cancer and for my RA were the causative factors in getting this way, in the first place. I railed against them because I had done a lot of research about them, and knew the downside, but sensibility had to prevail and I realized I could incorporate  alternative strategies and natural products into this necessary regime as well. But had we not taken those medications, where would we be now?

lago

Ariom I just started Fosamax last Saturday. I was diagnosed this past October.

Ariom

I will be very interested to hear how you go with the Fozamax, I started Actonel  the week before you. I don't seem to be having any symptoms of SE's at all from the actual tablet, only when I take the fizzy sachet each day, for the rest of the week.

Sorry, I thought you were saying it had been caused by your Chemo, but I read it now that this is a preventative measure for you, because of the chemo. I should have started so much earlier, like you.  I knew my reading was bad a very long time ago. I was Dx with RA at 43 and it all really began from there.

Deleted my previous post, as I had misread Lagos previous post.

lago

Yes it was caused by both chemo and Anastrozole. Biggest drop after chemo then stable for 2 years after but then dropped again. I'm at -2.6. This is to prevent more bone loss and going further into osteoporosis. 

Ariom

I understand Lago, I just got a bit ahead of myself! LOL

hopedreams

lago & arium..u gals go for it..!! wishing U the best of luck.. I will NO longer give U any more info on this particulare conversation.. & YES  I do have osteoporosis..FYI

 

 

 

 

.. and have a WORLD RENOUN  fantastic  Dr. who  is helping me to grow bone in a non union fracture in my hip..I fell on a cracked sidewalk & fractured it [my hip/femur]..last July.. my bone is now growing and doing very well..He is one of the 3 drs in the United States that does this procedure..He is an orth.surgeon and also a METABOLIC SPECIALIST..   this particular procedure is done in Europe often..He was trained there..but now doing it in NYC  only..He is against all of these Poisen pills.. for osteoporosis.. So I am taking his advice and not taking any of them... **as far as I know..the only drug that HELPS TO BUILD BONE IS CALLED...*** FORTEO.. I am not taking that either..since I have an active skin cancer going on..chronic rare type of squmouse cell carcinoma. ps  I was dx with osteoporosis 2 yrs ago..and refused to take those meds..I am sure if the NYC sidewalk wasn't so badly cracked in a construction area..I would have never fallen down & fractured my hip..

lago

good for you hopedreams. I hope this works out well for you but stop calling these poison pills. We are not passing judgement on your choice of treatment, please respect ours. It is offensive to call my treatment plan poison.

Momine

Hopedreams, would you post the name of the doc who is helping you, please.

lago

Looks like I might be trying Prolia. Fosamax is giving me heartburn. Reclast is IV given in the arm. I have LE in one arm and the other is at risk so my Reumatologist feels I should go with the Prolia (shot every 6 months) in the thigh. We just need to see if the insurance will approve it.

Ariom

Good Luck Lago! I am doing really well on the Actonel (edited to write correct name) tablets. No heartburn at all, but I am taking Nexium with it.

My Doctor wanted me to do the Prolia injection too, but I wanted to give the weekly a try first. I have spoken to several women who are on the Prolia and no Se's for any of them!

lago

Well she warned me that many do get SE from it but it doesn't always last. I'm just so sick of taking drugs to counter act drugs. Nexium effects calcium absorption. My calcium is only 35 now with supplements and diet. That's why I didn't want to continue and try the Nexium route... but if my insurance refuses then I might have to try.

Ariom

I know it's a damned if you do, damned if you don't, situation.

I am swallowing 4 giant horse tablets for calcium + D every day now, I couldn't take that awful fizzy junk that came with the Actonel. 

When I went to the Doctor for another Prescription I told him I was having trouble with the fizzy sachet of Calcium and he just blew it off by saying "Oh, there are lots of people who can't take that, I'll give you a Prescription for the tablets alone!" here was I thinking I would have a fight on my hands over being a bit precious about this stuff and it wasn't an issue at all! I took it 6 days a week for a month and felt lousy.....Grrrrrr!  

I wish you an easy time with no Se's from the Prolia!

lago

Thanks Ariom. I hope no SE. Otherwise I don't know what I'm going to do.

Ariom

lago, I will be interested to hear your experience.

SpecialK

lago - if your insurance doesn't cover Prolia, or not enough of the cost, I think there is a program offered by the drug manufacturer.  Here is a link:

https://www.proliaplus.com/

When I had the first injection they were not sure how much my insurance would cover, so my MO's office had me fill out some forms for this program.  My insurance ended up covering, and all I have is the co-pay each injection.

You know I am the Prolia cheerleader, but I have had zero in the way of SE from the injections and I have been getting them for a couple of years now.  I have had reflux surgery and can't take the oral drugs - I tried Actonel and Boniva, but could not tolerate the GI SEs.  This was well before my BC diagnosis, and I also fit much of the typical profile criteria for osteoporosis.  I think you have seen other posts of mine regarding the reversal of my bone loss - pre-BC I was osteopenic, went right to the brink of osteoporosis after chemo and 6 months of Femara, started Prolia and now have normal measurements at each point.  Not osteopenic measurements, normal ones.  I like that this treatment is a targeted monoclonal antibody drug like Herceptin, and does not coat the bone like bisphosphonates and make them less elastic and potentially brittle, but slows the old bone removal mechanism, allowing the new bone production mechanism to catch up.

cookiegal

I have now had recast 4 times I think.

The first time the flu se's were pretty dramatic, but my next bone density went up 7 percent!!!

The se's have been much milder the three other times, they hit quite a bit later, and usually it is a headache for a few hours.

I do worry 'bout the jaw thing.

Ariom

SpecialK, you make me want to try Prolia!

It is on our PBS system in Australia and would only cost about $6 each treatment!

I too, preferred the way it works, as opposed to the Actonel, but have been too scared since the awful Se's I got from Reclast (aclasta in Aus), to try it.

I don't know if the tablets you took were the enteric coated ones they have now. I am guessing that is why I am not having any GI Se's, because I am very prone to reflux.

I have just decided to commit to the gym for some weight bearing exercise and will take another look at Prolia.

lago

SpecialK I am all excited. I hope I react just like you. but even if I have the same as cookiegal I think I'll be OK. I too prefer the way this works but this is usually the drug they prescribe if all the others don't work. Nice to know that I might even be able to reverse on this drug!

Ariom I was taking the Generic form of Fosamax

conniehar

HI all - too long of a story to share but I have been trying to schedule my second infusion of Reclast since December.  My endo's office is just a bunch of bumbling idiots.  Last Monday, I was actually at the infusion center and had to leave because the order was screwed up by my endo's office.  It was the last straw.  I have an appt with another endo that was referred to me by a local gal on this board in the beginning of June. 

I like the positivity on this thread about Prolia.  I might ask the new doc about that as Reclast still scares me even though I had minimal side effects with my first infusion (however, did not see ANY positive results).

Good luck to all.  Think about you often!

lago

Connie the typical course is if you don't have results with the other meds or your osteoperosis is so bad they usually move you to Prolia. At least that was my understanding from my Rheumatologist. That's why I think she is really going to have to fight to get me on Prolia rather move to Reclast. I hope Aetna gets that I don't do IVs in either arm.

But Prolia can have many of the same SE as Reclast.

SpecialK

I should also point out that it takes time  - up to two years - to see improvement with Prolia.  I had a bone density the same day as the imaging that lead to my BC diagnosis which showed stable osteopenia as it had for years. I had another after chemo and the short time on Femara, which showed a pretty rapid loss, which surprised me since I had been stable for 10 years.  The damage to your bones is something that doesn't get a lot of discussion when you start chemo and an AI.  My MO did not bring up any bisphosphonate drugs as possibilities and went straight to Prolia - we did not discus the previous reflux surgery, or the fact that I had tried bisphosphonates when I was first dx'ed with osteopenia.  He just likes Prolia because of the drug mechanism.  I had a bone density after three injections (18 months) which showed the significant improvement.  I have to say, I was pretty surprised.

lago - I am also wondering if your MO orders it maybe your insurance would cover it - I get it from him since it is a direct result of systemic treatment for BC.

lago

specialK my onc was actually going to use my osteopenia before chemo to get me on Zometa but then the studies showed they didn't help bone mets a couple of months later… then the following year I think they did but she never put me on it. As mentioned my osteopenia got much worse after chemo/chemopause/6 months on Anastrozole. I actually told my onc on my 1st visit my 2 main concerns was my heart and my bones. That's how I got the dexta scan before chemo and found out I had osteopenia. 

My onc only prescribes these drugs for her patients with mets. Everyone else gets referred to the rhuematologist I am now seeing. Its nice that she is used to working with breast cancer patients. She totally understands my issue with not getting IV or BP in my arms. (My MO still fights me about the BP on my ankle.)

Yes I know all these drugs work slowly and take about 2 years to show changes.

OneBadBoob

Hello all.  I am coming late on this discussion.

From what I understand and have been told, Reclast and Zometa are the same drug, just different dosing.

I received six Zometa treatments back when it was given to help prevent bone mets, since I also had substantial bone loss from chemo and AI's.   I knew about osteonecrosis of the jaw but was not worried since I had no dental problems and no dental work that needed to be done.  

My oncologist was totally on board with this.  My second opinion onc was not.  My rheumatologist was not.  He mentioned he had seen many cases of spontaneous ONJ without any dental work being done.  My dentist begged me not to take it.

Cutting to the chase I did indeed develop ONJ.  Spontaneously.  It is a horrible painful condition that often does not heal.  Ever.

I was lucky that my dentist sent me to an oral surgeon who sent me to one of the top experts on ONJ in the country, who was out on the Island.  He had to remove several teeth and a 12 year old implant and a large piece of my jaw.

I was lucky.  The wound eventually healed.

Discussing this with my onc, he stated I was only the second patient of his who developed ONJ in his years of practice, the other patient had a tooth extraction.  He also mentioned that new research was showing that the half life of Zometa was close to ten years.

I don't want to scare anyone but please have all dental work necessary completed and healed before starting.  It may be difficult to find a dentist or oral surgeon to work on your mouth knowing a history of treatment with Zometa.

Also follow up on your bone density  and don't take it any longer than necessary.  

I know my case was unusual but it does happen.

P.S.  I have LE in both arms and received all my Zometa infusions in my foot.

lago

OneBadBoob I know you can get Zometa in your foot. My Rhuematologist explained that none of the nurses are trained at their infusion center to do it there. I've actually been thinking that maybe I can find a place that will give it to me in my foot. I personally think that is BS that they won't access my foot.