 Posted 16/09/2009 20:45:58
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| I have osteoporosis and also have an oesophageal condition which precludes me from oral bisphosphonates. I tried Strontium Renlelate, but suffered upset stomach. My consultant recomended Aclasta, a bisphosphonate given by intravenious infusion once a year and one of the few drugs licensed for men. It is fantastic and I would recommend anyone to try it. I only have to have it once a year and my bone density has increased by 8% after one year. The down side is trying to get the infusion done. Our local NHS do not seem to have facilities. The infusion takes 15 minutes, but nurses in outpatients are apparently not trained to give intravenious drips. Because it takes such a short time I cannot be admitted as a day case. BUPA will not pay to have it done. The drug is not hugely expensive (£300, the cost of dental treatment) and I can have it as a private patient, but I have to book a room for a day! So far, my consultant has been very cooperative, "borrowing" a room and a nurse for half an hour, but surely everyone on the treatment cannot be doing this. Does anyone have a solution, or am I the only one to have a problem?
David W
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Posted 12/10/2009 16:24:01
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Hi. You can get these on the NHS! OK so I may have special treatment, because I have higher powers in London due to a rare disease and also I was only 24 when I began the infusions, but I've had it on the NHS. I started with monthly doses, then it went down to 3 monthly and now I'm on the zolendronic acid.I am forced to wait around for doctors to put the canular in as and usually come out with the most amazing bruises due to it because as you stated, nurses for some reason aren't allowed to place I.V's. Get a second opinion, because you definitely can get it done on the NHS. They certainly do it in Cardiff.
Hels
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Posted 16/11/2009 16:55:48
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| You should NOT have a problem if your Osteoporosis is really bad, they have to give it to you. The only reason I can think why they're not giving it to you on the NHS is because it may not have been extremely serious enough for it, and medication can prevent it getting worse? 8% higher is brilliant, What was it before. They have to prioritise who really needs it the most. Nannon
Nannon
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Posted 16/11/2009 19:09:12
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| Hi David, I have been offered by my consultant to have the Aclasta infusion but after researching the side effects I am terrified. You say you have had this infusion with no side effects. How long ago did you have it done? Any details would help me come to a decision. Many thanks Mo
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Posted 19/11/2009 17:27:21
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| FOR ALL THINKING OF GETTING THIS INFUSION PLEASE DONT AS FOR ME 16 DAYS OF PAIN AND NO SLEEP RUN AWAY AS FAST AS YOU CAN FROM THIS NITEMARE DRUG PAUL
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Posted 20/11/2009 11:40:25
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| Hi Paul You say 16 days of pain and no sleep. What specific side effects did you have. And after the pain and no sleep are you ok now and do you know if it has helped you. When was this done? Thanks Mo
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Posted 15/01/2010 15:47:25
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| I am also interested in hearing from people who have tried Aclasta. I am in Canada and am scheduled to have the infusion in two months. I have put it off because I want to try Protelos first. It is not available in Canada, but I have been able to get it from Europe with a prescription from my doctor here. I am unable to take the oral bisphosphonates because of stomach issues, but I did have other side effects with those drugs as well - muscle pain, bladder problems. I am worried that a yearly infusion will cause more problems. It is so difficult to be confident about taking a drug here that is not approved and my family physician is against it. Servier will not discuss any problems I might have with Protelos, because I am not supposed to have it. I am going to try it, but it is difficult to get it consistently from Europe. If it doesn't work, I am left with the options of Aclasta or Forteo. Has anyone tried Forteo??? The cancer warnings on the drug worry med and once I finish the 18 months, I would have to go on something else. I am only 54. Dixie
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Posted 26/03/2010 15:11:05
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Hi,
Reading the information leaflets would put you off taking any medication!
I broke my arm some time ago and had a DEXA scan that showed that I was osteopenic. II was put onto Alendronic Acid first but it didn't agree with me at all.Our area has a dedicated osteoporosis nurse who is funded for another year. She has been very patient with me. Last week I had the Aclast infusion and was absolutely dreading it. I was told to drink as much water as possible the day before and on the day of the infusion. It was done in my local cottage hospital and the staff nurse was a gem. After the aclasta there was a [saline?] infusion to make sure that all the medication had gone through. After that I had to stay for another 15 minutes for observation and then I went home. About 24 hours later I felt unwell and shivery [a common side effect] but I went early to bed and felt as right as rain next morning. I go back in a month for a blood test and as long as that is ok I don't have to have anything else for another year.
Thought this might help someone waiting to have this procedure done.
Rach
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Posted 08/04/2010 18:07:18
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Hey,
This sounds very strange but are there any young women out there who have this infusion? Hels are you a girlie? I have been made to believe that as I may want children in the future this treatment isn't an option. Can anyone shed any further light on this?
E xx
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Posted 27/06/2010 18:49:38
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Hi Dixie
My name is Vera live in Serbia (europe). I have 55 years. I am sick of osteoporosis for 12 years. I had multiple fractures vertebra. I used Fosamax, Areda, during several years, but it was not anything better. 18 months ago I started to use FORTEO, and I finished treatment 5.06.2010. This is a fantastic product. My T score was -5.5, which now came to -3.3. And it's still a lot but FORTEO do the right thing. Now doctors rewrite the Aclasta to continue treatment. Since this is a very expensive product here in Serbia, if I manage to raise money I'll try it. I accidentally met with this forum and I wanted to see the experiences of others who used the product Aclasta. Sorry for my poor English.
Live and be alive is not the same
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