Osteoporosis

[Annlpark]

How long should you stay on prolia

[walk21]

I believe it is licensed for 10 years. If you reach that you need other medication directly after.

[Exbury1905]

Annlpark, a lot of people on here have written about Prolia. I suggest you check out what they have to say. Most (including me) consider it to be an unsafe drug...but it depends on your personal health, how long you have been on it etc. I took one dose 18 months ago and within a few weeks I developed side effects such as pains in my head, increased fatigue and a bony growth on my upper gum. My dentist advised me to stop taking the drug, which I did. I only ever had the one dose. I do not have osteoporosis, 'merely' osteopeonia. It does have some very nasty side effects, clearly documented.

Take care

[Elizabeth65]

After my experience without any warnings or checks by the top consultant in osteo care I went on it for 3 years. Then I had a dental abcess and dental lecturer consultant told me not to renew the 6 mth Prolia which was due that month. I did what I was told....as he said....it takes 6 months to fully leave your body. However I got terrible back pain and to end the ssaga I was told I had 2 back fractures at L1 and L2. My GP asked if I had fallen or been in a car accicent. I went to Consultant who told me that once you stop renewing Prolia....you body starts to dump all the calcium you built up for decades from any other bisphos or Prolia. Prolia is addictive and you are on it for LIFE. What they do not tell you is that if you have any teeth in your lower jaw that may need removal or you want to get dental implants.....then do not even consider Prolia. Prolia can give you ONJ which is death of the Jaw Bone if you get any delay in dental recovery as infections will kill your Jaw Bone. Furthermore Prolia gives you more infections of the Sinus area if you have any problems with sinusitis do not take Prolia. Powder bisphosmates only stay in your body for a week as taken nightly but Prolia stays 6 months and by God will you suffer if you ever stop taking it. I never knew anything until dentist told me that he would not touch my tooth for at least 6 months. Perhaps if I had taken a powder bisphos it may have reduced chances of fracture.....but no warnings. They just make it up as they go along year on year and the instructions in Prolia and side effects keep changing year on year. My Dexa scans showed some areas at -2.5 and I had built up density for over 12 years but two years after my fractures and withdrawal from Prolia my latest Dexa shows a fall of 10% and osteo in my hips now, despite the fact that my clinic have been prescribing Forteo injections nightly to build up my spine and bones. My advice....do not take Prolia. I'm in God's waiting room as I got Tenosynovitis three months after 2 L1 and L2 fractures in spine and the pain in my left arm and swollen finger was Tenosynovitis which Prolia now say occurred with less than 1% of Trial Patients. However their trials were on people over 65. I was 60 on Prolia.....Why was it prescriped. How much is Amegen giving to sponserships for consultants and other gifts of sponsership. I was a healthy fit active size 10 energetic woman three years ago. Now I have been diagnosed with Tenosynovitis, Fractures L1 & L2, plus Rheumatroid Arthritis diagnosed in same year as I stopped Prolia in Jan 2018. I've given up and had to give up my job and resign to be dead before 70.

[Gateways in reply to Elizabeth65]

Your story shows how the decision is difficult to take drugs suggested and it feels as if you have trusted the potential opportunity given to you by putting you on drugs that you felt would lift your ability to get better and gain more control in your life - but in effect it sounds as if you are feeling a loss of control and strong disappointment for your future. But my thought is that it feels important to seek some counselling to help you redress that situation, which hopefully will put you at the beginning of a new process of thought in order to look forward. I hope this idea helps you.

[Elizabeth65 in reply to Gateways]

Thank you. Yes counselling helps to cope with the anger I feel regarding Prolia. I have reported the bad outcome with Prolia for investigation to Medical Drugs authority. I contacted Amigen but they said they don't deal with patients only GP's, consultants or Chemists. This was disputed by the Drug Monitoring body and is currently being followed up. When I asked my consultants.....not the one who changed me to this drug from my usual bisphosmate he said he did not report it nor did my GP. So my advice is to contact your Government Drug authority re side effects as cases simply not being reported unless you report it.

I was on Fosamax, Protelis and before that Evista since I was 50 years old. I had dental work done....the usual Crowns, Root Canal treatment, then Implants and with age nowadays dentist conserve teeth rather than fit Plates or dentures. I take great care of my teeth but naturally with gums receeding and dental caries I got a tooth abcess on my lower No 4 tooth. When I first went to the Osteoporisis top consultant they advised Calcium and Bisphosmates which I took for over ten years. My dental consultant had told me to advice the osteo consultant to use Protelis as I was having alot of dental cosmetic work. Then the Osteo consultant prescribed Prolia a year later stating that Prolia was just a six monthly injection and easier than nightly powders. I had six injections over 3 years and noted alot of sinus and dental infectionsand went on antibiotics but never thought that the Prolia was contributing to these infections.

In Jan 2018 when I had the abcess on tooth the dental consultant who is a University Lecturer told me not to take the Jan 2018 Prolia injection as it can cause necrosis of the jaw. That was it.....no warning that Prolia causes reabsorption or serious loss of bone immediately. The Osteo Consultant never warned me re not renewing Prolia or the consequences that would follow and they did not request a Dental Examination prior to starting Prolia. This should be Mandatory for 1st time users of Prolia and a written consent form from patient signed for consent re their understanding of all the dangers of ceasing Prolia.

It was March 2018 when I got the two fractures on my spine L1 and L2. I never broke a bone or had a fall in my life and could climb ladders, dance all night and play golf three times weekly. I was crippled with pain and could not unload the dishwasher. I had to wear satin pyjamas to slide slowly out of my bed each morning. I was on Arcoxia painkillers but they had no effect despite being a prescription painkiller.

My GP referred me to the Osteoporisis Hospital Clinic but my first appointment was in Aug 2018. In the meantime, my middle finger started to get stiff and puffy. My consultant rushed me into Private Hospital for one week and I had three antibiotics intraveniously every 6 hours and they took two hours to get all three into my blood. My hand and arm which had a dreadful burning nerve pain up to my shoulder was put in a splint. The diagnosis was Tenosynovitis. I could not bend the finger so I was given Physiotherapy to increase movement. The finger eventually went down but I don't have complete grip with my left hand. In Aug 2018 the Bone Clinic prescribed Forteo Injections Nightly to speed up healing with my back fractures.

Then on a revisit I told consultant that my right hand....first and second fingers were sore and swollen and he diagnosed Rheumatroid Arthritis. He took no blood tests and he put me on Humira a biologic injection fortnightly. I was on the injection 9 months when on a routine GP visit I asked him to check for RA factor in the blood test and it came in at 34.

I've read Mayo Clinic online research and it clearly says that Trauma can trigger R.A. I have an unmarried friend aged 53 who developed the same R.A. result of 34 with the stress of her mother dying of cancer and the effort she had dealing with her estate and revenue. She was the only child and alone and stressed. Stress pushed her into getting R.A. In my case Stress of spine fracture and tenosynovitis pushed me into getting R.A.

I recommend that consultants who prescribe Prolia should first get a full medical report from G.P. , Dental Report and that a Red Notice be pasted on the Prolia Box. ' Never Stop Taking This Injection'. Once you start you cannot stop and must go on to another Bisphosomate or Forteo Injection as you will rapidly suffer Bone Loss and your Dexa Scan will show a serious drop in bone density.

Despite being on Forteo for nearly the max of two years I was stunned to find that my recent Dexa Scan showed a drop of 10% since scan in Jan 2018. It Nosedived between Jan and was frightening to see what withdrawal from Prolia did. I was also surprised that the Forteo did very little to increase bone density. I have a follow up with the Bone Clinic next week and find out Why?

M

[walk21]

Some people here have had horrible side effects from Prolia,but if you are already on it that will not apply to you. I have friends who have been on Prolia for years, and have stayed fracture free. As I said, 10 years is the limit at present in UK, and other medication is needed if you ever stop.

[Sunseaandsand]

You do not say how long you have been treated with prolia.

If you are not having any side effects from the treatment then you have no reason to stop it.

The important thing to know about prolia is Never just to stop the treatment.

If for any reason you do have to stop it in the future then make sure there is a plan in place for you to be treated with an alternative, such as Forsteo or one of the Bisphosponates.

If you do not have a follow on treatment, the chances of you having multiple fractures are too great.

[Nannie-C]

Had to stop Prolia after two injections due to awful side effects. I found out about the possibility of rebound fractures from on line groups, no one, including consultant, Gp, specialist nurse and the ROS told me about the need for a relay drug before starting it. I had to take copies on an article on stopping it to my Gp for him to be persuaded to prescribe actonel (a bisphosphonate). Sadly I could only tolerate it for 18 weeks and now some 9 months on I’m living with the dreadful fear that I could have rebounds spinal at any time for the next 15 months. So wish I’d heeded my instincts and not agreed to Prolia.

[DebDenise]

Please do your research about Prolia. I read the pamphlet they gave me and thought I asked all the right questions and was told by my osteoporosis clinic not to worry. Unfortunately after my 2nd injection I experienced back discomfort and also discomfort in my right leg. After a few weeks I went to see my nurse practitioner about it and I was brushed off and told it’s not the drug and I must have banged my leg. I was told to come back in a month if it was still hurting and it was and worse. I started to do research on the internet which doctors discourage you from doing. I read horrors stories about legs snapping and spinal compression fractures. My 2nd injection was June 1st 2018. By October my leg was experiencing shooting pain to my hip and I could lose my balance easily. November I had my yearly appointment with the osteoporosis clinic. When I got there on Nov 14th I told them I wanted off the drug and told them how I was feeling. Again I was reassured that this was a good drug but if I wanted off it then they would take me off but I would have to go back on a bisphosphonate . I was sent for X-rays on both legs. Unfortunately my right leg showed a fracture starting mid thigh already and damage to my left leg. Thankfully they acted quickly and two weeks to the day I was having an intramedullary rod put in my leg. My surgeon said it was not if it was going to snap it was when. He was trying to save my body as much trauma as he could. I was living in fear for a good year as they had no safe exit plan for me coming off this drug. They said that they didn’t know if Actonel played a role in it as well. So no other drug for me to help with rebound fractures which Prolia seems to be known for after ending it. . I was one of the rare atypical fractures however I feel it’s not as rare as they let on. It’s a nightmare when it happens to you. My left leg is still damaged and I pray I don’t have to have a rod put in it. I am fortunate I am walking well but I will never feel the same. It’s uncomfortable when sleeping at night, I use to be a side sleeper but it’s too uncomfortable with either side now, I am not sure if that gets better with time or not. It’s almost two years and not much better yet. I wish I would have listened to my son who is a nurse. He wanted me to get off the osteoporosis medication and not go on Prolia. He told me proper diet and lifting weights. For the first time in 10 years after doing what my son said my bone density increased a bit. I was losing -.3 for years. I finally have some hope but it takes work.

Best of luck to you. 😊