Kaarina6 years ago

Hi Batbara

I am sorry that I am not able to help you but the side effects you are experiencing is just the reason why I do not wish to have a shot(s) of prolia. I have enough daily bone pain anyway (osteo-arthritis)) and am not prepared to take the chance that I may well get more.

You could call the helplines but I would think that each patient would be different with how long any side effects would last if one was unlucky to experience any. It is early days for you so here is hoping the pain you are experiencing will disappear.

Batbara in reply to Kaarina6 years ago

Thanks for your input. I did call the rheumatologist.waiting to hear back. I sure hope this is a passing thing. I was really hesitant to take this drug. I let the dr. Talk me into it since my dexa scan was so bad and I'm limited as to different medications because of esophageal problems. I suppose now I just wait. I'm pretty upset though. Just another thing or symptom to deal with.

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Kaarina in reply to Batbara6 years ago

I can appreciate how you are feeling Batbara. As you say, another thing to contend with. Do let us know what the rheumy says. I too am very undecided as to what to take next since the drug I am on at present, which gives me no side effects that I am aware of, is being withdrawn in August. The endo I shall be seeing again in August gave me a leaflet on prolia to take home from my last appointment......

Do keep in touch.

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HeronNS in reply to Kaarina6 years ago

This may interest you, Kaarina:

algaecal.com/expert-insight...

I'd read before that the ranelate is a patented form of strontium, artificial and patented so that money can be made, and it never was more effective than natural forms of strontium. If I find any proper research about this I'll post.

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Batbara in reply to HeronNS6 years ago

Interesting read. Much information.

Thank you.

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HeronNS in reply to Batbara6 years ago

I did do a quick google search, because I like to be able to back up information like this. Couldn't find anything, but that doesn't mean there isn't something. Would be interested to read it if anyone comes up with an article. I do have reservations about strontium, however. I don't know if it actually improves bone strength, although it does improve density readings - because it's heavier than the calcium it's replacing. Probably best to try to get more calcium into those bones!

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Batbara in reply to Kaarina6 years ago

Well it's been a month since my initial injection of Prolia.

For the last week I've now been very achy in my body when I'm sleeping and when I first get up in the morning. Almost seems like I got a shot of arthritis. After I been up for a little while it subsidies. I hear my bones in my neck creaking when I lift my arms a certain way. Also , I have woke up two separate nights sweating around my neck. That is very unusual for me . I didn't even have night sweats going through menopause.

I called amgem and spoke to one of there pharmacist and he was a little vague on some questions I asked. He said the medication is out of your system in 6 months, but there is no test that can conclusively confirm that. I don't really know my next step. Was even thinking of going to a nutritionist. It's a nightmare dealing with this bone problem . Your dammed if you do and dammed if you don't.

I will report if there are any other manifestation I think might be related to injection . Of course some things might be a coincidence , but I tend Not to believe that.

As always, sending good health to all!😀

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Kaarina in reply to Batbara6 years ago

Hi Batbara

So good to hear from you but unfortunately does not sound so great with the side effects you are now having and I am sorry. That is my one biggest fear with these injections. I already have osteoarthritis and had numerous joint operations and am never pain free from from some OA aches and pains. The thought of receiving more discomfort as a result of taking Prolia which is what the endo suggested I start when I see him in August, is not really what I wish for at all. Trouble is what to take as I should be taking something for my dodgy spine.

I totally agree with you that it is a nightmare this OP and what to take. Not enough is known about these drugs which does not fill me with confidence.

On the plus side, perhaps the aches/creaking you are noticing at the moment will disappear in the next month or two. I sincerely hope so for your sake.

We are all different and some will not get these symptoms but for me, already with a history of bone pain I am really not keen to go down this route and will let the endo know my feelings (which he already knows) when I see him in August.

Please do keep in touch,

Gentle hugs

Kaarina

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TommyJohn in reply to Batbara5 years ago

I'm on my 5th year of Prolia and get various tingly darts of pain occasionally. I made the choice of enduring what I 'must' go through so I will never have to suffer another fracture. Bear in mind that your bones are (for want of a better word I'm going to say reforming or rebuilding) so it is only natural that they may feel stiffer or harder. From what I can gather, this creakiness can also be part of aging and perhaps arthritis.

PS my readings are from -4 to a high -5.5 and to add insult to injury I've now developed a friggin hernia.

Keep going and let us know how you get on. Also its not everyone that is suitable for Prolia so you can also count yourself lucky.

PPS. Why in gods name do us OPs seem to also gt other complications

Try to cheer up and remember - - -as my GP says, we may die with it, but we won't die because of it

Cheers

Tommy

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KidneyCoach in reply to Batbara5 years ago

To say its completely out of the system in 6 months is completely false. In fact I took oral RX pills for about 5-6 years, stopped over 8 years ago and *it* is still in my system. I had a bone biopsy *and* a bone marrow biopsy which verified this. It stops being beneficial and there is a huge controversy over if has *any* beneficial aspects to it for many sections of people altogether. I had one injection of prolia and it nearly killed me. Then he wanted to put me on FORTEO (a synthetic form of parathyroid hormone) even though my levels were over 1000 and normal range is 100. He is considered the "authority" in bone loss in our area of about 225,000. Thank the Lord I had the "smarts" to decline it. Blessings

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antiP2219 in reply to Batbara4 years ago

Same thing, bone pain, especially thighs hurting when I sleep on my side at night. Awful! I just finished 6 month mark after my one and only first shot of Prolia. No more for me!! No other meds, either. Gonna try the natural route!

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Batbara6 years ago

Certainly will keep you updated on my situation. What are you taking now? And why is it being withdrawn?

I called my rhumy and now waiting for a call back.i will contact you kaarina as soon as I hear back from Doctor.

Kaarina in reply to Batbara6 years ago

I am taking strontium ranelate (Protelos). It is being withdrawn because it is being used by very few OP patients. The reasons are because there was a scare about its connection to cardiovascular risks some time ago which has led to its limited use. Since this time doctors have tended not to prescribe this drug to patients/patients are no longer wishing to have it prescribed to them.

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Hidden6 years ago

Hello, from your posts, I believe you must be in the UK. Has anyone advised you of the side effect that Prolia has in some cases.....it can cause bone loss in the jaw, making certain types of dental work very difficult or impossible as far as implants, etc. in the future.

Prolia is usually given as an injection twice a year in the MD's office here.

One of my sisters is taking it now, but is looking to see if her insurance will cover Forsteo instead. Try asking your doctor about switching to Forsteo and watch her faint. It is very expensive (Retail cost is $2400-$3000 US Retail per 28 daily injections at home, about one month's supply, for up to 24 months.)

I have read several posts where it was provided only as a medication of last resort in England.....one woman was prescribed Forteo because she had so many fractures she was in chronic pain, deformed because her back could no longer support her. That just didn't make sense, as Forsteo can't help fix the fractures nor help with pain. It is focused as a very early medication after the first fracture is found, on working with the body to produce more new bone material to prevent the progression of fractures, not trying it because nothing else stopped the progression of the fractures.

I am in my third month of Forteo in the US, as it is the medication of first resort after the first osteoporosis fracture occurs. Its focus is to prevent future fractures, but does not mend old fractures, nor provide pain relief from old fractures. If you have a number of fractures, it may be of no help at all. I had fall last year, resulting in my first and only so far vertebra fracture which was mended in the OR with a vertibraplasty. This sounded the alarm for my doctor to put me on Forsteo. He wouldn't even consider anything else.

Forsteo is the only thing currently available to encourage one's body to produce more new bone material to keep up with the amount of old bone being sluffed off.

The other medications available try to get your body to hold on to old bone matter longer because your body is not producing enough new bone growth to replace the amount of old bone your body is sluffing off.

Batbara in reply to Hidden6 years ago

Just was reading some info on osteonecrosis of the jaw and dental work. Sounds like all or most of the osteoporosis drugs have similar issues with dental problems. Just can't win!!

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Batbara in reply to Hidden6 years ago

HI, I do live in the US. Just curious as to why you thought I lived in th UK. Maybe it's my accent. Lol 😹

Sometimes we really need a sense of humor!

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seaholme6 years ago

good morning, sorry to hear of your reaction, it can be pretty scary - I had severe shoulder and neck pain in the bones and muscles, ie couldn't move my head and neck followed by horrendous muscle spasms in my neck going right up into my head, this was with the weekly bisphosphonate, they have now prescribed a monthly dose which seems to be OK but I am still very 'iffy' about the whole medication situation for OP. I now include neck and shoulder exercises in my daily routine to help build up those muscles. Hopefully the multi-skeletal pains will subside. When I saw the rheumatologist re these pains I was told that they had never heard of anyone having this type of reaction - I say more!!!!!!!!!!!!!!!!!!

kind regards..........................

Batbara6 years ago

Well I heard back from the doctor and he said he has not heard of this side effect. He keeps telling me that of all the osteoporosis drugs out there this Is the one that shows the most bone growth. I wonder who is doing all the research. ( probably the drug companies that create the drugs).

Anyway, he said I should take my next shot in November and see how I'm doing then. I'm very suspicious of Doctors prescribing drugs, so I don't know if there will be a second shot for me. Guess I have to do more homework. Then I'll really be baffled and confused. Lol😂.

As for the pain in my neck, better but still have it. The shoulder and arm pain has lessened considerably.

Wishing you all good health.

Batbara5 years ago

Well I'm seven months out from my one and only prolia shot. Still have neck and shoulder soreness and some stiffness. Still sounds like Velcro neck, and My hair stopped falling out . I will be seeing an endocrinologist for a variety of health reasons including osteoporosis.

Started back at gym . Hadn't gone for sometime due to copd. I will slowly do some bone building exercises and eat calcium rich foods . Also will take vit k-2 in the form of mk-7. That's suppose to put the calcium in bones instead of going into arteries and soft tissues. Will see what endo doctor has to say.

Hope you all are doing well. I'll keep you posted!😀

Meganisi in reply to Batbara4 years ago

Hi Batbara was wondering how you are going after stopping your Prolia. Did your pains go away?

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Jayge4 years ago

No side effects so far. I think I am on number three