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Infusion for Ostoeporosis

(14 Posts)
Birdwatcher4 Thu 27-Aug-20 12:00:55

Any positive reviews for having this infusion which I have been offered as can't tolerate the tablets it would be every 6 months .

New to the forum so sorry if it's been discussed before .

Marydoll Thu 27-Aug-20 14:13:50

I have it annually. You usually need to keep your Vit D levels up as it leaches Vit D from your bones. You also need good dental health and have regular check ups.
Mine is usually postponed until I have taken a high course VitD.
The infusion is painless and relatively quick.
I had no side effects, which is very unusual for me.
A million time better than those horrible pills.
Good luck!

Esspee Thu 27-Aug-20 14:44:56

Osteoporosis is caused by lack of oestrogen. Why oh why are women not told this and given the option to take oestrogen replacement therapy at menopause? Certainly, it is contraindicated for a small proportion of women but for the vast majority of us the benefits far outweigh the possible negatives.

My mother suffered, and I mean suffered, from this dreadful condition when oestrogen would have protected her. Please tell your daughters and daughters-in-law they have the choice.

Marydoll Thu 27-Aug-20 15:03:27

There a number of causes of osteoporosis, not just low oestrogen.
Most the females on my mother's side of the family have had it since their twenties.
Mine was exacerbated by long time use of oral steroids.
Suffering from RA was also another factor in the severity of mine.

GrannyGravy13 Thu 27-Aug-20 15:27:12

I was diagnosed in my early forties, not oestrogen deficient. I have been taking steroids fairly regularly since a child due to asthma.
My body couldn’t tolerate the awful tablets so after a long discussion with my then wonderful GP, changed my diet and do lots of load bearing exercise far so

Marydoll Thu 27-Aug-20 15:48:32

I took the tablets for years, then had a break pardon the pun and had to go back on them.
I couldn't tolerate them any longer, so an infusion was suggested.
However, it had to be put on hold, as a blood test showed my VitD levels were so low, they didn't register.

When I had my first DEXA scan in my late thirties, I was told I had the hip of a ninety year old woman! That was a shock to say the least. As a result I had a scan every three years until a four years ago, I now have them annually.

paddyanne Thu 27-Aug-20 19:41:24

My mother suffered with osteoporosis for two decades ..or more.She had pills to take once a week but they did nothing at all to help.We watched her lose height at an alarming rate in her last years .She wasn't offered a different medication.
She had been on steroids on and off since she was young .Its one of the reasons I'm on HRT for life ,I have asthma and have broken bones in my 40's and 50's I would hate to think I was heading for the same pain and suffering mum had to endure .If this treatment offers some hope ,jump at it I would if I needed it .

Birdwatcher4 Thu 27-Aug-20 19:46:19

Thank you ladies I have had bloods taken to see if every thing is in order to have the infusion haven't had the results yet

I have told the Dr I really don't want the infusion would rather manage it with diet as GG13 said , she was still a little reluctant but said to up my calcium and vit D high dose so that and the fact I walk 3 miles everyday is the plan at the moment so fingers crossed .

Marydoll Thu 27-Aug-20 20:00:54

paddyanne, I wasn't offered a different medication, I asked for it.
I had years of chronic heartburn with it and an upset stomach into the bargain, but as I have had so many fractures I persisted with it. I have cement holding my spine together after fracturing two vertebrae and walking about without treatment for six months.
The medication did work. My bone density had increased, so I was advised to take a holiday, as I had been on it longer than recommended.

However, when my bone density decreased again, I had to go back on it. The effects were so much worse than previously, so I made a fuss about how awful I felt on it. Then the medication was changed and changed again, but I could no longer tolerate it.

I was eventually transferred to the the new bone mineral dept at the Queen Elizabeth, instead of attending the endicronology dept there and after lots of blood tests I was eventually prescribed the infusion.

What a relief not to be taking that horrible drug. All those years ago, when I started taking it, I had to starve all night and then stay upright for an hour, after drinking lots of water. I took it on a Sunday morning, as that was the only day I knew I would not be in a rush and accidently make a cup of tea!

BlueBelle Thu 27-Aug-20 21:32:45

Yes I ve had an infusion for the last three years, it’s very very easy simple process no side effects what so ever and had a dexascan this year showing an improvement in my bone density I will have a year off then three more annual infusions
The doctor told me that once you have osteoporosis the levels of calcium you can take in tablet form will never be high enough
I walk or cycle all the time swim in the sea and dig my allotment I take additional Vit D but get plenty naturally and have a reasonable diet whilst that is all great help, they assure me it isn’t enough I am happy to accept the infusion

paddyanne Thu 27-Aug-20 21:46:59

That'll be the same one my mum had Marydoll to be honest much of her ill health was caused by steroid use ,but I suppose the research hadn.t been done then to know that.My mother would be 97 now ,when she wa 4 her parents paid for sunray treatment where she would strip off wear thick goggles and sit in front of a sunlamp for an hour at a time , When she got older steroids were routinely prescribedShe was always said to be "delicate" and treated accordingly .The other big problem, the steroids caused was cataracts and glaucoma she had the cataracts removed ,NHS when she was 82 just 9 months before she died .It made such a difference to her to be able to see to read again .I dont think a connection was ever explained to her between the illnesses and the medication

Marydoll Thu 27-Aug-20 22:24:37

Paddyanne, my parents had one of those lamps. Do you think it was a Glasgow thing? My father was an invalid for most of his life and used the lamp.
Also my mother lost so much height and had a dowager's hump, but was never diagnosed, probably never sought help.

Steroids are a two edged sword. For we chronic asthmatics they are a lifesaver at the time we need them, but they are also detrimental to our health.
Not only do they cause physical problems, but also mental ones.
As you rightly say, the connection with steroids and osteoporosis wasn't made in the early days.

They masked my RA for years by dampening down the inflammation, but damage had been done before it was diagnosed.

I remember the consultant saying to me that lying naked in Dubai for a year, would have no impact at all on my VitD levels, they were so low. For some patients, exercise and good diet are still not enough. Some need medical intervention to treat osteoporosis.

Thank goodness we are all better informed nowadays days and able to be proactive when it comes to our health.

Angel56 Sun 04-Oct-20 15:54:38

I have found this post very helpful as I got a letter saturday to ring the hospital monday to make an appointment for my first infusion.I had the blood tests done so the results must have been ok.Apparently I have the Osteoporosis very bad.Have been on steroids for many years due to Rheumatoid Arthritis.Thankyou All.x

Marydoll Sun 04-Oct-20 15:58:32

As it's your first, it might be better to have someone with you, just in case you feel unwell. It's highly unlikely, just a precaution.