osteoporosis

[justine2805]

Hi I have recently been diagnosed with osteoporosis . I am now suffering with two spinal fractures to my spine which are very painful .I have been today to see my specialist who wants me to start taking AA medication . I have refused this due to the side effects so was offered an injection to take its place .I just wanted to know if anyone has had an injection and if so if it has helped the condition at all and was there any side effects . I am scared of having the injection in case of side effects as I have been told the injection will stay in your system for up to 6 months and with the way I feel at the moment I cant afford to feel any worse . I am thinking of buying a Tens machine to help with the pain but don't know if this will help at all . I would be very grateful if anyone could advise me on kind of relief they may have found has work out for them . I have been told the fractures should heal within 12 weeks but as its around 4 months on since this has happened I feel like this is the way its going to be and would appreciate any advice . Thanks x

[DorsetLady PMRGCAuk volunteer]

Hi Justine,

Have you actually tried AA? Yes the side effects do sound horrendous, but so do those of many other medications.

I took it for 4 years with no problem whatsoever, maybe I was just lucky I don’t know! But if you need it, it might be with trying for say a month! That’s 4 tablets, one a week. You’ll know by then whether it’s for you or not.

Must say I’d prefer to take one tablet per week than one dose every 6 months. The six monthly one, I would imagine would be a bigger hit to the system.

Sure others will advise.

Sorry can’t help on the TENS machine.

[Soraya_PMR in reply to DorsetLady]

I think I’d have tried AA if dexa showed OP.

You might be absolutely fine, you won’t know if you don’t try, as DL says.

[Soraya_PMR]

I’ve used a Tens machine. During labour it was good through the early stages, not so good for the big crescendoes at the end.

Also used it for slipped discs/sciatica and it was better than codeine and brufen combined. Not pain free, but manageable until procedures improved things.

You need to know where to place the sticky pads for best results. Maybe a referral to a physio would help, as this is within their remit.

Where exactly is the pain? It may take longer for your bones to heal if you have OP. Maybe you need another scan to see if there’s something else? Impingement of nerve?

[Pongo13]

I use a tens machine for pain relief and find it helps sometimes. Could be psychological - but desperate times mean I'll try anything!

[PMRpro Ambassador]

This may be of interest:

healthcentral.com/article/m...

[GCA1947]

Dear Justine2805

I (a man) am not typical of vast majority of PMR/GCA sufferers as I only have GCA but I also have life-time Klinefelters Syndrome diagnosed at 46 years old in 1996. Osteoporosis was a side effect also diagnosed in 1996 after seven rib fractures and a metatarsal break in my left foot. Testosterone Replacement Therapy is the treatment and I get an injection in my upper thigh every twenty-eight days which stopped the Osteoporosis in 2003. Then in 2014, I developed GCA and held at 15mgs for too long, I developed steroid induced Osteoporosis and I've still got it. I have a curved spine courtesy of the KS Osteoporosis so cannot stand straight to take Alendronic Acid so, by registering with National Osteoporosis Society (best thing I ever did) I found out about Zoledronic Acid which is given by infusion one dose a year for three years. I suffered severely with side effects and after one year my Rheumatologist moved me to the Denosumab (6 injections in three years), injection one dose every six months and I'm due second dose on 01/05/18. Only one side effect from Denosumab so far, a dose of excema on my arms. Being careful with activities is the best thing when one has got Osteoporosis.

I've been using Paracetamol for a spine bone fracture since 21/03/16 and although its gone on for a long time the pain is nothing like as bad as it was originally. The alternative would have been Oramorph (Morphine sulphate) but I had a bad experience with Oramorph early in my GCA journey which although very effective would have stopped me driving and I depend on my Camper for so much.

I hope your fractures get better soon

Regards

Colin

[rockyandzeus]

Hi Justine,

You don't just have 'osteoporosis ', you have severe osteoporosis with vertebral spinal fractures. You are in a subset of osteoporosis patients that you don't want to be.

So am I. I have sustained a number of vertebral spinal fractures since May 2016. My life has been changed since then, and I live a new reality. First off,

You need to educate yourself as to what physical activities are off limits so as not to suffer any further 'crush ' fractures. No bending, no lifting, no twisting, no turning. And absolutely no bending and twisting. Hopefully there is near you an osteoporosis clinic with a physiotherapist who has proper training for osteoporosis patients with vertebral spinal fractures. He or she can map a programme of very specific exercises so that you can strengthen the muscles to protect your spine.

Do not let anyone not fully qualified have you do the standard back exercises.

I can no longer pick up my grandchild, weed my garden, cut my lawn, vaccum my house or wash floors, or shovel snow. No painting the house or even go to a yoga class.

You also need to educate yourself as what your choices are for bone medications . I am lucky that there is a fabulous osteoporosis clinic nearby ...

I was prescribed Forteo ( teriparitide) daily injections for about a year. It builds bone. It is expensive but was covered by my insurance. I had some bad side effects and had to stop. I have just had a once yearly iv infusion of Aclasta (zolendronic acid). I am not happy to have to take any of these medications but I simply can not risk more fractures. One slip and fall and I could end up in a nursing home.

As for the pain, it was not gone in 12 weeks. Hope yours is. A big part of the problem was that it was not recognized that there were fractures and my activities were putting me at further risk

During the initial and worst pain I tried heating pad, alternating with ice, I do have a tens, and walking and showers and pain killers. You and your doctor will have to work out what magic combination will work for you.

Yes the bone should 'heal' in several months. If you are truly lucky the pain will subside. In my case the loss of height (about 2 ") has meant that muscles and organs are not happy with their new lot.

So it is a different type of pain, And I have very little stamina.

So, I have many coping mechanisms in place to deal with my new life. I use a 'picker-upper' claw thingy to do laundry. It allows me to put clothes into the washer then into dryer without bending have one on each floor of the house so I don't bend over . I got a Roomba ... her name is Ruby. She vacuums while I dust! I also got a Bravaa 380T. Her name is Rosie, she washes the floors.

I am getting a VegTrug for my birthday so I can have a few flowers at waist height... it is an awful thing to not be able to tend to my flowerbeds!

I don't know if your 'new reality ' will be as drastic as mine, but you did ask if anyone had experienced spinal fractures....

I guess I would have to say that it is most important to keep moving, both physically and mentally... educate yourself as to medications... the right physical activities for you and your back, and make use of every modern contraption that keeps you independent. And don't give up!

Fight for every improvement... no matter how long it takes... maybe you will be lucky and be pain free and a minimum of restrictions... in no time flat!

[9lives]

Hi Justine2805

Sorry to hear about your situation.

I’ve had PMR since May 2016 and just recently had a dexa scan that showed I have osteoporosis in the lower back. Just out side the limits apparently.

I have no fractures, although I did trip over December 2016 and fractured my left arm,but that was not related to anything, just me not looking where I was going,!!

Like you I did not want to take AA because of the side effects, but my Dr convinced me to try it at least. So I did and, week six on so far so good.

I did try a tens machine in the past, when my PMR was at its worst, but it gave me no relief whatsoever, but we are all different so maybe it’s something you Could try.

I guess any medication we take comes with a down side, just have to weigh up the benefits.

Ask yourself the question, do I want to continue like this, or do something about it.?

Really hope you get some relief soon what ever direction you go.

Best wishes to you

Carole x

[Jim-CJ]

Hi Justine2805, My wife had fractures from T9 through L5. Each were corrected by Vertebral augmentation. Her issue was prednisone. She is now on Forteo for about 5 months and no more fractures. And no side affects with the daily injections. You may want to get on Forteo quickly. My wife waited too long. Also, if prednisone is your problem, please start the tapering with Actemra. Lots of expensive drugs, but your well being is worth it.

Best of Luck,

Jim & CJ