steroids and osteoporosis

Hi All, just thought I'd give you an update on my osteoporosis diagnosis...When my doctor saw my dexa scan results he put me on Fosavance (1 a week) and calcichewD3 (2 a day). I then went to see my rheumatologist who said they wer'nt strong enough.. I now have to inject myself every day with a pen much like the pens used by diabetics!!! :yuk:

I'm getting used to it..but I have to psych myself up every morning to stick a needle in my tummy. Luckily theres plenty of fat there (the more the better I've been told :lol: )so it doesnt hurt. On the brighter side..I've managed to reduce the pred to 5mgs without too much trouble(famous last words..I've problably just put a jinx on myself!!!) My blood tests each month are showing that my esr is within normal range for my age (whatever that means!)...I hope the light at the end of the tunnel is twinkling at me!!! :D

All the best to everyone..

Hi to everyone out there, hope you are all doing OK. I've been a bit quiet just lately, but like Nannypat, I'm finding that every time I get up someone knocks me down again.

I had a DEXA scan recently which showed I have osteoporosis of the spine. My hips were normal (all that walking must have helped with that) and I have osteopenia of the neck.

Unfortunately I tried all the bone protection meds some years ago and there wasn't one of the bisphosphonates which I could tolerate. I also tried strontium ranelate with the same result (side effects - HUGE increase in muscle pain). Looking at the known side effects now, I'm not even sure that I want to try them again.

I have no idea what will happen next, I suspect I will be referred to a specialist - oh, there is the option of HRT but that gives a much higher chance of DVT and I've just had one! So unless my doctor has any ideas (and she's pretty good) it's anyone's guess just now.

Nannypat, I think you are wonderful - with the best will in the world I could not inject myself with anything! ! I have enough trouble with using the lancet for the sugar level checks to know that. It's really very silly, because someone else attacking me with a needle doesn't bother me in the least (just as well, really), but DIY is a no-no as far as I am concerned.

I see the doctor next Tuesday and I will post what the next step is.

Nefret

Nefret

Not so good - but still in there paddling along. HRT - I have taken premarin (made, so I am told, from natural products mainly) for over 30 years now and never had any problems whatsoever. I had stopped taking it for a couple of years, but the GCA came along and then with the steroids, night sweats and hot flushes came back with a vengenance.

I asked my GP for a prescription for the Premarin and brother what a kerfuffle. No, you will have to see a gynae bloke, me what for - too see blah blah - ok, give me the prescription, write to the gynae bloke or ring him up - tell him your worried and I am not. Result 1 tablet of 0.625mg per day night sweats gone - hot flushes gone. Bone protection back and two Dexa scans at 18 months interval 97% each time.

Might be worth exploring it with your lovely GP.

HI NANNYPAT

I HAD A DEXA SCAN AND WAS TOLD MY BONE DENSITY WAS BELOW NORMAL AND I HAD A CONDITION CALLED OSTEPENIA WHICH IS THE STAGE BEFORE OSTEOPEOSIS I AM NOW ON TREATMENT FOR IT.I DO HOPE YOUR SCAN IS OK STEROIDS HELP IN ONE WAY BUT CAUSE OTHER POBS WE CANT WIN LOL I WILL LOOK OUT IN THE FORUM TO SEE HOW U GET ON TAKE CARE

JANETTE

I'm still paddling along, Mrs. K, not to mention chugging.

Coincidence - I was on Premarin for a very long time - just stopped it about 3 years ago. I was put on HRT at 43 - I had to have a hysterectomy when I was 34 and while I toddled along OK for 9 years, eventually the problems became too much. They all disappeared once I was established on Premarin (tried one or two others first).

However, this time round I don't think it's an option having had a DVT. I believe that, if I had still been on HRT, the blood thickening would have happened sooner and the DVT might have turned into a major problem. There might be an option to take a low dose again AND continue with a low dose of the Warfarin, but I really don't know until I see my doc. At the moment I don't know exactly what degree of osteoporosis I have - it might be that calcium and magnesium will do the trick, if it's only just under the limit.

Here's to Tuesday - I expect there will be yet more decisions to make!

Nefret

Hi all - not much of an update really, I'm being referred back to the rheumatologist as there is so much going on with me at the moment. No idea how long that will take.

In the meantime, keep on walking and keep on taking the calcium, I suppose.

Will post the eventual outcome. Hope everyone is having a good day (we've had mostly drizzle here today) and that you are all keeping WELL!

Nefret

Hi Guys.. Thanks Nefret for your lovely comments I really do appreciate that I'm lucky to be able to sound off on people who understand..

Thankfully the needle I have to use each day is only 5mms..I'm getting used to it but I'm the most squeemish person I know!!! The thoughts of putting in contacts turns my stomach!!(So I dont) My husband just says Go on do it Go on do it!!!! Fat lot of good he is..

I've been told by my chemist that the steroids are fighting the calcium and my esr levels have gone up again!! I managed to get down to 4 mgs but my esr levels doubled in a month ..so its back to 10 mgs again for a while..will start reducing again next month. I really hope everyone out there is taking care of their calcium levels...cant afford to fall over...(no more putting socks on at the end of the stairs Mrs O!!)

Anyway Guys..Keep on smiling..the days are shorter when you do!! :lol:

Nannypat.

Nannypat - wow, of all the fellow sufferers out there, both you and Nefret are certainly going through tough times at the moment but I'm in absolute awe of the terrifically positive attitude and humour with which you both post your experiences - still cheering the rest of us up with your comments in spite of what's getting thrown at you.

It must be disappointing to have got down as low as 4mgs only to have to increase back up to 10 again but, hopefully, you will be able to come down to at least 5 a bit faster this time your body having been there before.

I think I may have tricked my body when reducing this last time from 5 to 4 as I followed Ragnar's (our Swedish poster) advice and dragged the reduction out over about 5 weeks - the result, a bit more increased pain but for the first time ever not resulting in increased ESR/CRP, Maybe this could work for you in spite of the calcium contribution next time you are reducing from 5 to 4.

I'm at the moment counting my lucky stars as after 2 and a half years on steroids and with no bone protection meds (not advisable for people who have only one kidney like me which is not filtering out at 100%) the DEXA scan has revealed the same results as at the outset of the steroids: osteopenia of the spine but normal hips. I've got everything crossed that this result can be maintained as I don't know otherwise what the answer would be for me. Meanwhile, I'll keep up my highish intake of oily fish, my green veggies, daily live yoghurt and daily walk.

Oh, yes, Nannypat, and I do still put my socks on at the foot of the stairs but nearly always think about you and your comment which probably protects me from falling over !

Although I haven't bought any Nordic walking sticks yet, I now try to walk imagining I'm holding them bringing my arms up to the required position - I just hope nobody's watching :lol:! But maybe I shouldn't have brought this subject up again after where it led before!!!

I don't know if I'm remembering rightly but did you not have a wedding coming up? If so do hope everything goes wonderfully and all good wishes to you.

MrsO

Hi Mrs O... Yes we had my sons wedding last week..We had a ball!! I must say I was very tired after it (due to the fact that we didn't go to bed untill 3.30 am)..My voice isn't back properly yet(due to nonstop talking,laughing and general trying to shout over my sisters who travelled from England) There is nothing like an Irish wedding!!! :D

However, we went away for a few days to recover..just back today...

Dont feel so bad this week ..like I always say,At least its not cancer..I know I will get better sometime. Just have to be patient thats all.

I've watched nordic walking on telly,its something I'd like to try. You can get a machine something like an eliptical walker that has the same kind of movements ... But the eliptical walker has a motion like a bike only you stand on it... Just had a rambling moment there!! Exercise (or the thought of it) seems to have that effect on me!!

I'm so glad youre feeling ok ..osteopenia is no joke either.. you've been very lucky that you havnt had to take extra calcium supplements.

Anyway..take care .. I really enjoy hearing from you and nefret and mrs K and Everyone else who post on this forum...I was very lucky to find so many nice people to talk to, or just to read posts .

Nannypat.

How's you doin' Nannypat? Are you still coping, is it getting any easier? I've at last got a date to see the rheumatologist.......October 13th. I've also been instructed to take my marriage certificate, my passport, a bank statement and my work ID with me to the appointment........hello? I've only been going to that hospital for about 50 years and they still don't know who I am. Hopefully I will still be able to remember my inside leg measurement and my shoe size by the time I get there.

Incidentally I did make a fuss when I received the original appointment because at the time I felt two months was a long time to wait. Don't know why I bothered as this new (urgent) one is just two days before the original!

I'm resigned to waiting now, guess it will come around quickly enough. At least I CAN take my work ID with me - I'm retiring at Christmas and won't be able to after that.......I could always show them my bus pass.

Off on my hols next week - to Devon again, this time for 10 days. That will pass some of the time.

Hope you are all feeling good and doing well.

Love

Nefret

Hi Nefret .. not feeling too bad for the last week or so thanks...Coincidence!! I've got an appointment to see my rheumatologist the same week as you!! Hopefully he'll be very happy with me!!

I've gotten used to sticking needles in my tum but you should see the line of bruises!! (I've always bruised easily) Luckily I wont be wearing a bikini this year.. (not that I'd be seen dead in one anyway!!!) :lol: Mind you I'll have to get a bigger swimsuit..cant squeeze into my old one decently anymore!! I seem to have the munchies all the time.. I try to eat fruit if I'm hungry but theres only so many oranges or bananas you can eat at one go!! I'm walking a bit more but the weather is so bad here I'm afraid I'll be washed away.. the rain every day just seems to get me down..(or maybe its the pred)

I'm just being nosy now but why would the hospital want all those documents? :? I would have thought that being refered by your doctor would be enough (but I dont live in England so it must be different there)

I really hope you have a great holiday..I've never been to Devon..I'm off to Liverpool myself next month..My husband is taking our grandson to a match at Anfield. I've been told I can come too!!! :roll: Oh the thrill of it!!!

Bye for now ,take care

Nannypat

Hi, Nannypat. I haven't got the faintest idea why the hospital suddenly need me to prove I am me! Considering it will be just about six months from the last time I had an appointment there, I can only assume that it's some kind of mad (and maddening) attempt at security...........of what, I wonder? Not that that last appointment was for PMR, it was a diabetic retinopathy. However, since then I've been seen in A & E for the DVT and was an outpatient for 10 days!

It's caused immense hilarity in the family. Both my daughters were born there and according to my eldest one, she's going to be told she doesn't really exist - just a figment of my imagination. I can't think why anyone would want to imagine her (she was a nightmare child because she was so clumsy).............you can see we all have the same sense of humour.

My other daughter thinks they suspect I'm an impostor..............well, the same applies, who'd want to be me?

I have the feeling it's going to be an interesting appointment, just hope they don't ask me to remember too much - I can't remember what I did last week, let alone last year.

Have a good week everyone, at least today has been glorious.

Nefret

Hi Nefret, You might have had a glorious day but it was tipping it down all day on this side of the water!!! Sooo depressing!!! Might turn to the demon drink!!! Maybe not...my metabolism isnt what it used to be ..I'm now what my husband calls a cheap date!!!(1 drink and I'm anybodys!!!) :P

You havnt changed facial features or grown a pointy head since you last went to your hospital? I think its wierd that you have to prove you are you especially when youve already had appintments there before. :?

:idea: Maybe youre going to be their millionth patient and have to have proof of who you are before they give you the big prize???

Anyway, its something to ponder on while you sit in the waiting room isnt it? Hope tomorrows going to be a better day...keep smiling

Nannypat

Just wanted to say \"Hi\" to Nanny Pat and Nefret - and everybody else who is so helpful and encouraging on this site! Have just been away for a week to the Isle of Wight which is supposed to have some sunshine record but it wasn't great, very windy and I do find the weather effects how I feel. Just to say we went to my daughter's in Donegal in July and had much better weather there than at home in the south of England, Nanny Pat.

I have enjoyed catching up with all the posts I've missed, as I say it's great to know others who have similar or worse problems. I have met quite a few people tho' who seem to sail through PMR - responded immediately to Pred. , no problems coming down in dosage, etc no side effects etc. I'm glad for them but in a way it can make one's own problems worse because people think you're whinging!!!

Nefret, what the hospital is really after are those Nordic poles!

Keep smiling, everybody, Green Granny.

Hi to everyone, Green Granny, Nannypat, Mrs. O, and Mrs. K if you are still around!

Just got back from a glorious holiday in Devon, sorry to disappoint you all, but the weather was wonderful. Apart from one day when we had a little drizzle, it was sunshine all the way.

I had a bad fall two days into the holiday (one of my usual early-morning staggers) when I ended up upside down over a suitcase, but I got off very lightly with a badly bruised leg and hand (no, I wasn't putting on my socks, I was trying desperately to get to the kettle. No tea, no brain power).

However, and rather unfortunately, the pain in my hips and knees isn't getting any better - I don't think it is PMR, think I may be cooking something else up there. I have an appointment with the doctor tomorrow in the hope that I can get some additional pain relief to take between now and the rheumatology appointment. I'm now finding it takes me ages to get up and dressed - back to square one.

Green Granny, are you sure they want the Nordic poles? I now have an assortment of walking sticks which I can offer, including a very jazzy one with green go-faster stripes. I saw someone who had a stick which read \"I'm only using this for the sympathy\" and I looked everywhere for one of those without success!

Nannypat, I just checked, no pointy head, no facelift, and if that hospital is awarding prizes for anything I'll hand it back with a directive to do something about the food there - it was appalling when I was in there 40 years ago and doesn't seem to have changed at all. When my uncle was in there earlier this year, we were taking in sandwiches for him!

I guess if I have to start injecting myself I can do it on the grounds that you can! I'll just have to do it without looking.............

Nefret