New medication!

[jlyndauk2002]

Hi all, need some advice re new meds. I saw the Rhumy last month and she wants me to try Ibandronic acid 150mg monthly, as i refused to take AA. I am on 7.5mg of pred at this time and the Rhumy wants me to stay at this dose till March when I see her again. Thanks for any advice. Jenny.

[Primarose]

Hi, well the Ibandronic acid is more potent than the AA. I refused the AA and got a death threat from the hospital. My doctor did not pursue it as he doesn't really agree with it since he had a patient with jaw necrosis.

In fact when I saw him on Wednesday he brought it up again and told me that he respected my wishes and reasons for not taking the AA.

[ClarkB in reply to Primarose]

I refused AA, despite being told it was necessary for me. I already had osteoporosis prior to having PMR, along with a diagnosis of obstructive airways disease, -considered ‘ok’ in my notes. I can see why AA is prescribed generally, but long term presents it’s own problems regarding bone health. It seems that in the 10 mins allotted appointments, drs are unaware of your medical history, with no time to check it. Prescriptions seem based on current condition. It doesn’t help that, despite being with the practice for 40 years I am still seen , with one exception, as someone they’ve never met before!

[Primarose in reply to ClarkB]

I suppose I was "lucky" in that the doctor I am seeing now was the same one who attended me at home. He did not know the cause of my problem and on the last home visit took bloods there and then. Within a few hours he called my daughter to get me to A & E ASAP.

I have kept to the same doctor every since and he is always on the ball. We have built up quite a rapport now and even though I do have to wait a while sometimes for an appointment, I make sure that I see him. I had to see a different doctor just the once for more pred, she asked what it was for, I told her for GCA and the blank look on her face made me smile. Now I know why my daughter calls her Dippy Docus!

You are quite right though, half the time the doctors just want to write you up a prescription.

[ClarkB in reply to Primarose]

I find it quite difficult to get an appointment with the one who recognises me and knows why I’m there, because she is part-time and popular! It’s only since I had names for my conditions, and rushed into hospital that I have been believed. Prior to that it was all in the mind, or “You’re a mystery to me” and I just had to live with my symptoms “ or prescribed Valium., which I didn’t need or take. You are lucky to have had the same doctor, and one you trust.

[Primarose in reply to ClarkB]

It's akin to fighting your own battle int it! I was given amitriptyline by one of the out of hours docs to help me sleep. I took four in one go, it had no effect at all.

I expect that you sometimes think you are being "fobbed" off.

[ClarkB in reply to Primarose]

I’ve taken to buying my own calcium (powder) because I couldn’t swallow the bullets. Cheapest option. When I refused Alendronic acid, and enquired about alternatives, I was told too expensive. As regards sleep, I wake up at 5 or 6am, make a cup of tea and read. If I can’t sleep I put on a hypnotic sleep cd! Mostly works!

[Primarose in reply to ClarkB]

I take the Calcichews, you suck them, as they're on prescription I don't pay for em.

Calcium power!! The reminds me of my rescue Old English Sheep dog, she came to me with Mal-formed bones due to incorrect diet, I had to give her calcium powder and cod liver oil. It worked wonders for her bones. Careful you don't start barking.

[ClarkB in reply to Primarose]

I think I am barking....or so I’ve been told!

It’s calcium citrate with magnesium. Calcichews sound a step too far for my practice. Despite requests, I got that I opened the bag before leaving the chemist, so I could return the bullets. When I brought them back from home, they had to be destroyed. In the end I stopped asking and bought the powder!

As for rescue dogs, my old rescue Staffie came with medical problems a mile long,

[Primarose in reply to ClarkB]

Woof woof! <LOL> I read that calcium citrate is better than carbonate which is what I have.

Good job you rescued your Staffie, some folk have a lot to answer to when it comes to Mal-treatment of animals.

[ClarkB in reply to Primarose]

I read that too. It’s always said that it’s mainly chalk and that deposits of it build up in the wrong places. (I’m obviously not one, that people would come to for advice on our forum! Half the time I can’t remember what I take!)

My blood boils at the amount of animal cruelty around. I don’t know how my Staffie would have survived without her medication. She had so many health problems, but they can’t tell you about the pain. She was so devoted to me😢

[Primarose in reply to ClarkB]

Awe bless, it's not just the medications, a little bit of love and attention goes a long way. You were lucky to have each other. I've got puss cats now both rescued and both took ages to gain my trust.

I tend to be a bit fanatical about taking drugs I seem to get the "very rare" side effects. I took omeprazole once, it sent me loopy.

We could always go to Dover and lick the rocks.

[ClarkB in reply to Primarose]

I was licking them in Dorset a couple of weeks ago!😛

Me too, if there are ever side effects, I get em! Am getting ‘stabbings’ at the moment - don’t know if it’s PMR flaring or side effects or something else.

I’ve always had rescues. Next door has a clingy puppy farm rescue.

[Primarose in reply to ClarkB]

I love Dorset, (Thomas Hardy Country)! Bet the rocks were tastier there.

It can sometimes be difficult a ascertain whether it's the drugs or the illness which cause the problems. A lot of medics discount side effects but I think that we know better.

[piglette in reply to ClarkB]

Just after being diagnosed with PMR my brilliant doctor left to become a medical beautician!! I then had someone straight from training. She knew nothing about PMR but pretended she had lots of patients with it. She has just left and I happened to be talking to my hairdresser who informed me that all her old ladies thought this doctor was rubbish. I now know how to find out about good and bad doctors, go to the hairdresser!!

[ClarkB in reply to piglette]

😂 Yes, hairdressers are a good place for gossip and information! I thought it was just me being over sensitive when the senior receptionist became in charge of prescriptions, and was ‘rationing’ the tablets. I mentioned it to a neighbour, who said, ‘You mean that dragon?’

[piglette in reply to ClarkB]

Bush telegraph can be a wonderful thing!

[ClarkB in reply to piglette]

Absolutely, rely on it more than ever!

[Primarose in reply to piglette]

<LOL> Best way to get your info then! Not to mention coming out looking a million dollars.

We have nick names for some of our doctors,Dippy Docus, Mr Glum and there's Quick as you like! No nick name for my doctor cause he's brilliant.

[piglette in reply to Primarose]

Could be Dr Happy!

[Primarose in reply to piglette]

I like that!

It's a bit like the Mister Men and Little Miss!

[piglette in reply to Primarose]

Little miss perhaps, the description of some of our GPs or big miss even.

[Primarose in reply to piglette]

Maybe you should make it "Hit and Miss"!

[Primarose]

Sorry, I forgot to ask you, what was the result of your Dexa scan?

[jlyndauk2002 in reply to Primarose]

Hi I haven't had a dexa scan as my Rhumy said that it is only done at the end of treatment!! This is the second time that I requested a scan but was told it was not policy!! That was the reply to me saying that I didn't want to take meds for something I might not have! Banging my head against a brick wall!

[Primarose in reply to jlyndauk2002]

I should think you were. It states on the NHS site that a Dexa scan should be used if you:--

<are a man or a woman taking oral glucocorticoids for three months or more – glucocorticoids are used to help treat inflammation, but can also cause weakened bones>/

How can they expect you to take meds when they don't even know if you need them or not.

I was told to have the scan on my first and only visit to Rheumy so one has to wonder what "policy" *your* Rheumy is following.

[jlyndauk2002 in reply to Primarose]

Mmmm I wonder, may be because we are in Wales!! Thanks Primarose x

[Primarose in reply to jlyndauk2002]

About as helpful as a chocolate teapot eh!

[piglette]

Hi Jenny, as Primarose says Ibandronic Acid is a potent bisphosphonate. I am not sure of your rheumy’s reasong, if you don’t want one sort of bisphosphonate why would you want another one? It does seem a bit mad to wait until next March before reducing your pred, but mine is not to reason why. I think rheumies like to feel they are in control.

[jlyndauk2002 in reply to piglette]

I was rather surprised about being not needing to reduce till March but I did mention that I found it very difficult reducing last winter so maybe that was her reasoning.

[piglette in reply to jlyndauk2002]

Fair enough. Some doctors do suggest not reducing over the winter months.

[CT-5012]

Have you had a scan? If not why do you need to take anything other than calcium and vit d.

[jlyndauk2002 in reply to CT-5012]

That was my answer to her, she just said it was policy!

[piglette in reply to jlyndauk2002]

Hi Jenny, looking at NHS Wales there is no policy against using Dexascans for certain people in fact the absolute opposite. Which part of Wales are you? They may be cutting back in your area. It would be interesting to know what the policy actually says!!

[jlyndauk2002 in reply to piglette]

Hi we are in North Wales, our main hospital is Glan Clwyd. It would be very interesting!

[piglette in reply to jlyndauk2002]

My sister lives in South Wales and my father was a doctor there until he retired. My sister says she goes to the pharmacist if she needs any medical help as they are so much better than the doctors.

[SheffieldJane]

I think it has the same drawbacks as AA. You seem to be down to a reasonable Pred dose. If it was me I would stick with reducing the devil I know and make sure that I took vit D and K and had a Calcium rich diet.

[jlyndauk2002 in reply to SheffieldJane]

Thanks Jane, This is what I feel I may do if possible, having read up on the side effects of Ibandronic Acid I don't want to take it!

[Telian]

I agree with SJ's reasoning just make sure it's K2 - which helps absorb calcium into the right places.

[jlyndauk2002 in reply to Telian]

Thanks Telian think I will carry on as normal

[karools16]

I used to take AA. Gave it up because of tummy pains. Put on Ibandronic Acid. GP still thinks I take it, but I don't. I have Osteo and curvature of the spine. GP says he recommends taking it, but is my choice, so I don't take it, just Adcal.Iban also gave tum aches, so stopped it.

[ClarkB in reply to karools16]

My Dr and Rheumatologist think I take AA and I don’t, but was only given one packet and they most likely are unaware that I’m not taking it or obtaining it. With 7+ Drs, there’s no real follow up. Not like Dr Finley’s casebook days!