Actonel injections

Hi Lodger, I am taking 1000 mg of Calcium which I stated.....no problem!  I am in the US and they call Alencronic acid Actonel.  I don't like adding anything more than what I am taking.  I react right away, and I don't want to take this chance.  An injection is going to stay in my body, and I cannot do anything about it once it is given.

Thanks for your input, Erika

erika

So you live in the USA, well the FDA have published the whole shebang on AA as we call it, Actonel as you call it.   Take a gander. Some of us were very pleased to read the FDA spiel on it.

Hi lodger,  AA (alendronate) is a different med. from Actonel (risedronate), though both are bisphosphonates. The first one has been around longer. Both claim success in fracture prevention, both are available in generic from and are cheap. There is research to show, however, that the branded  ones are more effective,have less side-effects and therefore are tolerated better by users. . .  Best wishes. J

If you take a look at the National Osteoporosis site it has a load of information.   This site also has information under Osteoporosis.

Use the search top right had cornet - labelled Search Patient.

Kay, please let me know.  I am 74 years old.  It would give me a guide line, too.  I am very hesitant following doctor's orders and would like to do research first myself.

Thanks,

Erika

Hello Kay -

Yes that is the case - the normal procedure is first making sure that AA is neccessary - that osteoporosis is diagnosed - with a dxa scan.

In "normal" cases (where prednisolon is not involved) a new scan would first be taken after a 2 year interval - apparently there is very little change after just one year.

I have osteoporosis and am taking prednisolone for going on 3 years - I have had 1 dxa scan per year, am booked in for a third scan in august.

The first scan was taken as the precautionary evaluation at the onset of prednisolone treatment - this is when it was discovered that I have osteoporosis (just to add insult to injury!!) so I was started on AA straight away.

I am fortunate that I have not experienced any side effects (touch wood it stays that way!)

My second scan last year showed a very slight improvement, so I am hoping that my next scan shows another improvement.

As I understand it treatment with AA should stop after 5 years -

I don't know alot about AA - just thought I would share my experience with it.

Thank you I will do that.

Yes Erika I will let you know when I find some answers and go the doctor. Kay

 

Thank you for your story Janet. I hope I do not have osteoporisis but felt I needed to gather all the info I could before the result. It's encouraging to hear you have no problems with AA and that there was some improvement on the last scan. I struggle with the calcium tablets, they make me feel a bit sick but needs must!! I take medication for epilepsy and Meniers.....I think sometimes my tummy is just overloaded with medication now on the steroids. Kay

I can definitely relate to the feeling of being overloaded with medication!!

I had a real struggle in the beginning - I went from being a "headache pill on the odd occasion" to (in the beginning) in the region of 13 pills a day - that took some getting used to!

I remember looking at these little pills and thinking "this is just pure poison" - I have been one of the lucky ones, I have had more side effects with prednisolone than with either methotrexate or AA.

Anyway now I am getting closer to my goal - prednisolone is now down to 8,75mg per day and I can really feel the difference in my body - unfortunately I can also feel some of my original symptoms creeping back - I am giving my body a chance to catch up and hope that it kicks in to play before my next blood test which is next week. Otherwise I am afraid my rheumy will want to up the prednisolone dose again.

Oh well - as you so rightly say - "needs must"!

Hope that everything goes well for you.

Janet

Thank you Janet, will let you know the outcome. I think I am lucky with the pred as only had the fog feeling at 15mg and slight vertigo until 9 mg. Now on 8mg and following Eileen's slow nearly stop method. Will wait for a couple of weeks before trying to get to 7 as have an eye injection next week for wet macular and get a bit stressed for a few days. So many things to juggle but feeling more positive now. Kay

Eileen, thank you, I needed to read your opinion.  I had a bone scan 4 months ago, and my GP said only that I needed to increase the calcium from 1000 to 1250 mg. 

I changed from this GP in Portland to a local Medical Group much closer to my home here in Vancouver --- like 3 minutes away --- where I don't always see the same doctor, but I can get an appointment very soon.  The doctor who saw me is older and belongs to the faculty.  He seemed thorough but he thought that I should be seen by a rheumy from the same Medical Group because I also have RA which is not very active.  The PMR is bothering me much more.

 

He prescibed a Diclofenac Sodium topical gel for the piri formis pain on both sides of my back.  Have you heard of it, and is it effective?

Yes, unfortunately he made the remark of PMR being annoying which gives me the feeling that he does not fully understand the disease.

But this is what we have to deal with.....luckily we have this website with counsel and opinions of fellow sufferers one can relate to and understand.  My thanks to you, as always, Erika

Erika

In the UK, Methotextrate is a gold standard drug for RA.

It is also used, sometimes as a Steroid Sparing agent.

It also works when patients develop Late Onset RA.

As you have both, it is worth trying it out  - I would discuss with your GP.

Lodger, thanks - I will discuss it with the rheumy.  GPs do not prescribe it.

I hear that this medication in pill form can be terrible on the stomach. I might consider injection which I remember reading from another fellow sufferer on this website which seemed to work better.

The RA has never bothered me quite as much as the newly diagnosed PMR has.  I was diagnosed with RA 15 years ago and a low dose 200 mg of Hydroxyquinine controlled it very well. I am 74 years old and don't have any joint damage.  I am still hesitant getting into MTX because of the side effects.

Thank you for your caring input. Erika

 

Concur with that one Erika - the reason I stopped taking it.  Only took it four times at usual time/day each week, by the 4th week I started to dread taking it as I felt so bad that day and the next.

Diclofenac sodium is an NSAID - non-steroidal antiinflammatory drug - and the recommendations are that NSAIDs and pred are not taken together unless absolutely essential. That includes topical versions since they are absorbed through the skin (they wouldn't work otherwise) so get into the system.

If you have piriformis pain then a physio would be my first stop - if I hadn't got a Bowen therapist that is! Physio/Bowen will do more to deal with the cause - painkillers only mask the pain.

If your RA and you are happy with hydroxyquinine I'd have thought that was OK - some rheumies offer it in PMR though whether it does any good I have no idea!

I suspect that maybe older doctors are a bit more dismissive of PMR - when good ones turn up they are often younger but that is just my impression. I know a couple of people whose really good GPs have recently retired. Shouldn't be allowed if they are good at PMR...

It was good that you stopped it.  I don't know what injections might cause to the body.  It could be a very unpleasant surprise, too. A risk I don't readily want to take.

Yes, it does not make much sense to rub into the skin a NSAID which would cause as much harm as a pill.  I asked this doctor for physio because of the pain but he did not think it would be necessary.  He told me to do certain exercises. 

I do have a Bowen Therapist close by.  I am hesitant because of the expense and the ongoing treatments I would need.  I will give it a try when I have more time this summer.  I was in the middle of selling my townhouse which kept me busy.  It sold -- hoorah, and I will be rid of the two high staircases which have been bothering my back.

Luckily, I do have a choice of doctors --- also young doctors --- with the close by Medical Group. So I will continue with my endeavour.

With thanks for your input, Erika

If it hasn't done the job - or at least made a big difference - after 3 sessions it isn't likely to help having more, it is something you can see the end of and you shouldn't be told you will need it for the foreseeable future. I had a couple of sessions every 6 months because of my problems with PMR - that is chronic so will often recur. Sort piriformis and it should be fine.

So glad you have sold your house - no stairs is A VERY GOOD THING when it comes to PMR. You'll have the energy to go for a walk once you have moved! I speak from personal experience there too!

Thanks, Eileen.  I will give Bowen Therapy a try.  I still need to live in this townhouse until August 5th which will be my closing date.  Still need to put up with the two high staircases, and so difficult because the garage is underground, and I need to take groceries up the steps.  My 10 year old granddaughter is helping me when she is with me...

Eileen, I am going to have my first Bowen session today.  I signed up for three.  I will see how I feel afterwards, and I will let you know. 

Dank und viele Gruesse, Erika

Fingers crossed then - I do hope it at least gives you some relief. Wish I could come with you!! Remember to drink plenty of water afterwards and rest too.

I have the water bottle ready - and I will rest!  Danke!

Hi Eileen,  I had the first session today with the therapist of Balanced Bodyworks, and she knows the Bowen technique. 

She said that she would need to align my body first, and this was done in short sessions with rest inbetween.

It was VERY relaxing in the Thai tradition with calming music.  I enjoyed it.  She reminded me to drink plenty of water.  And, I do feel better and I have less pain.

The next session will be next week, and then she will address the piriformis syndrome.  She said that I have sciatica (especially on the right side) caused by PMR in part.

I am glad that I finally had this experience, and I can recommend it to everyone.  With thanks to you, Erika