Zoledronate infusion

[Classicmichael]

Hi folks, the last time l saw my Rheumatologist l asked for a dexa scan and given that l was diagnosed with osteopenia over a year ago l considered this a reasonable request.

No l don't think that will be nessasary was his reply.

He did however predictably suggest that l start taking methotrexate alongside the prednisolone and l have decided to ignore his advice for now as l know this drug carries awful side effects.

I also decided to ignore his refusal for a dexa scan and in defiance l went to my Gp and persuaded him to refer me for one and after some persuasion he put the request through.

The same Rheumatologist has sent me an appointment to have a zoledronate infusion carried out.

I have never had a discussion with him or anyone else about the possibility of having this treatment and certainly would have thought a dexa scan would be a good starting point if l were to consider infusions so l have also put this off for now by postponing this treatment pending the results of my scan and what the likely side effects of a zoledronate infusion are.

Sometimes you need more than fortitude to fight illness, especially if you pick the short straw when getting a Rheumatologist.

[PMRpro Ambassador]

Don't kick the methotrexate totally into the long grass Mike. There is no real evidence it works particularly well in PMR - but it does work in other things. Most of its side effects are at the doses used for cancer, which was its original use, but are far less in rheumatology use. There are many people who take it and get by quite well with it - maybe a post on an RA forum would get you some info from people who use it as standard.

And as the rheumy is on the zolendronate path - have a confab with your dentist now so you don't get bounced with having the stuff and then discover you need some dental work done. It would be nice to think you could get your calcium and vit D levels checked too - so if they are not ideal they can be sorted out.

I gather the dear man obviously has communication issues...

[Classicmichael in reply to PMRpro]

Hi PMRpro, l think the thinking behind adding methotrexate was to reduce the steroids and as it turned out that l don't appear to have PMR but now have a spinal tumour to add to my GCA l may see how l do with reducing without for the time being.

Regarding the zoledronate route l think that l will see if my dexa scan shows further deteriation in ostiopenia and the results are not good l will add this to my ever expanding drug list.

Thanks for letting me know about the dental aspect, l had better book an appointment to get that broken molar fixed first.

Off to yet another hospital appointment.

Thanks

Mike

[PMRpro Ambassador in reply to Classicmichael]

Yes - if it is just to get you off pred when you don't have PMR then it seems a bit crackers, it is meant to potentiate the effect of pred and if you haven't got PMR that would seem a bit superfluous.

Have a lovely afternoon...

[Classicmichael in reply to PMRpro]

Thanks PMRpro

[Celtic PMRGCAuk volunteer in reply to Classicmichael]

Yes, Mike, best idea to see what the DEXA result is first. And if you're only slightly into the osteopenia range, no need to rush into Zolendronate or the like, I would have thought.

I became slightly osteopenic but no-one suggested treatment for me, and once off steroids for a year or so a repeat DEXA actually showed a small improvement. Due to an oversight, I wasn't even prescribed the usual Calcium plus Vit D so considered my bones got off lightly especially following a 40mg starting dose of steroids. Just be sure to include plenty of calcium in your diet - oily fish is excellent....and walk if that wretched spinal tumour allows.

[piglette]

I understand Dexascans are limited on the NHS normally every three years minimum and sometimes two years if you are lucky. If you had a scan just over a year ago perhaps that is why the rheumy did not think it necessary to have another one so soon.

[PMRpro Ambassador in reply to piglette]

Certainly, normally the changes in the dexascan only appear slowly - the machines are not sensitive enough to identify small changes so the usual minimum time to repeat is 2 years and that was certainly available in the northeast of England 4 years ago. I was turned down as it was only 18 months when the request was submitted and their rule was 2 years (which it would have been by the time it was done). Other areas may have longer gaps for routine ones - there is a shortage of the scanners and funding in some areas - but they can be done for clinical reasons sooner.

Both Southampton and Bristol (I think) offer private scans for about £55 - and there are other places where they are available privately.

[Classicmichael in reply to PMRpro]

Hi PMRpro, yes the spinal consultant at my hospital expressed concern about my many health issues particularly in regard to warfarin (l would not be allowed to go ahead with an operation whilst taking this)

I agree that it is not usual to have a scan having had one eighteen months ago but he described me as being a complex case having had heart surgery ten months ago, still recovering from a pulmonary embolism as well as GCA.

He pointed out that this is high risk surgery and can have life changing consequences with a potential risk of loss of bowel and bladder control as well as paralysis and the risks and benefits have to be very carefully weighed up before making a decision. (He also mentioned that whilst on warfarin l would have a good chance of dying on the table so l will have to get off it first)

He was very concerned that l have been on high dose steroids for two years and that damage has already taken place to my bones, and if my bone density has been weakened by the steroids the operation would be too high risk to go ahead.

As you can imagin l am just about keeping it together at the moment as sitting in a wheelchair with incontinance is a nightmare l can't contemplate.

Thank you so much PMRpro for your advice about a private scan I think paying £55 would be well worth it with so much at stake and if l can put the zoledronate on hold whist all this is going on so much the better.

Without this site l would almost certainly have gone under emotionally as l feel overwhelmed by bad health, but you kind people have kept me positive.

Thank you

Mike

[Classicmichael]

I think the reason it was suggested by one of the spinal consultants was the issue with osteoporosis if I am having spinal surgery carried out at Addenbrooks they will have to be aware of this and this makes sense to me.

However, it still may be blocked by my Rheumy in which case l may decide to go privately difficult one this?

[piglette in reply to Classicmichael]

I would have thought that if you are to have spinal surgery the surgeon involved would make any decisions on what scans etc are needed, I would not have thought the rheumy would have much say in it. How was your bone density checked last time? Did you have a Dexascan?

[Classicmichael]

Hi Piglette, thanks for your post, please see my reply to PMRpro