update on statins, Leflunomide & biphosphates

[Japsquar]

this is a good news story of me ready to charge at doors which gently and easily opened! Over the last 3 weeks I have spoken to and seen three medics who I expected to push me into drugs I didn’t want.

Medic 1 - my GP who discussed statins, agreed my cholesterol was borderline and that statins were a complication I could do without, given the other issues I’m dealing with. Result!

Medic 2 - my Rheumy who I expected to press me to take Leflunomide to help reduce prednisolone as I’ve struggled to get below 20mg for any length of time. She listened, agreed when I said I wanted to give my system a breather from any new drug. Told me to let her know of significant change and to contact her when I get to 10mg - or despair of that! She’d already referred me to the osteoporosis team because of fractured vertebrae.

Medic 3 - osteoporosis nurse. Up until 48 hours before I was determined to resist biphosphonates unless she could convince me I was in the area of osteoporosis, but some movement the previous day took me back to square 1 on the fractures - horrible pain, struggling to walk, so I had a different mindset! She agreed I was only osteopenic but moving in the wrong direction. Explained the numbers etc, clarified the options, no pressure to make a decision and much sense of humour. I opted for the infusion once a year for three years. A no brainer. Anything to make it less likely that this happens to my spine again as it puts me totally out of action. My OH is amazing but he has Parkinson’s so he won’t necessarily always be able to cope.

Added to that GP is sorting some hopefully more effective painkillers, so I feel very blessed and very well served by the NHS.

Credit also must go to all you who shared expertise and experience in answer to my recent questions - which meant I was able to face those interviews with information and confidence, don’t know what I’d do without you!

[tangocharlie]

Interesting to read as I am having similar discussions re bisphosphonates atm as I have suddenly got 2 fractured vertebrae. People are jumping tothe conclusion it is caused by long term use of steroids and osteoporosis, but it could just be one of thoe things as age is also a factor in such fractures. So one of my questions is, how do you know if you 've got osteoporosis? And are you supposed to take bisphosphonates regardless of whether you have or haven't, as a preventative? I'm throwing this out for Japsquar or anyone to answer.

[Japsquar in reply to tangocharlie]

That was my position exactly. I did have a dexa scan in the summer so there was evidence and the scores had shifted towards osteoporosis since a previous scan ten years ago. But it was the extreme pain that changed my mind - amazing how it does! I guess I’d be useless under torture! Have you asked for a scan? If you haven’t had one recently that would seem sensible and give some information

[tangocharlie in reply to Japsquar]

After trying to get a scan for 6 months via GP and physios my wonderful rheumatologist arranged x-rays last week which show to our shock and horror 'squished' vertebrae that are now wedge shaped. My DEXA scans have always been fine, and x-rays a year ago showed no problems either. I've been in so much pain for nearly a year now and had useless physiotherapists just telling me to do exercises that I kept saying I couldn't do. Now I know why. Strange it all happened so sudden though

[PMRpro Ambassador in reply to tangocharlie]

It isn't the bone density that is 100% crucial, it is only an additional criterion, Most people who break bones have normal bone density and it is when fractures occur without any obvious cause they are concerned. I don't have any pain in the spine at all - my t-score for the spine is -2,2. heading for but not yet osteoporosis. But I have a vertebra showing compression, the early stages of developing compression fractures. The bisphosphonate has been shown to reduce the risk of further fractures within a couple of months. Prolia does so within days but once you have started, you have to continue with that.

This looks a helpful article:

umms.org/ummc/health-servic...

You'll see that there are other things for you to bear in mind - careless activities, slipping of the edge of the bed or a chair and landing on your bum, twisting actions, jumping down a step and landing with force, bending and lifting things - all bad for spines.

[tangocharlie in reply to PMRpro]

This looks useful thankyou, although seems more about the thoracic rather than lumbar spine. I'm trying to take it all in and make sense of what's happened, by making a list of questions. How I'll get answers in a 'not my circus not my monkey' NHS sysem where everybody works in their own silo and passes the buck is another matter.

What I know so far is I have 'wedge' fractures in L3 and L4. I don't know how these have happened adn there doesn't seem to be a fix. Bisphosphonates coul reduce hte possibility o it happening to other bones. Going from original post above, there my be an osteoporopsis team in my area so I guess I should ask about that because if you don't ask you don't get.

[PMRpro Ambassador in reply to tangocharlie]

L1 and L2 are mentioned - that is where the problem usually manifests for certain events but that isn't the only place.

The wedge fractures will heal with time, 3 or 4 months is typical. The desire on the part of the doctors now is to reduce the likelihood of more happening. In the past, before bisphosphonates, little old ladies became little old ladies because the vertebral fractures made them shorter and bend forward.

Call the ROS helpline, they can explain a lot for you.

[kalgoorlie in reply to PMRpro]

I fear I shall always be 'a little old lady' now, rather than my preferred 'retired IT consultant'. I am horrified to find that I am now 151 cm, having been at a treasured 152..4 It's worse in Imperial terms ...I used to be 5ft...now 4ft 11. I have lost that magical 5 number

[DorsetLady PMRGCAuk volunteer in reply to kalgoorlie]

😂🤣

[PMRpro Ambassador in reply to kalgoorlie]

Tell me about it!!! I was once measured for nursing - 4'11 1/2" and I was so upset ...

[Japsquar in reply to PMRpro]

So much for my upbeat post of yesterday - after a truly horrendous evening of pain I’m getting highly tempted to go for Prolia - your remark that it works “within days” is seductive! I was put off by having to stay on it but am feeling desperate. Will go back to the osteoporosis nurse today and discuss further.

[Rugger in reply to Japsquar]

You can come off Prolia, but if you do, you have to take a bisphosphonate such as Alendronic acid or Risedronate, to prevent the rebound loss of bone mass that happens when Prolia is stopped.

Best wishes, whatever you decide.

[Japsquar in reply to Rugger]

Yes, thanks Rugger, that’s an option. Or as my daughter said, 🤣 it’s not going to be that long to stay on for life!!

[PMRpro Ambassador in reply to Japsquar]

That doesn't mean it stops any pain in that time. But it should reduce the likelihood of further such events. Spinal fractures are very painful, as you know.

[suzy1959 in reply to tangocharlie]

I’m sorry to hear this but I guess it’s better to have some explanation for your pain than not. I hope your fractures heal well and soon.

[PMRpro Ambassador]

Great - that is what we like to hear!!!!

[tangocharlie]

Sorry Japsquar if I've diverted your original post a bit in my responses . BTW I tried Lef at one point a dww years ago, it did nothing and gave me peripheral neuropathy. I am not aware of any research that shows it has ever benefited anyone with PMR but you never know. I'm on Hydroxychloraquine (usually abbreviaeto HCQ), which I think has helped me reduce my steroids drastically, but again no research has ever been done on it re PMR so I can only hypothesize. Thank you for your inspiring post today

[PMRpro Ambassador in reply to tangocharlie]

I have posted about Lorna Neill in Scotland who got to a much lower dose of pred. Dasgupta published a paper years ago about it where he claims all the subjects went into remission but I can't find it but there are other studies.

ncbi.nlm.nih.gov/pmc/articl....

There is also a study underway in the Netherlands I think - it was started just before Covid so had to be suspended.

[tangocharlie in reply to PMRpro]

Thank you for that Pro, I stand corrected and gladly better informed. I must have got confused with there being a lack of HCQ research.

[herdysheep]

So pleased you have had positive experiences with the different medics. No matter what our problems/issues, those sorts of encounters are good for our mental well being.

[Louisa1840]

So good to hear of medics who listen! Well done you.... I decided to have 6 monthly Prolia injections once every 6 months because my doctor said how frustrated she was on seeing fractures that could so easily have been prevented........

[Sophiestree]

I think I want to move to your area. You must have felt good after those 3 appts.

[Viveka]

On the cholesterol issue, you could see my recent post about how plant sterols brought my bad cholesterol down from 6.2 to 4.2.

[Japsquar in reply to Viveka]

Ah, interesting, have tried those, but will look see what you were using, great result