Raloxafine

[Berylholley]

My rheumatologist and doctor want me to take bisphonate as I have 3 fractures IN MY lower vertebrae in my spine. I have tried them several times and am worried about dental problems. I have now managed to get doctor to let me have Raloxafine Can you advise me regarding vitamin D in my blood test as I am having blood test on Tues.

[Bev53-SB]

I am in a similar position with a fractured sternum and two compressed vertebrae. I have managed to put off OP medications since diagnosis 8 yrs ago with exercise and supplements but now my consultant wants me to receive OP treatment. I have refused bisphosonates because of my dental history and fear of ONJ. I am considering Raloxifene. However, before I take it I have arranged for a NHS health check to assess my Q scores, this will tell me my level of risk of either a stroke or heart attack. I am also taking daily blood pressure readings. There is risk with Raloxifene of DVT and strokes, it can also raise your blood pressure. There is a long list of side effects but it is like Russian roulette deciding which medication to take. If my Q score is favourable and blood pressure acceptable and if my NHS assessment nurse and GP this week give me reassurance, I am going to take it and see how I manage any side effects. My Vit D levels are good, I take CacitD3 which is a calcium carbonate but when mixed with water releases as calcium citrate which is more easily absorbed. I would be interested to know how you get on when you start to take Raloxifene Beryl.

[Berylholley in reply to Bev53-SB]

Hi Bev I have started taking the Raloxafine and like you have wayed up the pros and cons. I am in practically the exact same position as you only my fractures are in my lumbar spine. I am 84 and live in the West Midlands. Can you tell me your level of Vit D as I don't know much about it? I will compare notes when I get results from my blood test.

[Kaarina in reply to Berylholley]

I do not know if this helps but I have my Vitamin D tested twice a year because we do not store Vitamin D and levels may well be fine in the summer months but not so in the winter months.

My level appears to be 123.1 in both summer and winter and my doctor is very pleased with my result. I must be doing something right! On my report underneath my Vitamin D result, there is also a result for Inorganic Phosphate of which mine is 1.30 and the ideal level according to my report should be between 0.8 - 1.5.

On my report it show the level for Vitamin D ideally should be between 80 - 150.

[Berylholley in reply to Kaarina]

Thank you Kaarina for the most useful information. I am not very ofae with the vitamin side of it. I had a scan done but don't understand it

[Bev53-SB in reply to Berylholley]

Hi Beryl ... I can’t remember the exact level of vitamin D when I had my last blood test done, but it was only 2 months ago at the hospital. The level was very high. I take CacitD3 twice daily and I have been told to continue with these but to stop the large weekly dose of cholecalciferol I was also taking (prescribed) until Oct when my Vit D level can be checked again and cholecalciferol restarted if needs be.

[Berylholley in reply to Bev53-SB]

I shall try and digest all this, where would I get CalcitD3 from?

[Bev53-SB in reply to Berylholley]

Hi Beryl, I was prescribed CacitD3 by the hospital consultant because although it is calcium carbonate it becomes calcium citrate when mixed with water. I wasn't absorbing calcium carbonate very well. Cacit D3 is now on my monthly repeat prescription, I have been taking for over 5 yrs and it suits me well.

[Berylholley in reply to Bev53-SB]

Thanks I shall ask doctor next visit.

[Bev53-SB in reply to Berylholley]

Good luck, please let me know how you get on

[LynneH-19 in reply to Bev53-SB]

I had my Vit D result yesterday via email. Disappointed as it’s gone down. I try to keep it optimal and result in Feb was 146 nmol/L which I was happy with, although it’s usually a bit higher than this.

I had changed from 5000 IU to 2000 IU and must confess that I’ve only been taking them about 3 times a week, during our brilliant summer weather. I have a relatively pale skin, so assumed I would be making up the difference when gardening. I know dark or tanned skins, aren’t as efficient at making D, according to Dr. Mercola.

Anyway, it’s fallen to 108 nmol/L. Still adequate but not what I want. I will take it daily again and go back to 5000 IU come winter.

Best wishes

[Kaarina in reply to LynneH-19]

Hi Lynne, I wonder if as we age we are not as efficient at making Vit D by being out in the sunshine, whatever skin type we have.....

Wow, you like to have a high Vitamin D result. I was happy with mine at 123.2 and so was the doctor even commenting that it is ages since he has seen a result as high as this! Perhaps I should aim higher. I am prescribed 800 iu daily.

[LynneH-19 in reply to Kaarina]

Hi Kaarina. If you and your doctor are happy with your results, I wouldn’t alter what you are taking.

My doctor would probably think mine is too high, but being as I have to send mine off and pay for it myself, as they won’t request them, I can please myself what I aim for. I’m sure it helps my immune system, if not my bones. Touch wood, I never get colds etc since keeping a high D level, even though the younger folk I work with seem to catch all the seasonal bugs that do the rounds.

I’m sure you are correct about us not making vit D via skin as efficiently yas we get older. All our ‘good’ bodily functions seen to slow down. I just have to look at how thin my hair is compared with in my younger days!

[Met00 in reply to Kaarina]

Wow, that's an amazing level for just 800iu daily! Mine drops right down to low 50s on that dose.

[Kaarina in reply to Met00]

Thank you Met. I think it is the amount of sardines (with bones) I eat per week! It is not the sunshine as I no longer like to be out in it!

[Bev53-SB in reply to LynneH-19]

Hi Lynne, I have just found my latest Vit D result and it was 154nmol. The hospital felt that this was too high and have suggested that I stop taking my 2 weekly cholecalciferol of 20,000 units until the end of Oct and then have my levels checked again. They have however advised me to keep on my Cacit D3 so I am still taking 880IU D3 daily.

[LynneH-19 in reply to Bev53-SB]

Hi Bev. There doesn’t seem to be a standard dose or even a D protocol, that suits us all.

I personally prefer to take a daily dose, be it 2000 or 5000 IU, rather than a massive dose of 20,000 units every 2 weeks.

I would be very happy with your result of 154nmol, but can see why your doctor has said not to take your 20,000 units.as it would be harder to predict the outcome.

It will be interesting to see what your repeat in October comes back as.

Best wishes

[Bev53-SB in reply to LynneH-19]

I agree but with just Cacit D3 my levels were still on the low side and it was the edocrinology/bone clinic consultant who prescribed the high dose cholecalciferol to boost my levels. It did the trick, but I will keep my eye on it now in case it drops again.

[LynneH-19 in reply to Bev53-SB]

Hi Bev. After you have your repeat tests in Oct, if your level of D has fallen much, you could always try a daily extra 1000 or 2000IU D3 instead of the very large dose you have been taking. If the doctor offers you a prescription for D3, make sure it’s in gel capsules, as the D3 is already suspended in oil, so said to be easier absorbed than dry tablets.

I get Drs Best brand, from The internet service that Bodykind sell. They are a U.K. distributor and don’t charge postage. I’ve found both them and the capsules reliable. They are also very reasonably priced.

Good luck for Your appointment.

[Bev53-SB in reply to LynneH-19]

Thanks Lynne, the Vit D I have been prescribed is in gel capsule form. My GP doesn’t prescribe initially, he only prescribes what the hospital recommend and they are prescribing according to NICE guidelines. I will however keep a close eye on my Vit D levels and level of prescription. Just to update you re Raloxifene, my cholesterol is only 3.9 but my GP and the British Heart Foundation helpline are saying even with a low cholesterol there is evidence that taking a statin will still help reduce the risk of a stroke or heart attack, I have been advised to take the Raloxifene after my surgery on 3rd Oct, see how it suits me, then if I am still concerned about the potential risk of a DVT, heart attack or stroke, to consider a statin. I feel as if I have a plan, albeit scary.

[LynneH-19 in reply to Bev53-SB]

Hi Bev. What are Q scores please?

Thanks

[Bev53-SB in reply to LynneH-19]

My Q score today was 16.8 but I am 73 and this figure is lower than the average woman of my age .. and this includes in my assessment the fact that my mum died from a cardiac arrest when only 59 yrs old. However she had byssinosis, which caused angina and emphysema and these factors are not relevant to me. My sssessment nurse said for my age it is a good score, but I will wait to see what my GP says later in the week.

[LynneH-19 in reply to Bev53-SB]

Hi Bev. I’ve never heard of Q scores. Is it like a health questionnaire/ screen where you are given positive and negative points according to your health status and family history?

[Kaarina in reply to LynneH-19]

qfracture.org/ It may be this? As you say a health questionnaire......

[LynneH-19 in reply to Kaarina]

Hi Kaarina. That’s interesting. Just filled it in and my score is 18.3% for the first and 7.6% for hip.

In 2012 my frax score for 10 years was 45% risk of major and 14% hip.

My Mam had a fractured hip and Nan a fractured femur, both due to OP. I’m always scared of following in their footsteps.

Thanks for that.

[Bev53-SB in reply to LynneH-19]

Hi Lynne, I’d never heard of Q scores either until very recently. It is an assessment of your risk of cardiovascular disease, heart attack or stroke over the next ten years. You can google it to find out more information and there is an online questionnaire to work your score out if you have all the information you need. It considers age, cholesterol levels, height, weight, blood pressure, diet, lifestyle and family history of cardiovascular problems. Raloxifene and Strontium Ranelate both carry cardiovascular and / clotting risks. I’ve heard that Strontium Ranelate May be reconsidered as an OP medication.

[Kaarina in reply to Bev53-SB]

Hi Bev,

Is it this that you are referring to? qrisk.org/2016/

[Bev53-SB in reply to Kaarina]

Yes, I couldn’t complete it when I first checked it our because I didn’t have a breakdown of my cholesterol results, hence the visit the surgery for a NHS health check, apparently you are not eligible for a NHS health check after your 74th birthday, so I was just able to slip it in. The nurse was very helpful and we were able to discuss my score in a personal context and in relation to risks if I take the Raloxifene

[LynneH-19 in reply to Bev53-SB]

Hi Bev and Kaarina I’ve just filled in the qrisk link and it came out to 11%. I haven’t have my cholesterol checked for donkeys years, since the the ‘Cholesterol Myth’ was written, so I couldn’t fill that part in.

I went from eating so call ‘healthy’ margarines to replacing them with Kerrygold butter, after realising that margarines actually contain more man made trans fats than butter and that it’s these that cause the health problems.

Best wishes

[Bev53-SB in reply to LynneH-19]

That’s a good Qrisk score, I believe 10 or under is low risk, I would be very happy with a score of 11%

[LynneH-19 in reply to Bev53-SB]

Bev. Where did you hear about the Strontium Ranelate perhaps being reconsidered as a OP medication? Only Servier had stopped making it last year.

Thanks

[Bev53-SB in reply to LynneH-19]

I rang the NOS help line to discuss Raloxifene and it came up in the conversation. It wasn’t a definitive statement, just a comment that Strontium Ranelate may be reconsidered in the autumn because so many people complained about its withdrawal and also doctors had stopped prescribing it because of the heart attack risk. Clearly it is the heart attack risk that seems the issue and maybe this is under review. When I rang NOS again to ask further questions about OP drugs, it was a different nurse, she was more reluctant to discuss Strontium Ranelate so I guess we will have to wait and see

[LynneH-19 in reply to Bev53-SB]

Hi Bev. I will try to contact Servier to see whether they are likely to start making it again.

I think it’s unlikely as their patent expired.

Thanks

[Bev53-SB in reply to LynneH-19]

That would be good, it will be interesting to see what they say.

[LynneH-19 in reply to Bev53-SB]

Hi Bev

Bad news I’m afraid. I emailed Servier UK last night and just had a phone call from them to say there is definitely NO plans to make SR in the future.

So if something does appear on the market called SR, it will not be the genuine drug. Best wishes

😭😭😭

[Bev53-SB in reply to LynneH-19]

Oh Lynne, that doesn’t sound good does it. Are you a NOS member, I am and I receive their quarterly newsletter. It often has articles on treatment updates and if there is any change I am sure it would be reported on. In the meantime it is Raloxifene rather than bisphosonates for me. Best wishes to you too.

[LynneH-19 in reply to Bev53-SB]

Hi Bev. Thanks. I’ve been a NOS member since 2010 and used to go on their Forum, until they closed it down. We were really guttered when they did that.

I use a couple of other Forums now. The large, US National OP Foundation forum. That’s helpful and free to join. They send members a daily email, usually comes mid afternoon in the U.K and this provides an instant link to open it. The other one is called Patient. It’s very similar to this one. All are helpful!

Good luck with the Raloxifene and keep us posted as to how you get on with it.

Best wishes.

[Bev53-SB in reply to LynneH-19]

Thanks for this info Lynne and yes I’ll keep you posted re the Raloxifene. I am having a trapeziectomy early in Oct because of an arthritic thumb joint and I have decided to wait until after the operation before taking it. One of the potential side effects is swollen hands and feet and I don’t want ant complications after surgery on my thumb/wrist due to swelling or oedema. It is a fine art getting the balance right for various conditions ... the joys of getting on in years! However in general I am fit and healthy and manage Yoga, Pilates, Zumba and walking the dog so I am not complaining. All the best.