Dosage reduction

[Tinasleepyhead]

Following on from my post a month ago, this is where I am now.

Continued with 10 mg daily until I reached 6 weeks, then reduced to 9 mg, which is where I am now. My Dr wants me to continue to taper slowly by 1 mg every 6-8 weeks.

Dr prefers to focus on symptoms rather than blood tests. I asked if I could have blood tests more regularly to monitor my levels, she said they preferred to focus on patients symptoms but she will arrange for blood paperwork for me every 3-6 months. She particularly mentioned the blood tests for sugar and liver function. She will prepare paperwork for Inflammation/Sugar/Liver, to be sent to me when appropriate, last tests for sugar/liver were in November.

Dr arranged for me to have DEXA scan, results came in lumbar spine T score -2.7, lumbar hip T score -2.7

Prescribed 70 mg Alendronic acid once a week for 5 years. I was naturally disappointed as I’ve always done weight bearing exercise and eaten/drank calcium rich foods, realise the prednisone probably brought this on. I started taking the Alendronic Acid yesterday.

I am also to continue with the Calceos/Vit D.

I am not in any pain, am thinking to continue reducing prednisone by 1 mg every six weeks, I would appreciate your thoughts please.

[DorsetLady PMRGCAuk volunteer]

Sounds good so far, and Dr sensible in her approach to further reductions. Follow her advice, either 1mg every 8 weeks or if you prefer and can cut tablets accordingly, many find 0.5mg per 4 weeks has the better outcome.

Obviously, if at any time things begin to go pear-shaped then you need to stop tapering and get things sorted out.

Good luck

[Tinasleepyhead in reply to DorsetLady]

Thank you I really appreciate your comments, and will follow your advice.

[PMRpro Ambassador]

A good sensible approach from a thoughtful doctor. Wish there were more like her.

You would be surprised how many have poor bone density despite previous exercise and a decent diet.

[Tinasleepyhead in reply to PMRpro]

Thank you so much, as you say I’m fortunate to have a thoughtful doctor, I feel very lucky to have my Doctor, she is knowledgable on the subject of PMR and very proactive. I’ll take the Alendronic Acid + Calceos, eat sensibly, and exercise to my ability. Thank you👍

[SheffieldJane]

Your doctor’s advice sounds very sensible. After 5 mgs I would reduce by half a tablet to enable your Adrenal function to recover.So sorry that your Dexa Scan results were disappointing. Hereditary can be a factor. You seem to be taking all the right measures. I know that Heron on here managed to improve her results. She wrote a very detailed post. I haven’t read it for a long time but if the Alendronic Acid doesn’t suit you, it describes an alternative way forward, some of which you already do.

[Tinasleepyhead in reply to SheffieldJane]

Thank you so much for taking the time to message, really appreciated. I will look at Herons post. 😄

[HeronNS]

You can help your bones even more. Make sure you get another DXA scan after a year or two, and be aware that it is not recommended to stay on a bisphosphonate more than two or three years. Have a read of my story for some ideas how you can manage:

healthunlocked.com/pmrgcauk...

[piglette in reply to HeronNS]

Where I live in UK you can only get a Dexascan every three years.

[Tinasleepyhead in reply to piglette]

Hi Heron - I’ve read your story, so well put together, thank you. I will investigate getting a weighted vest for my walks. My OH and I walk daily, except if it is icy, usually cover 10,000 steps, sometimes less but by the end of a day I’ve reached 10,000, made up with being on my feet at home.We belong to a gym where in normal times the classes I attend are Body Pump (using light weights), Body Balance (a mixture of Tai Chi, Pilates and yoga) Body Combat a cardio workout and Zumba, I love these classes and will resume when gyms reopen.

I’ve investigated Dexa scans locally and will be able to get one privately for less than £100, I’ll put it in my diary for 12 months time.

Many many thanks for your message and information, I will be reading some of the books recommended also.👍🏻😀

[Tinasleepyhead in reply to piglette]

Hi Piglette - I believe in my area it is the same. I’ve investigated and can get one privately, therefore will follow that route,Thank you 😀

[HeronNS in reply to piglette]

They tried tried to cancel my second one, but I didn't understand the phone message, thought they were just confirming the time, and showed up anyway and a kind technician fitted me in - it is very quick really, especially if you show up with no metal on. I haven't had one since but after second (2016) was told within three to five years. I'd planned on asking for one for fall 2020 but - covid! I do think if you have an OP diagnosis it is important to be checked within one to two years so you have an idea of effect of treatment or "natural" protocol.

[Tinasleepyhead in reply to HeronNS]

Thank you Heron my scan was 16th January 2021. I will book another for Jan 2022.Looking at weighted vests now, have you any recommendations please?

[HeronNS in reply to Tinasleepyhead]

I bought the hypervest because it has very small individual weights so you can start with a very low weight and work up slowly - important for people with potentially fragile spine. I was able to start with 5 lb as I was used to that sort of weight in my backpack, but you could start with just a few ounces if need be. The vest is not exactly elegant, but the weights are distributed over your torso, the vest fits close to you, so no hanging from the shoulders, and I find it very comfortable to wear.

hyperwear.com/blog/weighted...

[Tinasleepyhead in reply to HeronNS]

Brilliant Heron, I’ve read the reviews for Hypervest, definitely looks to be the choice for me. I’m 5’4” weigh 122lbs, looks like medium would be my size. I like the idea that you can start and work up with weights. Thank you 🙏

[HeronNS in reply to Tinasleepyhead]

I was right on the line between two measurements, and I emailed the company and they said to go with the larger of the sizes, so I wear medium. If your measurement fits into the range of their chart then you should be good to go! It seems expensive but I do not expect ever to have to replace mine. Good for life!

The whole idea behind the vest is to add slow increments of weight as this provides a continuous challenge to the bones, not to work up to a high-ish weight and stop there. Because I've not been able to carry weight for some months I'm going to remove some of my weights, maybe even go back to my initial 5 lb (up over 8 lb at last use) and start over when I'm up to it, soon I hope, fingers crossed!

[Tinasleepyhead in reply to HeronNS]

Do hope it isn’t too long before you can go back to using your weighted vest Heron.Thanks for all the advice, invaluable, as you say expensive but not in the scheme of things at all. I’ve found it on Amazon, looks like it comes from USA, can’t find it on sale anywhere in UK.

Love this site and all the wonderful regulars, like yourself, I read the messages every day. 👍🏻

[HeronNS in reply to Tinasleepyhead]

I live in Canada and I ordered directly from the factory in Texas as I couldn't find a seller here. If I were overseas I would use the evil A!

In fact my son is using evil A to order Flexiseq for me from the UK as it isn't available in Canada.

[Tinasleepyhead in reply to HeronNS]

Hi Heron, what a beautiful place you live in, we’ve visited a couple of times and really enjoyed our travels to Nova Scotia, we are in UK, my sister and her OH live in Ontario. I’ve ordered the vest from A!! I will follow your advice and add increments slowly to challenge my bones. Do hope it’s not too long before you are back using your vest 👍🏻😀

[HeronNS in reply to Tinasleepyhead]

Most of my family is in UK and my daughter now lives in Ontario. Too bad we can't travel anywhere at the moment!

[PMRpro Ambassador in reply to Tinasleepyhead]

Remember you cannot compare scans done on different machines directly - and the figures aren't absolute. They should tell you if you are still OK or deteriorating though

[Tinasleepyhead in reply to PMRpro]

Thanks for the tip 👍🏻

[piglette in reply to HeronNS]

That is a lovely story!