It is some time since I posted anything about my PMR journey, but want to share my recent tapering experience. I have been on prednisone for 4.5 years and struggled over covid lockdowns being able to talk to anyone, gp or rheumatoid, when I was having what I thought were flares of pmr when trying to taper. I have learnt over the last few months from this forum that steroid withdrawal symptoms are very similar to pmr symptoms. Consequently I decided to just try pain killers( tramadol to be precise, when I was tapering from 8.5 to 8 and got the sore neck, shoulders and thighs. To my delight the pain disappeared and I'm successfully down to 8mg every day. I wish I had experimented with pain killers sooner and may be down to a lower dose by now, as I too have developed osteoporosis and had two stress fractures, spine and pelvis, despite having had 4 infusions for my bones and taking vitD3 monthly. I will be starting to taper again next week to 7.5 and am hoping to continue successfully. I will be still doing the slow taper, I don't want to tempt fate, although my inflammation markers have been normal for the past couple of years. I am now feeling the best I have been since my husband died 16 months ago. I walk morning and night with my little dog, have started balance classes and chair yoga so am keeping busy. My garden is mostly dormant at the moment, but I will be looking forward to next spring and summer. I have finally got some enthusiasm back for doing things now my fractures have healed. I wish you all well especially those of you with bone problems as well as pmr and or gca. Life is very difficult when you're laid low with bone fractures, if I hadn't been lent a walker I couldn't have stayed by myself. The pain of trying to get around the house just to do the basics of dressing and eating, was intense. It is so good to finally feel better. Janis
Tapering: It is some time since I posted anything... - PMRGCAuk
Tapering
Hi Janice, have you seen the gardening group which got thought up from someone on Healthunlocked?
facebook.com/groups/6288051...
I belong to the PMR gardening group, it's so good seeing other sufferers gardens. Thank you, Janis.
There are some lovely photographs on there.
Yes there are, it's lovely to see the northern hemisphere gardens when ours are drab and dreary in the winter.
It works the other way round too.
👍
Thank you for this update. Glad to hear that things are going better for you now. 
Have you considered taking Vitamin K2 to help with the bones?
No I don't know about vit k2, I'll ask my GP about it and in the meantime do some research. I did ask her about a calcium supplement but she said no, something about being detrimental to my heart. Thanks for bringing that to my attention. Janis.
This has cropped up a couple of times recently. The study that found too much calcium in the diet of HEALTHY YOUNGER subjects could lead to increased cardiovascular problems actually found that in subjects who took ONLY calcium alongside good diets. When the calcium was taken together with vit D the effect was not seen. In addition, we are not healthy and we are taking a medication that depletes the body of both vit D and calcium and potentially leads to calcium being scavenged from the bones to keep the blood level up.
Anyone on a bisphosphonate or other bone protection drug MUST take some calcium as a supplement since the drug forces calcium to the bones and you are at risk of developing a low blood calcium level which can be dangerous - especially to the heart!
Very interesting
MUST is a bit strong. Enough calcium from dietary sources is very possible. My GP checked me out there. I do take a vitD supplement but it is also added plant based milks.
I think that's what PMRPro meant in terms of your diet.
or supplements if you don't eat any dairy. My dairy intake has increased 10 fold since starting pred
I also have a lot of dairy, always have, prebiotic yogurt every morning on my porridge whish I make with milk. I love cheese and have some nearly every day.
I have shown a constant slight raise in calcium level for over 12 years, so take only Vit D without the usual calcium. The gerontologist said that 5% of the population had this slight raise so it was probably my 'normal' reading and as it has never 'spiked' I shouldn't worry about it. I just keep having it checked but I would like to take K2 for bones but the one I got has 9% calcium as well as K2. I suppose it could just be a 'filler' Nobody, including pharmacists, can advise me whether to go ahead with this. Any ideas?
There are supplements without calcium - just one here
youthandearth.com/products/...
They should all have ingredients on the label.
Perfect - thank you very much. Now on order.
Has anyone checked your parathyroid glands? This is exactly what happened to me. Blood results going back over 10 years showing sometimes raised other times not. It was only being investigated for all of my raised markers before my diagnosis that it showed up I had a large benign tumour on my parathyroid.
Thank you for this. Presume tumour was removed and did Calcium level drop?
Yes, they checked my parathyroid glands and there was a very slight raise but decision taken to do nothing, apart from regular checks on both Vit. D and Calcium.
Tumour was removed last March and Calcium is now fine. I had read that people felt better immediately after a parathyroid removal, have to say that didn't happen, but being on steroids the anaesthetists were amazing and I felt really good after rather than my usual drowsy self with constant vomiting. My calcium levels weren't consistently high though hence it was through the scan they found it and it was also mentioned on my PET scan. I don't think they would have bothered removing it had it not been flagged twice by then. I was keen more because it might improve my poor bone density. Sadly 9 months after the op my bones had decreased but not by much. They went from -3.9 to -3.6
I think that is pretty impressive in 9 months!!
Interesting. The implication was it would improve more than that, but all of my scans were in the same place except the -3.9 one as it was during lockdown. The surgeon wanted me to have a dexa after 3 months but it was 9 months so was assuming it would be a bigger improvement. However I am having a REMS scan in December so that will be interesting to see. Of course I have also had Zoledronic infusions so who knows what is what. I have yet to see anyone in the Endo team though, constantly cancelled!
Dexascans aren't that accurate to be able to compare, even on the same machine and same operator.
No, the REMS in December will be interesting. Here's hoping!
Glad the op. went well and Calcium settled. Good wishes for rest of this journey.
Good to hear things are improving for you, and you are in a much better place.
Not sure your GP will know a lot about Vit K2, many don’t … but it helps direct the calcium [which you should have been prescribed as a combined supplement with VitD along with Pred ] to the bones rather than the arteries.
Keep well..
Thanks Dorset lady, do you take calcium? I have another appointment with my rheumatologist next month, so will discuss this with him.
I still take the VitD/Calcium supplement that is usually prescribed in UK [plus a Vit K2 supplement which I buy].
I had a DEXA scan some 3 years after stopping Pred and a bisphosphonate, and although results showed no sign of osteoporosis it was recommended I continue with bone protection [due to history & family reasons] - so I have.
I read that the calcium tablets should be taken separately, at a different time from VitD/K2. Have you come across this?
Where did you read that? Calcium and VitaminD are very often in the same supplement - as are the ones I take on prescription… and the vitamin K2 directs the calcium to the bones rather than the arteries..
I've heard that claimed before but I can't see why - and you often get combi products so the manufacturers obviously don't think so!! You need vit D to be able to absorb calcium but you shouldn't take calcium at the same time as multivitamin tablets as the calcium interferes with the absorption of some nutrient such as iron, zinc and magnesium.
Actually - I wonder if this is confusing calcium and calcium channel blockers, which are drugs for high BP and heart disorders, You shouldn't take vit D togther with them without speaking to the doctor.
I read it here - and elsewhere. health.com/mind-body/calciu.... So much vagueness about all this!
DIdn't read your comment until after I had read the link - and what I was going to say was how woolly the article was!!!!!
Thanks for that DL.
Good to hear things are on the up - and the pred down!
Such a relief to be going in the right direction! I would never have known that withdrawal symptoms were very similar to a pmr flare if not for you wonderful ladies on this forum. I'll be forever grateful for the information shared.
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