Reducing plus how much calcium should we have daily???

Seem to have lost my last thread in which PMRpro kindly responded and I was to keep her posted.

My ESR has dropped from 16 to 8 within a 3 week time frame on my Hydrocortisone 12 hours slow release acid resistant caps.

Had a B12 injection last week as my bloods indicated level borderline - had certainly put a "tiger in my tank" for a few days and had a totally new lease on life. Hadn't really wanted to eat much for months prior to this and have lost 3/4 stone.

A slight set back over last few days where I needed to tackle a difficult issue with client and noted I got quite stressed, instantly headachy and last 2 days fatigued.

Thought I could have handled the stress better but body told me other wise.

I am slightly annoyed with myself over this because I have been doing everything humanly possible to get as well as I can before our winter sets in as my immunity is low with present blood test which I know is usual in our situation taking steroids.

Am going to make appointment with Vein Specialist this week as lower right leg veins painful and swollen at days end - also still oedema with this ankle and can't wear a shoe comfortably now.

Noted last week when running my fingers through my hair that I have a wee dent (1cm at least as can fit 2 finger tips into it) near the fontanel area - could this be thinning of the skull?

I don't do diary, very little cheese once in a blue moon, but eat nuts, yoghurts, Keifer,plenty of green veg plus pumpkin, carrots, sprouts beets, mushrooms, avocado and have a milky quinoa porridge for breakfast every morning.

I can no longer tolerate black tea for some reason so not adding my almond/coconut milk like I did.

I do make a carob/cocoa drink at night with my almond/coconut milk, but wonder if I am actually getting enough calcium or could this indentation be something else?

Have downloaded your deadslow and stop plan PMRpro to show Rheum. Spec after Easter when I am due for next apptment.

Is this the best as he is considering tapering and I am not in a hurry altho would like to make a start after I have had my leg veins attended to.

Appreciate your thoughts - kind regards to you all once more and:)

3 Replies

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  • I can't comment on your "dent" - but bone doesn't just disintegrate overnight so I would ask your doctor about it. Your fontanelle should be well closed by now ;-)

    Your diet isn't particularly high in calcium so I would have thought some supplements might be a good idea - but you need a dexascan to know the state of your bones. Vit D is also important and that doesn't come from diet - and the main source is from sun on skin. But that requires being in the sun without clothing or sunscreen in the way plus as we get older the "factory" gets less efficient. Another blood test required maybe?

    Tapering is needed - long term steroids are better lower than higher. You need to taper slowly to find the lowest dose that manages the symptoms - and in big steps you will miss the end point.

    Is it veins as such causing the problem? PMR often comes accompanied by peripheral swelling and oedema. I found manual lymph drainage worked a miracle.

    Oh yes - nearly forgot: PMR, steroids of any sort and stress don't make good bedfellows! I found myself in a quivering heap with a simple phone conversation at times!

  • The dent is rather peculiar in the sense it is to the right of the fontanel and know this would have closed when a baby of course.

    Strangely it is slightly more noticeable at days end as opposed to first thing in the morning .... odd really.

    I take a Metagenic's Vit D3 1000IU x 2 daily summer time, and x 4 in autumn/winter. I take Vit K2 alongside the Vit D3 for added absorption as recommended by my holisitic GP.

    It was my ENT Spec. who originally recommended Vit D3 to me which has cut the number of upper respiratory infections of usual severity completely for last 4 winters. He has written a fair few papers on the benefits and is passionate about the topic.

    Yes, I believe my leg veins are causing issues so have booked in next week to see a Vein Specialist with whom I consulted once before in 2013. She noted several changes then and I recall a comment being made to me that the valve/s was/were not working efficiently, so highly likely deteriorated since then.

    I saved your deadslow and stop method of tapering to my favourites thinking it would still be there when needed. When I went to open it last night to print off it had disappeared??.

    Can you tell me please where I can find this once more?

    Appreciate this as I want this tapering to go slowly which I plan after I have had my leg treated.

    Furthermore, I want to take a printed copy to show my Rheumy. Spec that this is how I want to taper.

    I am in the process of having a 5mg Hydrocort. slow release made up - I am not keen to drop in 5mg increments and have suggested that maybe an additional 3mg capsule also be made up. Presently I still take 15mg x2 daily which I am told is a fifth of a low dose Pred., so I am pleased it is considered low and has done the job thus far.

    Maybe further bloods need taken to get it down from 8 as mentioned in my previous email?

    What are your thoughts on the matter with tapering and a normal ESR level, whatever normal might be?.

    I will check out the calcium issue and request a bone scan also.

    Have been making a lot of bone broths of late, drinking at least 3 a day sometimes more - full of collagen and of course calcium from the bones.

    Thanks again - your insightfulness is a huge help.

  • Use the search box at the top right corner of this page and type in "dead slow and nearly stop reduction plan" and press return.

    That will bring up a list of posts where it is mentioned - the top one is the thread with that post.

    You can search for anything you like using that - can be quite fun ;-)

    Normal ESR - how long is a piece of string? I (and others) think your personal normal is the lowest reading you ever manage to get while on moderate dose pred (10mg or so) when you are well controlled and minimum aches and pains. If you are a person for whom ESR works it isn't a good idea to reduce again if it is raised - whatever reason it may be. If it is raised there is something going on somewhere that represents stress on the body. And keeping an eye on it means you might note a trend of it rising very slightly over months.

    It has only been a disadvantage to me - even when I couldn't move it was stubbornly in single figures so there couldn't be anything wrong I was told! It has reached the dizzy heights of 7.

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