DSNS tapering preds

[Ruthie64]

I'm trying to find more info on DSNS but can't for the life of me find anything on how to do it? I can see posts on people who have tried it or doing it but not in actually how to start. Can someone help please? Currently on 10mg preds with aim to get to 7.5mg but struggling.

[Kendrew]

healthunlocked.com/pmrgcauk...

this is the link.

[Ruthie64 in reply to Kendrew]

Thank you so much!

[DorsetLady PMRGCAuk volunteer]

Hope you are not trying to get from 10mg to 7.5mg in one move...any slow taper is good, but it's not magic bullet.... 1mg a time from now on....

here's another variation on the theme -

healthunlocked.com/pmrgcauk...

[Ruthie64 in reply to DorsetLady]

Oh gosh no! Even a 0.5 drop floors me. I'll do 0.5 or 1 to start off with. I've tried alternate day dosing and that didn't work. I'm also due to have cataract surgery, one in Dec and the other in Jan so not sure whether to wait til that's done to start the taper? I'm fairly stable on 10mg. I take 5 at 6am and 5 at 2pm. I dropped 0.5 yesterday afternoon and felt awful so had to updose 1mg last night. I do like the look of the variation plan.

[DorsetLady PMRGCAuk volunteer in reply to Ruthie64]

If in doubt, probably best not to taper...as for cataract surgery I had mine done when on 9mg..no issues. So good luck with yours.

[Ruthie64 in reply to DorsetLady]

I've just got down to 10 from 30 back in March when I had C for the 2nd time. I've got cushing symptoms and the cataracts have only appeared in last 6 months. My eye test in April was clear. So this was a bit of a shock for me. I'm desperate to get down to under 7.5. I've put on weight and don't recognise myself anymore. The preds also cover ulcerative colitis, osteoarthritis fibromyalgia and sai from long term steroids. So don't even know if I can get below 10mg 🤷🏼‍♀️ But I'll leave the taper perhaps til after the surgery as I am very anxious about it. Thank you 🙏🏻

[DorsetLady PMRGCAuk volunteer in reply to Ruthie64]

No need to be anxious -it’s very straightforward-and thousands done every year-although not to you I appreciate.

I was slightly apprehensive when mine was done -having already lost sight in one eye due to late diagnosis of GCA. But I thought well if I don’t take the risk of operation and leave the cataract I’m not going to be able to see anything anyway -so go for it!

So I did -and 3 months later was in New Zealand enjoying the spectacular views….😊

[Ruthie64 in reply to DorsetLady]

Yes I've heard good things about the surgery. Just want to see properly again. Currently doing a manicure and winging it as I can't see 😂 and I've not been able to pluck my eyebrows so hoping they've grown back lol. Thank you for your help.

[DorsetLady PMRGCAuk volunteer in reply to Ruthie64]

I had loads of fun early days after sight loss with manicures etc-think I’ve got it sussed now -although still a bit iffy at times, especially on toes in summer! Answer is smaller bottles with finer brushes ….

..there’s always a way 😉

[PMRpro Ambassador in reply to Ruthie64]

I've never been able to manage a manicure!!!

[PMRpro Ambassador in reply to Ruthie64]

If you haven't already - try cutting your carbs. It is possible to lose weight while still on pred, I lost 35lbs while still on between 10 and 15mg. How much you need to cut varies, Snazzy and I need to get very low, others only have to cut their processed carbs and added sugar and limit fruit. It does work, honestly!

dietdoctor.com/low-carb/foods

is a good start

[Ruthie64 in reply to PMRpro]

I do watch my carb intake. I currently eat approx 140-150g a day. Unfortunately due to my sai I can't go lower as it seems to lower my cortisol for some reason 🤷🏼‍♀️. I've tried many times this year. I have 1500-1600 calories a day and do pilates and yoga 3-4 times a week. It's the belly that gets me down. Just won't budge. I've been slim all my life til this year. I also can't eat fruit and veg due to a salicylate intolerance and my Ulcerative colitis so it's hard.

[PMRpro Ambassador in reply to Ruthie64]

Yes, did wonder about the UC. But by my standards - that is LOADS of carbs! I have to be way below 50g to maintain weight, 20g to lose.

[Ruthie64 in reply to PMRpro]

I would not survive on 50g carbs! Even at 135g I crashed. Apparently carbs are adrenals best friend so probably why. Good carbs obviously! Tbh I was eating up to 200g at one point. I didn't realise til I got an app. So 150 is good for me.

[PMRpro Ambassador in reply to Ruthie64]

Apparently many in the USA are eating 450-500g a day!!!!

I've never heard carbs are good for adrenal function - everything I have seen says processed carbs and sugar in particular are bad for adrenal function. One source says

What foods improve adrenal function?

Foods to eat

protein sources, like lean meats, fish, eggs, dairy, nuts, and legumes.

leafy greens and colorful vegetables.

whole grains.

relatively low-sugar fruits.

sea salt in moderation.

healthy fats like olive oil and avocado.

which fairly much reflects my diet though I rarely eat whole grains, I have allergic reactions to too much wheat.

[Ruthie64 in reply to PMRpro]

Of course processed carbs are bad. I don't touch them. I eat lots of organic meat, fish and eggs and brown rice. Sourdough bread too which helps keep my uc under control. As I said I can't go near fruit and veg (with the exception of peas) due to salicylate intolerance. Even olive oil and avocado (which I love) are a no no for me due to high salicylates so I'm limited with my diet. Makes it hard. I add Himalayan salt to everything even coffee!

[moonieboy9358 in reply to Ruthie64]

What is you opthamologist telling you regarding the steroids?

[Ruthie64 in reply to moonieboy9358]

Haven't seen them yet. Got my pre assessment on the 30th Nov.

[Maidmarrion66]

Please keep a food diary you might find what makes you worse and better.

[Ruthie64 in reply to Maidmarrion66]

I do. That's how I discovered my intolerance to salicylates. I also have a blood thinning disorder and can't have aspirin which is also salicylate based so made sense.

[Whatawonderfullife]

I have found that even though I have been strict with my diet, careful with my carbs, until I was able to reduce the pred down to quite a low dose, I lost some weight but it was very slow.

I too have always slim, very active and conscious of my diet, so when I piled on the pounds I was shocked. Since having GCA, taking pred and no diagnosed with fibromyalgia, I have become even more aware of what I eat but I couldn’t seem to function well with such a reduced diet. Having the 2 conditions restricts me to what I can eat. As a result, I’ve lost weight but I think it was also fluid retention. I am currently on 2.5mg of pred and the weight has finally starting to go. It’s not easy but it does work.

However I do feel the weight is a small price to pay.

[Ruthie64 in reply to Whatawonderfullife]

I hear you with the food restrictions. I'm still on 10mg desperate to get down but with cataract surgery coming up and a daughter with pots and constantly having to help her it's so hard. I lose a pound here and there and then it goes back on...

[Whatawonderfullife in reply to Ruthie64]

it’s not easy, so what you can and look after yourself. That’s the most important thing. As time goes on and the pred gradually lowers, you will find the rest eventually will become a little. It won’t all be easy and you will have ups and downs, we all do, but it the weight will drop. Good luck and these other lovely people know exactly what they’re talking about, they’re helping me with my journey too 🥰

[Ruthie64 in reply to Whatawonderfullife]

Thank you 🙏🏻

[Theziggy]

Been a low carb veggie for umpteen years, hasn't stopped me from being diabetic or having Palindromic Rheumatism either