Update on dosage/diet having seen Rheumatologist

[Sufferinginsilence]

Hi everyone, saw my rheumy again last night and told him I had increased back up to 12.5mg because of the pain when I dropped to 10mg. He agreed that it was the right thing to do but was very careful to point out that it takes 7-10 days for your body to adjust to the new dose and not to jump too quickly to go back to the higher dose? Anyway, he has now agreed I should stay on the 12.5 for 4 weeks and try to drop down to 10mg again at that point and then he wants me to drop down by 1mg every four weeks until I see him again in four months (by which stage I will hopefully be at 8mg). I told him I was very depressed about the weight gain but he really didn't care, said it would come off again when I got below 7mg (here's hoping!!). I told him I had started on a low carb diet in an effort to do something about it and his opinion was that calorie counting was the way to go (even though I told him I had been trying to do that and my weight was down one week and up again the next).

As for the OA in my neck and lower spine diagnosed after he ordered x-rays, his advice was to go to see a physio to get exercises to keep those areas mobile to avoid it worsening. I can barely turn my head to either side which makes driving really dodgy so I hope those exercises work miracles!

Thank goodness for this site and all your knowledge, because I probably wouldn't have increased my dose without your guidance so I would still be in agony and I wouldn't have started cutting down on carbs to try to do something about my weight. Thank you all for listening. x

[DorsetLady PMRGCAuk volunteer]

You might like to read this post - discusses flare versus steroid withdrawal -healthunlocked.com/pmrgcauk...

Try what he suggests, just just be aware that not everyone can achieve a 2.5mg reduction from 15-12.5-10mg - so , if necessary, do think about a smaller drop. Plus once below 10mg you might find 1mg per 4 weeks a bit difficult…guidelines do say reduce 1mg every 4 to 8 weeks depending on individual circumstances.

[Sufferinginsilence in reply to DorsetLady]

Thank you Dorset Lady - the drips into the bucket analogy makes sense! I will see how I go, starting to feel better back on the 12.5 but will drop down very carefully, don't want to go back to how I was feeling before.

[DorsetLady PMRGCAuk volunteer in reply to Sufferinginsilence]

Good - listen to your body- do not be bullied by the calendar!

[PMRpro Ambassador]

Ah well - that's where he is wrong!!!! Being on pred is a different matter and low calorie/low fat often means you are so hungry because of the pred that you just give up. The artificial sweetners used in low calorie also confuse the body - it expects a big surge of glucose when it senses the initial intense sweetness of artificial sweetners and insulin is pumped out to deal with that. It doesn't come to use up the insulin so the blood sugar level plummets and you crave food to bring it back up. That just creates a roller coaster and a confused body?

Even if you do do the 2.5mg drop to 10mg, really do consider using one of the slow tapers we talk about as that minimises the steroid-withdrawal effects. Steroid withdrawal usually starts as soon as you reduce the dose and can be very similar to PMR returning but it tends to improve over a week or so whereas PMR slowly gets worse.

[Sufferinginsilence in reply to PMRpro]

Thank you for explaining that, PMRpro. I will search and print off the slow taper info and try that. 👍

[PMRpro Ambassador in reply to Sufferinginsilence]

healthunlocked.com/pmrgcauk...

[Koalajane]

The low carb diet really worked for me as I lost over 3 stones in weight and cut my blood sugars

[Sufferinginsilence in reply to Koalajane]

Ooh, brilliant Koalajane. I started on Tuesday past and so far, so good although not bring strict enough at the moment, I don't think. Had a small portion of rice with dinner last night but that's the first white carbs I've had. And have had toast on a few mornings but definitely much, much less carbs than I ever would have had. Feeling great, though.

[MrsNails in reply to Sufferinginsilence]

Sufferinginsilence

That’s actually the best way, start easy & build up, l too have a little rice, no pasta (afraid l had enough of that during Chemo) l do miss a Roast Potato on a Sunday but have Cauliflower Cheese to cheer me up 😉 And, Toast - the weakness of many!....

On the Pre Diabetes Course l went on they said go slowly, don’t beat yourself up if you slip up but try & make the toast every other day, then push it to the weekend & then just one day a week!

My weakness was/is Sugar in My Tea - l Cannot Give It Up - so l drunk a cup rather than a mug - same taste just less sugar!

A Sandwich was my go to lunch but it’s easier in the Summer to have a Salad. You can read my story in FAQ l lost 2stone but it was the fear of Steroid Induced Type2 Diabetes that spurred me on!

Good Luck 🍀

MrsN

[Koalajane in reply to MrsNails]

I have to say that I am very lucky to enjoy salads as I eat them a lot of the time. My other favourite meal is salmon with cauliflower cheese!

[PMRpro Ambassador in reply to Koalajane]

Snap - I think I should be far greener! Salad leaves, broccoli cheese - but preferably not with the salmon ...