Cannot Seem to Taper At All

[schmuppy]

For many months my GP had me on 10mg of pred, and it was not enough. When I developed troncheric bursitis, I went up to 15mg and that took care of it, although we are never completely and utterly pain free my pain was back to manageable at that level.

I tried tapering recently from 15mg to 14, and then to 13, and the result was not good at all. I felt worse almost immediately, and went back up to 15 to feel better.

Lately I've got this thing where my legs feel heavy - as if my circulation in my legs overall is compromised somehow. Is this just another surprise that PMR has come up with for me? I was obese before, but have gained even more weight since this nasty adventure began 20 months ago. Going up the (small) hill to my apartment at the end of the day is becoming more than annoying.

Has anyone else had this "heavy leg" kind of thing?

[SnazzyD]

Hello. If these feelings come on almost immediately, it sounds to me like withdrawal and that can make one feel pretty rough. How quickly did you go down those 1mg steps?

What dietary adjustments have you made since being on Pred?

[schmuppy in reply to SnazzyD]

I was on the 14 mg for around two weeks and seemed just a bit less well, so went down to 13 and started hobbling again, etc. and feeling really crappy, so went back up expecting that all would be well and back to normal - but it's not completely a-OK at 15 now again either.

As for the diet, I started this journey with no medication trying to do Clint Paddison and lost a ton of weight - but couldn't eat anything good. Stayed away from dairy, and then didn't. Then went on binges because the pred made me crave sugar. It's always been hard for me to lose weight, but now I've just sort of given up I guess.

[SusyTe in reply to schmuppy]

Hi Schmuppy. My rheumy recommends four to six weeks on any new dose before even attempting to taper, so two weeks would not be long enough, I should think.

Personally I would stick on 15 mg until I felt ready and able to taper, then do so very slowly, with four to six weeks in between in each drop and never more than 10% of the original dose at a time. I have been on Pred for 2.5 years now - highest dose was 20 mg, and I am now on 5.5 mg. Have a look at the Dead Slow Nearly Stop (DSNS) method - slow and steady is the way to go.

Re the heavy legs - yes, I used to have that - they felt like a dead weight and it was hard just putting one step in front of the other, particularly uphill.

I have had bursitis in my right hip and also in my left shoulder. In both cases my rheumy gave me an injection into them which was painful but eased it after a few days.

With regard to weight gain, my rheumy told me to go low sugar and low carb as Pred changes the way our bodies metabolise them. I also do Time Restricted Eating (16:8) which has helped enormously.

I hope you feel a bit better very soon. ❤️ Xx

[SnazzyD in reply to schmuppy]

I don’t know Clint Paddison, but those of us who lose or don’t gain do it by not worrying about fats (plant based mostly) but severely cutting out all carbs like sugar, potato, maize, rice, pasta and basically anything made of flours. It helps stop the craving by preventing the large swings of blood sugar that are fuelled by Pred. The odd treat once a week is usually ok but it has to be modest. I liked it because when I was on high doses of a Pred that made me ravenous I could stuff my face as long as it was protein or veg. I did some fruit especially berries and had a very modest amount of root veg. I had a couple of squares 85% cocoa choc a day and 2 small glasses of wine a week.

[PMRpro Ambassador in reply to SnazzyD]

sciencebasedmedicine.org/th...

Thought you might be interested in this

[Hidden in reply to schmuppy]

I don't understand why you reduced when you felt unwell. Had you stayed at 14mg for a few weeks you MAY not have had to increase. I always waited a minimum of a month, sometimes 6weeks if I was stressed mentally or physically.

[SnazzyD]

What I forgot to say was that there was no way I tapered a whole 1mg every two weeks if only because I’d be in a continuous state of withdrawal. I did 0.5mg every 2 weeks until I got to 10mg then it was 0.5mg every 6-8weeks. Some may say that was still on the quick side.

[Riversnan]

Hi schmuppy

I have been on pred for 3 years and still struggling to get down past 4.5. Like you if I am too low a does I feel my legs are like a tree trunk and very inflexible.

I find it happens mostly when I walk up hills or bending as I am a photographer and constantly up and down.

I am of average weight a large size12. So it's not weight with me.

Mind you I push it constantly and won't change my lifestyle but I pay for it as I have to have short periods of doing very little to compensate.

This may not be the same as you but just to let you know there are people out there who can relate to you.

its horrible for you to feel so bad, lots of luck getting some help on this Great site with very helpful knowledgable people.

[PMRpro Ambassador]

Concrete legs is a common complaint I'm afraid. Not sure if it is circulation - which would be more likely to show up as claudication when you are walking - or just unhappy muscles due to a combination of the pred and the PMR.

Have you tried cutting carbs drastically to try to deal with the weight problem? It really does work for many of us. By cutting sugar and simple carbs it also often has a beneficial effect on the inflammation - which for some leads to being able to get to lower doses of pred. It took me over 4 years to get reliably below 10mg.

You were messed about at the start - it is a waste of time using too low a dose - and reducing every 2 weeks is just asking for trouble. It has been said for some years that a reduction rate of more than 1mg per month is predictive of flares and you've been trying 2mg and also when it was clear you weren't stable at the current dose. For some people each step must be as small as possible AND spread over more than just a switch from every day one dose to every day new dose. PMR is not the same as other illnesses where pred is used and tapered off.

Otherwise Snazzy has covered everything else I would say.

This is a link to one of the slow taper approaches a lot of people have had success with:

healthunlocked.com/pmrgcauk...

[Dobermanlover]

Definitely the low carb diet worked for me, no bread, cakes, biscuits, rice etc. I didn't cut out fruit. I lost 10 kg in just under a year, then I seemed to stick at that for a while, I think to lose more I will have to cut out the natural sugars, but that will be harder! But do try cutting out, very hard at first, but very worth while, all the best.

[sennetta]

Have a look at The Obesity Code by Jason Fung and his companion volume The Diabetes Code. Start to get your head around the idea that being obese may well not be your fault and is a symptom triggered by being drip/force fed misinformation by the medical establishment, the food manufacturers and the govenment for decades.

[Theziggy]

No carb/low carb does what it says on the tin. It works.!!!

[schmuppy]

Thank you all - I knew asking this forum would lead me to the right answer - I was hoping it was just another crummy symptom of PRM and not morphing into some other dreaded horror, and that's what it sounds like it is. I'm going to continue to take my meds at the current level, supplementing with ibuprofen and acetominephen when I need to.

As for the carbs, I know low carb works, but it's horrific if you're home in NYC and that little voice in your pred head is telling you that you are a smartphone click away from having sushi delivered. Have to cope with that as best I can I guess.

Have a great weekend everybody! OXOXO