I have a working diagnosis of Vasculitis with a probability of Behcets or possibly even Neuro Behcets. My main drug at the moment is Imuran but I'm also on high dose prednisolone for recurrent Bell's Palsy (five times so far since the end of January). Every time I'm taken off Pred for about a week the Bell's Palsy comes back and I'm re-started on it. I'm on 50Mg (10 tabs) a day which seems quite hight. Also my consultant doesn't taper me from this drug, I just take 50Mg one day and then none the next day. Does anybody else do this? Has anyone any idea why he would do it this way?
Also is there anything you can do about the dreaded weight gain. I had been working very hard to loose my baby weight and was doing very well but every time I get the weight off I'm put back on pred and it all goes straight back on. I'm trying to eat healthily and not overeat even though my body is crying out for all the bold foods but the weight is still piling back on. I put on 4lb in the first two days of this course even though I was fasting for the second day for a colonoscopy. I have a wedding coming up next month and really need to fit into a dress I already own. I really don't want to look like a blimp especially when I already have a lobsided and considerably rounder face then usual. I know in the grand scheme of things these are minor issues but today it's getting me down.
Any tips?
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mandyf
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Hi Mandy. "Every time you are taken off Prednisolone ........". What dose are you on when you are taken off? If you've been on Pred for a long time the only way is to come down very slowly.
Have you asked why he says 50mg one day and none the next? When I tapered I might have done, say, 12mg today, 11mg tomorrow, back to 12 and so on for a week then dropped to 11mg for a while, then 11mg, 10mg, 11mg. I've never had a regime where I don't take any one day and a lot another. I'd ask because he must have a reason.
Weight gain and the moon face go hand in hand with Pred and it is very difficult to not put weight on and then to get rid of those unwanted pounds/stones whilst on higher doses. The tabs make us hungry so we eat and what we want to eat is stuff which isn't good for us. It won't help for the wedding but once you are properly controlled and the Pred is reduced the face and the weight will start to go, although you do have to work at it.
I agree with the principle of "in the grand scheme of things these are minor issuies" unfortunately we are in the here and now and it is important and it is upsetting and it is stressful and it isn't good for our self esteem. Take care.
I am not on pred now but was on it for a few months, I was told by my GP's that if I was on pred for anything over 14 days that I would have to be gradually weaned off the preds, which I eventually did under their supervsion, I would also add that my dosage was about the same as you are on. I would deefinitely ask why you are to suddenly stop taking it? and would give the consultant a call or ask my GP, there may be a reason for it but you won't have a definitive answer unless you ask the question.
As to the weight gain, I put on over a stone in just over a month as I craved sugars and carbs when taking ped and gave in to the cravings, but got it stabalised by buying all the fruits that I love but are expensive i.e. nectarines, melons, plums, apricots and pineapples and I nibbled on these all day long. as well as almonds and nuts and raisins. I'm not a person who likes to gnaw on rabbit food, raw carrots and salad!
When I really needed a chocolate or cake fix then I dipped strawberried or fruit in melted dark choc and sucked it off the fruit before eating the fruit. I cut out any white foods, or ate very little of them, so even now I only eat brown bread, brown rice and wholewheat pasta, I use unrefined sugar, ate no biscuits unless wholewheat, and ate cheese and wholewheat crackers when I had a craving for carbs.
I allowed myself a couple of cubes of dark chocolate a day and often even sucked these so that it lasted longer. I had already cut out caffeine drinks but also cut out fizzy drinks and cordials and found natural fruit juices that I liked - there are some fabulous ones out there, but do be aware some meds react to fruit juices so take care.
I am a foody and had been trying to lose weight before I was taken ill (having lost 3 stone with alot of effort) so to put so much weight on was devastating but I stabalised and even started to gradually lose a few pounds before being weaned off.
It took and is taking a great deal of self control and determination and some days are better than others but I don't get down if I have a bad day by having a sweet and carb fest day, but think 'ah well it was a treat'
I have alot of coping strategies such as not buying in too much food, making my own cakes - if I'm busy I can't nibble and I can use healthy alternatives - and I even started knitting again in the evenings to keep my hands occupied.
I have now lost almost all the weight I gained but acknowledge that I may have to go back on steroids and don't relish the fight to keep the weight down. It is sadly a horrible side effect of keeping us well and active enough to enjoy life.
As to the wedding it's amazing what a new hairstyle or hat can disguise too! I hope all goes well and relax amd enjoy the day.
Thanks for the answers. I'm trying to be good but it's so hard. I'm already on a gluten free diet (about 15 years now) to try to control my bowel symptoms which may actually be caused by the vasculitis and unfortunately I've been off all fruit as it seems to give me migraines but again it could be the vasculitis causing it. I must try the fruit again but I'm afraid of feeling even worse!
I have asked about tapering the pred but my consultant just says not to do it with no reason why. My GP isn't happy with it either and queried it with him too but got no answer other then not to taper. I have been on 50mg per day for about a week or two then a week with none, then the Bell's Palsy comes back so it's back onto 50Mg.
I'm mad into the crunch of biscuits so I've been making gluten free oat biscuit bars with pecans. There's only 3oz of brown sugar and 2 tablespoons of honey with no butter (just a little rapeseed oil) in about 10 to 12 bars. They are helping get the sugar fix but I'm finding it hard to stop at one. I'm a very emotional eater anyway and I guess because I'm so frustrated with the disease that I'm giving in to every craving. Hopefully I'll start to feel a little better so can get out for a walk or something to distract me. It's so frustrating to spend ages loosing the weight for it to go back on in a matter of days.
AllyGY2013 - I'm definately going to get my hair done on the big day even though I'm so broke it's not even funny. I'm avoiding looking at my credit card bill as all of my medical excesses are going on it. I've been off sick fulltime since March and have been signed off for the next 6 months - I feel like I'm back on maternity leave!
Has anybody else come off pred from high doses with no taper? If so what was the reason given. If I could understand the reasoning I think I'd be happier. Unfortunately this case of Bell's Palsy seems to be taking longer to go then the last four. I really hope that it doesn't mean there's permenant damage done to the nerve. I'm having an indepth CAT scan of my boney canal on Friday to check if it's very narrow so hopefully we'll know more then.
I know the feeling I finally returned to work in September but only work 10 hours a week and my credit cards are all maxed out!
I was told to try fruit, with organic, plain, probiotic yoghurt either with or before the fruit and also suggested adding oats to cooked fruits and eat that after or with the same type of yoghurt - that's what my GP suggested to me when I was having trouble eating and keeping food in my system for any length of time this time last year. I also cut out salt in my diet but ate a packet of crisps a day to ensure I got salt in my diet, this helped with carb and crunch! It and worked for me. I get migraines which I thought were triggered by dairy so I cut that out of my diet years ago, but have now reintroduced dairy and have had only a couple of migraines, no more that when off dairy so maybe it wasn't the trigger, or . . . who knows?
I haven't been able to walk even short distances because I got too breathless and tired but the office I work in is on a hill and up 2 flights of stairs (no lift), I took it slow to get to the top at first and had to rest several times on the way up - my boss is amazingly understanding - 9 months on and I am now able to walk up relatively easily and have started to walk alot more, The warmer weather helps too because it cheers me up and makes me want to go out more, even if just to potter in my garden, or sit and watch the birds and world go by.
I too am an emotional eater, when I get depressed you'll find me with my head in the kitchen cupboards not the oven! Get angry and/or stressed and I go off my food entirely.
If you come up with any ideas let me know, I'd love to have some extra ideas for my arsenal against weight. - Or any ideas on getting rich quick would be good too!
Weight gain and preds seem to go hand in hand, but you can fix it. Re dose: Strong therapeutic dose is usually around 1/2 a mg per kg body weight as far as I know. Some docs prescribe alternate days dosing eg 50 mg one day none the next so it averages out 25 mg per day over a period of time - I don't think though it's that what you do? I think you are doing what's called a 'pulse' of preds to damp down the inflammation in your cranial nerves, one week on then stop should be OK as it means the cumulative preds intake is lower than with the slower taper. HOWEVER Shouldnt be stopping them suddenly IF you've been on them for a length of time, as put by Ally above. And I suppose lots of short 'pulses' makes up one long course?
Re weight gain... I put a stone on with the preds myself (similar daily dose to yours), then found out that it's actually carbs put your weight on, not saturated fats, contrary to what I'd been told for years by the makers of Flora who are trying to look after our health in their kindly way of course, not out to make lots of profit by selling us stuff we don't need. Makes no difference if it's white flour, potato flour, wholemeal flour, rice flour... it does the same thing. You've maybe been eating gluten free (good idea) but replacing the gluten with sugars or refined carbs (not so good)- they bump up your blood sugar right away and this is put away in the fat cells by your body in order to try and bring the circulating blood sugar back down. Then the drop in blood sugar makes you feel sooo hungry again really quickly and you're hitting the snacks before the morning is out. Steroids exacerbate this (the dreaded steroid munchies) Also, I steer clear of large amounts of fruit (but still eat the odd satsuma, pear, apple etc, strawberries with cream - no more than 1 portion a day), all honey, all sweetened drinks, all fruit juice - fructose in it makes your blood sugar go up plus it affects your appetite hormones so you don't know when you're full. Get my vits and mins from vegetables. I've lost a stone now! - by staying off large amounts of carbs, and keeping wheat completely off the menu apart from the slice of toast in the morning. Full fat unhomogenised milk seems good, butter yes, cook with lard, butter or coconut oil or olive oil, other veg fats a complete no-no (due to inflammation-promoting effect of the arachidonic acid in them, bad for us vasculitis sufferers) and the heart disease link with veg fats especially the ones high in omega 6; sugar is NOOoooo (its half glucose, OK, but half fructose - bad) Crisps Noooo (god it's hard) but they 'up' your blood sugar and they have veg oil in. I don't follow the Atkins diet though which is no carbs at all and seems a bit extreme to me!
Porridge for breakfast (no extra sugars on it, just a bit of ...butter) now keeps my energy levels up till the afternoon, along with one small slice of toasted sourdough bread with butter 'n marmite on; if I eat a wheat- or corn-based breakfast cereal, I'm hungry by 9.30 a.m. That's the difference. Exercise doesn't make one jot of difference despite 'lack of exercise' being used to blame overweight people for their condition (grr) it's hard for many vasc sufferers anyway - and I think you may find it's WHAT you eat, NOT how much you eat, that's the key to it. Works for me without calorie counting. Been eating strwaberries and cream a fair bit lately and weight still exactly 12 stones (I'm 6 foot tall) We're just mammals after all and other mammals stay the right weight for them without learning to use a calorie scale or going to weight watchers. Unless their owner feeds them human sweeties...
It comes down to eating what your great-great grandparents used to eat. Hard to get used to though but worth it. Supermarket processed foods have a lot to answer for.
Although I find your postings very interesting and informative, because you never put in separate paragraphs it makes it VERY difficult to read. As a consequence I just get lost as to where I am in your long posting .. and so just stop reading .. which is bad news for all your readers
So all you need to do is use the Enter key to separate it into readable chunks.
sorry - you're absolutely right, looking at it again, I should have put spaces between the paragraphs, it IS a big block of prose. I won't do it again!
Also got a wedding coming up, (my niece), and am also really concerned about the same things as you. At the moment I'm leaving things to the last moment....but the weight is just not shifting, so will have to try the sales eventually. I eat on roughly the same pattern as Rob, and no more is going on, but its not coming off either!
One consultant also suggested the knitting - not just to stop me nibbling, but also to help with my numb arms and pins and needles. There is a wonderful website -garnstudio.com- with a host of free patterns, how-to videos etc, which is really worth exploring.
I've also found that carrying a camera can keep me out of the photographs, or allow me to hide at the back!
I do hope you get into your dress and have a wonderful day.
Thank you AllyG so much for the dietary hints for losing weight induced by high preds The suggestions you make will go a long way to helping my husband enjoys his food. This is such a touchy subject in our household but hi weight continues to rise well above any weight he has ever been and the "midnight munches" though less than before still means the biscuit tin has been raided. I so long to see his "old" face
Yes, this Does sound, rather a 'Strange' way of doing 'Things'. I don't know your exact Case, or your history, so they May Well be a good reason for this 'Taper'.
As regards 'Weight Gain', my advice probably ISN'T the 'best' here. I just gained weight- there are, far more Important issues- than weight! You WILL look, absolutely Lovely- on your Wedding Day, without any doubt. You ARE going, to have, a Wonderful Wedding to a Lovely Man.....Who WILL accept you, for what you are- 'Tubby, or not'. Bluntly put...Would you rather be Thin, and VERY ill, or Somewhat Rounder, and Much Healthier? Is there even a choice?
Concentrate on the IMPORTANT thing(s) here....Your Wedding, to your Gorgeous Husband. The Man you will spend, the rest of, your Life with....NOT your Weight! I may, very well, not be a great Role Model- I'm F..king HUGE- but, I DO know, that your Happiness is a priority. Surely better to be Tubby/ Cuddly (not so bad!) than so unwell.
Whatever you decide Mandy, my Prayers are with you.
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Recently diagnosed with ANCA Vasculitis.
Prednisolone reducing and Adrenal insufficiency 
...and if Methotrexate doesn't do anything useful??
