Hi everyone. I have successfully got down to 7mg on the dead slow method, have been on it for over a week. The trouble is that I just can't stop crying and wondered if this is normal when you get on to the lower doses.
I have also been diagnosed by Xray and MRI with underlying Osteoporosis as I have got two Compression Fractures and severe Kyphosis and Scolliosis. I am having a Dexa Scan on Friday to confirm.
I don't know whether it is this,or the reduction in Steroids that is making me so miserable.
I would appreciate your opinions. Thank you.
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Attic
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You really do need to go to your doctor and discuss this. It certainly isn't a normal reaction to reducing pred - although you might feel quite down if your adrenal glands aren't beginning to wake up as you reduce you are still at what is regarded as a "physiological dose" so it shouldn't be too bad.
It is fairly likely that you are very upset at the latest diagnosis - but if you are in tears all the time that is a sign of clinical depression and needs to be attended to.
Osteoporosis doesn't mean that you are about to collapse in a heap so there really isn't any need to panic about it - there are ways of dealing with that too.
I hope I'm not sounding unsympathetic with my rather realistic approach - I was in the same place with a new quite scary diagnosis nearly 4 years ago and I spent nearly 6 months coming close to tears if someone looked at me never mind anything else so I really do know how you feel. It will be fine - and so will you.
Thank you and Dorset Lady for your replies. Sometimes I think it helps to talk to someone who has been through the same thing. I am sure I will get there in the end, as I am certainly not one to let things get me down. This is so unusual for me.
No wonder you are feeling low, there's a lot going on. But, as PMRpro says, most can be sorted. I would suspect some may be due to your adrenals not kicking in, I still feel very fatigued at times at 2.5 mg, but as I have no specific PMR GCA pains I just hope things will soon perk up.
This time of the year can be quite depressing for some people, and depression can be a side effect of Pred.
Think you need to make an appointment to talk things through with your doctor, you might find he is more sympathic than you think.
Speaking as a counsellor myself, I do think that sometimes it helps to talk to someone, a trustworthy stranger- my clients are often really surprised at how the mere act of talking in this way brings huge relief. Often we don't realise how much we are holding onto until we can unburden ourselves. I went back into therapy myself in May after 3 years of PMR and a recent diagnosis of Osteo arthritis in my knee, and I have found it really helpful to have that space to let go of all the pain and crap that PMR has brought to me.
Hi Suzy1959, I think you are right. I have sailed along merrily for years with one thing after another, starting off with a Spinal Fusion in 1996. I have had major Foot Surgery and my one foot is full of metal. Also had a failed Hip Replacement that has been operated on four times and still walk with a Stick. Following this I had a knee replacement. Other than that, I am ok lol!
Seriously though, I know it sounds pathetic, but I have been told not to do Housework or Ironing until the Dexa and they find out how bad things are. Consequently, I am starting to put on weight on top of the Pred weight gain and it seems to be the straw that broke the camels back, so to speak. Ridiculous really, when people have to go through far worse.
Golly - affirmation of not doing the housework and ironing? There's no wind that blows no-one any good!
Olive is right - the NOS has a wonderful helpline I'm told.
For the weight problem - try cutting carbs drastically. It has helped others and I lost a load of pred weight at a time I was on crutches and could barely manage the 200yds into the village.
Hi PMRpro, that made me laugh about not doing the housework. I am going to try cutting out Carbs I think. I do like toast in the morning . I suppose if I stop that to start with, that is seven pieces of a Toast a week, soon mounts up. I will also stop eating Potatoes. Could you make any other suggestions please.
Hi Attic. I got a scare with the pred and my blood sugar starting to climb. Used to have a big bowl of (organic whole grain) cereal for breakfast, and again as a bedtime snack, as well as the usual bits of carb through the day - bread, sometimes muffins or cookies. Since substituting nuts and seeds for the bowls of cereal and cutting back to things like Ryvita crackers and only occasional treats, I have discovered a rather disturbing side effect - I can no longer tolerate any quantity of refined grain product. With a baker in the family that makes me sad.
Try spelt or kamut flours - even swapping to ancient not-highly-commercialised grains can avoid a lot of gastric unpleasantness! They make lovely breads - less gluten so single rise techniques or sourdough work well.
The best sponge cake recipe I have ever made used just potato flour (Paradise cake from Anna del Conti I think) and buckwheat (not a wheat at all) cake is also glorious made well! Gluten-free blends work nearly as well as grain flours.
Obviously they all have carbs but for a special occasion are a lovely treat!
Thank you very much. Certainly worth a try. I can't understand why I have out on nearly 2 st on Pred as it doesn't make me hungry because I feel slightly nauseous all the time. It must be the Carbs. My GP said a lot of it is water, my ankles are enormous.
Hi Heron. Thank you for your reply. My sugar level is quite high since I went on a Pred too. Have you managed to lose any weight since cutting out Cereals.
ATTIC Well, actually I had lost so much weight before diagnosis I was verging on emaciated. In the seven months since I started pred I have put on about five pounds, most of it in the last two months. I had lost about fifteen pounds from my normal weight. Nowadays I get a packaged product called Qia which contains chia seeds, hemp seeds and buckwheat. Together with a few dried cranberries and milk this makes a lovely bedtime snack, although the chia seeds do get stuck in the teeth. For breakfast I now have a third of a cup of pumpkin seeds (iron rich) a couple of eggs, usually a clemi or orange and of course the requisite cup of tea with milk!
I think the weight I have regained has come about in the last few weeks with the shorter days and not getting as much exercise.
PMRPRO Thanks for the reminder about alternatives to wheat. Perhaps I'll supply my baker daughter in law with some recipes. She does do some gluten-free baking, but I'll have to make sure she is not also using artificial sweetener.
Did you know it is reckoned you can cut the sugar in many baking recipes by at least a third without the flavour suffering? You have to experiment a bit to find how low you can go. But let's face it - you don't have to eat cake every day! I buy a slice from the village baker once in a while and cut the normal slice into 3, eat one, keep one for the next day and freeze one. When I buy a kamut roll I only eat 1/2 with almost as much filling as roll - not unusual to see me with 1/2 a roll with an inch of tightly packed lettuce and a big thick wedge of cheese or meat in it! I have the taste and it is really satisfying.
We only eat cake on birthdays and at Christmas. We have a constant supply of scones and shortbread, unfortunately, and now my son has started doing lots of gourmet meals and some of them involve little pastries. Personally I don't bake so without that familial temptation there'd be no problem!
I was going to say I can't remember when I last had a birthday cake but I had one last year! We were at my daughter's and her daughter wanted to make each of us a cake (our birthdays are 4 days apart) - so gluten-free flour was bought and she made a victoria sandwich with strawberries and cream filling! For a 15-year-old she's a tidy little baker (though the kitchen post-baking session was definitely NOT tidy! I gather she makes loads of cupcakes - which have become such a cult in the UK.
Keep away from packaged baked goods altogether. If you make your own you know what's in there! Manufactured products have vast amounts of HFCS (high fructose corn syrup) in them even where we wouldn't use sugar. Why? Because it lengthens the shelf life a LOT! And supposedly "improves" the flavour and consistency. If they say so!
Potatoes - and other root veg tend to have carbs too so eat small portions. Same with fruit. Eat all you like of salad leaves and most veggies grown above ground.
If you eat yoghurt, buy plain organic and add your own berries to flavour it. If you struggle with plain yogs - try Greek yoghurt, a totally different flavour and texture really, more like cream. And don't worry about looking for fat-free - they are low-fat naturally and fat helps fill you up.
I found the Atkins and other low carb diet sites have all sorts of suggestions - the new version of Atkins is far better as it includes veggies right from the start - and the recipe ideas are really helpful I think.
Good snacks to keep in the fridge include cucumber sticks and other crudites - carrots in moderation, cherry toms in moderation, bell peppers and so on. Cheese isn't forbidden either! I just googled low carb snacks and got a whole range of ideas - at first sight it is quite strange but you get used to the idea of eating a stick of cheese or a rolled slice of turkey breast as a snack instead of a piece of cake.
You'll probably miss sweet things at first - but you soon get used to the change and will soon find that "normal" snacks seem very sweet and sickly.
Contents of my "package" - chia, hemp, buckwheat. Organic. Worth the convenience. We've been consuming only organic cereals (can't vouch for the breads) since GMOs became so ubiquitous. It seems to be the refined products that make me burp and feel uncomfortable, and that never happened before. Perhaps it's like giving up meat, the gut microbiome adapts and you lose the ability to digest some things, while learning to digest others (like beans)! Recently fell in love with kefir, a great alternative to yoghurt, and that is also available here in an organically produced version. ATTIC may feel differently, but I confess that I've never felt satisfied by veggie sticks as a snack. Apples are an exception. A little chunk of cheddar does, however, fit the bill. And yesterday evening we had the delicious pleasure of redskin potatoes dotted with ghee and a little green onion with our meal.
I find a thin slice of cheese wrapped around a stick of cucumber gives the crunchy bite sensation that is so satisfying. Or cucumber/carrot sticks with hummus instead of breadsticks. At lunchtime today I had the 1/2 kamut roll I described - followed by a whole peeled carrot. Which takes a while to crunch through...
I was very much in your place just before Christmas , got advice on here went to osteoporosis website had a good read then called helpline had a good natter felt a lot better click on my name and you will see
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We've been consuming only organic cereals (can't vouch for the breads) since GMOs became so ubiquitous. It seems to be the refined products that make me burp and feel uncomfortable, and that never happened before. Perhaps it's like giving up meat, the gut microbiome adapts and you lose the ability to digest some things, while learning to digest others (like beans)! Recently fell in love with kefir, a great alternative to yoghurt, and that is also available here in an organically produced version. ATTIC may feel differently, but I confess that I've never felt satisfied by veggie sticks as a snack. Apples are an exception. A little chunk of cheddar does, however, fit the bill. And yesterday evening we had the delicious pleasure of redskin potatoes dotted with ghee and a little green onion with our meal.
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