Hi all it's me again the whinging confused one lol
So after having a slight episode of the 'black dog' this morning after my long awaited follow up Rhumey appointment for today was cancelled, I have decided to take the bull by the horns, give myself a kick up the bum and stop the woe is me attitude I seem to have fallen into.
Having finally come to the realisation that I am more than likely to be kept on the Pred as the only course of treatment and nothing else will really change, the rest is up to me.
I am going to try and help myself heal from the inside out.
Just so you can understand why my friends/family were pushing for me to go back to Mr Hughes, it's due to the pretty dramatic change in me from the GP's scattergun approach of treating me with different Pred doses and the fact that he wanted me off the 'toxic dose' I was on as this was seen as a genius move. They were scared of the fact I looked so poorly so anyone that was going to take this medication away was going to be a hero! Admittedly the last pic was just as I was starting to taper the high dose but it seemed to make things much worse at first. So with all the information gleaned from this wonderful
Forum I am determined to take charge of my health once and for all!
Wish me luck...goodbye chocolate old friend ;0)
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Trixiechamp
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I eat low carb - very low carb if I want to actually lose weight rather than maintain it. I allow myself a square of very high cocoa solids (70% and above, higher the better if you can manage although it is an acquired taste for some). You can't eat much - and after about 6 weeks your tastes do change and you don't miss the sugar.
Thank you, I did Atkins years ago as I have PCOS and lost a stone in 6 weeks, obviously not expecting that much as quickly but I know it can be done! X
It was trying Atkins to lose weight that I discovered I'm allergic to wheat! I didn't lose much weight then but it worked much better to get rid of pred weight.
I had a really itchy rash - and eventually I realised it went away when I was Atkinsing and returned after we had been over here in holiday - eating pasta and pizza! I experimented at home - and yes, definitely when I ate things made with wheat. No wheat, no rash! They are more civilised here now - you often find pizza made of spelt or kamut which are fine.
We are getting better with the wheat and gluten free options here too, a lot of restaurants cater now. It seems to be more and more people are having issues with wheat, gluten and loads near where I live also have allergies to apples, cherries, potatoes and silver birch trees (my son included!).
What annoys me is the new labelling is too broad - and restaurants who don't think: take, say, an Indian dish contains gluten because they serve it with a nan bread. Take the nan out and it is probably gluten-free - but they don't know the individual ingredients.
The good thing about the low carb diet is that I can satisfy my Pred snack attack cravings by stuffing my face, but with veggies. Not all raw though; too much chewing and my gut started to protest. Anything properly sweet is now almost unbearable. Once that kicks in chocolate just doesn't do it in the same way, though the piece of high cocoa choccy is rather good.
I have also had to say goodbye to the chocolate, and everything else that cheers. I love your sassy new attitude and wish you all the luck in the world!
I had a bad case if whooping cough as a kid. When I was on the mend I was out playing with some friends. Had a chocolate bar and proceeded to have an intense whooping cough attack that ended in my throwing up chocolate all over the sidewalk as my friends looked on. I was about 7 or so. Couldn't face chocolate for ten years after that.
To this day, almost 70 years later, chocolate doesn't claim me. I eat it and can get into a daily habit, but it doesn't take hold. I always considered that s bit of luck.
Going low carb no sugar when I started Pred last December has led to a forty pound swing. Instead of gain in 20 pounds I lost 20+ pounds. I now weigh what I weighed at age 22. I can tell when I've lapsed. My body doesn't like the way I used to eat anymore.
My problem has been the combo of Pred muscle wasting and weight loss. I was feeling weak, and loosely linked together. I'm fighting back on that front now. New exercises to rebuild arms and thigh muscles and core in addition to more discipline around the Qigong. It feels better already. Fewer aches, pains and better coordination. Only 2+ weeks. Praying for discipline!
Also, taper from 14 to 13 at .5 a week has been easiest. I start 12.5 tomorrow. Could the exercise be helping the taper?
Feeling determined and hopeful. Please remind that I feel this way today the next time I rant or whine.
Hi Trixiechamp ..So Sorry you had your appointment with Dr Hughes cancelled yesterday, That must have been so frustrating and l hope it's not too long before you get a new appointment. I have been with Dr Hughes for about 3years now and will Always put my trust in him. I hate what the Prednisolone has done to me over 13years but there has been better moments . At the present time I have a Lovely Lady GP who is trying to get me below 14.05mg stumbling Block but at present l am on 15.05. ..My latest Blood tests show that I still have Refractory PMR , l class myself lucky on that PMR has shown up because it doesn't usually, but I also have Cellulitus around my Body and Lymphodema in my legs that keep flaring when l decrease on the steroid . Dr Hughes put me on Antibiotics in April this year and l was kept on them until now but My VitD is very low since my last Blood tests .l have been put on strong strength VitD3for 12 weeks. The main thing is my Liver is ok and so is my calcium..so what I'm trying to say is l think that although l will Always fight to get lower on the steroid l think that at 71 years old ,My Quality of Life is the issue. As for My Family and Friends and Partner at times they have no idea what goes on in my mind or how l feel inwardly ..They never have time to read the posts on this Forum just to learn that it is Not just Me that suffers with PMR related problems. Never mind l will continue to put my trust in my Bowen Therapist and New GP and Dr Hughes of course. Good Luck with coping with your condition and getting further forward .. trish 29
Hi Trish, this appointment was a follow up with the other consultant after having a gazillion tests etc to finally confirm PMR/GCA as best as you can do, so disappointing but only briefly.
Have learned not to place such an emphasis on these appointments and hoping it will spur me on with my quest to lose the weight and generally feel healthier x x thanks for your message and I hope you continue to improve your quality of life x
Thank you Trixiechamp for your Good Wishes ..l hope you get your results soon ..l feel with this new GP on my side that maybe there is a step forward for me ..trishx
All the best to you on your chocolate- less journey!! Always felt that my eating was the only thing I had any control over!! - nothing else. Have stuck to a low carb diet and like others really don't like anything sweet anymore as taste buds do change and it does help to stop the weight piling on. Never too late to have a go! Do let us know how you get on. X
Hi Trixiechamp I have took charge of my Pred weight by cutting calories. I didn't do this by my own violation. My husband is the fat controller in our house. He now shops and decides what I can eat. I am loosing 1/2 to 1lb a week. That's what I put on in the beginning after loosing almost a stone before being diagnosed with PMR. Then I added another 2 stone in comfort eating but increased appetite from Pred. On 6mg Pred now won't up it to combat the pain till I loose enough for my hip replacement op. I am immobile, can't move or exercise and all TV has on it is cooking programmes and food adverts. I crave sugar and lard in Pie form cake or processed food etc. However after 20 weeks and 1 stone loss I know it's all in the mind and feel much better not being a slave to carbs and refined sugar. Or booze. That was a big one a glass of ice cold beer or wine in a hot day. 😉 Good luck.
Aww bless you, thank you that made me a bit teary...in a good way!! Yes I have a fantastic man and he's been so supportive x x I am determined not to lose myself, I've been hiding away now for too many months x
Good luck on your new life. I sincerely hope you find the success and relief that you deserve. I wish I had your resolve. My therapist suggested that instead of going all gung ho, that I change just one thing about my eating habits at a time.
Thank you, so do I as my resolve has been rubbish the last few months. I think that realising I might have Cushing's syndrome has scared me into it, my weight is continuing to rise and it's time to readdress.
It's tough at first although I've found going 'cold turkey' is the only way for me, as the more carbs and sugar I eat, the more I crave but after a few weeks you feel so much better generally it's worth it x
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