Ok...I GIVE, weight gain (4 me) seems inevitable

Thx Anne...I'm gonna try, honesty I am. It's so hard when you're going through pain and trying to accept a new diagnosis to also try and avoid the things in life that bring you Joy...ie, a twice baked potato with all the fixin's!😳😭

I know exactly how you are feeling but together we can support each other on our steroid journey!

I have PMR and GCA and every day is a mystery! I can have a pain free day followed by a day when I struggle to get upstairs! But, I will not let it beat me!! Neither will you 😀

Hi ya Lynda, I eat chocolate, only dark choc 70% cocoa.

After diagnosis I have changed to anti inflammatory diet, that was hard, as I loved the same things you did, I feel so so much better on this diet. I have finally learned to cook, I have always hated cooking, actually enjoy it now.

Anyway am really glad to have lost 10 kilos. I think it's worth it to miss out on things. Still have cups of tea and chocolate! so you don"t feel like missing out too much.

 

Great stuff ... and good on you.  I agree.

The weight gain is a minor point. Steroid-induced diabetes is rather more significant.

Cut all the naughties from the house and you won't be able to eat them!! No-one loved carbs more than me.  I couldn't visit the supermarket without nibbling a bread roll with olives in it every day and chocolate is addictive...one piece is never enough!!  And that goes for pan chocolat too!!

Thx Diana. As I said, I've never had 2 worry about my eating habits so this is all very new to me! In addition to have been able to pretty much eat what I wanted, if I DID need to drop a couple if lbs, I've always been able to do it quickly (even in my current 60's)! So, with that being said, although I completely understand what everyone's saying about cutting carbs, sugar and fats, it's Truly a whole new world for me which is going to take me a bit if time and a new mindset! (Ughhh, just in time for the upcoming holiday season!). Also, any thoughts as to why my clothes seem to be becoming baggy whilst the ## on the scale are going up?? Kinda confusing.

Lynda, what's hard about it, just cut down gradually if you don't have any will power. It will benefit you to try to loose weight, as I'm sure you won't want any more problems. I love my food but I have learned I can still have pasta, but I have now tried lentil pasta as no carbs or little as learned from this site.

we are all still learning, try to do it for your own health.

With all due respect....What's hard about it???? Crud, this whole thing is HARD! Life is hard! Just doing the best I can do. If I sound a bit crabby, I AM! Sorry....

You are right Lynda, it is hard. I have been fortunate and actually lost weight while taking Pred., I am now steady with my weight, but then pre-diabetes reared its ugly head, it's a constant battle, the very best of luck!

Yes I absolutely agree with you but not everyone is strong enough or able enough to do exercise like you to keep the weight under control!  I was in so much pain for the first year of PMR in spite of pred as I was continually being reduced too fast by the rheumie (that's when I decided to go it alone and manage my own drops)  that I  could hardly push a trolley round the supermarket or walk more than 500 steps.  And I had belonged to a gym since 1986 and led an active lifestyle.   I think we all have ways of coping with PMR and mine was to look up the steroid diet on line and stick to it as far as possible.  This was my daily challenge and it kept me focused and determined in spite of everything.  I only started to feel able to walk further etc once I reached 12mg and had more energy.  I take my hat off to you for all your disciplined exercise....but you are so lucky to be able to do it!  I certainly wish I could! And in the meantime the diet keeps the weight under control (plus my husband's too)  and keeps me looking the same How long have you had pmr and what dose are you on now?

Hi diana and nick! First thank you both for your greatly appreciated answers to my quandary. Nick, I, (like diana), so admire your exercise regimen. However, I too am barely able to walk my dog 2x p/day, much less run or bike ride ( which have never been my thing Anyway)! I've suddenly turned into one of these poor souls who m have to use an electric cart in the grocery store! Never in my wildest dreams....I was the cheerleader and majorette in school, the 1st one on the dance floor etc., etc. Now, I can't stand in a dang bank line for Pete's sake! And in combination with my paralyzed lung situation which causes me shortness of breath on a continuous level, well, you probably get the picture. I can't begin to tell you how depressed this has all made me....It's all relatively new, so I'm still trying to process it. Usually at this point I'd apologise for feeling so sorry for myself, but tonight, I'm just Angry!! This too shall pass, but for now, I'm just going to go with it. And diana, I can relate to your former dislike of cooking, for I too dislike it INTENSELY! The joke in our family has always been, I've always (and still am!) been a GREAT mom, just not a "June Cleaver" mom! Lol... Anyway, I guess the bottom line to all this is, it's New, and things are happening rapidly that (largely) I can't control. I'm trying to figure it all out while still making my life work! I'm sad and I'm scared and I'm very confused....but I have faith I'll make it! I just need some time and a few compassionate ears so I can be the same 'ole Lynda for my family and friends. Thanks so much for listening.

Another point about carbs in general, sugar in particular, is that they are pro-inflammatory - can make the inflammation worse. Many people have found that cutting them has also helped their symptoms and that they flare if the have a carb binge. 

I know it is hard, life is hard, life isn't air, no-one ever really believed it was - but when you count up the potential benefits it makes it easier to make a resolution to at least try.

It was never easy. I could not get out of bed by myself before I was diagnosed and put on pred. That was almost 3 years ago - Dec 2015. Started at 15mg, had gone as low as 3mg and had a setback with hand/knuckles swelling this June and had to go back to 9mg. I tapered down to 4mg recently.

I was very active before PMR and lucky that have no other issues that would prevent me from exercising. It took me almost a year to very gradually get back to the level of fitness that I had before PMR.  Daily walks started at few hunddered meeters and gradually became longer; then I added biking in a few months first 15-20 min and then longer ( now 2hours) and then I started swimming, my favorite sport. Gradually I increased distance, so now I can swim 2.5-3Km per session.

I opted for exercise because it actually helps recovery from PMR, helps with stiffness and also maintaining muscle mass. This in tern keeps the metabolism at higher level and takes care of weight and sugar problem.

I hear you. Just think how hard it would be if you don't take steps to reduce carbs and on a top of everything else gain extra weight.  Be strong and save yourself trouble in a future. The hardest part of PMR is accepting new normal and adopting to it.

We are level pegging as I was diagnosed Christmas 2015 but you are in advance of me.  My drops are extremely slow as I am very  steroid sensitive.  After staying on 7mg for 8 weeks, I dropped to 6.5  2 days ago and suddenly yesterday I was struck in town with a painful flare in my left shoulder and couldn't raise my arm.  Got home, took a half  mg and within 2 hours I was back to pain free.  This tells me I have to go back to 7 for a bit and try again in a week or so.  I will then try 6.75mg by using the pill cutter.  Now I am under 8mg even the slightest drop affects my body.   But I am determined to get there even if I have to use quarters on the DSNS method. At this rate, it will take a number of years!!   Soooooooooo frustrating!  All the 4 men I know who had PMR were down to zero within 2 years.   Be thankful you are a man and keep up the good work reducing like a tortoise.

it doesn't have to be frustrating.  Just don't "push" for lower dose, it takes time. Keep in mind that underlying PMR activity determines what dose you need, not your reduction. At times it seems that you are stuck at certain level; I spent 6 months at 5mg and then I was able to reduce lower. I decided long time ago that I will take as much pred as I need to keep me pain free... At the slightest signs that PMR is not managed, I "flush" the inflammation with higher dose( add 2-5mg for few days) and then step back to my previous pain-free dose.  Average length for PMR is ~6years. Does it really matter if I stay on pred for 5 or 6 or 7 or whatever? What I think is important is that we have comfortable lifestyle that we enjoy, and do things that we like. That is how I look at it.

I absolutely agree.  No-one could go slower than me.  My aim is to reach 5mg and stay resting on my laurels there for a bit in 2019.  My ESR and CRP are always completely normal in any event.  Good exercising!