I posted last week regarding reducing from 10mg to 9mg and was pleased the GP already knew about the DSNS method so I did not have to have a battle.
She had received the results of my Dexa scan and these showed I had osteoporosis in my spine and hips so it seems I shall have to stay on AA.
I knew my neck and face were getting fatter but have just noticed I have a soft pouch below my neck below my clavicle. I have heard of the hippo hump a fatty deposit on the back of the neck but has anyone had one at the front?
I am on the 5:2 diet as had put on a few lbs and have manage to lose 7lbs up to now but now have the dreaded "pouch"!
Any input would be appreciated.
27 Replies
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Hi Hidden
Sorry to hear about the osteoporosis; my neck became much bigger & l always had to wear a V neck or lower scooped top & the space between my clavicle was puffy also, like it had filled with fluid, I'd forgotten all about it until you asked about it.
By the time I eventually got to 7mg the 'hump' & my neck in general had returned to 'normal' so don't dispair it will go as you reduce the Pred
I haven't got anything yet at the front of my neck except an increase in the number of chins!i have just this week noticed horrible fatty areas on my body in places I don't normally have fat! It has made me so depressed as last year when not on pred I was at my target body weight and shape. And the PMR struck.
Have reduced this week from 12.5 to 10 and are feeling the effects greatly in places I haven't felt before but I am so reluctant to take any more steroids due to more fat appearing.
I'm beginning to hate looking at myself. I would love to know how you shed the 7 lbs- how long did that take ?
Hi Jude- I started at 40 msg almost 2 years ago - can't get below 10mgs. Had lost weight and was a nice size 12 before steroids and went up to a size 16.
Slowly coming down by not snacking and no white carbs and reducing processed foods. Lost 7lbs since mid Jan. It's a lot slower to lose on preds in my experience.
Low carbohydrates have been the answer for me. I found a photo of me five years ago and couldn't believe the big round face and immense paunch. I'm getting down to 1.5mg and the low carbs have enabled me to shed upward of 2 stone in the past 6 months. I don't miss bread and potatoes, though can be tempted by the odd chip if I'm out to lunch!
Well done you - I think on preds we just have to change the way we eat - it's not always the quantity but what we eat and how our body breaks it down. Frustrating!
We have been on the 5:2 diet for about 5 weeks now and the weight seems to be slowly coming off (except neck and face!). My stomach isn't quite as fat and my clothes are beginning to feel comfortable again. Not sure if it suits everyone with PMR but so far I feel OK doing it.
Low carb is the best way to go when on pred. Pred changes how we process carbs and can trigger random release of sugars from the liver - and that triggers production of insulin and that encourages your body to deposit fat in the usual places. I lost 36 lbs while still on above 10mg pred. Even now, if I eat more than a minimum of carbs I don't lose and even put on weight. Be careful with fruit too - lots of sugar. Vegetables (except root veg) are much better.
My collarbones disappeared - but they did come back once I lost weight. Thinking about it now - at some point there must have been a fair pad of fat below the collarbones too though.
I had a soft lump between the collarbones a few years ago before I got PMR, my Dr sent me for a scan and they found I had a nodule on my thyroid, it is non-malignant but they said to have an ultra-sound done every year to check on it. When I moved back to UK they did an ultra-sound and then decided to do a needle biopsy. This was done in November, not very pleasant, I heard nothing until January when my Dr phoned to say they had not been able to get any fluid to analyse and did I want it done again! I had read after I had it done that thyroid surgeons in US would prefer patients not to have needle biopsies as it can cause complications in surgery if needed. So I declined to have it done again.
Yes Calvi, I can also identify with the puffy, lumpy neck. These days when I bend my head forward it feels like I've got a cushion tucked in there. As for my face, I look like a hamster that's saving its food for later! What joy! I'm clinging
Pressed wrong button & off my incomplete message flew! Just was going to say am currently on 12mg, and clinging to hope that my extra pouches will disappear too, when I get lower. Hang on in there.
A little over a year into PMR/GCA diagnosis, when I had reduced to 5 mg, I found a soft, rather large lump in the front of my throat and asked primary physician about it. (It may have been there for a while and I just happened to notice it then.) Conclusion was that it was a fatty deposit, probably related to prednisone and that thyroid was unrelated and fine. I have noticed a change in swallowing, too, especially when not fully upright. I am hopeful that, once off of prednisone altogether, the lump will dissipate along with being able to lose a lot of weight added in this process. I think the doctor can tell by examining you if it is innocent or something that requires further exploration. Good luck!
Thanks Clieder, I shall mention it to the doctor when I go for my next check up just to be sure. My swallowing seems to be difficult at times and I have to be careful to chew everything. My husband says he has never known anyone eat so slowly!
Has it been examined with ultrasound? If it is a lipoma it needs monitoring - they can get very large!
If you cut carbs drastically it is possible to lose weight while still on pred - I lost 36lbs of pred-associated weight while still at doses above 10mg. Others have also lost weight or avoided weight.. Slimming World also seems to work for some people too.
It has not changed at all and my primary is following up on it, but I would ask for more investigation if it did change. Calvi's describing it as a "soft pouch" is really better. It is not a confined sac that one can move around as a lipoma would ordinarily appear. (I have had those elsewhere and on my dog and this is different.) I'm pretty comfortable with the diagnosis in my case, but would never assume that it was innocent and especially on anyone else's behalf. Best to get it thoroughly checked out, for sure.
I'm glad to be reminded that I do have some control over the weight gain. I gained about 20 pounds over that first year and then leveled off at that weight, so it was easy to promise myself that, when the prednisone ended, I would get right on it. Then, the prednisone went on and on and there is no certainty when it will actually be gone, so it is time to do something to reverse that situation. It is not comfortable at all since I have never weighed this much in my entire 77 years. Since the prednisone makes me want to eat literally all day, it was easier to just give in to it. Thanks for the nudge toward taking responsibility for this problem and not just "blaming it on the meds." You are a very wise mentor and so valuable to this forum.
Yeah, I've got that. My collar bones have disappeared, too. Amd I have a pouch under my chin. And pred belly. None of my clothes fit. I'm still within 2-3 lbs of my normal weight, though. It's just in different places now.
I've been on 20mg pred since February 2017, and last week began a taper doing 19.5/20mg on alternate days. (I tried a faster taper in May and really paid for it. Slow as a turtle now...) I already see a slight difference. I'll probably drop to 19/19.5 next week and see how that goes.
But I have to say that while I'm not excited about my looks, being pain-free is so much more important...
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