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Large double chin which makes me feel like I am choking.

Posted , 12 users are following.

marykay62062
marykay62062

I have been on pred since November. Started at 15, went to 20 and am now down to 11. I have learned so much from this discussion group but I have a problem that I have not seen mentioned here or maybe I just missed it. Chipmunk cheeks are talked about but I have a large double chin that I never had before and quite often it feels llike I am being strangled. Can't wear anything that goes around the neck and at night the pillows have to be just right or I feel like I can't breath. The breathing really isn't a problem but it certainly feels like it is

1 like, 26 replies

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  • gail63312
    gail63312 marykay62062

    Posted

    Hi Mary. .I've worked with people who faces become so wide and round being on prednisone but unsure about chin...but apparently does reduce when steroids reduce. Gail
    • marykay62062
      marykay62062 gail63312

      Posted

      Maybe chin is the wrong word for it is the neck under the chin and it is getting worse even though my meds are going down. Could be something else? Thanks in advance for any ideas.
    • gail63312
      gail63312 marykay62062

      Posted

      Have u put on weight if so it's bound to go there I know when I do it does go under my chin...I've not started any treatment as yet and have doubts as to what I've got...SCAREY! !!! Have a chat to yr gp he may know if it's normal....good luck Mary keep me posted as I may end up with same if I go on pred. ..gail.
    • marykay62062
      marykay62062 gail63312

      Posted

      I've only gained about 8 pounds over this past year......could be alot worse from what I have read. My gp did a sonogram to see if there was any abnormalities or growths in my neck area but nothing showed up. Now she is talking about putting a scope down but I am certainly not wild about that idea. I am a chicken through and through.
  • jean39702
    jean39702 marykay62062

    Posted

    I have the same problem marykay and have accepted it as a prednisone issue.  My face feels so very tight at times I think my skin will burst.  My eyes and mouth are disappearing!  My neck has gotten very thick all around.  So far it hasn't disturbed my sleep or my breathing.  I also have the midrift fat accumulation and even have fat on the soles of my feet.  I feel like I'm walking on cushions.  Since I started at 40 mg 7 months ago and am currently tapering to 20 mg I figure I have a long way to go before I can expect the fat build-up issues to lessen.
    • marykay62062
      marykay62062 jean39702

      Posted

      How long have you been on pred? I have never seen any comments about fat accumulations like that. Oh I am a poor reader......I see you have been on for 7 months. Have you tried a diet? I still eat what I always did but maybe it would help to try to loose a few pounds. Well all of this is better than the pain I had.
  • jean39702
    jean39702 marykay62062

    Posted

    I've tried to maintain a low carb and high fiber diet since starting with prednisone.  In the early stages of PMR I lost 12 pounds, which I've put back on in the last 7 months.  So, I'm now at my pre-PMR weight.  However, the fat has redistributed to the typical areas for predinisone users.  At least, that's what I understanding from what I've read and been told by my health practitioner.
  • steve_1
    steve_1 marykay62062

    Posted

    I've  been on preds since December, Starting at 15 and now down to 8.I've been developing a double chin slowly since I started but as yet it's not that bad.Last week I met somebody who I haven't seen for a few months and they said I'm getting round faced. Nobody else has said this but I think gradual changes go unnoticed with familiarity. I'm also developing quite a belly. Now for the odd bit.....I haven't gained any weight, I was an overweight male of 13 stone at Christmas and I'm now an overweight, over sized male (my waist has increased by 2 inches) at 13 stone this morning. I always used to say to over size people that what ever goes on around the middle goes in through you face, with the obvious exception of pregnancy (which can't apply in my case). I guess I'll have to re=think that one. 
  • wendy5050
    wendy5050 marykay62062

    Posted

    Hi marykay

    I know exactly how you feel. I have a double chin to be proud of! ! I also have fatty deposits on my collar bones at the base of my neck as well as my waist. I'm on 10mg at the moment. Am away to Australia for a month soon and when I get back am joining slimmers club. Over past 18 months have gained 20 lbs. Have to do something. 

    Take care

    Wendy x

  • ruth39149
    ruth39149 marykay62062

    Posted

    Hi marykay, I don't know if you have read my recent thread where I said that I have been on Pred for PMR for 12 years, and other medications for RA and heart problems,  all in all I have gained 4 stone! including a large double chin and losing weight is proving to be impossible. Still I will keep on taking the tablets, as they say, and try to keep smiling. Best wishes to you, Ruth.

     

  • EileenH
    EileenH marykay62062

    Posted

    It is an absolutely typical place for pred fat distribution to happen - try googling moonface and cushing's syndrome and you should get a picture. It is due to the excess corticosteroid that is circulating. It doesn't happen to everyone but does usually start to go once you get below 10mg so be patient. It can happen withing days at high doses and it is partly fluid retention from the pred and mainly deposition of fat.
  • debbie27473
    debbie27473 marykay62062

    Posted

    Hi MaryKay, Yes I also have the neck! Yuk. The problem with the breathing at night makes me make terrible noises in my sleep. Drives my poor partner mad! The doctor has doubled my dose of Omeprazole to 40mgs a day as apparently the acid reflux is making it worse. I have been checked for Thyroid problems as the dr thought I had a goitre! Have tried three times to reduce from my starting pred dose of 15mg but have had to go back every time. Since I am now being investigated for a heart problem and last week was told by dr that I now have pred induced diabetes as well (aaarrgghh! Will it ever end)?, I am waiting for things to settle down before trying again. However I am now on a calorie controlled diet, making sure I stick to mainly unprocessed foods and getting in my five a day! Wasn't sure if I would lose any weight while taking the pred but in the first two weeks lost 2kg! Certainly worth persevering. I wish I had done it from the start but if wishes were £20 notes, I'd be extremely wealthy by now! In the meantime I try to avoid people with cameras! Good luck and take care, Debbie
    • marykay62062
      marykay62062 debbie27473

      Posted

      Thank you everyone for sharing for it takes the worry away about the very large double chin. I like Wendy's comment about having a chin to be proud of and Debbie's about avoding people with cameras. Good to have some humor with all of this. Steve's comment takes the cake. Good luck to each and everyone of us.
    • EileenH
      EileenH marykay62062

      Posted

      Don't forget the mirrors too! The only mirror I had access to except the bathroom cabinet was in the lift. I always stood with my back to it...

      I had the strange nighttime noises  but although it has stopped since I lost weight I think it is as much the PMR as the pred - mine started before I put on weight around my face and neck. 

  • Jaydy
    Jaydy marykay62062

    Posted

    I was diagnosed in April and am currently on 12 1/2mg prednesolone, hopefully to go down to 10mg at the end of the week. I too have a 'double chin' which  have never had before. It looks like a very enlarged thyroid but I had half my thyroid removed some years ago so it cannot be that.. I just assumed that if went with the 'chubby cheeks' which I find uncomfortable - they make me feel as though I am peering at everything. Can anyone throw any light on this problem?
    • EileenH
      EileenH Jaydy

      Posted

      Too much corticosteroid being present in the body makes it deposit fat in specific places: cheeks, chin, back of the neck and generally around the midriff. I'm not sure WHY, it is just so. The body doesn't care whether it is natural (too much cortisol because of Cushings disease) or artificial as in pred dosage. Even if you don't gain very much weight you are still likely to "rearrange" your cuddly bits - so all the fat goes to those places and you look a bit like a child's stick person with thin legs and arms. 

      Jaydy - be careful with 2.5mg reductions - it might just be that bit too much at a time. And certainly don't do 2.5mg below 10mg - 1mg at a time is as much as anyone manages, some of us have to spread even that over a month!

      Steve - we girls try to ignore such things! Collars and scarves are very useful ;-)  But they all go away eventually - honest.

    • Jaydy
      Jaydy EileenH

      Posted

      Thank-you for your info. My doctor seemed to think that 2 1/2mg was low - originally she reduced the dosage by 5mg and I was quite unwell! I will have to find a diplomatic way of suggesting 1mg. Today I have had a pretty bad day after the 2 1/2mg reduction..
    • EileenH
      EileenH Jaydy

      Posted

      Follow this link

      https://patient.info/forums/discuss/pmr-gca-and-other-website-addresses-35316

      and you will find links to other sites, including another forum, wher eyou will find more info. There is also a paper at the end, aimed at GPs, to help them manage patients with PMR. The specialists who wrote it keep patients at 15mg for 6 weeks, 12.5mg for 6 weeks and then 10mg for a year before reducing further. PMR is NOT like other illnesses where you give a short course of pred, reducing the dose to zero over (often) 6 weeks in 5mg steps. The underlying cause of PMR remains active, it isn't affected by the pred at all, the pred just removes the inflammation it causes and that in turn relieves the pain and stiffness. Take away too much pred and the symptoms come back. Take the pred away in too big bites and you suffer from steroid withdrawal - your body has got used to the amount that is swilling around in there and doesn't like it being taken away - and the symptoms are usually very similar to the original illness.

      If you can, print out the paper by Quick and Kirwan and hand it to your GP and ask her to please nicely read it. It is a good basis. Many of us feel an even slower approach is useful - but that will wait. Let's convince her that 5mg at a time is definitely a no-no, 2.5mg at the top end is possibly OK for some patients  but by no means all of us. 

    • steve_1
      steve_1 Jaydy

      Posted

      Because I was too fightened to go the whole hog as the doctor instructed I did the drop fron 12 1/2 to 10 by cutting a 21/2 in half and taking 11 1/4 for 3 weeks then down to 10, then presented it to the doctor fait accompli saying that I found the drop too painful so went back and did it my way. I got away with it. I realise that I was only able to do this as he always gives me more than enough to cover between visits
    • EileenH
      EileenH steve_1

      Posted

      That's fine as long as you are not on enteric coated pred - in the UK they are red (5mg) and brown (2.5mg) pills rather than white tablets. Enteric coated of anything MUST NOT BE CUT OR CHEWED. The coating is to allow the tablets to pass through the stomach and be absorbed further down the gut.

      I think any doctor who got stuffy about reducing in smaller steps should be replaced - supposedly there are no 1-person practices in the UK any more since Shipman so there should always be an alternative GP available. If no - another practice is an option for many of us.

      I do realise the problems mind - and rejoice that my GP thinks even my rate is too fast!

    • steve_1
      steve_1 EileenH

      Posted

      Oops! as I said to the doctor when he told me that (enteric coated).

      Under the coating they are the same as the plain ones I believe so they all acted in unison. I don't recomend that others follow suit but I'm still here to tell the tale with no discernable ill effects

    • EileenH
      EileenH steve_1

      Posted

      Yes they are the same under the coating but the coating being intact means the pred is released about 3 hours later whereas the ones you cut release that small amount of pred immediately. So you get a couple of peaks of pred rather than 1 larger one. It's the same if you take 1mg tablets together with enteric coated. It probably isn't going to hurt a lot in the great scheme of things no.

      But the main reason for taking the enteric coated sort is to protect your stomach from the irritation of pred. On that basis you might as well take ordinary pred all at once since you get a better anitinflammatory effect taking all the dose of pred at one fell swoop - and can therefore probably get away with a slightly lower dose.

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