PMR/GCA Weight Loss

Morning everyone, I'd like to wish you all a very Merry Christmas and Happy, Healthy New Year.

Question: Has anyone gained weight once they first started on Pred (I did, but not too much) but

then started to lose it ? Since the beginning of Nov this year I've been steadily losing it. Today I weigh

9st 4 1/4 lbs. Can't say I've been eating less, but maybe just cutting down on the choccy. Unfortunately, my

blood glucose has been steadily rising for the past few weeks. When I get up first thing in the mornings it

always read in the 4 's, now it can be 6 some mornings. I know when one has diabetes we can lose weight.

My last HbA1c a few months ago I think I was running at 42 over a three month period.

Most people would be glad about weight loss, I'm not, as I've always weighed less than 10st.

Thanks for any comments

[PMRpro Ambassador]

It is possible the stress has contributed - but unexplained weight loss should always be investigated. As you say, diabetes is also associated with weight loss.

[Hidden in reply to PMRpro]

Thanks for reply. Really not been stressed but on my feet a lot of course. The more I worry about it the worst is will be and will lose more. So must get a grip !

[PMRpro Ambassador in reply to Hidden]

Go and read your reply further down the page - where you admit you are stressed! You have been stressed, whether you think it or not.

[Hidden in reply to PMRpro]

Yes, you're right about stressing how long I'll be on Pred. Thought you were referring to the stress re hubby. He's as good a gold and I'm so thankful for that. If he was a moaner it would be so much harder. He's just gone off with Jen's father in-law to see if he needs his eye injection....do hope he doesn't as not a pleasant experience.

[Kiwisufferer2019]

Good morning Staplehurst (2,05am Saturday morning here in nz. Merry Christmas to you too, I'm up with awful reflux, the pain won't let me sleep, and we're staying at my daughter's so I haven't got any gaviscon with me. She is in the South Island doing the Dusky Track, the hardest tramp in NZ, 8 days of torture!To answer your question yes I have put on quite a bit of weight over the last 3and a 1/2 years since I started on prednisone. If I'd known that side effect,when the journey began I would've been much more careful of my diet. To make matters worse my husband has just had his second brain tumour operation two weeks ago. It's hard to watch diet when you're stressed. He came through it well, after five and a half hour surgery. How is your hubby doing? Hope he's recovering well. It puts a lot of stress on us the carers, especially having polymialga. Last week I had a bit of a downer and upped my pred 1mg to 10. Must say I've felt better, I think just stress related. Hope you get to the bottom of your weight loss and are feeling OK. Good to see you back. Kiwi sufferer.

[Hidden in reply to Kiwisufferer2019]

Thank you so much for your reply. I am so happy your husband is making good progress after his surgery and hope it continues. I can't say that I've been stressed, maybe on the go a lot though. Hubby had an appt yesterday re the femur surgery. X-ray taken and it is healing albeit slowly. He now has one leg a little longer than the other after his left hip was replaced. Hopefylly, that can be sorted when they finally operate on the right hip, once the femur is fully healed....could be this time next year before that happens we were told. Haematologist called me the other day with results of a blood test taken on him to check haemaglobin and kidney function. Blood all okay but sadly his kidney function has increased from 180 in June to 214 this recent one. Making him drink 4 pts of water daily now to hydrate his kidneys. Not sure what else should be done to correct his level. He takes BP meds as we all know that high blood pressure causes kidney damage.

I do stress myself out worrying about how long I will be on Pred and the potential damage it's doing along the way. Kidneys, BP, Diabetes etc etc. But my main worry is GCA....blinking paranoid about losing my sight. It was those sypmtoms that made me increase from 5 back up to 10. I'm now back on the DL taper, 7 so many days and 6.5 the other days. It's not like I've rushed any of my tapers, I've been going really slowly forever. Three yrs on and really no further afield. The trembling feeling has returned, not visible but inside again, that went away on a lower dose. Worry, is the worst thing for weight loss, so must pull myself together. If it continues after I've made a pig of myself up at Jen's on Christmas Day I will request a blood test. Not sure if it could be my adrenals.....but I've never suffered from feeling tired or fatigue and think that would be a factor with adrenals insufficiency. In fact I have a lot of energy and have since diagnosis in Dec 2019.

Take care Kiwi XX

[Kiwisufferer2019]

My brother is under a kidney specialist, has been for some years, he was told 3 years ago that he'd be on dialysis in 3 years time, so he got on the internet and researched and found out blueberry juicewas good for the kidneys and also lemon juice with the skins boiled, strained and juice added back. At his last appointment the specialist said kidneys have been stable for 18 months and I don't know what you're doing but keep doing it. He has a small glass of blueberry juice each morning and a glass of lemon water. Thanks for replying Staplehurst and enjoy your Christmas, ours will be very quiet. You take care too. Xx

[Hidden in reply to Kiwisufferer2019]

Hi again, does your brother have diabetes ? Hubby does and has had since the 90's. Now obviously taking it's toll. I buy lemons and make him a hot lemon juice drink every day. I will now buy blueberry juice. I love blueberries and have them with raspberries on my cereal very morning. My poor fella also has macular degeneration. 5 weeks ago he had his last jab in the eye, he goes again tomorrow and really hoping he gets away without having to have it again. For the past 6 months it's been stable, but the fluid does build back up again over time. My friend lost the sight in one eye due to it, and being unable to be seen during Covid. Now her other eye is going, her husband is fighting prostate cance that's now spread....so, always someone worse off than ourselves. However, your husbands brain tumour must have been horrific for you both. X

[Kiwisufferer2019]

No my brother is very lucky, kidney problems is his only health issue, although a few years ago he had the wet macula eye problem and had a series of injections which thankfully cured it. Golly your poor man has a lot to deal with. A worry for you too. Xx

[Hidden in reply to Kiwisufferer2019]

Yes he does, but never ever complains. Trouble is we're all getting older. He is just 77 and I'll be 76 next May. When I watched the Royal Variety Performance on telly the other evening, after the show they showed pics of all those that have died this year.....so many. Was very sad to see Olivia Newton John amongst those faces. Some young, some in their 60's and lots in their 70's and of course many made it to their 90's, like our dear Queen did. Hard to beleive she's gone and Charles will be making the speech this year. X

[Kiwisufferer2019]

Its hard to be getting old, we will be 75 and 73 this year, so hard for my husband not being allowed to drive now, and with his vascular disease he cant walk very far at all now, Yes it will be strange without the Queen she was always so calm with such words of wisdom, I did enjoy her Christmas day speech to the Commonwealth. Im pleased shes not here to see the Harry and Meagan performances, she didnt deserve that betrayal. All the very best for the holiday season keep well. Xx

[Hidden in reply to Kiwisufferer2019]

You too X

[Louiseiw]

I haven't weighted myself, it's just not something I have ever done. Like you when I first started the steroids you could see the weight gain in my very round face but after 13 months on steroids I have noticeably lost weight, I had to buy a belt because all mu jeans are now too big.