Getting fat after pred,: Hello everyone, I have... - PMRGCAuk

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Getting fat after pred,

Fieldofdreams profile image
71 Replies

Hello everyone, I have been silent for some time but I wanted to ask for advice re post pred. After 3 years of GCA - Aug 2018 to Aug 2022 I managed to get off pred by tapering very slowly.

During the time I took Pred (and methotrexate for a while) i was meticulous in my diet. Very low carbs and sugar as I didn't want to put on weight - which i didn't. As an x dancer and performer still this was important to me. I actually lost weight and felt okay. Now, I feel I am in self destruct mode. I have gained weight, mood swings, cant stop eating. I had intense pain in my joints and muscles whilst tapering off and my consultant said it was the withdrawal symptoms and that I would have to persist through it.

I do have arthritis which has increased - or I feel it more now I am off Pred - and I am constantly pulling ligaments (I had severe tendinopathy for first 2 yrs on pred).

Has anyone else suffered similar symptoms? I am taking B12, Vit D, Calcium with magnesium and iron, and a good multi vit.

I feel 'out of control' now; afraid most of the time and this perpetuates the circle of feeling worthless (having put on weight) and being afraid of the GCA returning if I work at my normal level.(I worked throughout having GCA as I had to being self employed and also a carer). I didn't talk to many people about GCA as i would have lost work and been seen as incapable. I care for my mum and another elder.

Any post Pred life advice would be so gratefully received as I feel a little bit cast adrift.

Thank you so much.

71 Replies
shella profile image
shella

Know the feeling- down to maintenance 5mg every other day thought it would reduce my stomach size but seems I have gained another stomach - my own fault as i dont have the energy to go to the gym just walk when the weather is fine! I also take lots of vitamins for good immunity but always hungry! GCA always a worry. Got to be positive I guess. Some days aches and pains worse- always better in the sun!

Fieldofdreams profile image
Fieldofdreams in reply to shella

Thank you shella for your reply. yes, the only way is to be positive and i thank you for 'seeing' and hearing me today. its always good to know you are not alone with it. yes, i wish i could live in a sunnier climate than the north of england! Hugs

PMRpro profile image
PMRproAmbassador

The horrible truth is that weight management is a lifetime problem that gets harder as we age as well. It is also possible that the dietary changes are affecting your mood directly.

Have you spoken to the GP about the mood changes? Adrenal insufficiency is probably contributing there - did you have problems before stopping the pred? Did you go faster because of the MTX? I suspect that the whole stress of your responsibilities is overwhelming you because of the lack of corticosteroid. Have you had a synacthen test done? Or at the very least a basal cortisol level? That is a cortisol level done on just an ordinary blood sample taken in the morning - between 9am and 1pm will do. And I think that is where you should start.

Fieldofdreams profile image
Fieldofdreams in reply to PMRpro

Dear PMRpro, thank you once again for your great advice. I will request a synacthen test done or a basal cortisol level. yes ,i have had a lifetime of weight management issues (what dancer doesn't?) but the added stress makes it seem like an insurmountable mountain and you are right, I feel overwhelmed with no way out. I have been in a caring role now for 4 years... and I lost my dad and did not have space or time to be anything but the strong one for mum. i wish I could turn off the 'self destruct' button. :)

Fieldofdreams profile image
Fieldofdreams in reply to PMRpro

(pressed too soon). thank you for validating my feelings and for being there to listen and 'see' me. You are amazing.

SnazzyD profile image
SnazzyD in reply to Fieldofdreams

The next step is for you to see you; the part of you that is trying to get your attention so desperately. Do try the GP because low cortisol makes everything impossible.

Fieldofdreams profile image
Fieldofdreams in reply to SnazzyD

Thank you. You are so right. She is pulling my arm for my attention and I keep pushing her away! x

PMRpro profile image
PMRproAmbassador in reply to Fieldofdreams

Been there, done that, like a couple of others, ill ourselves, poor adrenal response, having to function as carers - we recognise it very quickly in others. If you are broken you can't be there for someone else, YOU have to come first now and again. And do seek support from your GP. And I have fought the weight battle all my life too!

Doraflora profile image
Doraflora in reply to Fieldofdreams

hi fieldofdreams. I can’t offer any advice other than to build up a good rapport with your GP if you haven’t already done so. You’re in charge of your body and if you feel you need something testing then do bang on about it. Sometimes I think our own surgery are happy to adhere to my requests probably just to shut me up🤣

there’s so many experts on here and there’s always someone to offload to. I’m not in the ‘expert’ category by any means but I’m always happy to chat.

I totally empathise with your carer duties. I remember the days of being constantly available for my late parents.

Keep positive and keep chatting on here.

Fieldofdreams profile image
Fieldofdreams in reply to Doraflora

Hi Doraflora, yes, you are so right. i do need to bang on to my GP. I sometimes go a little deferential but i felt emboldened by being on here this morning and was quite firm with what I asked for - boosted by PMRpro and Doresetladies advice and everyones love and support. Thank you and I hope you are having a good day today. Love and peace

Doraflora profile image
Doraflora in reply to Fieldofdreams

I don’t know where we’d be without the stalwarts of this forum, such as PMRpro and DS, not to mention all the other super experts on here. x

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

hi

Sorry you are feeling like this- just wondering if your adrenals are still struggling - the feeling out of control and anxiety could well be down to that. And being a carer is not easy -as many of us know.

May be a silly question (in current times) -but have you spoken to GP about -

a.how you feel, and requesting referral for help,

b. getting your adrenal function checked.

Osteoarthritis certainly raises its ugly head after Pred - gave a look at versusarthritis site for coping mechanisms-

versusarthritis.org/about-a...

..and maybe this will confirm there is life after GCA/Pred -

healthunlocked.com/pmrgcauk...

🌸

Fieldofdreams profile image
Fieldofdreams in reply to DorsetLady

Dear Dorset Lady, thank you once again for your wonderful advice and also validating my feeling. No I haven't spoken to my GP but plucking up courage to post here and feeling supported by you and PMRpro I will now do just that. I will also look at the websites. Huge thanks. Amazing.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to Fieldofdreams

Plucking up courage is a big hurdle, but there are so many who feel the same, or have felt the same as you...so we understand... if your surgery has eConsult facility or email, that might be a first step.... sometimes easier to write things initially...

.

Fieldofdreams profile image
Fieldofdreams in reply to DorsetLady

you read my mind! I have made myself a big 'brew' (cuppa) as we say up north and sat in front of my computer to do just that! C x

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to Fieldofdreams

👍

Thelmarina profile image
Thelmarina in reply to Fieldofdreams

They are lovely, aren’t they - and so full of common sense and experience. I think you are also grieving - the loss of your Dad and perhaps changes in work. You’re used to being creative and part of a team which is another way of being ‘heard’. We hear you, get to your GP, you matter! ❤️

SnazzyD profile image
SnazzyD

Hello, your Pred journey is about as long as mine. However, the adrenal function can take a lot longer to return . I’d say it was a good 18 months to feel that it didn’t affect me in some way. Low cortisol can give you low blood sugar and if you address this by eating carby foods that puts up your insulin and you put on weight. Low cortisol also made me feel miserable and overwhelmed by everything, even a trip to the supermarket. I agree with the others that that needs to be addressed.

It is difficult long term with something like this. The hardest of all was having my life and identity (sporty professional super-woman who is all things to all people) stripped away. Of course none of it is sustainable because we get older and get illnesses/injuries and we have to learn to be happy as we are. I knew that if I didn’t change that, GCA or some else would return. It has been both a grieving and a re birthing process; very tough but necessary.

Fieldofdreams profile image
Fieldofdreams in reply to SnazzyD

Dear SnazzyD, thank you so much! My face is unusually wet now. you hit the nail on the head when you said it is a grieving and rebirth at the same time. GCA and lockdown on top decimated my career and family. I often find myself talking to the 'old me', the super woman, who is now struggling to adapt or re birth. But your wise words coupled with PMRpro and Dorset Lady have given me courage and validation. I feel a bit less invisible today now.

HeronNS profile image
HeronNS in reply to Fieldofdreams

There are a lot of people on here who may not have any direct useful advice (me for example) but understand, empathise, and are definitely supporting you. All the best.

Fieldofdreams profile image
Fieldofdreams in reply to HeronNS

Thank you so much HeronNS. It has made such a difference today to me just to connect with people who understand. Thank you for your kindness and love.

PMRpro profile image
PMRproAmbassador in reply to Fieldofdreams

That combination is really hard. Believe me - I know. Not just the rebirth but finding the newly opened doors that are so different from the past ones can be a struggle.

Fieldofdreams profile image
Fieldofdreams in reply to PMRpro

oh you are so so right PMRPro! Feel i have been catapulted into an old person's body and she keeps following me when I glimpse in shop windows!

Nextoneplease profile image
Nextoneplease in reply to Fieldofdreams

Exactly how I feel Fieldofdreams 😂

Honestly I hardly recognise myself, I’ve aged ten years in the last three, I’m sure. And worse, I don’t have the stamina, strength or balance I used to have. Some of that is due to general ageing, I’m sure, but some is PMR and also the changes to lifestyle imposed by lockdowns at a critical life stage for us, when once you’ve lost fitness and social contacts, it’s harder to re-establish them.

But….onwards and upwards, so far as we can 💪x

Fieldofdreams profile image
Fieldofdreams in reply to Nextoneplease

Nextoneplease we are the same! I keep glimpsing this other person in shop windows who I dont know! I was on Methotrexate for a while and I lost a lot of hair so I started to wear a wig. it gave me a bit of confidence then but now i hide behind it becasue i cant bear my own hair and how it has grown back... Wearing a wig though has its drawbacks... especially when a tree branch hooks it off your head or a friend gives you a hug and pulls the back of it down! lol. not everyone knows i have it, they just think i went for a short style - its called Rachel Welch lol lol. Good to laugh. Social life?? what social life? onwards and upwards lovely lady.

Gossiplady profile image
Gossiplady in reply to Fieldofdreams

hi fieldofdreams! Great words. Has made me feel so much better today. Was trying to decide whether to buy a wig. Ok I will. My hair used to be the envy of everyone. Now vile. The positive side I think is that I could buy several, all different, to change this awful creature I now am. Let’s keep laughing!

Sharitone profile image
Sharitone in reply to Fieldofdreams

In the interests of solidarity, here is a picture of me with my post-Methotrexate hair!

scarecrow
Fieldofdreams profile image
Fieldofdreams in reply to Sharitone

oh Sharitone, I see and hear you! I have had to learn to love straw and unplugging the plug hole with hair. Strength and love to you. C x

borednow profile image
borednow in reply to Fieldofdreams

She keeps following me as well - very unnerving. Be kind to yourself sunshine and be comforted by all the kind words which have been sent to you. You see, you're not alone.

potterylady profile image
potterylady in reply to Fieldofdreams

That old lady is following me in the shop windows too!!!! She's also in my mirror at home!!

potterylady profile image
potterylady in reply to SnazzyD

Great message SnazzyD. I needed to hear that too.

Bluey-1 profile image
Bluey-1

I am only six months in with GCA but I so get what you’re saying. You have been through such a traumatic period on top of the GCA. The grieving for your old identity, the out of control feelings, the sadness, the unpredictability of each day, the cast adriftness. All I can say is that you are not alone. Yesterday I enjoyed a walk after a rare good night’s sleep but last night the cold I am suffering from kept me bunged up and awake for hours. That feeling when you face the next day knowing it’s a washout. Especially on a typical UK dull November morning. I seem to be very prone to viruses on steroids, no doubt as immunity is low. They hang around for too long as well.

Fieldofdreams profile image
Fieldofdreams in reply to Bluey-1

Hi Bluey, thank you so much for reaching out. it is a lonely place isn't it when you are still awake at 3 am; upstream without a paddle. i thought I would get my old life back but it seems to have aged me and made me feel fearful. But having so many lovely messages today has reminded me that I am not alone and we have to keep going and importantly reaching out and sharing. I hope you have a good day today and that tomorrow the sun will come out for all of us on the last day of Nov.

Nextoneplease profile image
Nextoneplease

Dear Fieldofdreams 😊

Oh, your post rings so many bells with me! I was a different person pre lockdown and pre PMR/GCA. A respected worker in my field, main carer for my mum, lively and busy….I had lots of medical conditions but I could manage them. Mum passed away in November 2019, lockdown obviously started in March 2020, and my sadness was compounded with what I thought was arthritis and other things. Was finally diagnosed with PMR in March 2021 and GCA in June. I haven’t felt the same person since then.

I’m a way behind you in the GCA journey, still on 9mg and tapering by 0.5mg per three weeks. Every day when I get up I have to remind myself who I am, or who I was, and it’s a struggle.

Strangely enough I find casual contacts like with delivery people, window cleaner, gardener etc are very helpful. I feel much better for a quick chat with them (while reminding myself not to take up their time). I guess I hope they see me as an individual, not someone who’s “changed” or “gone downhill”.

Anyway just wanted to say I think the other posts are brilliant - and you are not alone.

Sending hugs 🤗xx

Fieldofdreams profile image
Fieldofdreams in reply to Nextoneplease

Dear Nextoneplease, thank you so much for reaching out to me and for your love and support. I can say, it has been a horrible 3 year journey. I am so sorry about your mum. I lost my dad during the last lockdown and we buried him just before Christmas eve with only 9 people. The Pred 'rage' didnt help on that one. I live on my own so it doesnt help, but then I work in a high profile industry that takes no prisoners and I just want to run away at points. Being on here chatting to others makes it bearable. When I came off Pred I thought I would go off into the sunset happily and get my life back, but alas as Snazzy D said, a re birth is needed. thank you again and lots of hugs. you are amazing. x

Bluey-1 profile image
Bluey-1 in reply to Nextoneplease

That’s interesting. Yesterday I walked round our local country park feeling mobile and rested after good sleep, saying hello to all I met on the walk. Casual comments as you say are helpful. They don’t know you’ve ‘gone downhill’. I’ve had to cancel arrangements because of my ill health and have backed off lately. It’s a busy time for people and I was one of those dashing around for social engagements. I did actually say the other day, it feels like I’ve dropped off the face of the earth! I have our annual lunch mid Dec with friends to celebrate my Christmas Day birthday combined with a Christmas meal. I’m working on being good that day…but you never know! That’s what I find so upsetting. Fingers crossed tomorrow is a good one.

Fieldofdreams profile image
Fieldofdreams in reply to Bluey-1

yes Bluey-1 its a tricky balancing act and 3 years on my social life (well lockdown took care of that) then losing my dad and being a carer, ive forgotten what it is like. I have to think, will i have enough energy for it, will i get angry or impatient and will I feel people are staring at my wig! I have to remind myself that there are so many people worse off than me and look forward to little things. Cat cuddles is what makes my day these days. tomorrow will be a good one!

Bluey-1 profile image
Bluey-1

It will, and cat cuddles are very de-stressing. We have two lovely rescue cats who help me to relax.

Smallstepsforward profile image
Smallstepsforward

hi there, I hear your frustration! I came off pred in early 11/21. I’d only been on it for 4 mths and didn’t put on weight for most of the time I was on it. The weight gain happened in the last month and accelerated after I’d come off it. It was a real battle. I put on a stone (I was about 60kg when diagnosed, dropped to 56kg pre diagnosis and pred and went up to 68kg), which is a lot for me as I’m only 164cm. Fast forward to now 12/22, and I’ve lost all but about 2-3 kgs. I’ve lost the most weight cutting out (and I mean zero! Which is boring) alcohol and refined carbs. I’ve kept up complex carbs as I need those to make energy etc. I take a mix of supplements (omega 3, a prebiotic/probiotic/digestive enzyme/green food/berry mix/fibre mix called superfood, and ultrainflammanx) to support my energy and immune system. I do light weights, walking and when I’m able to a gentle cycle. I was shocked at the speed I put on the weight post pred and the effort it’s taken to get it off! It’s still not gone but I feel so much better about myself. Good luck!

Fieldofdreams profile image
Fieldofdreams in reply to Smallstepsforward

Dear Smallstepsforward, thank you so very much for sharing your journey. I have been the same. Even lost weight on pred as i did low carb, no alcohol or refined carbs. i need to return to that and give myself a mental detox too. i will also look into ultrainflammanx as that sounds really good. All the support I have had on here has really helped and encourage me and I thank you for reaching out to me. Love and peace.

potterylady profile image
potterylady in reply to Smallstepsforward

I need to get a hold of my weight. I thought it would be easier after being off Prednisone. Apparently that is not true. I've used a calorie counting app called Noon. I think I better get on it again. It's so good to hear all of these experiences.

Louisa1840 profile image
Louisa1840

Oh Field-of-Dreams how we ALL hear you and empathise with you! When I was first diagnosed with PMR five and a half years ago my doctor said "Welcome to the disease which ages you over night"! I recognise only too well the old lady I see in the shop windows, the one who has gained over 15 kgs in weight, the one who struggles with any physical activity and I mourn the loss of who I once was. The emotional battles we bear with the adrenal insufficiency on top of life's battles (I have recently lost a beloved grandson to suicide) are almost more than I can bear. BUT we HEAR you....... This forum is a Godsend!!!

Fieldofdreams profile image
Fieldofdreams in reply to Louisa1840

Dear Louisa, I am so so sorry for your loss, i have lost a dear friend to suicide and know the pain of that and the questions play around and around in our heads. I hope you and your family have support through this difficult time.

your doctor was wise - it has aged me seriously - i wonder why they don't tell us all that? I was given no hint of any side affects except weight gain so i could do something about that, but all the other stuff, moon face, thin thin skin, anger, etc etc etc.

But this forum is a god send as you say and just your words have helped me so much. Thank you for sharing your story and for reaching out. With love and peace.

potterylady profile image
potterylady in reply to Louisa1840

Sending you love, with losing your grandson. And I agree with aging overnight. You have a great attitude with all the challenges you have faced.

agingfeminist profile image
agingfeminist

Keeping on a rigid diet is so difficult...but you have done it before ...you can do it again! Exercise won't help you lose weight...so don't put more strain on your joints, though gentle walking might be good and enjoyable. The pain from the arthritis needs looking at. Go and see you doc or a rheumie.

You are going through a tough time...but you have been through tough times before. You have already proved you have amazing determination and resilience. Giving voice to all your challenges is the first step. You are on a good path.

Fieldofdreams profile image
Fieldofdreams in reply to agingfeminist

Hello agingfeminsit, thank you so much for your encouragement and best wishes. You are right, I have done it before so i can do it again... i seem to go round in circles with it (have all my life) but maybe I have to accept that that is me and not think I am an eternal failure. As you say, giving voice on here has re started my journey back. Thank you.

Spirograph profile image
Spirograph

Good morning from Turre in Almeria, Spain, where I have recovered well from a broken hip, (25th October with five days in Huercal Overa Hospital, so an extremely extended holiday) missed three steps, at my nieces villa. Was thinking about your sadness, over in ‘old Blighty’. I know that if I was at home in Scotland, the dark cold days would have brought on the SAD and I would be ‘force feeding’ with carbs and sugar and even my ‘always music’ would not ease the misery. An irony, that I am ‘lucky’ enough to be here, recovering and able to get about and about, with my one crutch now. Going home next Thursday and anxious about the decreased mobility and ‘home incarceration’ because of the ground wet and/or icy hazardous. Also anxious about having the TV on too much for miserable news and sadness and reaching for more ‘comfort’ food. A good while ago I talked to my doctor about counselling, while tapering down, and coping with the realisation of my PMR/GCA ‘new life’. That was May, waiting list long, and haven’t heard back yet. 15 minutes qi gong/dru yoga, Marissa YouTube online has helped. Contacting the medical practice and getting past ‘receptionist Rachett, hasn’t helped. Don’t struggle with the pain and sadness- if your doctor is approachable, reach out. All best wishes.

Wa

Fieldofdreams profile image
Fieldofdreams in reply to Spirograph

Dear Spirograph, thank you so much for your love and support and i want to send that back your way too and hope that you continue to do so in the last few days of a warmer clime. I was recently working in Glasgow, a city i have come to love and whilst it was dark and wet there was a joy about the place. Botanical Gardens all decked out with lights (and dinosaurs :) ?) and the leaves still copper on the ground, but yes ,very slippy. if you can, dont watch the news! Watch black and white movies. i find they haven't lost their magical escapism Greta Garbo, Bette Davis, and her ilk, timeless classics, of style and strong women. yes, my GP has suggested counselling but it is an on line thing and I cant really engage with that. Sending you alllove and peace and a safe journey home.

Poshdog profile image
Poshdog

I feel for you and with you. Others have expressed so well a situation that most find themselves at sometime. I care for my autistic son, my 100 year old mother and my partner with heart failure and lung problems. I had thought my 70s would be me time but someone else had other ideas! Down to 3.5mgs pred after nearly 6 years, fat, tired, fed up and its winter (don't even like Christmas). However, after a superhuman effort I have bought a wig, going to have teeth whitened, enjoyed Bath Market with son and have bought wonderful linen sheets! My present to me. Only advice, if you have the energy, spoil yourself. Thinking of you xx

My haven!
Fieldofdreams profile image
Fieldofdreams in reply to Poshdog

Dear Poshdog, gosh you are amazing!!! How you a have coped is an inspiration to us all. your caring responsibilities are huge and yet you have still carried on. The wig helps! I got one as my long blonde locks decided to exit my head. its growing back now but like a witches frizzy mop so the wig is still in vogue in my house! Oh the bed linen looks gorgeous and you are right, if in doubt and you have the energy, spoil yourself. Im not a lover of Christmas either, my dad died at Christmas so this year mum and I are going to get lots of port in and have a duet knees up. tons of love and peace to you Poshdog. xx

Poshdog profile image
Poshdog in reply to Fieldofdreams

Thank you, all support gratefully received! Hope you and mum have a brilliant time!! Xx

MDT1 profile image
MDT1

Hey, I have nothing to add to all thats been said and I'm not GCA just PMR but also managed my weight well until very low doses and now at 2 / 2.5 have a 2nd stomach and NO energy. Full of self loathing but unable to do anything about it. Knowing I'm terribly shallow to care SO much about my weight, when I do have so much to be grateful for....but not able to stop...argh!!! Much love xxx

Fieldofdreams profile image
Fieldofdreams in reply to MDT1

Daer MDT1, it s not shallow to care so much about our weight i dont think, becasue its part of who we are I think. I know for me if I am in control of my weight everything else follows and its okay. When i am sick and 'out of control' I have 3 stomachs and loath myself so much I want to walk out of my body. Then a good day gets me back on track. Ahg. GCA and pred is a little B when it come to after effects, side effects and withdrawals. its good to know that others too managed their weight and then didnt when nearly off it. My issues too started when I got to about 2 then 1.5. My doctor in her wisdom also changed my HRT at the same time..... great. Still, we are here arent we. Probably thinner than we think and with our sight and mind in tackt even if sometimes we think we are going mad. Much love and peace. xx

MDT1 profile image
MDT1 in reply to Fieldofdreams

Thank you, thats such an encouraging reply. X

Alazarin profile image
Alazarin

I had put on a lot of weight over the last 4 years. Now off pred, I went on the fast800 diet( Michael Mosley) in July, I have lost 1st 10lb , so all my pred weight gone. Feel tons better about myself. Pain and muscle strength is work in progress though.

Fieldofdreams profile image
Fieldofdreams in reply to Alazarin

Hello Alazarin, congratulations on your weight loss thats fantastic. I have done the opposite. controlled it for 3 years, even lost weight and when i got ot 1.5 and then off it i grew a second stomach and an out of control mind. The support on here though has really encouraged me to re focus and understand that post Pred is as hard as on Pred. Love and peace.

Viveka profile image
Viveka

As well as the adrenals, the ups and downs of GCA (and PMR) take it out of us. I'm on 3mg 22 months into GCA diary and doing ok, but recently told my partner I wasn't the person I was before. I am reckoning on at least a year beyond pred to regain physicial and mental health. It sounds like you need to be kind to yourself, not expect too much but also find something positive that makes you happy in the short term to turn the corner.

Fieldofdreams profile image
Fieldofdreams in reply to Viveka

thank you so much Viveka, yes, i didnt realise that after Pred is as hard as during! I hope that you are feeling better as each dap passes too. thank you so much for your love and support.

FRnina profile image
FRnina

I recognize all that! Agree with PMRpro that you MUST take care of yourself first and THEN those you care for (like that advice when flying: your oxygen mask on first before you help your child put theirs on) Find the right moment to tell those you care for that you need some down time. I know it's not always easy, but it's a conversation you must have to set some clear boundaries. Promise yourself 1 hour rest alone after lunch. Take hold of your food intake plan. As PMRpro says, weight gain is also just age-related, ill or not ill. Last (and most difficult) learn to just say NO before you feel out of control. Remember your dancing days and have a twirl when out on a walk. Bon courage! as they say round here in France.

Fieldofdreams profile image
Fieldofdreams in reply to FRnina

Oh thank you FRnina for reminding me that i should still twirl. Its funny isnt it, i seem to have gone down a 'serious' route since GCE began and have forgotten how I used to have fun. I'm not very good at saying no but with encouragement and advice on this forum i think it will give me courage. Thank you FRnina, off to twirl in the garden! :)

Blearyeyed profile image
Blearyeyed

Hello ,Field of Dreams , I've always loved your name .Let me say first , well done you , you might be feeling down but you are still strong enough to be able to ask when you need a little help.

I'm post GCA , but I have a number of other health problems which will never go away , the upside of that is I'm able to give lots of tips for coping to others for a wide variety of problems.

First thing out of the bag of tricks is a question.

Could you remind me , do you have osteoarthritis or RA or another type.

You may find now that you aren't getting help to relieve the inflammation of these , a bonus from the steroids , and you could need to talk to your GP about trying pain relief , antiinflammatories or medication for that.

I see you are taking a number of vitamins and minerals which is great.

You could , however , depending on your needs , how much you became depleted , and how much you do now , still have low vitamin or deficiency issues , even if you take oral supplements and have a good diet.

Vitamin deficiencies, especially Vitamin B 12 and Folates , can cause havoc with our metabolism causing other deficiency , sugar balance and insulin sensitivity as well as causing extra pain , chronic fatigue and sleep problems and thyroid function , it can start to cause weight gain in funny places , extreme appetite for fat and sugar and insulin resistance.

I put on over a stone in 6 weeks with B 12 deficiency anaemia , in funny places too, as B 12 weight gain can look like steroid and diabetic weight gain also affecting the face and stomach . An irony , as I lost weight in steroids!

So , my advice is to request a GP appointment to also request a baseline of blood test results for Diabetes , Vitamin D , Ferritin / Iron panel , Folate panel , Magnesium and Vitamin B12 and a full blood count , full liver function and kidney function panel if you haven't had these in the last three months.

If your GP resists tell them you are trying to be proactive about dealing with your Self Care and want to know if any of these are low or deficient causing you extra symptoms.

When you know when your appointment for the blood tests are stop your oral supplements until the test as they can effect the accuracy of the result.

You will feel more tired without them but it will be worth it to get answers.

If you are Vitamin B 12 deficient ask to start the loading doses of B 12 Hydroxocobalamin injections then go on the three month programme explain you were already taking supplements for that and they clearly were not working enough so you need the injections from now on.

You don't have B12 tests after but getting a Pernicious Anaemia test is advisable.

The up tick in energy , reduction in muscle weakness and joint ache and change to appetite is actually huge on the B12 injections and increased Folates.

Vitamin deficiency or low vitamins also destruct your mood as it effects your Autonomic Nervous System function, causing all sorts of problems with Fatigue , temperature control , digestion , sleep issues and pain.

I am not surprised that you suffered tendonitis on the steroids. If you were once a dancer part of your talent could have come from flexibility that could have been caused by some level of Hypermobility. Hypermobile people , or people with Ehlers Danlos like me , suffer far more tendon problems , especially while taking steroids or with issues like reversible insulin resistance.

That is because steroids and insulin changes cause a decrease in good collagen production and muscle shape changes making the connective tissues that create our muscle , tendons and ligaments less elastic . Tendons can get like snapped knicker elastic and you can have more injuries because if this .

So , it might help to take care with your ankle , knee , wrist and shoulder movements until it is settled . Gentle strengthening and flexing exercises will help but the best option , from my experience is to get fitted for good shoes that help your posture for exercise and in general and to wear well fitting ankle or wrist support during more physical activity. The added support helps improve posture and reduce overextension.

Don't keep them on all the time though , just when you are up and about doing activity. Do some gentle exercises for ankles etc without them in a chair.

Getting back to the diet that kept you well maintained during GCA will help. A balanced nutrient rich Mediterranean style diet, good hydration , the right supplements after testing , limited refined sugar and artificial sweeteners or processed foods , and sticking to a calorie amount less than you require each day for energy will bring results in the end when your nutrient balance is back. Weight swings can occur to everyone while they are still in the recovery phase after medication.

People forget they may be off the medication ,,and the illness might have waved goodbye, but it all took a toll on your body and it's not back to its old self yet.

It can take take as much self care and patience helping the the body to return to normal after you reach Club Zero as it did when you were ill.

The body recovers differently for everyone , and depending on your other health issues it can take a year , or even as long as the disease itself , to be 100% match body fit again.

We can even see that after a Flu or for people with Long Covid , but just as with these things , we often expect too much from ourselves , too soon and as soon as symptoms have gone expect to get straight back on the horse running The National. It can be a big nightmare for you poor tired body that screams out in pain , and a bit of a bash to our mood when we get hit by the reality.

Don't be afraid to ask for extra help with your caring abilities or explain your need for work flexibility. Be honest , simple and positive about it. Explain you had , had an illness for a number of years and you are just recovering from it but the recovery is making things hard at times so you might need some help with practical things . Most of us will be amazed and in awe of how well you did if you continued to work and care for another whilst having GCA , no wonder you are pooped!

Trying some extra pacing , balancing rest and activity, and including taking a look at your sleep pattern , relaxation and breathing can all improve your mood , Fatigue and abilities too. This doesn't just help reduce Fatigue and Pain but reduction of both good activity and bad event Stress on your body is the best illness prevention.

With adjustments and checks you should in time be able to do as you were and continue working but while keeping your body at a health level that can help defend you from illnesses returning or getting worse.

Hope these tips help , along with the wise advice of the others , but if you still need help keep writing back , we will get you there. , Take care , Bee

Fieldofdreams profile image
Fieldofdreams in reply to Blearyeyed

Dear Bee, oh my goodness thank you so much for taking so much time to get back to me. Your advice is invaluable and i will review my supplements as well as looking at my bloods. The doctor has agreed to day to do a blood test for cortisol which if my adrenals have not kicked back in may be a factor. I will also ask for a full count.

I do need to look at my sleep pattern as it is shocking! My exercise regime and eating for me go hand in hand. if I even put on 2lb I want to hibernate and feel 'too fat' to exercise but yoga is the only way I keep myself going some times. But sleep, is neglected and I need to manage my work life balance better.

I took better care of myself when I was ill than I do since coming of pred and its good to be reminded that it can take up to a year - i hadnt reckoned on that. As PMRpro said, you have to embrace a new normal and thats tough.

As a dancer osteoarthritis is inevitable in a way esp with my family history of the disease. Its hard not being able to stretch as i used to - yes, all my ligaments took a battering on steroids and still are doing, i have to be careful how much i do.

I am going to crack on now and take your advice and the advice of others on this forum. Its really bucked me up having such lovely support. Love and peace and good healthy days to you too Bee.

Stella3 profile image
Stella3

I also had GCA and I feel so bad for you. I was on prednisone for four years. I was very nervous to go off it. I did it so slowly. I did not have muscle pains but I wondered if you are on a statin for high cholesterol as that can cause muscle pain? So sorry that you could not mention having GCA to your employers. It sounds like you are trying to take care of yourself though. Perhaps you could join a meditation group. I have found that very helpful.

Fieldofdreams profile image
Fieldofdreams in reply to Stella3

Dear Stella, your idea of joining a group to meditate sounds like a good idea. I think I am going to research that. My problem is that I work away a lot for work and cant follow through on courses or be regular - bit disruptive for social life etc etc, but I suppose I am used to it but maybe that irregular lifestyle needs to change. 7 years off retiring age so maybe meditation is the way forward. I do do yoga. Love and peace.

potterylady profile image
potterylady

Oh Fieldofdreams, I feel you! I've put on weight too--2 pounds a month in the last 5 months since starting prednisone. You mentioned you're a dancer and that you are pulling ligaments now. I have EDS which causes me to dislocate my joints and tear and stretch my ligaments from being over-flexible. You may want to look it up because there are things you can do to help. It's Ehlers Danlos Syndrome. Yeah, this whole thing is so hard. I don't look like myself anymore, as I'm sure you don't either. Puffy eyes, moon face, turkey neck... Plus I walk weird due to hip pain. I was also athletic and so strong. It's so sad and hard to face this different life. I'm glad we can at least support each other on this forum. Sending you love and peace and hope for better health.

Fieldofdreams profile image
Fieldofdreams in reply to potterylady

Dear Potter lady, thank you so much for your notes of encouragement and love. I am sending them right back atcha. I had a 3 yr journey with Pred and during that time my face looked like a melon :) my eyes popping out of my head. Imanaged with a strict diet to keep the weight off, but its after Pred that I am not really coping... no one tells you it will be just as hard afterwards. But , i am still here with my sight unlike some people who have suffered much worse than me so i am counting my turkey neck wrinkles and thinking I am lucky. A day at a time. Love and peace to you.

potterylady profile image
potterylady in reply to Fieldofdreams

Thank you. I agree that we're lucky we have our sight. What a shock though, this whole thing is. I didn't know it would be just as hard after getting off Prednisone, thinking that I would have to be symptom free at that point. So, no going back to our old "normal" then. Good Lord. It is hard to keep it in perspective. xo

PMRpro profile image
PMRproAmbassador in reply to potterylady

It takes time - it isn't a case of taking pred, reducing the dose, stopping and immediately back to where you were before, the recovery continues after stopping pred. But most people who have recovered from PMR and GCA say that after a year things are pretty much back to normal.

In the meantime - cutting carbs drastically will help the weight gain problem!

potterylady profile image
potterylady in reply to PMRpro

I look forward to hopefully being back to normal some day. And yes, I really need to keep track of the carbs. I was eating more to keep the stomach acid at bay, but now that I'm taking the anti-acid I can try to eat more normally, and reduce the carbs!!! Thank you!

PMRpro profile image
PMRproAmbassador in reply to potterylady

There is evidence that cutting carbs can help reduce acid problems.

Wallysma profile image
Wallysma

Hi there. I am do glad you came here. I am so sorry.you have so many things going on. You have reached a great goal but feel you can't have the party yet! We all live our lives working towards.no.pred...it's been a focus. It signals change and success....but you feel bad, your body.has changed,.in ways that upset you. Yes we do understand. I did not think.I could get bigger...well guess what I am! I know how you feel. But I fo know from other experienced it will keep changing.and you might be able to.have the.party.eventually if you want to. So let me be very American here. I learned a long time ago trying to get.used to living with other autoimmune conditions that I need some organic help. Those along with the stress and physical nature of my.jobs put me in burn-out. I LOVED my work but it was all I.did. Being sick and working isn't easy....and as conditions got more complicated.and I had to care for my.aging aunt who raised me I was crispy fried burned out. Textbook burned out. My rheumy suggested an antidepressant because when you are under non-stop stress the chemicals in your brain get depleted. These meds help. I went on cymbalta for help with pain as well it did nothing. Then I went on zoloft and it really helped and I had no side effects. So you might consider that.

My other question is whether you have had your thyroid checked. If not I would ask them just to make sure.

But you got lots of information and suggestions, good questions, lots of good wishes, shared stories, love and hugs from everyone. I join them in wishing the best. Keep us posted. We all get it. I had to.hire someone.to clean my yard up of dog deposits weekly. THAT is one of the most.depressing things....but I can't.do it...back spasms and my arms work in this strange way....after.some thought I kind of feel like a princess......🤣. Ya gotta laugh. "These hands don't touch........you get the idea.

So please hang in. Be.nice to the.lady.in the.mirror or window. We like her!

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