What advice would you give someone who is on long-term high dose steroids?

[happytulip]

Health unlocked has invited me to join this community so its my first post.

I am on long-term high dose steroids due to multiple auto-immune disease.

I used to be a size 8 prior to being unwell and have always had a good diet, I always walked past the cake shop. I'm now a size 14.

I go through periods of being bed bound during a flare or hospitalisation with sepsis.

I don't eat refined sugar, starchy carbs. Cake, biscuits, fizzy drinks don't even enter my house.

I have chronic pain but push through as much as I can to ensure that I excersise gently everyday or every other day for at least an hour.

The most sugar I have is via my morphine syrup.

I am slowly tapering my steroids.

I don't like my weight. I don't like my body shape but that's all down to meds and chronic health problems that I face with grit and determination each day.

So, after being invited to join I would be grateful for any suggestions.

Thank you

[Forgetmenot2468]

Hi. I myself have just joined this evening and like you I also have autoimmune diseases. I really need to lose weight and in doing so I'm hoping my symptoms will be a bit better to deal with. I'm also on steroids much of the time for the pain and also Dmards. Hopefully we can follow each other's tips and lose this weight and feel healthier. Lisa

[happytulip in reply to Forgetmenot2468]

Thanks Lisa, I think its a question of "not one size fits all."

People on certain meds with rare diseases have different individual needs regarding diet. For example, its easy to say "eat fat" but if you are like me and have gallstones due to long-term pred, then you do it fat and go into a flare but cannot have your gallbladder removed because of immune suppression, then the advice is confusing and mixed.

[Forgetmenot2468 in reply to happytulip]

Yes I totally agree and hopefully we can gather some tips and advise along the way from others that may have similar health issues and in turn may help us to shed the pounds. Lisa

[happytulip in reply to Forgetmenot2468]

May I ask what dose you are on and how good your mobility is?

[happytulip in reply to happytulip]

I've been on between 20-15mg for 4 years, sometimes needing Ig IV emergency doses. My mobility fluctuates from being bedbound for weeks to being able to do short, gentle walking.

[Hidden in reply to happytulip]

I too have several autoimmune conditions and take 20mg of steroids a day(plus a host of other meds , I have to take 100 mils injection of steroids sometimes. I have put on 3 stone since being on steroids. I have been told that steroids don't put on weight as such but they increase your appetite. I do find that I crave sweet things now and I never used to be interested in them,I also crave salt. I am a vegetarian.I have times when I am completely exhausted and I haven't done much and sometimes a burst of energy. I feel isolated,that no one understands or want to understand my conditions ......... Really struggling to be honest with motivation, in spite of knowing life would be so much better if I lost this weight.

[Forgetmenot2468 in reply to happytulip]

If the flare is bad I generally start on a 20mg tapering dose over 6 weeks and other times 10mg. I have RA and sjogrens and was only diagnosed in July. My mobility is not great as my hip and knees are badly affected. I'm ok getting around at home apart from stairs but going out is an issue for me. Some days I do manage to walk my dog for around 15 minutes but that's on a very good day. I'm still coming to terms with all of this as it's very early days. I am also 4 days post shoulder surgery which is my 5th shoulder op in 2 years due to arthritis.

[moreless Administrator 7 stone in reply to Forgetmenot2468]

Hi and welcome, Forgetmenot2468

I hope that you'll also follow the links that I've given happytulip and will become an active member of our forum.

Wishing you success

[Craftyperson in reply to Forgetmenot2468]

Hope you can get there too as just said to happytulip and maybe you could try dietician too

[healthmp9 in reply to Forgetmenot2468]

I came off steroids as the side effects, was worse than the illness.

There are alternatives, anf that was in the 70's. I'm still here.

[moreless Administrator 7 stone]

Hi and welcome, happytulip

Firstly, let me say that none of us is medically trained and I wonder if the invitation you received from Health Unlocked was computer generated, in response to you mentioning weight gain/loss.

That's not to say we won't try our hardest to help you lose weight and feel better about yourself.

Have you spoken to your GP about your concerns? Maybe a change to a different steroid would be possible?

It's likely that a lot of your weight gain is fluid. A cursory search has led me to advice about decreasing sodium intake and increasing potassium and water intake. Is that something you've read about, or tried?

Do you still eat bread, cereals, rice, potatoes, pasta, root veg and legumes? These are all high carb, even the wholegrain versions and will encourage fluid retention.

Do you snack? Even healthy snacks will cause raised insulin levels, so reducing the number of times you eat a day may help.

I hope that you'll find some inspiration/advice here, that will help. Follow this link to our chat thread and a list of all the activities we run. We've found active participation to be key to success, especially with our weigh-ins and Daily Diary healthunlocked.com/nhsweigh...

To make navigating the forum easier, we've put all the information you'll need in a newbie pack and here's the link

healthunlocked.com/nhsweigh...

Please take the time to read it carefully, so that you're able to enjoy everything that we have on offer.

We ask that you also read this important information about internet privacy and security.

healthunlocked.com/nhsweigh...

Wishing you all the best for 2019

[Norfolkmummy]

HappyTulip, welcome to the group. It is amazing how many people on this group have long term health conditions and medications that affect their health and weight, myself included. I don’t have an answer for you right now other than to say that I had a long dose of steroids (short compared to yours) and I hated what it did to my body. All I can say is you have come to the right place for peer support. Everyone is struggling with different issues yet I have seen some amazing results that people have achieved on their weight loss journey hand I have been only doing this a week. So keep reading, Chatting also join a weigh in group for further support! Good luck on your journey xxx

[Dottie4444]

Hi there

I know a lot about lupus and that it’s among the Autoimmune diseases. You obviously know a lot about a disease that effects you.

This is a forum for WeightLoss and will give you quite good advice on that. Weight loss is about eating healthy and doesn’t have to be about salads. The same as exercise. Be guided by your own knowledge and what is right for you and your condition. Weight loss is about reducing calories anyone can do this but you may get extra assistance from your practice nurse at your surgery who will understand your condition.

Exercise For you could be about Yoga or Tei Chi, something gentle.This helps with breathing as as strengthening muscles.

You were obviously fit and well once and now your lifestyle has changed 360 degrees around. There is a grief reaction to such a change and it’s not easy to come to terms with it.

Trust your own instincts and what your body is telling you.

Try something new and if it’s not right then don’t be upset about giving it up.

Even with the NHs you have to fight for good care and good treatment. I know cos I spent 30 years working on it.

You may find the help you want on here but the basic of losing weight are still the same whether you are steroids or not.

A

[Craftyperson]

Hi and I can't personally say gone through similar but my partner was on steroids for 20 years and had same problems. He did find that after a few years it did settle down and was able to loose some weight. So maybe you will too. Can't add much more than what others said other than asking your GP if will refer you to dietician as they will know more about what best for your condition. I wish you well with your weight loss

[Lytham 3 stone]

Oh sorry you have so many challenges at the moment. Would you like to join our Easter challenge to lose half a stone by Easter? Just post your weight on the Easter Countdown challenge post, hope to see you there! I will attach a link for you

healthunlocked.com/nhsweigh...