weight gain

[chacha700]

i'm on dmards all the usual for RA. I've managed to put on just over 4stone I need to lose this as my blood pressure is sky high. something I've never suffered from before. I'm being weaned off steroids at a very slow pace which suits me as this is the second try. any useful comments will be appreciated

[allanah]

I was ah I could say yes. Same as you , verybinactive, steroids, weight gain . My doc put me on a weekly exercise class but I flared and missed so many I got told off by the gym lady. Swimming is good and hydrotherapy through the hospital, flared again so they stopped( and I found it awful in normal pools can only manage heated ones and bought a bigger cossie as it was hard to get on and off and I was tired out .

I have found that the new electric light weight bikes are good, you don't need any effort to cycle and you get fresh air , but didn't help my weight and I bought a special wide saddle for my hips .

Annoying isn't it !!!

[chacha700 in reply to allanah]

Thanks for your tips

[Eiram50]

I've been wondering about this. With biologics, all the other stuff that goes along with it my weight didn't fluctuate at all. Since beginning Mtx a couple of months ago, I've noticed a significant change in my weight- about a stone. Feel like coming off it as to put on weight, especially as both hips and both knees have been recently replaced, I don't think I'd good for me/ them? If the Mtx was making any real difference , I'd think twice, but it doesn't seem that it is.

[Beaches2]

I think swimming too, if you can face it! Or how about a walking programme? Maybe find a friend to walk with and devise a programme of regular walking......you can use the health app if you have an I phone to monitor your steps.

Food wise.......pile your plate up with veggies.....that's what I do so I'm not hungry 😊.

Good luck, hopefully once your off the steroids things will be a lot easier for you.

[AgedCrone in reply to Beaches2]

I am one of those irritating people who can lose weight reading a diet sheet, but I know people who have very successfully lost weight slowly just by using a smaller plate ...it seems if you are liable to gain weight you tend to finish what is on your plate ...so if the plate is smaller........

It might work!!

[chacha700 in reply to Beaches2]

Swimming I do but I'm still putting on the weight!

[Gigi71]

I've noticed since going on mtx and Naproxen last year, I have put weigh on. Can't blame Humira, been on that 8 years and steroids for 32 year. I have a good diet, gluten free low sugar, no processed foods. I am hungrier though. I am now making sure I cut down on portion sizes. I do eat out for lunch quite a bit, I can't really blame that, as there is a lot of choice to eat the meals I like.

[oldtimer]

I was on high dose steroids to start with and have managed over the last ten years to reduce - once to nothing, but only for 10 days! I'm now on 5mg regularly, although again just been on 30mg when I developed pneumonia.

I put on 14KG while on high doses despite keeping very carefully to portion size as I was aware from previous episodes that I have no sensation of fullness on steroids and could eat steadily throughout the day. Since reducing, over the last two years I have reduced my portion size more, don't eat between meals (well, hardly ever) and have lost 10kg of the 14KG. Still hoping to get the rest off.

I can't do a lot of exercise, but I do circle dance and do aquafit and walk short distances.

[AgedCrone]

Well done OT. I 'm the other way ..I'm never hungry...writing this at 1850 I have only eaten one bowl of granola with blueberries & a boiled egg all day, plus a few cups of tea!

I'm about to eat steamed salmon with broccoli & potatoes ...but if next doors cat came in & ate it I wouldn't be bothered!

All this started after taking Leflunomide for 6 months!

Just can't win cant we?

[medieval-ali in reply to AgedCrone]

Hi leflunomide is known for weight loss... I've been on it 10years and still waiting for mine to kick in. Lol

Good luck with it, apart from a few low blood cell counts and lowering my immune system which makes you susceptible to bugs, it's worked well for me.

Hopefully this symptom of yours will wear off.

Alison

[AgedCrone in reply to medieval-ali]

Hi Alison ....I should have said .....I stopped the Leflunomide after my weight loss got too much, plus I was starting to get the same horrid side effects I got with Mtx.

Those side effects have mostly faded away, but my appetite hasn't returned. I was never a big eater, but now if I do eat more han usual I get to the stage I just can't swallow food. It's not a real problem, except I do get fed up with people remarking how little I eat!

I started RTX infusions last October & so far it seems to be working.....no pills to take & hardly any pain ...after being on this RA roller coaster for 18 years that will do for me!

I have a check up tomorrow & will see what my bloods look like & will learn if I go on to a second set of infusions.

AC

[medieval-ali in reply to AgedCrone]

Its so hard this disease, you've had yours the same amount of time as me. 18yrs this year. People and loved ones can be cruel and not even realise they're doing it.

I know when I'm on a flare im super sensitive to comments or lack of them that my poor lot can't win sometimes.

You can't force food down that will just make you sick.

Good luck with your results tomorrow hope you get some relief from the pain soon.

Alison

[AgedCrone in reply to medieval-ali]

I so agree about comments from people who have no idea what we put up with.

At the moment I am ignoring a very old friend -all because she said " It can't be that bad or you'd be in hospital"

It was the straw that broke the camel's back! I'm probably cutting off my nose etc, but it was just the last straw.

AC

[medieval-ali in reply to AgedCrone]

Oh my that is cruel, it's cutting comments from people we love and trust that hurt the most. Just when you need their support most to.

I tend to stay quiet now, although I have waited till that same person gets a headache, then replied in the same manor as I've been dished out

My mother in law was the worst, now she has it, no one now could possibly be in as much pain as her.

You just can't win sometimes.

Hope you can forgive your friend soon, on another day you may of been able to deal with it better.

Alison

[AgedCrone in reply to medieval-ali]

You are right, but as I say it was the last straw.

If the friend concerned breaks a fingernail it's the end of the world & I just snapped inside.

She keeps emailing & I do reply but with little enthusiasm. I guess I'll get over it one day!!!

[medieval-ali in reply to AgedCrone]

I can understand your reluctance to respond.

No one except those who have RA understand the pain, tiredness and other struggles you have this disease.

Their ignorance is our bug to bear! Just wish some people would put brain in gear before opening their mouth.

I get ill everytime I fly like serious chest infections and I have friends who just don't understand, I think they think I'm making it up or exaggerating they make me feel bad as I won't now get on a plane! The last time we travelled together they had the worst cold they'd ever had it lasted 2 weeks! It took me 3months to recover. They now say things like just get a face mask! I avoid them now and its effecting our friendship!

I feel your disappointment.

Alison

[AgedCrone in reply to medieval-ali]

I was long haul cabin crew for 20+ years, so to me flying id like getting in a bus! But now , I & a lot of ex crew friends are the same as you & get colds & sore throats after flying.

One trick we use is Vaseline in your nostrils. It's probably an Old WivesTale, but it's supposed to stop germs getting into your respiratory system.Seems To,work for me- I'm flying in a few weeks so I'll see what happens this time!

I now tell friends who have colds etc I love them dearly, but Stay Away until you are better!

Age brings privileges & I don't bother if I upset them.....I'm the one who will suffer if I catch their bugs!

[chacha700 in reply to medieval-ali]

thanks al9son

[Jefflin in reply to AgedCrone]

I lost about 8 kg on Lef. In 6 months. Had to stop due to liver, and now on Pred taper. I'm starving all the time! Forgot what an appetite was

[AgedCrone in reply to Jefflin]

I lost about 13kg. I'm 5'5" & was size 12/14 & went down to size 8! I am now 10/12, & after over a year still have no appetite.I've had all sorts of tests & there is no gastric problem, so it must have been the Lfl.

I think the Pred increases appetite doesn't it? I can't take it as it really disagrees with me....but I give up on what causes what with RA drugs.

[Jefflin in reply to AgedCrone]

Yes I've heard that pred increases appetite too. And can verify this 😀

It also makes me feel anxious and weird, really restless and short tempered. Hard to sleep. Fortunately (for my family!) it's short term for a month.

I quite liked no appetite on the lef, but I think I probably ate too much rubbish because I could. I'm more careful lately, and feel healthier.

Drs always say "oh no it couldn't be the medication causing ........ " then I would Google and 23577 other people had the same side effects!!

[AgedCrone in reply to Jefflin]

My Rheumy immediately said it was the Lfl causing the weight loss.As we see here it has caused it to many.

In contrast a locum GP I saw had never heardof it & said it ' Couldn't possibly affect appetite'!

I honestly thought I was ' losing it' Big Time on oral pred. I was only on about 5mg a day...when I called my Rheumy & told him how I was feeling he took me off it immediately & I returned to normal (?) within a week. I will never take it again.

It's a cheap nasty drug that sucks people in & they get a false sense it is helping them, but from the posts here I don't think so! OK that's only my opinion ...but no Pred for me thank you!

[Jefflin in reply to AgedCrone]

Yes I feel a bit unhinged on the pred. Down from 60 to 40 mg for a week then slow taper.

I feel a bit angry and irrational but luckily my husband is fantastic and I don't have many demands being made on me currently. So I can cope. I had to take it due to severe uveitis.

I'm starting humira in a few weeks 😀

[AgedCrone in reply to Jefflin]

Hi Jefflin, , I have never taken humira so I can't offer an opinion, but I don't remember hearing many bad comments on it here ..but as I said unfortunately there is no rhyme or reason to what effect any drug will have until you have tried it.

On Pred I didn't know if I felt angry or irrational...I just didn't know what to do. I'd wake up in my own bed & wonder where I was, then when I realised I couldn't work out what to do next....like get up!

It is definitely the worst side effect I have had on any drug.! Never again.

Hope the hum it's is a success!

AC

[medieval-ali in reply to Jefflin]

I took humira for about 8weeks, had a few adverse side effects, look carefully at the research and reviews. Do your homework, that's all I'll say.

There are lots of people however it works for. Good luck.

Alison

[bradfordjoanna]

Hi I put weight on (6 kilos) while on tablet steroids. I could eat for England Just got it off but took ages. And so boring.

I find protein (boiled eggs and lean meats ) and veg best for keeping me away from snacking. Smaller plates have helped too. I try to exercise twice a week and walk a bit but I don't think it gets the weight off just good for keeping going. I know they say you shouldn't but I weigh every morning - it helps my mindset. Good luck

[AgedCrone in reply to bradfordjoanna]

As you may have read I think Oral Pred is the drug from hell!

I don't know how much I weigh....I just know vaguely from my waist band if I'm up or down !

I still have some of my size 12/14 clothes & occasionally try on an old favourite to see if I could possibly wear it...so far no way!

Luckily I went down to Size 8 in the summer time so could manage by buying cheapie T shirts & trousers, different story with winter clothes though! But I didn't do a TM & buy £995 leather trousers!!!

I've lost a few kilos again over the last 6 weeks as with only one arm working I have lived on steamed food or ready meals...even though the plaster is now off, I can still only open a bottle by wrapping it in a T Towel & holding it between my knees! (Or running to my neighbour, but I don't want him to think I drink a bottle a day ( I don't!)

I still can't grip with my left hand at all!

[Gigi71]

Just to add, take a look at the Zoe Harcombe diet on line. Stop counting calories and start losing weigh. I lost weight on this and changed my eating habits. Levelled out my bp too. Good luck.

[Simba1992]

A diet without gluten, dairy and suger will normalize your weight. and bp very quickly. Be sure to eat a lot of vegetables and sallads instead!

[Paulajolo in reply to Simba1992]

Exactly what I did. Over Christmas fell off a bit.with cake and choc. But back onto the above now and weight back to November. Pred causes sweet cravings though. Thats jard to ignore at times. I eat dark choc as a treat.