weight loss: Not looking to lose weight - I put this in... - NRAS

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weight loss

Brychni profile image
16 Replies

Not looking to lose weight - I put this in the search box: weight loss, losing weight and it seems the only experiences people have is with being overweight and trying to lose it.

At first I wasn't that concerned as my weight has always gone up and down..recently, over the last year I have hovered at about 8 stone 2 sometimes up to 8st 5 and during the Pizotifen experiemnt almost 8 st 3/4. when I stopped it went back to a more normal 8, 8st 1 or 2.

Basically I know what's normal for me.

Lately, over about 4 or 5 weeks it has been on a downward trajectory and I am currently hovering at 7st 13, 7st 12 and I am not eating anything different. In fact I have slowly started to add some carbs - even the occasional ice cream on a day out or a croissant with my coffee (daring!!) and yet this is slow weight loss is not normal for me. The last time I was this weight was when I was a teenager.

Does anyone know if this is normal for Inflammatory Arthritises? Has anyone else had this? Is it too soon to worry or report to rheuamtology?

My pain symptoms are now still very much in my right leg )quite sever several times a day) - all joints and bits in between and all the other usual niggles - but my cervical spin (neck) which has always been bad on and off and below in the thoracic area have been really bad for about a week now. Aches, stings, feels sore and it's very tender to touch the vertebrae. Very stiff at night, in the morning, pretty much all day. Lower back SI joint has similar issues but not as painful.

Any input gratefully appreciated!

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Brychni profile image
Brychni
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16 Replies
AgedCrone profile image
AgedCrone

You don’t appear to have lost too much much weight....maybe 6lbs? Over a couple of months that is not huge is it?

I lost over 20lbs in about three months with one drug I was on.....I just had no appetite.

If you keep losing weight check with your rheumy nurse...but if overall you are feeling well......until your RA is better controlled.....there is probably not too much to worry about....just stop weighing yourself every day. .....in fact I bet 75% of people on here would love to lose 6 lbs.....but you should be aware we all yo yo by a few pounds daily!

Brychni profile image
Brychni in reply toAgedCrone

Yes, thanks AgedCrone - I'm still within a normal range. But it is still low for me and my appetite is normal. Out of interest, which drug was it that caused your weight loss? My rheum nurse has warned me that MTX might cause nausea and that might result in even more weight loss. Just off to get my prescription now.

AgedCrone profile image
AgedCrone in reply toBrychni

I took Mtx very successfully for 7 years.....no nausea , no weight loss or any other nasty side effects..

If you are over anxious & overthink too much ....that is quite likely to make you lose a couple of pounds for no apparent reason.

So convince yourself Mtx is going to work for you...a positive attitude is often half the battle with getting RA Meds to work.

Brychni profile image
Brychni in reply toAgedCrone

no anxiety or depression: fury or crying. I don't dwell on things! I'm a fact finder. The reason I worry about mtx is that for all the people who have had positive experiences there people who have very bad experiences.

Just been reading the posts about the hospital who told one patient to take mtx on a Monday as part of some experiment and th replies about having to take 2 days off to recover from the taking the tablet fills me with horror. I'm not in a position to take days off.

AgedCrone profile image
AgedCrone in reply toBrychni

Well don’t read stuff like that then Brychni! In reality the majority of people who do well on methotrexate just gratefully get on with their lives .....they don’t stop and think ‘I must write this down and tell everybody I feel good‘.

But human nature being what it is .....if a drug upsets you you’re going to want to tell everybody.....& ask for help & advice.

We all have our own journey to find our own drugs ....so concentrate on how your drugs react with you.

If reading about what happens to other people has such an impression on you.....as I say don’t read it...unless you can just think. “Oh that happened to them...poor thing”......then move on.

I took 10 methotrexate tablets a week + 6 folic acid tablets and swallowed them like Smarties.... I felt no different the day before I took them from the day after I took them....if you keep reading what happens to others - concentrate on people who feel that way.... But as I say not many people stop to sit down and write that .....I know I didn’t,

KittyJ profile image
KittyJ in reply toBrychni

Brychni I think you need to remember that peoples tolerances are very different. Of course people are going to come on here and tell everyone about the awful experiences they’re having, how ill they are etc that’s why people seek out forums. But you could have the same experience and carry on with your life, it’s like people’s tolerances for pain are different too. This is why you can’t really take other peoples experiences and think they are going to be yours, always looking for side effects. I was really sick and wiped out when I was on full dose mtx but I still went to work and just collapsed when I got home. I must add there were no places like this then, I didn’t know any different but to carry on. The only way you’re going to find out is to take it yourself and not look for problems. Expect the best and don’t dwell on it or you’re never going to take any drug. I’ve never hesitated taking any drugs because at the end of the day I don’t want to risk getting any more damage to my joints than I already have and I never want to go back to the days of early diagnosis because I hesitated .

Empress30 profile image
Empress30 in reply toAgedCrone

I agree most people would love to lose a few lbs. Just ask your doctor if you are concerned. But be positive with your meds.

AgedCrone profile image
AgedCrone in reply toEmpress30

I think this was meant for someone else?

charisma profile image
charisma

Some people lose a lot of weight with Adalimumab. But weight loss is something to check on if you feel there is no explanation for the change.

Weight gain is also usual with steroid drugs, even if a small dose over a prolonged period.

Hope you can find the reasons and not lose more!

Brychni profile image
Brychni in reply tocharisma

thank you x

Empress30 profile image
Empress30 in reply tocharisma

I gained 80 lbs on steroids. It depends on the person. I lost most of it as I lowered the dose.

cass24 profile image
cass24

I lost about a stone just prior to diagnosis with RA. Initially I put it down to the stress I was under at the time (which I personally suspect may well have triggered the RA itself) but I've since learnt that untreated/unmanaged RD can also cause weight loss...

Certainly since my symptoms are slightly better under control, I've stopped losing weight and even put some (though not all) of it back on.

If it's not down to the drugs that you're on, I guess it's possible that the same might be true for you and that it's the RD that's causing the weight loss, in which case, hopefully once you get onto the right level of medication, things should improve although if not (or you're worried that your weight is really getting too low)... well... I'm sure I don't need to tell you it's probably worth mentioning it to your medics ;-)

Brychni profile image
Brychni in reply tocass24

Hi cass - thanks for that x. Yes, I've been wondering about just leaving the rheum nurse a message just to log the weight loss in addition to the spine pain. I know I just have to get on and take the mtx so I might just let them know.

cass24 profile image
cass24 in reply toBrychni

As far as I understand, any weight loss that might come from taking mtx is a result of eating less IF you're feeling nauseous so as long as you find you're still wanting to eat "normally" then that in itself really shouldn't be an issue.

And indeed, if you find the mtx helps with your symptoms (as it certainly does for me and so many others), you may even find it actually reduces the weight loss you're experiencing.

Good luck with the mtx... I know it's scary and I spent weeks finding any excuse I could to delay starting but once I'd finally bitten the bullet (or should that be the pill?!), it really wasn't half as bad as I'd feared and once it really started to take effect, my only regret was not starting to take it sooner ;-) x

UprA profile image
UprA

I too have lost like 15-lbs over the summer without trying. My rheumatologist wants me to keep an eye on it--but does not feel it is related to RA

Pinkypie2018 profile image
Pinkypie2018

I lost 2 stone in a year after being diagnosed but the medication really affected my appetite and I know I wasn't eating enough. My eating has improved now but I'm struggling to gain any weight.

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