I appreciate this might be very irritating to those who are currently trying to lose weight, but I've got the opposite going on. I lost loads of weight 2 years ago during my one and only right royal flare up, but since then my weight's been stable, until recently.
I stopped Leflunomide back in May. I'd been taking it at 20 mg a day for nearly 4 months. My rheumy told me I might lose weight on it and I suppose I lost about 6 or 7 pounds in that time, no more than that. Since stopping and going back on Mtx I've continued losing weight, about another 14 pounds, 5 of those in one week.
When I saw the Bio nurse 2 weeks ago I'd just lost the 5 pounds double-quick and she told me not to lose any more. Well it's tough work but someone's got to do it, so I've been eating everything I fancy plus a wee bit more. But to no avail and I've now run out of holes in my belt.
I am not fading away here and I have a very good appetite, it's just that I can't keep weight stable just now. Flipping heck - maybe I've got a tapeworm! That would be different. I'll weigh myself daily for a while and see GP if it doesn't slow down. But meanwhile - has anyone else had this?
Well sybil, I must admit I’d love a bit of that weight loss for myself, but think you should have a frank discussion with your GP. Weight loss when you’re not trying, and indeed eating well, isn’t normal so maybe a bit of investigation needs to go on? Just to be on the safe side?
My weight seems to go up or down at times but I am not doing anything differently. I have lost weight on mtx; I think it suppresses my appetite but I am not nauseous on it. I also lose weight when I am on a biologic that is working. As I slowly become more active it seems to fall off of me. When the biologics are not working the weight comes back on. I am doing less and eating less. I have had the Rheumatologist or her nurse tell me at different times, "don't gain any more", "don't lose any more". Geesh I wish I had control over it!
I wouldn't worry about but it is interesting isn't it? I have also noticed at various times I start "pissing like a race horse" to quote my Dad the Veterinarian! I also have lost a ton of weight just peeing. I then notice everything is less swollen or puffy; like my elbows and knees or my neck. I think it is inflammation and my body is getting rid of it. It usually happens when my meds are working well and I am exercising and eating well. I wish I could make it happen all the time but I can't. When the meds begin to stop working again thinks start getting puffy all over again.
I think the rule of thumb they use (at least for IBD screening) is unintentional weight loss of 10% or more of your body weight in a relatively short period (like a few months).
If you’ve hit that milestone and are still losing, I think its worth flagging with your GP - just to check its not something unrelated to PsA or meds.
I never lost that much with tapeworm… Ha ha ha, half of you are grossed out, I hope the other half are laughing at the antics in my life! Sorry about the TMI, just having a silly moment!
Pre PsA , I constantly had to watch my weight despite eating healthily and doing regular exercise. Like you when PsA struck, my weight dropped off (well over a stone in less than 2 months) even though I was taking prednisolone. I have gained back about half of that steadily since the beginning of the year and presently seem fairly steady. I do eat fairly healthy but don't deny myself cake when ever the opportunity presents itself. My local hospital where I go for physio and 'how to live with arthritis' classes has a Costa. So I always soften the blow of going with a cake and coffee fest.
I have the same issue. I lost 20lbs when this all started last year. But I have almost no appetite. The GI doctor thinks it's due to internal swelling that makes me think I am full. I also have colon issues. The weight loss has finally stopped about 2 lbs before he hospitalized me. I have managed, by force feeding myself, to not lose more but he still wants me to gain more.
Both my GI and Rhumy are working with my PC because they are pretty sure they are connected. They just don't seem sure which is the actually cause. They are also considering a muscle doctor (brain fog) because muscle issues are also severe and complicating things.
I am no longer sure whether I have 1 disease really messing up my body or multiple issues that for some reason is suddenly (over a coupe of years) slamming me
sybil said:
That sounds fairly dramatic Robyn. Glad to hear you've gained enough weight to avoid admission to hospital. The combination of PsA and colon issues must be pretty tough. I'm just eating more than normal, more carbs etc. but it's no hardship. And today my belly does looks rounder and more flabby - and that's good! This is one weird disease.
My impression is that the majority of people with PsA tend to gain unwanted pounds so it's interesting to hear that quite a few find the opposite happens or that they swing from weight loss to weight gain.
Robyn said:
I have the same issue. I lost 20lbs when this all started last year. But I have almost no appetite. The GI doctor thinks it's due to internal swelling that makes me think I am full. I also have colon issues. The weight loss has finally stopped about 2 lbs before he hospitalized me. I have managed, by force feeding myself, to not lose more but he still wants me to gain more.
Thank you. Not sure how I feel about it all actually but I do feel listened too and I believe they are doing their best with a very confusing mess. From what others say, I realize what a blessing that part is
sybil said:
It's good that your doctors are working together. Sounds like you're satisfied with the approach they're taking but all of this cannot be easy to put it mildly. You going to keep us posted on how things progress? And I hope there is real progress and that 'thing's' fall into place and you respond well to treatment.
Robyn said:
Both my GI and Rhumy are working with my PC because they are pretty sure they are connected. They just don't seem sure which is the actually cause. They are also considering a muscle doctor (brain fog) because muscle issues are also severe and complicating things.
I am no longer sure whether I have 1 disease really messing up my body or multiple issues that for some reason is suddenly (over a coupe of years) slamming me
It's good that your doctors are working together. Sounds like you're satisfied with the approach they're taking but all of this cannot be easy to put it mildly. You going to keep us posted on how things progress? And I hope there is real progress and that 'thing's' fall into place and you respond well to treatment.
Robyn said:
Both my GI and Rhumy are working with my PC because they are pretty sure they are connected. They just don't seem sure which is the actually cause. They are also considering a muscle doctor (brain fog) because muscle issues are also severe and complicating things.
I am no longer sure whether I have 1 disease really messing up my body or multiple issues that for some reason is suddenly (over a coupe of years) slamming me
Hi Robyn, I remember you’ve been having major issues for ages, and I’m really hoping that the weekly Humira does the trick for you.
If you remember I had some major issues too about 18 months ago, and the Humira eventually stabilized my weight and symptoms. I also used steroids for a few weeks and front loaded the Humira to bring on a “remission” of my intestinal symptoms, now I only take it fortnightly.
Interestingly the GI couldn’t see much in me except minor normal ulceration on the scope, but on contrast ct scan, there was thickening and swelling of my terminal ileum, as well as vascularisation of surrounding tissues as clear as day. The swelling of IBD, without the ulceration.
I so hope you get the same results as I from the Humira
Hi Sybil, glad you have a visit to the GP next week to get things checked out. You might want to ask Dr. Google about hyperthyroidism, and check into the symptoms. The only thing I can remember is rapid heart rate, and it could cause weight loss. I know it’s scary the weight loss when you aren’t trying, lumpy throat, and with your parents history. A doctors visit hopefully will find a less scary cause.
Glad you enjoyed your holidays. Sounds like lots of fun. Please let us know what the doctor says. Mrs.D
Hi Sybil, so glad you are sleeping well. That’s a great accomplishment! I think most of the time that wouldn’t be happening is your thyroid was on a rampage. Well, a good visit to your G.P. Should snap answer some questions.
I know autoimmune illness can affect the thyroid. Mine has been low for several years,the doctor said the scan looks like autoimmune, but the blood testing doesn’t. But, I do have small nodules on my thyroid. Nothing to worry about called a multi-nodular goiter, it just goes with the hypothyroid thing.
You are always so kind and helpful to everyone. As someone just trying to figure out if PsA is what I’m dealing with, I so appreciate it. Hope you have a great weekend. MrsD
Hi Sybil, I've had the same problem in the past and never really figured out why I was losing so much weight. More recently, in the last 6 months I've lost 5 or 6 pounds also. Not because I wanted to. Partly due to a little depression, maybe a little due to having no motivation to make myself food. I sometimes have days where absolutely nothing is appealing to me. Most of the time these days I'm ok. I've started using protein shakes to help supplement what else my body may need and hoping that I can get back the muscle I lost.
It's very bothersome to try and keep weight on. Most people think I've lost more than I really have just because i used to jog and work out more so I lost a lot of muscle mass which = pounds. That being said, maybe it would help to concentrate more on what you are eating. My GP told me once that eating sugary foods would increase my metabolism and that it would be counter productive if I wanted to gain weight. I admit that was a long time ago and I may have not remembered that detail quite right lol
If you're not fading away then I wouldn't worry but talk to your GP about it. Everyone I see at work comments on my weight but my doc doesn't seem to think it's an issue. I hope I can get those few pounds back too.
Losing 4 to 10 lbs per month is considered unhealthy. Your losing 7 lbs per week!? Obviously, something is wrong. I cannot help with the potential medical problems, but I may be able to give advice on nutrition.
The first order of business, would be to figure out what you are really losing. As probably already know, your body’s weight fluctuates daily depending on how much food and water (and type you eat). It’s best to weigh yourself in the morning (after you use the restroom without cloths ). I wouldn’t do weigh yourself more than twice per week, it will drive you crazy. It takes about a month or so to get an idea of what you are really losing.
There are three things you need to know about keeping your weight stable:
Consistency
Quality
Patience
Stress is probably one of top reasons people have weight problems. Stress effects so many parts of our body, including sleep. With sleep, quality over quantity. That’s why drug induced sleep is never a good thing. I have more to post, but don’t have the time.
Good to hear you are headed to your GP, an ability to lose 7lbs a week on a normal diet definitely needs checking.
If your appetite is as good as you say, then the energy is going somewhere! you are either burning it, or not absorbing it (though that often shows up as symptoms you can't miss.... a bit like tapeworm!). Ever been checked for Celiacs?
Make sure you let us know how you go, though I realise there will be probably some blood tests etc between now and when you have some more answers :)
