Hi all, I am getting my first dose of Simponi mailed to me on Tuesday and will start it this coming Friday. I am nervous. I was on Humira for over five years when it just stopped working for me. I have been off biologics totally for over 3 months now and I just want to be on something because it’s been nothing but swelling, pain, just awfulness. It almost seems like the Sulfasalazine is doing nothing at all, but maybe I’m wrong about that. I hope this Simponi does something for me, I am beside myself with how bad this PsA has gotten over the past six months. On another note, I am a big gal (over 300 lbs) and much of that has to do with the fact that I’m inactive (I am restricted to only water exercise but have no access to the water in which to exercise, go figure) and I do have a bit of a problem with food. I am finally taking a big step towards bariatric surgery but I’m kind of scared because I’ve heard of people dying from it and I’ve also heard that many people have either gained the weight back or worse, gotten bigger. I am afraid that I will do that. I want to not do that, I want to be healthy and I want to live a good lifestyle, but my husband is not supportive of it at all - he is also overweight and he is all about eating out like 3 to 4 times a week. I will have to drastically change my life on my own. I am a bit afraid. Plus, there are some mental issues that I have with food. I was severely abused as a child and used my fat as a shelter. And I emotionally eat. I am in therapy, but I fear that I won’t be able to overcome these issues, either. I am hopeful but afraid, I guess. Um, looking for support, maybe. I’m sorry if I am tmi or something with this.
You’re in a tough position but it sounds like you’re doing everything right. Losing weight can only be helpful but things can be tough to change. I’m overweight and having a really hard time getting started. Trying small changes to get started.
Weight gain isn’t uncommon after weight loss surgery but it doesn’t have to be you. You mentioned that your husband doesn’t seem to have much interest in change. He may try to undermine your success as well. Have you talked about doing this together?
I’m cheering for you, however you can best take care of yourself.
Please research how medication mixes with bariatric surgery. You have a chronic condition with chronic pain and inflammation and the surgery may negatively impact your ability to absorb medication.
Here’s the info from just one fact sheet to get you started:
Six weeks after surgery, small pills or capsules can be taken as before. … Also you should avoid aspirin products and anti-inflammatories after surgery as they can cause irritation and ulcers. Oil-based and time-release medications may not be well absorbed after gastric bypass surgery.
Hello there Caradavin.
Good luck with Simponi. I hope it goes well. I wouldn’t read too much into the lack of relief on Sulfasalazine because while it helps some, there are plenty of us who have found it to make little impact, if any. I certainly wouldn’t be worried that it would herald a poor response to Simponi, which is just such a very different drug.
I hear what you say about your relationship with food. It’s not tmi at all. I guess being so aware of that relationship is a very healthy step to have taken. I would be very cautious about embarking on bariatric surgery, for all the reasons Azurelle (ModSupport) mentions. It seems a big thing to put your body through when you already have a chronic condition that takes its toll.
Whatever you decide to do though, we’re all here to offer support. Good to hear from you.
I am so hopeful that your new treatment works and you start to feel better soon.
I would also be cautious about bariatric surgery - it is not going to help your issues with food, just let you eat less. (Plus the issues with meds absorption above) You need help with your issues first to change the way you feel about yourself and relationship with food. Overeating can be an eating disorder just like anorexia, it’s just less recognised. You’ll also need the support of your husband, so much easier if you both try and eat healthily together.
I would recommend a low carb, good fat diet as having worked for me and my husband after many years of different diets. Have now lost nearly 4 stone in 8 months and feeling good. You can do it too, it just helps if you’re not in so much pain!
Good luck xx
I lost 100 pounds effortlessly (no hunger!) when I stopped eating processed foods, sugar, and foods that quickly turn to sugar in the digestive system. Later on I eliminated wheat and most grains from my diet as well. I did not do this all at once, but gradually eliminated foods until I was comfortable without them. It has been about fourteen years, and I have stuck with my diet and I have not regained the excess weight. I am still overweight, but not nearly as badly as before. I may lose more weight since I have recently started tinkering with my diet under the care of an osteopathic doctor. It IS possible to lose weight and maintain the loss without dangerous surgery, but the TYPES of food you consume is what is important, not the calories.
Actually, I am down 160 pounds today. --Nancy F
I did the same and lost two stone using an anti-inflammatory diet and cutting out processed foods, sugar and gluten - based on Paleo/Primal diet. It really works!
I was denied for the surgery for the second time. I don’t know what I’m going to do. I am scared. I don’t think I can do this on my own!
I feel like I don’t have much to offer, but I think I understand your fear. I’ve managed to get to a healthy weight a few times in my life, but I’ve always put the weight back on. I always thought if I had serious health issues I would just get on and lose the weight and eat healthily (and, sadly, kind of judged people who didn’t do that). Now I’m facing heart disease and PsA, and I just haven’t found the motivation to make those changes. It’s hard! Because, yes, I eat to zone out my emotional issues (or at other times, overeating feels like a spiteful kind of self-harm as well). I know I need to deal with the issues that make me need to numb out with food, but that’s a long term project and my health issues are here and now.
I don’t mean to make this all about me - rather, I want you to know that you’re not alone with it. Even if your husband can’t get on board and be supportive, you have others who understand, right here.
Maybe we can inspire and support each other
Love and care to you, wherever you are, from Australia
Amelia (@Caradavin) A belated welcome to our PsA clubhouse! There’s nobody who’s in the exact same shoes that you are, but as Rowan says, maybe we can inspire and support each other. I’m sorry that you’ve been turned down for surgery again. Have you been working on that disappointment (a pathetically inadequate word, I know) with your therapist?
Over the last several months, I have lost a modest but noticeable amount of weight. It was hard. But then again, carrying the weight around was hard as well, so I guess we have to pick our hard. What has surprised me, though, is the difference that my modest weight loss has made to how I feel and how well I can move. Small steps, my friend! Don’t think too much about how much you have to lose. Think about losing just a little. Nobody else may notice, but you will know that you’ve achieved a small victory. And those small victories will all add up.
I had an appointment with a dietician yesterday about my own weight loss goals, and this was the backbone of our discussion. Baby steps, little changes, small victories. It’s kind of like that tired old “how do you eat an elephant?” riddle. (One bite at a time … groan!)
My weight gain (which came after I turned forty) coincided exactly, in retrospect, with the onset of my PsA. The thing was, I wasn’t diagnosed until twenty years later. During those two decades, I was in pain and suffering depression, and I had two joint replacements. My doc took the view that there was nothing wrong with me that couldn’t be solved with diet and exercise. (I knew she was wrong, but had no idea what was wrong.) I self-medicated with food, for lack of any other comfort. Then, by luck, I was diagnosed. Eventually, I got treatment that I responded to. With some of my pain relieved, I started swimming. Just moving a bit, nothing athletic. That allowed me to make a small change, walking upright without a cane. That made my back feel a bit better. I went to a physiotherapist and got some coaching for water exercise. I got a bit stronger. I continued, and discovered that the movement and the improved muscle strength helped my pain. This year, I tackled some of my extra weight. I didn’t lose a huge amount of weight, but I am amazed at how much more agile and mobile I am now. Of course, walking more is helping me feel better, the dog loves it, and it keeps me away from the fridge and pantry. Feeling better helps my food cravings. And all of those small changes and efforts have made a huge difference to me, and made losing weight a reality that I couldn’t achieve before.
I don’t need to tell you how angry I am with my doctor, because you are angry with yours too. I figure the pain of undiagnosed PsA made me fat. My doctor’s lack of whatever (knowledge? empathy? ability to think outside the box?) got me into a mess of pain, self-medicating with food, joint damage, surgery, emotional and relationship damage, early retirement and lots more. Doc got me here, but when it comes to weight loss, docs have virtually nothing to offer. Those of us who manage to get bariatric surgery are the lucky ones (OK, someone’s going to argue with that … they can go for it!). If you’re a drug addict or a smoker there’s help out there. Weight loss? We’re SO on our own. We’re left to muddle through with the small changes that we are able to make today. But don’t underestimate those small changes and mini-victories. They add up, and one small change enables the next. Achieving one small victory, and then another leads to bigger wins.
Think about it: what small effort, what tiny change can you make today? Then make the change and (the most important part) congratulate yourself. You can do it.
My fingers are crossed that you and Simponi get along like gangbusters.
Seenie (sorry, I’ve just realized I posted from the wrong log in)
I love this post.
I think what Seenie says actually applies to anything … drug addiction, smoking, gambling, low self-esteem, being stuck in dead-end jobs or abusive relationships … the lot. Other peoples’ intransigent problems always seem easier to tackle than our own so personally I’d put all of that and more in the same basket in terms of difficulty.
We are sold the lie that transformational change happens more or less overnight by dint of massive strength of character or as a result of some incredible new programme / diet / revelation etc. But in reality transformation happens all the time, to ordinary people, through a series of small but determined changes which may not be noticeable to others.
This is just so true, so very true.
Go for those baby steps which will improve your health.
And incidentally, if there’s self-hatred in the mix, as there so often is with weight issues, throw the negative thoughts out every time they pop into your head, just keep chucking 'em back. Stuff the media propaganda, big women are beautiful and a lot of people think that.
This. Exactly this! And you’re right about the changes not being noticeable to others. Later in the game, though, the accumulated small victories all becomes more obvious. And it all starts with one small step.
We’re with you here, @Caradavin!
Well, the Simponi didn’t work at all. I am now on Cosentyx but haven’t started it yet due to some stints in the hospital and infections and stuff, but hopefully that will change soon. My husband and I are getting a divorce, too, and I am moving out. It’s best for us to do this, and we are still working on the relationship while we are separated but I’m not sure where things will go from here. So now I’m dealing with that, too. Yes, I’m dealing with the disappointments in therapy but I’m doing something wrong because I’m now 20 lbs away from 400 lbs. I’m devastated and very disappointed and at the point where hope is so far away. I am still trying to get bariatric surgery for a third time. I just feel that if I can get most of the weight off that way, then I can get to where I can move adequately enough to exercise and keep the weight off of me. Right now, I’m on doctor’s orders not to exercise at all unless I’m in water and there is no water access here at all except the university and it costs a lot of money that I don’t have. I just want to get somewhere where I can get started and that seems like the way. I know about the absorption issues and I worry, because I take almost 30 meds but I also was told that many of those meds would become obsolete from the weight loss so here’s hoping to that. Anyway, I’ve been reading all the posts and I’m here.
I’m so sorry you’ve got so much more to deal with it as regards the divorce and moving out. It sounds so overwhelming for you. It certainly would be overwhelming for me too. But keep re-reading that bit @Sybil wrote about ‘self-hatred’ as there’s so much ‘self bashing’ yourself in the quote above.And keep re-reading that bit @Seenie wrote about ‘baby steps’. And course you and your therapist are talking about this, I know that. But it never does any harm to keep looking at it.
I so get the whole of your focus being on dropping some weight too. I’ve spent most of my adult life being overweight to some degree. Lost a lot once on a ‘soups and shakes’ diet (around 9 stone in UK weight measurements) the size of a lot of normal sized women and slightly less than half my then body weight. It took a year. It’s not unlike bariatric surgery either, just less invasive but it has some similar risks too. It was fabulous while it lasted but it didn’t last that long as I forgot to do anything about the ingrained self hatred issue that I had and sadly many ‘overweight’ women have. Or indeed sadly that lots of women have, men too incidentally, irrespective of weight issues. And which virtually everyone has with those eating disorders of the ‘too skinny’ variety too. You know all this too, of course you do.
The ‘baby steps’ so just need to be about ‘self hatred’ issue. Life is so less overwhelming when that’s being dialled down, even by a knotch. I’m doing better on that a decade or so later. I’m still overweight, still keep those skinny jeans I wore for such a short time, not necessarily just because I’d like to wear them again, or to persistently tell myself ‘I’ve so failed again’. I would like to wear them again but only occasionally and not that often now. I keep them more to help me remember to keep working on that self-hatred issue. It’s neverending work and so fragile and delicate too, but it is the work I prefer to do these days. Somehow it’s the stuff that shows me how to exercise more regardless of what I’m eating or drinking, it’s the stuff that allows me to laugh more, to care less about ‘other’ things and what other people might think, and most of all to have a better day, just today or just any day.
It’s a lot of work too. It’s so easy to fall back into just giving myself a ‘good old bashing’. That can be quite satisfying sometimes but it never helps me. Just never. We are always our own worst critics and if others heard what we said to ourselves, they’d be horrified, even if they also say similar things to themselves. And I know you know all of this. But it’s good to have someone else say it.
Massive hugs @Caradavin. Keep being on here and keep reading the posts.
I hear you. It is clear that you are trying to sort things out for yourself and that is the best thing that any of us can do.
Please make sure that you are very well-versed in all the implications of bariatric surgery before proceeding if that option does become available. I expect you are well-aware of the pitfalls as well as the benefits, but just saying.
We will support you whatever you decide. I very much hope that the divorce is amicable and works out as well as is possible.
All the very best to you.
Am so sorry to read about your predicament, so familiar to my own experiences, to those of many of us, I suspect. I have two things to tell you on the issue; a colleague at work did all she could to get bariatric surgery, managed to obtain insurance permission at last and went through with it. I was reprimanded by another colleague at the time who said I should have done the same…result after initial weight loss said colleague was left with permanent serious consequences to her intestines and inner organs plus gained all the weight back and more and is poisoning herself again with so called protein bags to lise weight once again
As far as I am concerned instead the fear resulting from my condition after a hip fracture this September started me off on a carb and sugar free diet which made me lose weight and diminish inflammation and pathologies; the key was not not eating but eating protein and veg and healthy fats, so no hunger, cravings, and weight loss eating delicious food! Please look up on web videos on keto and dr fung, its saving my life, hope it will do the same for you. A hug ,
I’m on the other side of divorce and now putting some effort in to my weight. I can promise one thing, having a partner who doesn’t support and help you makes things a lot harder than being on your own. I’ve also gone the soups and shakes route, it works and I’m finding it much easier now that I’m living alone. Cooking is hard when you can’t spend long on your feet, so I was eating really badly just because it was easy. Now it only takes minutes to prepare a shake, I am getting all the healthy nutrients my body needs, and I still allow myself an occasional treat. Good luck with everything