Hi, everyone. I am 40 yrs old and have had PsA for about 5 years or so. I have had no luck with almost every PsA medication, including infusions and injections. I apparently am unique because nothing is working. (Wish I was unique in a different way!!) Long story short, I have tried all kinds of meds, have tried CBD oil and had a hard time swallowing it, but didn’t do anything anyway. I also have been taking Omega 3 and another supplement that I can’t think of now, for the last couple of weeks. I am a big sugar eat - I love my sweets. I have gained some weight over the last year or so, probably due to the sweets, as well and some personal stuff I have been dealing with. I am struggling with eating better and not sure where to begin. I don’t know if it’s realistic to cut all sugar out for me. I have extreme arthritis in my left foot and used to a big runner and now I can’t hardly walk without limping. It is painful to walk and I have seen a podiatrist for my foot and had surgery to clean off the Arthritis in February. It is very hard for me to walk, unless I’ve recently had a cortisone shot. Anyone have any suggestions on things that are working great for them? I need to find something that is going to help. It get’s depressing for sure! Thanks in advance!
That sounds rough. I’m guessing you’ve sought a second opinion already.
I would encourage you to give yourself time to recover from the surgery. It can take months to fully recover. Did you do physical therapy as part of your recovery?
Meds… Have you tried combination therapy? There’s so many options now but sometimes it’s the combo of different med categories that can start to make a difference. And as you probably already know, areas that are damaged may continue to hurt. The goal of meds is to slow /minimize damage. Damage that has already occurred has to be managed in other ways.
I might seek an opinion at a center of excellence, or university medical center, even if you’ve already had a second opinion.
I agree with Stoney about seeking a new rheumy and not giving up on meds. Much as you might be feeling exhausted and despondent about treatment, there will be further options, there may well be a rheumy whose fresh approach helps to turn things around for you.
I know that food is very important. However I sometimes suspect that when things are tough we may fall back on blaming ourselves for having this disease and for the course it is taking and often the first thing we beat ourselves up about is our diet. It’s great to want to take more control of diet but personally I doubt that the food you eat is either the problem or the answer.
I hear you about the sweet tooth … but you know, some people would be on a bottle of whisky a day with the problems you’re experiencing, now that is a problem! If you love sweet things, I’d suggest eating less of them. I think the taste for sugar increases the more of it you eat and vice versa. Then look at things you eat that are good for you and eat a little more of them!
As you can tell, my take on this is to do things slowly and to continue to enjoy your food, but just start to re-educate your palette. If possible, find a great restaurant that serves the kind of food you’d like to eat more of. I think the secret of sticking at things is to associate new ways of doing things with pleasure, not pain!
How about exercise? I realise that it’s hard for people who have been very good in one area of endeavour to ‘dumb down’, but there are many types of exercise that are great for PsA … what do you do in that respect?
I feel for you. I am on my third biologic. I too have a sweat tooth and am starting to realize the more pain I am in the more sugar I crave. I am also starting to realize the more sugar I eat, I think the more the inflammation goes up. From reading here it’s different strokes for different folks, but I would suggest trying to slowly cut back on the sugar, not try and give it all up at once.
If you are a big soda drinker, start cutting back on them, that is easy.
I used to hypnotize people to help them give up sweats. It is almost like giving up a drug. Start slow.
Sybil, I don’t think I’ve ever seen this put so well. And I guess though blaming ourselves is not fun, it does have the advantage of giving a sense of control when the unpredictability of PsA has taken that away.
I’d never thought of it that way, what a great reflection.
I so understand the sweet tooth thing. I don’t quite have that but I so love bread with proper Irish butter. Homemade brown soda bread especially.
For me and it is different for everyone, the one thing that increases my pain levels is anything sugary. So if I eat a dessert - say something made from merange with cream or a big bit of cake etc etc, the next day I’m upping the painkillers.
It’s got so now that I sit there and look at that gorgeous sugary thing I’m about to eat and invariably pass on it. And eat some bread instead.
I love how @Sybil talked about it. Make some of those small changes and see if it helps things. You might find you could be a little like me with sugar or you might not. If you are then of course it’s far easier to consequently lessen it emotionally if nothing else.
But please don’t beat yourself up re food or weight. PsA is bad enough and difficult enough just on its own and you don’t need to be further beating yourself up too. And it’s actually easier to make changes when you’re doing it because you like yourself more, rather than punishing yourself over it.
How are things @amyf1491? How’s the foot doing?
Looking back, @Stoney’s wise words about recovering from surgery ring bells with me. I wonder if the pain will improve significantly before too long … but can see that patience is required.
All we can do is to come up with our own thoughts and approaches. Clearly @Poo_therapy and I would both address the diet thing gradually. There again, could be that you’re an ‘all or nothing’ type with an iron will who could cut out sugar altogether one sunny day and stick with it …
What meds are you taking at the moment? Tell us more if you’d like to.
I would suggest working real hard at giving up sweets or at least reducing to a minimum as sugar is a toxin to the human body. Drink lots of good water and stay active while trying to search for more relief!
Today I had to see my Dr. For something similar. My Psa decided to invade my left ankle tendons, ligaments and tendon running up shin, I usually have pain in hands. I have taken and failed methotrexate, Enbrel, Humira, Remacaide was good for about 3 years but stopped working last year and si Symponi infusions, not working good hence big flair.now on Prednisone pack and added a new Med I have to look up oh and sp). I have managed to lose 25 lbs this years by cutting carbs, not all. Every time you eat carb just eat half. Lean meats and lots of veggies. I still drink regular cola but replaced one a day with diet. And drink 8 eight ounce glasses of non caffeine fluids. If you can get pool pass, walk in the pool. There are chair exercise. I have a trainer who adapts my exercises around my problems so a couple sessions could help. Hang in there. If you can move for 5 minutes do it. But do that 5 times a day and you did30 minutes!
Thanks to everyone for your feedback. It’s nice to know that I am not alone in this and not the only one so challenged with finding something to work. It’s not easy, at all! I am going to try my best to eat better - I just have to get started - that’s the hardest part. I am starting Remicade infusions again tomorrow - as this was the most successful for me but again in the end, stopped working like everything else. I am also on a Prednisone dose now for 5 weeks too. UGH! The struggle is real. I do try to walk when I am feeling good enough to do that.
And I did see my Dr from the ankle surgery and he basically now said only other thing he can do is take the joint out and that is not something I want to experience yet. I am 40 and hopeful that I can get some of my activity with it back at some point. He did give me a cortisone shot and said I can do that in a few more months from now. I also recently had a cortisone shot in my left hand knuckle because it was so inflamed.
Prayers to all of you for the best and thanks again for your feedback.
Curious what your inflammation markers are saying, are they high or normal? I read somewhere that if the disease is primarily with Enthesitis, and not have a high inflammation marker, that biologics will not be very effective. Also the damage to the joints might have already taken place, this would not be reversed by biologics.
You might also have overlap with OA that is also causing pain. I say this, because That is what I experienced, before I was able to differentiate between pain that is treatable, and pain that is due to damage already done.
Have they imaged your effected joints with ultrasound or MRI? Hope you find some answers, and help…
I feel for your pain and discomfort. My desperate attempt has been to cut out inflammatory elements where possible, and when medication was no longer effective the cutting out the carbs and embarking on the grain and sugar free auto immune protocol gave me good results and pain and inflammation resulted in decrease. Have a look at youtube dr berg on keto and steroids or something ro that effect for diet, all the best