Hello, I'm new here, looking for support and information. I first went to the GP at age 49, with pain at the SI joints that would eventually go down the legs and burn. Five years later, I've had back surgery (unsuccessful), so many steroid shots, PT, acupuncture, dry needing, too many drugs and creams to mention, 3 types of back braces, etc. While at the dermatologist, I mentioned I was still having pain in hips and low back. The skin plaques were also elevated at that time. So she sent me to the rheumy. I've had the blood work, which eliminated other forms and did have the correct maker for PsA. He says he has to have x-ray evidence in order to be able to get to the treatment he thinks will help me so I will have MRI of SI joint with and without contrast, looking for inflammation. The inability to sit has really isolated me. I used to be a superstar at work but I have to remove myself from conferences and social activities because I simply cannot tolerate it. Laying also causes pain in the hips and SI joint so basically, I constantly move to find position of rest. Now, on to what I can do: movement seems to really help so walking is not a problem. Others cannot understand why I would prefer to do the cooking and serving at a party, rather than sit and socialize. While not hoping for the MRI to find inflammation, I am anxious to at least have a diagnosis and a road for treatment that will help. I have seen the line "do not fear the medications" but the warnings for the biologics are very scary!
I have been working on going gluten-free as I feel worse after eating wheat products. I also noticed that when I started drinking a lot of almond milk and eating a handful of mixed nuts for the minerals, the plaques significantly increased. So I am doing a trial run of eliminating nuts to see if that helps.
My best wishes to all of you for a pain-free day :)
Welcome, Tallulah! It certainly sounds like you are on a mission and doing everything that you can to get this “thing” diagnosed and sorted out. Awful, isn’t it, that you’ve already gone through so much, and are still suffering. Sadly, there are lots of people here who have had similar experiences to yours: this disease is notoriously hard to pin down, and, sadly, there are lots of docs (generalists as well as specialists) who know very little about it.
One of the best things that you can do for yourself is become your own expert. A good place to start is with the book that I recommend under BOOK REVIEWS. The e-book is a bargain, and although it is a bit out of date, it is still an excellent reference. I gifted my GP with one when I was diagnosed. I’m not sure that she was all that thrilled with my generosity. LOL
Yes, our mantra here is “fear the disease, not the drugs”. And believe me, we’ve read those warnings too, and lost more than a few nights of sleep over them. But remind yourself: the potential damage of this disease, if it runs away and has its way with you, can be terrible. Think painful joint damage. Knee replacements. Hip replacements. Irreparable foot damage. Disability. Loss of income. Depression. Damage to families and relationships. Sorry, that’s a bit of a downer, but those are the potential consequences once you have been diagnosed, and reminding yourself of that may help put things into perspective.
But where was I? Welcome. I hope that you will find the support and information that you are looking for here. It’s great to see you posting. Keep in touch!
Hi Tallulah, as you've mentioned all the warnings can be scary. Biologics are the gold standard of PsA treatment but like all medications they come with risks, only you can ultimately decide whether to take a medication after consulting with your doctors and gathering all the information you need in order to be comfortable with your decision.
One thing that informs my decision making process on treatments is to remind myself that once permanent damage is done to my joints it is just that, permanent. I'll be left chasing any and all surgery, joint replacements and pain relief just to try and get through the rest of my life, just as Seenie says. I find that an incredibly sobering thought.
I expect as you get to know us here and read different experiences you'll see that most people here have very few problems with the biologics. For lots of us the biggest worry becomes whether it will work/continue working ... and if not which one we want to try next.
It's still early days for you so try not to jump too many steps ahead at the moment, just take a day at a time. Oh, and the other thing I was going to say was that to relieve my SI and hip pain when I'm lying down I find that having a pillow under my knees helps.
Thank you for the notes of encouragement. I'm feeling so blessed to have come across the group. I do not know anyone personally with PsA and many of my friends and co-workers seem very uncomfortable even asking "how are you" or "how's your back" because for so long now I've only had negatives responses. Oh, and bless my husband and family for always being so understanding. I sleep with the pillow under my knees. When I lay down in the evenings, a pillow under the tush seems to help keep the SI joints from coming into contact with the yoga mat that I'm usually on. Does stretching seem to help those with spine/hip involvement? I do that a lot and hope I am not doing damage. I very much appreciate the comments about the potential for permanent damage coming into my assessment when considering treatment plans. I've been only thinking short-term pain relief but am still learning. I will check out the e-book.
Jules said:
Hi Tallulah, as you've mentioned all the warnings can be scary. Biologics are the gold standard of PsA treatment but like all medications they come with risks, only you can ultimately decide whether to take a medication after consulting with your doctors and gathering all the information you need in order to be comfortable with your decision.
One thing that informs my decision making process on treatments is to remind myself that once permanent damage is done to my joints it is just that, permanent. I'll be left chasing any and all surgery, joint replacements and pain relief just to try and get through the rest of my life, just as Seenie says. I find that an incredibly sobering thought.
I expect as you get to know us here and read different experiences you'll see that most people here have very few problems with the biologics. For lots of us the biggest worry becomes whether it will work/continue working ... and if not which one we want to try next.
It's still early days for you so try not to jump too many steps ahead at the moment, just take a day at a time. Oh, and the other thing I was going to say was that to relieve my SI and hip pain when I'm lying down I find that having a pillow under my knees helps.
Ah, Tallulah. You are SO not alone now! Unless we have family members with the disease, most of us are very alone with it. Except for the people we’ve met here, of course! Come to think of it, the only people I’ve ever met in person with this disease are … well, people from this website. Yes, I’ve done it a couple of times and it was great meeting my virtual friends in the flesh!
And you bring up an excellent point about the short- vs the long-term. I think that your first priority has to be the longer game: what strategies are you and your rheumatologist going to employ to give you the best outcome (quality of life, damage control) over the long term? Once that is in place, together you can consider what’s best to do to keep you mobile and as pain-free as possible until the long term plan starts working for you. We’ve seen it here many times: people focus on the short term, what helps them get through this week or this month (painkillers, steroids, alternative therapies and diets) and they limp along from week to week month to month, thinking that things will get better. When they don’t get better, they start looking for longer-term, more aggressive therapy, while at the same time trying to deal with the fallout from their failed short term fixes.
I know what you mean about responding to “How are you?” Tell them the unvarnished truth, and … well, that doesn’t win you any points, or get you any understanding. You can smile and say “Just fine, thanks!” and they really believe that you are … after all, you look perfectly healthy to them. I still haven’t worked that one out.