I have been dealing with arthritis symptoms since about 14, starting with finger and toe swelling and tendonitis in my feet. Knees elbows back neck, ok pretty much any joint or tendon spot symmetrically has hurt. My fear is that I’ve been dealing with this from a young age and there are certain things I can’t do. Like bend down to the ground without using furniture, some fingers can’t bend past a certain point, a top joint in my finger has been bend forward for years. I don’t know what are the early sins or deformity or if there are any at all. Does it just happen seemingly overnight? This has been haunting me. I have nightmares of becoming deformed and not being able to do anything. I know that fate awaits me one day just based on how severe my symptoms are and how limited my abilities have become on a regular basis. Anyone who does have deformities maybe you could share your story and how many years it was before the deformity began. Would love to get a consensus I know everyone is different.
I just peeked at your bio and I see that you are not on any disease modifying drugs. Over time you will have deformities. I was diagnosed pretty fast and started treatment pretty fast. But even with being properly treated, I have experienced damage, including joints that are wandering. I’ve had two PsA related surgeries and will need a few more within the next year or two.
My mother was completely untreated for about 15 years while her doctors insisted that it was osteo in her hands. Her fingers are extremely damaged and deformed. She just had surgery a year ago to replace and fuse joints in one hand. She is now being properly treated and while there is a lot of damage she feels better than she has in years.
Some of the damage that’s already occurred you will have to live with or possibly surgically repair. But more damage and deformities does not need to be your fate. Why not treat the disease?
Nikibobby, the pace at which this disease progresses, and the amount of damage it can do, is extremely variable. Some people have only discomfort for years, and never get badly damaged. Those people are unlikely to sign up for a PsA board, so you probably won’t be meeting anybody like that here. Others are unaware of what ails them for years and years, and when damage is discovered, that’s when they get a diagnosis. That would be me, and I have a lot of damage, although like Stoney’s Mom, with aggressive treatment, I feel like a new woman these days. Some people strike it lucky with a doc who hits the PsA diagnosis squarely on the head early in the game, they are monitored and/or go on therapy and their life goes on. Not too many of those people here either. And then there are the people who get knocked flat by this disease, and within a short time find themselves trying to cope with a disability. There is simply no telling how this game isgoing to play out.
Joint damage and resulting deformity is what happens when tissues are inflamed over a period of time. Inflammation hurts and makes you feel stiff and achy. How bad’s the pain? Depends on nhow you perceive pain. Often, it will make you feel tired and some people feel depressed too. It’s the inflammation that can damage your joints. How long does that take? How long’s a piece of string? My words to my GP were “my feet hurt”. When they found extensive erosions which led to a PsA diagnosis, the GP said “Anybody else would have been flat on their back in screaming agony.” The variability of symptoms and how we perceive them is part of what makes this such a difficult disease to diagnose and guage.
What does joint damage feel like? Hard to say, depends on the joint, depends on the person. But the pain of a damaged joint is permanent, failing surgical intervention.
Not trying to scare you, Nikibobby, but for me the risks of not getting specialist help with this would be too great. Think joint damage, impaired ability to work and earn, relationship fallout, adapted living arrangements, and on and on. Those are all costs that I have to live with. Until I had permanent damage, though, I had no idea I had anything but garden variety osteo. Had I known, I would have done everything possible to avoid ending up in the place that I am now.
Your questions are so good and so thoughtful and intelligent. We’re glad you joined us!
Thank you for your replies! I will go ahead and say this: there are several reasons why I am not currently on any disease modifying medications.
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I am not currently on insurance and they are expensive even on the best insurance plan. Money is everything in this country. Last year I went to a dermy who correctly diagnosed my psoriasis (finally!) I went through all the tests, waited for results and was forwarded by the doc of the expense and that insurance likely wouldn’t allow it until I had tried other ointments and crap less expensive that I know don’t even work. I have yet to find a rheum that will diagnose me with PSA.
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I am not judgmental and I respect all opinions, but I do not believe in these drugs. Yes I would be afraid of the side effects but more than that they do not cure. They relive by suppressing the entire immune system. I believe this does more harm than good. Maybe you’ll avoid joint damage or at least slow its progression but at what cost? I have a better way. Attack the real cause at hand. Inflammatory foods must go. Leaky gut must be Healed. And then only then do I see improvement of symptoms. I know this because I have lived it. Stick to my diet and weight training routine and I will be much better. Although it is tough to stick to long term it does me no harm in the process. Once you have full blown autoimmune disease there is no going back. Wish I had known when I was kid all the things I do about how the body functions now. Maybe then I could have prevented this.
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By the time I find one that works for me I’ll probably have damage anyways. Given how much damage I already have.
Maybe you wouldn’t agree with all these reasons and I respect that. But as it stands now I just can’t afford to even go on the drugs if I wanted to. My goal is natural healing. Giving my body what it needs and removing what is hurting it and letting it heal itself. Our bodies have the power to heal themselves if we just allow them too. I’d rather work hard and do all the right things and fight it in my way than fighting insurance companies and relying on pills that only promise to make it better. They paint a pretty picture of relief and yes sometimes that’s what you get but sometimes you just get worse. Maybe I’m jaded. The medical field doesn’t know near enough about how to treat the immune system to be putting people on such dangerous drugs. But that is the choice of each individual and I completely respect those rights. I just choose differently. But anything I do is only a treatment. Not a cure. Medicines can’t stop its progression because they only work to get inflammation down, not eliminate the Cause
You are correct that there is no cure. Diet and other strategies certainly can be used to lower inflammation and help manage. For your sake, I am hopeful that you don’t experience a lot of deformity and damage by not using disease modifying meds. Once the damage is done it is simply too late.
I tried a lot of alternate medicine strategies including dietary changes, acupuncture, herbs, etc. none of them made a difference, and unlike you, I am lucky enough to have excellent health insurance. It costs me far less to use traditional medicine than it does to use alternates.
While there are side effects and potential risks of treatment, just remember that this is a systemic disease, and can lead to systemic health problems, including heart disease and lung damage. I already have some minor lung problems, and they can make me miserable. Knowing that the meds I take have some potential risks is far less worrisome to me than the very real risks I face by not treating the disease.
For me the permanent damage is, allegedly anyway - I do wonder what a thorough review of imaging would reveal - due to secondary osteoarthritis. My take on osteoarthritis, as a non-medical person who has it, is that the degree of OA damage is all-important. There can be quite a lot, then just a little more can be the straw that breaks the camel's back and suddenly results in more severe disability.
Conversely, I'm told by my rheumy that it is also possible to have fairly severe OA and still be quite comfortable and nimble. Or to have a little and be in agony. There's no sure fire explanation though maybe it depends on pain thresholds, which nerves are touched and so on. But this means that our subjective assessment of how bad OA damage is can be unreliable.
Okay, so you may have PsA erosions ... or secondary OA, or neither or both. But the problem is that assessing yourself is difficult. I suspect that you could go from okay-ish to definitely not okay quite quickly. Had I not had a fairly dramatic onset of PsA, i.e. virtually unable to move, I might have been tempted to avoid the drugs. However, despite the damage I have and despite the long and very disabling first flare, I am now very supple and very comfortable in terms of joints. It's quite incredible. I'm for drugs, though I do not like taking them one bit. I got an early insight into what PsA can do and it scared the pants off me.
I do eat carefully and well. But, on balance, I think that as PsA is essentially due to genes, it runs very deep indeed. Possibly (or 'probably' I'd say) too deep to tackle completely by taking good care of the body.
I'm old, compared to you. But not being able to walk, having just one arm that would work, being poleaxed by fatigue ... all these things made me feel as old as methuselah. I love to dance, to work hard, to socialise, all that was at risk. Good luck, but take good care and keep the position you're taking under review.
Nikibobby, I understand what you are saying, and you – and only you --need to feel comfortable with how you decide to proceed in your situation. Each of us has to find our own way of dealing, and I admire your resolve in coping in the way that you are. Unfortunately, it sounds as if you have no choice but to choose the route that you have and I hope that you get the best possible outcome from it. I also hope that you will think ahead to the day when you might need to change strategies, and find a way of getting insurance adequate for covering that eventuality.
I pointed you to our Complementary Therapies section the other day. Did you find it? Do add your voice to that part of our forum as well, and keep in touch.
Nikibobby, I do not believe that there is ANY cure for this disease. The drugs most certainly do not cure it, nor do they claim to. And I don't believe that natural healing can cure it either ... there are an estimated 32 million people worldwide with this disease and if there was anything, anywhere which was a genuine proven cure I truly believe that we would all know about it. And I certainly do not give any credence whatsoever to any big-pharma or government conspiracy theories which keep us all sick for their own vested financial interests.
So however you cut it anything you do is only a treatment ... but it is a proven fact that with medical treatment the progression and damage caused by this disease can be minimised. People can die from PsA, not so much the joint damage, but the damage that uncontrolled inflammation can cause to any of the internal organs. Imagine the inflammation in the pericardium of your heart stopping your heart from pumping properly. I am not trying to scare you but this is real, it is not an abstract concept. Over the last year (even on a biologic) I'm losing my ability to walk, I have never been so frightened in my life, and it makes my lumpy and twisted fingers seem like childs play.
The DMARDS start at a cost of something like US$15 - 20 a month. I believe leflunomide is the most expensive and when I was paying for this myself it was something like US$150 - 200 a month. It is only the biologics that cost $'000 a dose.
I appreciate how difficult it is if you can't afford health insurance but in your shoes I'd move heaven and earth to get to see a rheumy to get his help within what I could afford. Remember if you don't have insurance or money, joint replacement surgery won't be an option for you and access to narcotic pain relief is getting harder and harder in the US and is also costly. Don't leave it until this is all you have left.
And even if there is some kind of medical research breaktrough into auto-immune disease in the future which does offer a cure, it will not undo the damage and disablement that has already happened to us.
Also, I do hear what you say about money and insurance. It's easier for me, in the UK with treatment free at the point of delivery. Though there is rationing of certain drugs including biologics for inflammatory arthritis. I believe there are some ways ... maybe .... around this in the US? tntlamb is the expert in that area.
Just a quick point here. The meds do NOT work by suppressing the entire immune system and never have. They are very selective. Of course there is a very active campaign to the contrary by the entirely unregulated "natural system" that is anything but natural.
The severe damage from arthritis has NOTHING to do with inflammation. That's something else. You can eat anti inflammatory food or take anti inflammatory pills and eliminate every bit of inflammation from your body and the damage will still occur. Inflamation is the result of actual changes in the synovium, enthesis etc.
No one is excluded from the medications because of "lack of insurance" In any event that is a personal choice Everyone can be insured in the US and at a much lower cost than any country with single premium care systems. We just don't have a VAT. or other tax to pay for it.
There is no leaky gut (that's another disease fantasy family) causing Psoriatic arthritis. We do have an alternative treatment section here. Its not terribly active but there is some good information and ideas. there.
I hear what all you are saying. I have spent so much time weighing the options. And unfortunately the medicine has not been an option for me. Firsts I have to find a rheumy that will actually diagnose me. I remember the last time I went to one. They did e-Rays and blood tests and I waited for results and even with my psoriasis and other symptoms no diagnosis could be made. I broke down at tears when he basically said all he could put me on was a higher dose of NSAIDS. He looked baffled when I broke down in tears. I will keep trying I know it may take forever but I will get checked out. Whether I go on drugs or not a still up in the air. But finding a doctor who believes something is wrong more than meets the eye is the hardest step.
My grasp of detailed geography of the US isn't great but if you go into Members, then Advanced Search, you can look up other people in your area (or as far as you think you could travel) and then 'friend' anyone who you think may be able to recommend their rheumy as someone who is PsA knowledgeable. Good luck Nikibobby.
Now THAT is something we have all struggled with. There is wealth of info onthat. Why not ask for some help on finding the right doc. what to say and what to ask.....
Nikibobby, this site is populated with a great number of people who have had similar doctor experiences to yours. Doctors who blow off your complaints, ask the wrong questions, or who just don’t know enough to make a good diagnosis.
I have a feeling that you are smart and resourceful. There’s lots of information and support for you here, both in the Complementary section and the other discussions. We’re glad you joined us.
Thank everyone for all the advice. I know my stance on a lot of issues is stout but I am not opposed to hearing other viewpoints. Maybe with some luck in finding the right help and information my views on drugs will change. But that is why I’m here. To learn more and that means keeping an open mind and keeping up my hope.
Hi Nikibobby.
I had the same attitude as you 18 months ago. I mean, not wanting to take the meds like biologics, etc., for my psoriasis and PsA. I had tried every natural product, but nothing was working and my inflammation was quickly getting worse. I was lucky in that, even though I was diagnosed with PsA in 2008, I was getting by with some Tylenol or ibuprofen and a couple prednisone tapers. My pain wasn't severe and acute in a couple of places, but more widespread throughout my body mild to moderate but gradually getting more intense. I had kept refusing the meds my rheumy recommended. And then I found this website. I was told to fear the disease, not the drugs, and that I was headed for some horrible health problems if I didn't take the meds. So, I agreed to go on Enbrel. It worked very quickly to relieve my widespread tendonitis and inflammation of surrounding tissue, my fatigue and stiffness and weakness. Enbrel gave me my life back 13 months ago. I've called it miraculous. But, you do have to decide if and when you're going to take a biologic. It is a personal decision--and a big one. It's really scary to succumb to becoming dependent on a "drug" to keep you feeling well. I can fully understand what you're going through.
You seem to have learned a lot through being on this website, and you're not 100% dead set against biologics anymore, and that's good.
Keep an open mind, and good luck!
There is a great patient orientated book mentioned in Book Reviews ... and if you are also interested there is a more recently published version for medical professionals. They are both excellent information resources.