Hi, I’m relatively new here. I posted a while back and then forgot where I posted it!! But I’ve found you again! So typical of me. Still trying to hold on to my job and deal with this arthritis. Anyway, I can go in to more detail later about my condition if anyone should want to know. For now I thought I’d send this picture and ask you all if you think this looks like arthritis mutilans. I have 2 fused joints and one on its way; another has a swan neck deformity. My wrist is giving me terrible pain, especially at night and morning of course. It feels broken and a little lump appears from time to time on the palm side of the wrist and lower hand.
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I don’t believe anyone here is qualified to say much more than it sure looks painful.
FWIW by definition mutilans is marked by “osteolysis” It the Loss of bone or in short the opposite of ossification the lumps and bumps etc commonly seen with osteo arthritis. DIP joints etc can become mishapen because of loss of bone or because of the addition of bone (and stuff)
I had a mutilans “formation in my shoulder” the bone where certain tendons attached simply wasn’t there. As awful as mutilans is, it is highly treatable and many remedies (surgical) available
The big question is whether you are being treated properly? If you aren’t on the most aggressive treatment possible, you’ll have damage. If it’s mutilans, it can be awful, but it’s damage no matter what.
My mom spent 15 years being told that her fingers were being deformed by osteoarthritis. Guess what? It was really untreated PsA. Not mutilans, but horribly disfiguring nonetheless.
tntlamb, thanks, that is helpful Well, I certainly do have bumps. On the other hand (no pun intended) a couple of fingers and one of my toes is shortening. So, I don’t know. At any rate, you’re so right - it is very painful. I too have terrible problems in my shoulders. Torn rotator (will not do surgery - say I’m not a candidate), bone edema - I could go on and on. Stoney, No, presently I’m not managing well. For years I took minocycline and I can honestly say it helped. For years, I did fairly well compared with people who are on more aggressive drugs. When this last hand flare started I asked rheumy for steroid shot to prevent auto-fusing. I could tell it was going to happen again. He refused and told me I needed to be on something besides minocycline. He put me on Sulfasalazine, which did absolutely nothing but make me sick and have horrific insomnia. Tried to get me on Embrel. I finally agreed to it but then couldn’t afford it. When all was said and done it was still going to cost me over $1000/mo. No can do. So he put me back on mino and said if that didn’t work, he’d try to put me on Remicade. Since it’s a county hospital and I’d have to be admitted, they’d help with the bill. I’m also speaking to someone today about a 2 year clinical trial for Cosentyx. Honestly this makes me a little scared and sad because many, many people have been helped with the antibiotic protocol - those fortunate people who have doctors who will work with them and have insurance that will pay for abx infusions. I tried several times to get my county teaching hospital to do that and they wouldn’t give it a moment’s thought. “We don’t do that here.” Ugh. It’s so much cheaper and so less toxic than many of the other drugs - it just doesn’t make sense. But there’s not a thing I can do about it. So now I guess it’s try the heavy hitters, or go crippled. Oh, and I tried diet - no gluten, dairy, nightshades or sugar. Didn’t stop it. (Btw, I was 50 when PsA started in 2006. I’ll be 61 this year.) When I last saw the rheumy he said “looks like a little mutilans” - can you even have a “little” mutilans? I was wondering does it happen all at once or little by little?
Oh dear, Laurel9. It sounds (and looks!) like whatever that is, isn’t well-controlled. Yes, the monocycline is less toxic and much cheaper, but if it doesn’t work, what’s the point? Some people here do find that they feel better with a controlled diet, but there is no evidence that diet can control damage.
I’m afraid I don’t know enough of the ins and outs of insurance and treatment in the US to be of any help at all. But there a plenty here who do. Why not start a new thread to see whether anybody has any advice that would help you get the aggressive treatment that I think you need.
I’m one of the ones here who has a lot of PsA damage. Mine was caused because nobody connected the symptom dots over a period of about fifteen years. I had a lot of damage when I was diagnosed.) Trust me, there are significant risks to fixing damage as well. (Think surgery, for one… and then think loss of income, terminated careers, stressed relationships, medical costs, loss of enjoyment of life, I could go on.) Once you’ve been diagnosed with this slippery fish of a disease, you have risks. Lots of them. The heavy hitting drugs, I reckon, are the least of them.
We’re glad that you joined us, even if the reason for your arrival is unfortunate. I think you should introduce yourself and ask advice about how to access services and treatment in your position, living as you do in TX. Even if you learn one thing (which I’m sure you will!) it’ll be worth it!
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@laurel9 Biologics are readily available in the US unless you are on medicare (over age 65) Enbrel by far has the best program and will simply send you the meds. Humira has a 5 dollar copay (renewable) Enbrel is need based humira is not. I’m not exactly at the top of my game (its so bad I actually watched a Hallmark movie last night and thought the breakup before the hook up was real…) but I think I can help you weed through it or put you or someone you trust in touch with someone who can.
Minocycline has had no record of working for anything but VERY mild RA and is given orally. A first year med student should know the difference between sero negative and Sero positive arthritis’ but alas -no
Ever hear th phrase a “liitle pregnant” seems to fit here somehow.,
You seem to have some things run together “auto fusing” happens in spondylitis. There is no shot just exercsie and biologics. (mostly exercise and high dose NSAIDS)
The antibiotic infusion program is something different than minocycline. Its pure quackery although it does turn you a very pretty blue over time. OH and kills you with c-diff. No wonder they wouldn’t do it. I hadn’t heard of it in sometime after the Road Back outfit pushing it disappeared and resurfaced as a rehab center… I suppose it still exists on the internet though.
I spent several years on minocycline and talking to the people at The Road Back. I honestly believe some people are helped by it. The IV’s are used to supplement the minocycline or doxycycline, or as a kind of jump start. Mino and Doxy are both approved DMARDS but there is debate as to how it works. Many who aren’t wildly supportive of it say it works because it has anti-inflammatory properties. I know quite a few on the Road Back that have had good results. Some have gone into remissions, at least for a time. Well, what more could we ask for? Isn’t that the case with the other medications? They work for some time then you have to switch? But really, it’s not important that you agree with that or not; the point is I cannot get the full (abx) treatment, so I have to seek alternatives. Doing nothing is not the solution! I put a call in to my Rheumy. It can take up to 3 days for him to get back with me. We’ll discuss options. I heard back from the clinical trial people. The 2 year study is not accepting any more patients but they have a 1 year study (Cosentyx). Plus they’ll call me from time to time regarding new studies. I must jump off now but I’ll post again as soon as I can to introduce myself like y’all suggested (what do you want to know? I mean, I could write a book!) and I’ll also tell you my experience with the Enbrel people. sincere thanks for all your replies.
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That’s right massive amounts of anti-inflammatories make some people feel better but does nothing for controling the disease. Mino and doxy are not DMARDs. But then what any of that has to do with you is pretty much proof of who the road back is utter and complete bullshit. You don’t have anything even close to what they claim to treat. Someone took you on a ride that you may not be able to backtrack.
I have not been on this website for some time, because it is not particularly receptive to alternate treatments. I have been successfully treating my Psoriatic Arthritis with Minocycline Antibiotic since June 2008, sometimes with 200mg daily and currently 100mg daily. My primary care internist is doing the prescribing and believes in the approach, since it is working for me. I have no joint damage and my pain level is acceptable. I don’t believe in disease remission and get quickly back into pain if I reduce the Minocycline to a pulse approach. I don’t personally care about the debate as to whether it is working as a DMARD or controlling the subdivision of mycoplasma bacteria as a bacteriostatic antibiotic. A far amount of the general public carry the Mycoplasma bacteria, but their immune system keeps it in check. My immune system was compromised in 1999, when I got a staph infection from a spinal fusion operation and had twice a day strong bactericidal via a PIC line for 40 days.
Hi Laurel, I can’t read this whole discussion right now because I’m in the middle of something else, but I just wanted to say ouch! Your hands look painful! I hope you are able to get on a biologic and get those hands feeling better! Is that your main symptom? Do you have psoriasis?
I know tntlamb and the others have good knowledge and great advice. I hope you are able to get a sure diagnosis and get help!
I hear you, Vinnylid. What it is is this: the private non-profit foundation which set the Ben’s Friends network up (and pays for its running costs out of individual donations) intends for information on our communities to be based on conventional, mainstream, evidence-based medical research. So, while we have a section called “Complementary Therapies” on each of our communities, any medical information shared in any significant way here will have that focus.
The moderation on our communities also has a that conventional focus. While we don’t dispute that individuals may have found that this or that therapy helped them, we cannot and will not pretend that they are accepted conventional medical practice. We may respond with "Oh that’s interesting, why don’t you post that in complementary therapies, where we collect “things that helped me”. Or, if an alternative treatment is risky for any reason, a strong point will be made to that effect. We feel that it’s important that our members are aware of the dangers, risks, and track record of alternative therapies, and so rather than censor, we tend to leave alternative therapy information in place, but with a rebuttal.
We try hard to get the line between conventional and alternative therapies right, and we have resource people who we call on to make those judgements.
Finally, this is primarily a peer-to-peer support site, a place for social and emotional sharing and support. Although there is medical information shared (and vetted by our evidence-based medical resource people), we are here to support each other. For medical information that suits your particular inclinations, I guess you will need to go to the practitioner of your choice, which you do. It’s a shame that you feel the need to avoid everything this community offers because the medical information doesn’t agree with you.
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