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Does dactylitis ever go away?

Hi all. I'm new here. I just got diagnosed on December 7th. I think the reason it took so long is that I had had 6 different stress fractures in my feet over the last year and so my swollen toes were put down to bone marrow edema and stress reaction. I saw 5 different doctors (podiatrist, general practitioner, ortho surgeon, naturopathic doc, and finally a rheumatologist after my left wrist started aching). Three of my toes, including one that has never been fractured, are still fairly sausage-y. These toes are my main symptoms other than persistent plaques, and a general ache and fatigue upon occasion.

Current hesitations and treatment history


The rheumatologist wants me to start methotrexate; I'm not too keen on the idea. I've intensely restricted my diet and started taking vitamins (multi, B, D, calcium, fish oil, folate as methylfolate), drinking turmeric tea, bone broth, and apple cider vinegar (with honey, cinnamon, hot water), and indulging in regular epsom salt baths. Although all of this has helped decrease the swelling a bit, and I know 3 or 4 weeks is not a super long time, my toes still don't show the kind of progress I would like.

What's your experiences with dactylitis?


So, question: has your dactylitis ever completely gone away? How long did it take? What did you do to manage it? Thanks so much for the support!

Rebecca

  1. Hi Beckers. Oof! Sorry you’ve been struggling. The “finally getting diagnosed” thing is such a double-edged sword. Glad to know what’s going on, but then also have to cope with what it means, figure out treatment, etc.

    I get dactylitis in my fingers - it was actually the first real clue to what was going on with me. In truth - meds have helped a lot with that. When I was first diagnosed, i had not been able to wear my wedding rings for a couple of months. Now I wear them every day. My fingers are usually a it sausagey first thing in the morning, but go back to normal after a little while. In a flare, my fingers definitely swell up but sulfasalazine & methotrexate have reduced the finger swelling A LOT (for me). They haven’t helped as much with Enthesitis in other joints, though.

    All that to say - although I’m not sure if my fingers have ever gone FULLY back to normal, the full-blown dactylitis has definitely gone away with meds. Hope you get some relief soon!!

    1. Thank you, AllisonJane and Miriam! You give me hope for my not-so-little piggies of toes. I'm very glad you are able to wear your wedding rings and walk for miles without pain. My own goal is to dance at least 2 times per week without fear of pain, swelling...or another fracture.

      Yeah, I'm alternating between the denial phase of "life won't be That different" and the fear / anger phase of "life as I know it is Over!" Sometimes both extremes in the same day. It doesn't help that my family is scattered across the States and my fiancé is out of the country so I haven't had a really good, long HUG since the diagnosis. Also, a strict new diet is quite...difficult during the holidays. It has saved me a ton of money on eating out, though, I will say that!

      I'm grateful I found this group; I'm hoping to find some support and new activities to pursue in person, too. I'm going to keep up with my natural things for now and see what results I get for another month or so before considering the meds. I'll keep you updated.

  2. Yes it does! I was diagnosed about 3 -4 months ago. Tried natural thugs first. No change. With much trepidation, I started methotrexate. I’ve been on it for 6 weeks and my symptoms are 99.9% better and I’ve been having very minimal side effects. I wish I didn’t have to be on medication, but I’m grateful that it’s there. Today I walked several miles with no pain. It’s a miracle.

    1. Hi there,

      I was diagnosed last summer with my main give away symptom as dactylitis in one of my toes. It started 13 months ago..I had bone scans also thinking it was stress fractures. I would say it is 80% normal now. I also had general fatigue and was in about a 5-6/10 body pain range every day.

      In the summer when I met my rheumatologist and got my diagnosis I tried methotexate - reacted terribly only lasted 3 doses. In the fall I tried sulfasalazine... at 5 weeks I had a really bad reaction.

      I have been following the autoimmune paleo diet for nearly 4 months with some supplementation (tumeric, probiotic, vitamin D) with the help of a naturopath. I also work with a psychologist to manage stress and recently started practicing meditation to manage stress.

      I can honestly say aside from the occasional plantar fascia stiffness, I feel fantastic. No body pain, way more energy.

      Good luck with your journey! If I didn't react to the meds I'm sure I'd be still giving them a try.. but touch wood* this is working for me.

      1. Hi- I, too, have two sausage toes for about 9 weeks. I tried anti-inflammatories and otezla- which I stopped because it made my back hurt. I have started the AIP diet, only in for a week, and I have a dr appointment next week. I know I am going to have to take meds, and I'm terrified. But I can't live and work in one pair of sneakers. I want to feel normal and wear my dress clothes to work again.

      2. Can you remember how long it took for the AIP diet to help your toe?

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