Pred, methotrexate and MCTD

[Brychni]

Hi all - I posted this on NRAS website and loads of helpful replies. As lupus is part of my diagnosis I thought I would post here too:

Oh where to start. Feet have been bad for a few years. Reached crisis point a few weeks ago. Agreed with GP after asking about crutches to take short course of steroids as instructed by rheumatology. They worked within a day.

Had rheumatology appointment, referred to cMATS again, appointment tomorrow, and because I respond so well to steroids she prescribed methotrexate again.

So, I started tapering, started methotrexate within a couple if days and took my final one prednisolone on the third methotrexate dose. Within days the pain started to return. I'm in 3rd week into a new job and because methotrexate needs about 3 months to start to take effect I caved in, in desperation and yesterday re started prednisolone. Took 4and what was becoming unbearable pain in both feet and all the way up to my hips disappeared within about an hour. I just can't take the risk of not being able to walk 😕

My big worry is: given my vague diagnosis what if methotrexate doesn't work at all, after 3 months? What if my feet pain is caused by something else that methotrexate can't help with? 🤔

To recap: synovitis on scan wrists

Pm scl 100 positive

Antiphospholipid antibodies antibeta2glycoprotein igg

Raynaud's with finger ulcers

Low platelets

And something else I can't remember! Oh yes positive ANA once.

Also been on hydroxychloroquine for a few years.

Update: Today I had a really positive and fruitful appointment with CMATS - wasn't sure what that was exactly but was referred by rheumatology. Turns out that it was mainly about assessing surgery for the fibroma on my left plantar fascia. However, it was the same podiatrist who sees my daughter about her serious hypermobility.

Unlike my appointments with rheumatology where I look like a rabbit in the headlights and forget all the questions I have, I gave a full description with time line and asked a zillion questions.

Turns out that I have some inflammation and bumps on both achilles tendons, the fibroma and bursitis on both soles of feet especially the heels. He was very thorough and patient and answered all of my questions. I explained I was worried about the methotrexate not working and I that it could be overkill in the absence of even knowing what was wrong with my feet. He said the tendons can be an age related thing - I'm nearly 54 - and anything to do with achilles will travel all along the plantar fascia which is now believed to be one and the same thing. I have awful pain where the tendons join the base of the big toes and this and the bursitis are associated with things like RA (he didn't mention lupus but I assume it's also the case). So this has given me some peace of mind that the methotrexate is worth trying at least.

For anyone interested in the treatment: it is going to be Shock Wave Therapy which is, apparently, very effective but quite painful but I signed the piece of paper as anything is worth a go. This will be used on the fibroma and on the bumps on my achilles tendons. I'll have some more imaging first and then the procedure will probably be in January.

Would love to hear from anyone else who has had this done - even negative! Don't worry I can't be put off 😀

[MdmButterfly]

Hi Brychni I’ve had two rounds of shock wave therapy treatment on my Achilles tendon and whilst to be honest it’s uncomfortable the therapist can alter the intensity so it shouldn’t be really painful. The second round was the charm and really effective on my tendonitis. I would recommend it. I highly value the treatment I’ve had from MSK and podiatry. It was my podiatrist who sent in my referral to rheumatology when they suspected Lupus and on the basis of my butterfly rash tendonitis positive ANA and high Anticardio Lipods when my GP was prevaricating.