Confusing symptoms- flare up, medication change or steroid taper?!

[SRiley]

Hi everyone,

I haven’t been here for a while Since I last posted I have had a diagnosis of Undifferentiated Connective Tissue Disease. I started Methotrexate last November which has been helping a lot.

The problem is that I had a flare up around 6 weeks ago and I just can’t get on top of it... I’m wondering why the things that normally work aren’t currently working?! My rheumatologist thinks my flare up was triggered by sun exposure. He gave me a short course of steroids to taper down by 5mg each week. I normally have a steroid injection- this is my first time on tablets. Around the same time he switched my methotrexate tablets to injections to reduce nausea.

The problem is that this flare up is just not easing! The first 2 weeks on the steroids I noticed a difference but then symptoms started to return. I also noticed that I was getting horrible brain fog and fatigue for around 3 days after taking the methotrexate injection (I didn’t get this side effect on the tablets 🤷🏻‍♀️🤔!). I am now wondering if I’m feeling unwell because a) I’m tapering off the steroids, b) the methotrexate injections are not working for me as well as the tablets did, c) I’m still in a flare up or d) a combination of all of these?!

I hate bothering my rheumatologist but I really want to get through this flare up. I’m having horrible burning pains in my legs, struggling to walk and having major fatigue. I’m planning on taking my left over methotrexate tablets instead of the injection this week to see if that makes a difference. But I wondered if anyone had any other suggestions as to why I’m not recovering from this flare up or what I can do?!

Thank you

[Hidden]

Just a thought - is your dose of MTX the same with pills as injections? If same then you might, in effect, have been having a higher dose. Basically MTX is more potent by injection than orally so I think 20mg tablets is the equivalent of 15mg By injection. That’s what I was told anyway years ago when I was switched. The injections bypass the digestive system so are significantly more effective but also stronger.

I’m sorry you’re struggling. I am too despite doing okay on Mycophenolate. Nothing is really helping just now and I am really badly fatigued. In my case it could just be that a steroid injection 2 months ago has worn off. Hope things improve soon. X

[Bebe76]

If you were only taking steroids for a short time it's unlikely that you are having withdrawal symptoms. Don't be worried about "bothering" your rheumatologist if you are suffering, that's what they're there for!

[Djlr]

Sounds like a “multiple choice” question on a quiz 💜🙄💜

Could be one of the #1, 2, 3 or #4 “all of the above” - but by all means - CALL your Rheumatologists- keep him in the loop.

He knows your case.

If you were responding to the higher dose of steroids, they were helping initially. Some people when they “slowly” taper of of the Prednisone as they hit 10 mg from to upper level of 20mg, their bodies efforts to start producing natural steroids becomes a bit of a struggle and may take a little time to adjust.

That being said, SUN initiated FLARES are hard to bring under control as it has set off a bad immune response in your body.

When I was 1st diagnosed I met a woman in Hawaii and she was covered from head to toe ( Wide brimmed hat, long pants and long sleeves) I asked her why, she said “ I HAVE LUPUS, and I had a 17 YEAR LONG Flare from the SUN. And I never want that to happen again”. I was puzzled since I was recently diagnosed and the DOCTORS IN EARLY 2000’s did not tell me that the SUN would trigger Flares. Plus, I had always been in the SUN.

A few years later, I started having my own SUN induced Flares and I finally Understood.

You may need to really REST - give your body TIME to recover - DON’T push, don’t overdo, get others to help you ..... It may be your body trying to Recover and you may not be giving it a chance.

It’s like having the FLU - REST UNTIL fully RECOVERED (well, ...our Lupus normal without the more extreme symptoms because we are never fully “normal”.)

When I get a day when I can’t tell that I have Lupus, it is a true blessing 😊💜

Not sure about how the methotrexate is affecting all your increased Symptoms, but days/week or two of “Rest” is one thing to try .💜

nhs.uk/medicines/methotrexate/

Make NO medicine changes without talking with your Rheumatologist. It could make things worse - but the injection may not be working for you and your Rheumatologist needs to be informed.

Hoping for better days ahead💜