Stepping up from Hydroxy

[jimbo1605]

My wife was diagnosed with SLE 4 months ago but has been on Hydroxy (400mg pd) for 9 months. She has fatigue, severe headaches, twitchy legs, severe pains down her calfs/ shoulders, breathing issues, skin problems on her hands.

Since taking Hydroxy things have got better but it is still a struggle for her to function normally.

We are due to go back to Guys Hospital in April and was seeking thoughts on treatments which are a small step up from Hydroxy with minimal side effects.

It would be good to have your thoughts and experiences of things to consider please.

[whisperit]

Hello jimbo1605

Is she taking any other meds at all? The usual one would be prednisolone or a similar steroid, which reduces the inflammatory response? That combo seems to be the most popular in terms of a starting treatment for systemic symptoms. You could consider adding other, more conservative treatments like vitamin supplements, but otherwise it is hard to suggest anything helpful without having a full medical history etc - not something we're in a position to do on this forum. A lot of people here are moved on MMF (mycophenolate) if hydroxy doesn't work well enough. Perhaps they would be better able than me to talk about that....x

[jimbo1605 in reply to whisperit]

Thanks for your post whisperit. She had a steroid injection about two months ago and that was great with limb and shoulder pains and only lasted about 6 weeks. She was on gaberpentine which helps the twitchy legs at night but everything else and particularly the migraine headache seems to be getting worse.

[Mimi1900 in reply to jimbo1605]

Cymbalta has been shown to help arthritic pain and neuropathic pain. It has helped my pain tremendously. But I have to admit I was worried and still am about taking it that is why I am still on a lower dose than recommended 40 instead of 60. I did not want to take prednisone bkz some research I’ve read has said much of the damage in lupus is caused by prednisone. In the US the step-up for arthritic pain from lupus was a combination of hydroxychloroquinine and methotrexate which I wasn’t too keen on either.

[jimbo1605 in reply to Mimi1900]

Thank you for your post and for the suggestion of cymbalta. We will discuss with the Consultant when we see him on 10th April.

[Ianrussell69]

Hi I was put on hydroxy but this had very little effect then they introduced methatrexate as well and this helped But the side effects can be awful day after you take it duvet day but this did get better when I started to inject but got an infection had surgery so been off it since sept won’t let me go back on it until next sept 🤬

[jimbo1605 in reply to Ianrussell69]

Thank you for your post Ianrussell69. I think we are probably heading towards more immuno suppressants.

[lupie46]

Hi jimbo1605. I've been on many different combinations of medication since diagnosis. It's probably good to go with the specialist advice. What's good for one person isn't necessarily good for another, and not everyone suffers side effects. Good luck.

[Melba1]

Hi,

I expect her rheumy will have a plan of next stage of treatment but for most of us it seems to be a course of steroids or one of the immunosuppressants. Most people seem to start on mycophenolate or azathiprine although with predominantly joint pain they might recommend methotrexate.

Has she tried oral steroids yet? I used to find a short reducing course (start at 40mg reduce by 5mg every day/2 days) was absolutely magic at putting me into remission. My lupus is more serious now and I need constant steroids and have just had biological therapy which seems to be working well but there are lots of options she could try which will be likely to make her feel much better (although obviously everything unfortunately has side effects and downsides too).

I hope she feels better soon x

[Sara_A]

She may need a low dose maintenance oral steroid or higher dose and reduce down to a maintenance dose that controls her symptoms.

I take beta blockers to prevent the headaches as I was getting pretty much daily migraines so take propranalol for prevention which helps a lot. I still get the odd one but mainly from tension or stress.

Stepping up more would be an immunosuppressant there are several depending on the particular symptoms if swelling or just pain in joints etc.

I think steroids may be the first choice for now?? But don’t quote me ha! They may want to save immunosuppressants til a bit further along, not being out the big guns straight away!