What happens when symptoms return after starting hydroxychloroquine ?

[suky6]

Hi, I was recently diagnosed with Utcd and started on hydroxychloroquine 400mgs daily, all was going well until this month when my symptoms returned though not as painful, my symptoms also appear to be menstrual related. Should I contact my rhuemy nurse or wait till next month to see my consultant, and any ideas what will happen now?

[Treading_carefully]

Good morning suky, I have the same diagnosis and I started hydroxycholrine in Dec last year. My symptoms are a lot milder but still there. I contacted the rhuemy nurses and we tried changing my non steroidal and added in co codamol. The altering of the non steroidal didn't help and I returned to the original but the co codomal has helped me to get the rest I need without it I don't think I would be coping with the pain. I too still feel an intestifying of symptoms when I'm menstruating, I have early ovarian failure so I am on hrt but there is a definite hormonal connection for me.

I would talk to rhuemy, ask if there is anything you can add. I also got given a cortisone injection to reduce the flare...all of this helped manage or control symptoms but they didn't vanish. I think that's what can be difficult. Best of luck, keep going with it and get as much help as you can from rhuemy and any supportive others around you. Take care of you x

[suky6 in reply to Treading_carefully]

Thanks Sam, I was taking cocodamol when the pain was at the worst so have been coping with ibuprofen thinking it should be enough. I will take cocodamol I think and see if I manage better with the pains.

[Stef82]

Im on Hydroxy and Steroids for Lupus and I’m doing fine with the medication- seems to be my daily chore to take them.

I would definitely contact Rheumy sooner rather than later- don’t forget that we’re all individuals and what works for one doesn’t have to work for someone else!

You need to find the right Meds and dosage and I’m sad to say this can only be done with trial and error until you found it.

On a positive note once you have it life will be much easier!

Best of luck

Stef

[suky6]

Thanks Stef, I will ring and have a chat with the nurse rather than try and cope on my own.

[Limerick5]

Hi suky6

I have lupus 9 years now but under control just about I to take hydroxy haven’t every had a problem with it. The only time I suffer now is when I’m menstrual for about two weeks so I take cocoDamonl could never live without them hope this helps

[Steph1993]

hi there suky, back about 2-3 years ago, i also noticed that i seemed to get flare ups sometimes up to 10 days before my period started, i do believe that it has to do with the hormones and i did talk to my doctor about it; he wasn't completely sure about it, however he did seem to agree that it could be hormone related. there are several other women that also seem to get flare ups during that time but that is no reason to stop taking your medications. it is a good idea to always tell all your symptoms to your rheumatologist. if you can, you should keep a diary or journal of the symptoms you experience. besides having S.L.E, i also have multiple connective tissue disease, sjogren's, kidney disease and some other health problems. i have been taking hydroxychloroquine for about 2 years now, and i can tell you that sometimes it takes a few months, sometimes up to 6 months for the meds to start working, so just because you might not feel a difference does not mean that you should stop taking your meds. i had started originally at 400 mg/ a day but that had to be adjusted down to 200 mg/ day because i broke out in hives and it made me super itchy. i hope that helps some and hope things start getting better for you soon

[suky6]

Thanks Steph, I started hydroxychloroquine about 8 months ago and up to this month was managing quite well and then the pains started again, I will keep a note of symptoms ready for when I go back to the consultant. I also get itchy all over especially when my feet get really warm and my hands swell up so my gp gave me cetirizine which manages the symptoms. I think I'm learning talking through this forum that it seems to be a case of managing the symptoms as they occur and living your life the best you can and at the moment am quite lucky compared to some others who are really poorly. Look after yourself.