Should I take hydroxychloroquine for palindromic arthritis?

Torih

Hi all, I was recently diagnosed with Palindromic arthritis afte 2 years of symptoms. I currently have a really bad flare up in my right hand. I was prescribed hydroxychloroquine but only "if it gets worse". I am not sure what that means - a single flare? or over several years? I was only given 1 month's supply. My GP won't advise, and the hospital don't answer.

Does anyone else take hydroxy all the time, even when they don't have a flare up? I can go months between flares. Thanks in advance.

Poppyjane

Welcome @Torih to the online community,

You have palindromic arthritis and have currently a flare affecting your right hand. There are numbers of the members of the community who have experience of taking hydroxychloroquine and I hope they will share their thoughts with you. Meanwhile I attach some links which I hope will be helpful

https://www.versusarthritis.org/about-arthritis/conditions/palindromic-rheumatism/

https://www.versusarthritis.org/about-arthritis/treatments/drugs/hydroxychloroquine/

I also hope that you will get some answers to your questions from the GP and the hospital.

Do let us know how you get on, we look forward to hearing from you soon.

Best wishes

Poppyjane

stickywicket

I know it will seem hard to get hold of your rheumatology helplinè (some only operate one or two days per week) but ther's no real alternative. Your GP isn't a rheumatologist and can only prescribe DMARDS as directed by a rheumatologist.

I've taken meth and hydroxy for yeárs for my RA but the meth requires regular blood tests and the hydroxy regular, though infrequent, eye tests.

If your rheumatologist has said it's OK for you to take the month's supply, and if you're in a bad way, then why not take them but ensure you do touch base with the rheumatologist to see what comes when you reach the end of the packet. If you only get an answerphone make sure you leave your name, address and phonenumber.

Indecline

I feel your pain about not being able to get hold of anyone in Rheumatology. I've been left unable to walk on a couple of occasions for want of being able to talk to anyone. I do wonder if anyone has done research on the impact of communication on clinical outcome for the patient.

Hermione

You may have been given a month's supply but if this is on repeat prescription from your GP then you should be able to get more from them when you are about to run out. My GP will only prescribe meds for one month at a time. Under a shared care agreement with the hospital, the consultant prescribes and the GP issues the meds on an ongoing basis. HCQ normally takes several weeks or even months to start to work so you may not feel any effects until you have been taking it regularly for a while. I took HCQ for many years (I was told I would be on it for ever!) but when my RA went into remission I stopped it, to see if I could do without - very fortunately I am still OK. The aim of immune modulatory drugs like HCQ is to help prevent problems and so if you only take it intermittently when you have a flare, it will not have time to build up and do its work. It's not a quick fix like a painkiller.

Have you tried phoning or emailing your consultant's secretary? Secretaries are usually really helpful and will ask a consultant or specialist nurse to contact you if you're having trouble getting any call back from the rheum dept helpline. I've known a helpline to be out of action for days because of a technical problem so I can never assume that the message I've left has actually been heard.

Have you been offered an occasional "as needed" steroid injection to tide you over when things are bad? Sometimes this can be startlingly effective but I don't know whether it is appropriate for palindromic arthritis - you could ask? Some GPs even do these if they have the right training, I believe.

Really hope you are feeling better now, just realised your original post was ages ago but the latest reply is more recent - hopefully this may help anyone with the same sort of question.