How long for hydroxychloroquine?

I have just been diagnosed and given a steroid injection. I have started hydroxychloroquine but I gather that it doesn't work straight away. Will the steroid wear off and it all come back until the hydroxychloroquine starts working? I am worried as I felt so awful and it feels so amazing to feel normal (if a bit manic) after the steroid. I don't want to go back to how I was. I felt about a thousand years old, it hurt all the time, even in bed and I couldn't move. Now it has stopped, I don't know how I was coping.

13 Replies

  • Like you I was started on hydroxychloriquin plus a steroid when I was first diagnosed. The steroid lasted 6 weeks, wearing off gradually but sadly I didn't respond to the hydroxy and was moved on to another medication. If I remember correctly everything takes a few weeks to get into your system so you need to give it a chance but will probably be able to tell if it's working by the time the steroid wears off. If you're lucky you will do well on it but if not there are quite a few other meds that your rheumy can prescribe.

    Everyone seems to respond so differently and it is all a bit trial and error to begin with, but at least you are on the road now and will hopefully start to feel more normal. ( I remember that thousand year old feeling only too well and would never want to be back there again either :) )

    Best of luck, K

  • The same as you I was given a steroid jab early on. Although it didn't last right until the drugs started working, looking back I was never in as much pain as I had been at the very start. I kept a picture diary and that really helped me see that I was improving (if you want to look, search for my post about red blobs) and motivated me to keep going.

    My rheumy was good and gave me another one 3 months later, which worked as well as the first one. She said she was ok about giving 3 a year, but not something to rely on for ever. So if you do start feeling really bad again you can always ask.

  • Hi Ironingboard

    Hydroxychloroquine seems to be the DMARD that has less side effects than the others.

    I'm afraid to say that at the beginning of treatment it really is a trial and error, roller coaster process and any of the other first line treatments such as Methotrexate and Sulfasalazine can take weeks to get into your system.

    Hydroxy seems to work in a subtle way.

    I'm pleased that you responded well to steroid injections, They didn't work for me at all.

    i hope you have been given the rheumatology nurse helpline? It's very important to get a good support system going between yourself, your GP and the hospital.


  • It took about twelve weeks for Hydroxy to work for me but was really effective once it did. Luckily I was given a three month course of oral steroids to tide me over so I didn't ever have to deal with symptoms coming back full force.

  • It took at least 12wks with taking 400mg daily to be able to tell a difference. Now don't get me wrong, I still have some "bad" days, but at least it's not everyday!

    Hang in there, once you find what works for you it will get better! Praying for you!

  • It takes about 12 to 16 weeks to feel the full effects of this drug. I hope it works for you as well as it did for my husband. He now only takes one pill aday and he is in remission.

  • I started the same thing over 6 yrs ago! Plaquenile and steroids for 6 days...Have been on Plaquenile ever since (200) and it still works great!

  • I was given 2 steroid injections right from the start before mtx work on me. I was also given Prednisolone 2.5 mg daily for 6 months. However, I was still in great pain during this period and I was also given many kind of painkiller alongside. Mtx started to work for me around 14 weeks and I always looked forward every week to take another round of mtx because each time I took, it reduced my pain very much.

    I did not find prednisolone helped to reduce my pain. I still could not get out of my bed and the pain woke me up every night until many months later. But when mtx started to work, it helped to reduce a lot of my pain and I could get out of my bed in very much lesser time each time I took mtx.

  • Sadly, I am starting to get some symptoms again. The steroids are wearing off. I am a bit down about that as it was so nice to have a complete holiday after the steroid injection and made me realise how bad things had become. It is only a faint echo of the pain stiffness and swelling I had before but I am a bit down about it, although am probably catasrophising a bit. The doc has put up my hydroxy to 400mg. Hope that this works quickly. He said I can have more steroids but I said I will hold off as I know I can't keep having them. I am madly rushing around trying to do everything whilst I can, like cooking meals for the freezer (so I eat properly) cleaning my flat, tidying up and bits of DIY. I feel bit like the whole "winter is coming " thing on Game of Thrones.

  • How long have you been on hydroxy?

  • 2 weeks on 200mg and 1 day on 400mg.

  • You're still in the very early stages on hydroxy. You have to wait another 10-14 weeks to see if it works for you. Why not go to the doctors and try a daily steriod pill (prednisone) for a few weeks to tide you over? Then after 8 weeks start to wean yourself off of the steriod to see if hydroy is working. I'm not a doctor, but this is what I would do if I was in your position.

  • Hi, HCQ works for a lot of people but sadly for me, I'm not one of them. Neither has MTX so far - on it now for some 6 months all in.

    The point of my post is not to put a downer on you, but to help you be aware that it might not work, AND there are other the options you have IF it doesn't work. There is a whole path of ramping up the drugs!

    So hopefully it will and you'll get a reduction of symptoms. But don't despair if it doesn't - there's still hope!

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