One month on ......

[Harry19]

Hi guys

One month on from my diagnosis . And commencing steroids for 1 month and plaquin . I’m still feeling awful and my skin itches all over my body . Should I feel some benefit by now ? Should I be recontacting the rheumatologist ?

Thanks

[whisperit]

Hello Harry19

Sorry to hear you're having trouble. The general consensus is that HCQ (plaquenil) is unlikely to have a significant effect on your immune system for at least 6 weeks, but on drugs.com, pruritis (itchy skin) is listed as a "common" side effect.

Steroids are generally much quicker acting and usually produce a noticeable reduction in inflammatory symptoms within days.

You haven't mentioned what your main symptoms are, but in any case, it sounds like it would be a good idea to contact your rheumy service. Most places have a specialist nurse contact line, and they ought to be happy to hear from you - especially as you're new! x

[Harry19 in reply to whisperit]

Thank you I’m exhausted and I’m struggling to get motivated I’m achy and my mind just isn’t working is the only way to put it.

Steroids have not had the positive impact people suggested they would sadly . I’m gutted

[whisperit in reply to Harry19]

What dose are you on?

[Harry19 in reply to whisperit]

200mg plaquenin

Had 20mg serouds 1 week 15 1week 10 1 week 5 1week

[whisperit in reply to Harry19]

Thanks. That seems like a pretty conservative regime. It may be that you need a higher dose - but of course, I'm in no position to advise; that's a discussion to have with your rheumy.

[miccika1 in reply to whisperit]

Agreed with whisperit. You need to work w rheumatologist to find the proper meds and dosages for you. 200mg is not a full dose for an adult unlless you are very small. And the taper you described i usually take for flares but at the beginning i was on high dosage of Prednisone for couple of years.

[Salzer]

Hi Harry. I started hydroxychloroquine in August last year with a short six week course of low dose steroids. The steroids helped to calm things a little bit but certainly weren't the wonder drug I had imagined either. I was really disappointed but I think it was because the dose was so low (7.5/5mg). The hydroxy took about 4 months for me to start seeing any real difference. I was losing all hope! It builds up so slowly but it has started to help now. Do you have rheumatology nurses you can contact? It is definitely worth contacting your team for advice especially if the skin itching doesn't ease up. They might consider another short course of steroids. Many rheumatologists seem take the approach of starting you off on lower doses of medication to see how you do and then review. But it is hard to keep believing when you desperately want to feel better. Sending you strength to hang in there. S

[Harry19 in reply to Salzer]

Thank you . I’m preying for some positive change