Does hydrox..... help control pain?

[Hanny]

My consultant has insisted I reduce from 200 to 100 after two months my overall pain levels have increased. Is this a coincidence or has anyone else experienced something similar?

[Sher78]

Theoretically, hydroxy is NOT a pain med BUT it helps 2 reduce some of the lupus effects such as swollen joints so it makes perfect sense that if the dose is reduced, the swelling will increase, thus causing more pain than u're used 2.

[Hanny in reply to Sher78]

Thanks this is what I thought was logical, however as my bloods are 'normal' he said to leave it at 100 and doesn't want to see me again.... I'll go to my own doc and see what he thinks.... I was perfectly fine on 200... perhaps I will need to be more assertive but don't like to appear a moaner

[Sher78]

Definitely be assertive, bloods mean naff all, mine r positive 1 minute, negative the next & I was diagnosed 19 years ago! My bloods were neg while I was in the middle of a really severe flare & if u speak 2 others on this site, many will say the same. Rheumy's (no matter how knowledgeable they r) don't always know everything

[roobarb]

How about asking for a referral to a lupus specialist, Hanny? They understand the subtleties if lupus much better than your average rheumatologist. There is a list on the St Thomas' lupus trust website. Or, as others have done, you can ask on here for recommendations in your area. X

[Hanny in reply to roobarb]

Thanks roobarb, this was at the lupus clinic N Tees, (at about 100 miles round trip ) is my nearest, however I have not seen Dr Spicket for a while now..... thinking of transfering to Leeds which is a similar distance. Any thoughts outy there?

[lupie-Cathy]

My Consultant put my dose of Hydroxychloroquine down from 400mgs to 200mgs and within the week I was knocking at my GPs door asking to be put back up again! When I next saw the Consultant he told me that's the only way they have of knowing whether the medication is working! So I should see your GP and ask to go back to 200mgs. Plaquenil works as an anti inflammatory so it does have an effect on the pain to a certain extent but works on each person differently but certainly do ask to be put back up if the pain is worse! Good luck

[Hanny]

Thanks that gives me the confidence to go back, I'll give it one more prescription to see if settles if not I'll see my own doc

[EOLHPC]

Hydroxy 400mg daily definitely helps my pain control big time. I live in dread some dr might try to take me off it

Mid 2010 I started on 200 mg plaquenil and tolerated that fine, so after 2 months went up to 400mg daily. Within 3 months plaquenil's antiinflammatory pain reducing effects were clear, and this Rx continues to tke the edge off much of my pain. (this was after years of chronic joint & soft tissue pain due to undiagnosed SLE: during those years no meds really helped break my constant pain cycle (tried loads for decades c/o NHS gp & pain specialist, ok in huge spasms morphine helped, but NSAIDs etc no!)). Now, to my amazement, the occasional paracetamol actually helps: it never did before plaquenil. Now for the first time in years I can spend a bit of time curled up on the sofa with my husband.....

So, I'm really interested in your ? And these replies: am wondering, what reason did your consultant give for this decrease? Was plaquenil adversely affecting some aspect of your health? (have you lost weight?: the dose is linked to body weight apparently) have you had regular visual field tests? And my gp checks my kidney/liver function every few months...)

often on lupus forums I read members saying they've been on 400mg for, say, 20 years with no probs

Good luck: I agree ith the others: confident assertiveness: your consultant needs to explain why he wants you off plaquenil. If i were in your shoes: unless he has a REALLY good reason, I'd do my utmost to stay on plaquenil.

Take care

[Hanny in reply to EOLHPC]

His main priority seems to be 'Do you have any hair loss?' and 'Do you have ulcers?'

I have no adverse effects from the plaquenil, excellent optitiian, excellent dentist who take good care of me and are really switched on to the condition.

When I said I had a lot of joint pain the implication was weight and age.... over weight but not obese and 60......

thanks for your reply all helps a great deal.

[EOLHPC]

hi again hanny

snap: am 60 in october (weigh more now than when i was younger, but am not obese....)

i agree with sher & others: bloods results fluctuate so much and should be considered as only one aspect of our overall pictures: symptoms generally are what really count...i was diagnosed and am treated ongoing mainly on the basis of medical history and current symptoms

i feel incredibly fortunate to be able to take plaquenil without adverse effects...it really seems to disagree with some people

hope you'll let us/me know how you get on