Need help !

[Dinasamir]

Hi, I'mat rheumatologist clinoc right now and she just prescribed me Plaquenil. She didn't gave me any diagnosis. It's based on my ANA 1:160 and C3 complement 89 (normal 90-180), and i have mild pain at my fingers joints. I just need to know is it ok to take paquenil or to take another opinion. Pls i need your opinion. Many thx

[whisperit]

Hi Dinasamir,

Plaquenil/ hydroxychloroquine is widely used, partly because it has a reputation as a safe and well tolerated drug.

However, it sounds like your rheumy hasn't adequately explained why she's made this prescription, and you have questions that still need answering.

If you are still in the clinic, perhaps you could collar one of the nurses to explain this, and see if you can have a quick word either with the rheumy or a specialist nurse? Alternatively, you could make an appointment with your GP to talk it over in a few days, once s/he has a report from the rheumy?

x

[Dinasamir in reply to whisperit]

Thank you so much for your reply, i talked to her already and she said that i definitely have an autoimmune disease but still very mild and she can't tell whats the disease exactly. She said if I'll wait without medication my symptoms might get worse and I'll need steroids. So she prefers to start with paquenil to avoid steroid. I don't know if that makes sence or not but I'm thinking to see another rheumatologist to take another opinion. I just need to know if I'll start the Plaquenil do i have to take it all my life? And would it help with mild joints pain?? Thanks a lot xx

[whisperit in reply to Dinasamir]

I am no expert, but yes, that sounds a normal thing to do. Your rheumy believes that your joint troubles and blood results show that your body's immune system is overactive and Plaquenil/hydroxychloroquine is a very common drug that seems to modify the immune response and damp down those symptoms. There are lots of conditions where it can be helpful, so in that sense, it doesn't matter too much exactly what diagnosis you have - its like a general purpose immune modifier.

I gather that it usually takes a few months before you get noticeable effects, so you have to be on it for at least 12 weeks. After that, it will be reviewed.

Is there a specific reason why you are thinking about a second opinion?

[Paul_Howard Partner LUPUS UK in reply to Dinasamir]

Hi Dinasamir ,

whisperit is completely right. Plaquenil (hydroxychloroquine) is prescribed for a range of different connective tissue diseases because it has been shown to be effective at controlling a range of different symptoms, reduces the frequency of flares and lowers the risk for some comorbidities whilst also generally being very well tolerated with few/no side effects. It is often helpful with mild joint pains. It is important to bear in mind though that it can take 3-6 months to kick-in, so it does require patience.

Plaquenil is often prescribed for many years and in some cases for life because it is so helpful for controlling certain symptoms and reducing risks of things like heart disease. In some rare cases it may be stopped if the person experiences any damage to their eyesight (it is recommended to have this tested every 12 months when on the drug). It usually takes many years before this side-effect may be a concern. In other cases it may be stopped if the consultant feels that the condition has gone into remission and it is no longer needed - usually it would still be continued however to reduce the risk of a relapse.

If you need more information about lupus, we have a free pack which you can request or download from our website at lupusuk.org.uk/request-info...

[Dinasamir in reply to Paul_Howard]

Thank you so much for your reply, it's really helpful. But i just need to know something, I'm not diagnosed yet with autoimmune disease. I went to another rheumy and be suggested to wait and not to take plaquenil yet cause we're not sure yet. He said i might develop an autoimmune disease and maybe not cause my ANA and C3 results are border line. So I'm comfused and can't take a decision to start the medicine or not. All my symptoms are mild fingers joint pain and very mild rash (not the butterfly rash) on face. The dermatologist said it's not lupus rash and it might be mild rosacea cause it'smore like pimples and pustules. What do u think i should do?

[Paul_Howard Partner LUPUS UK in reply to Dinasamir]

Hi Dinasamir ,

I can't tell you what to do I'm afraid, the decision is yours. As we've said, hydroxychloroquine is generally very well tolerated with few or no side effects. You could try it for a while and see if your symptoms improve. If they don't then you could come back off the drug.

The diagnosis of conditions like lupus is not often straight forward and there are many people who fall into the category of a 'lupus-like' condition or 'probable lupus' or undifferentiated connective tissue disease (UCTD). These may or may not develop further in the future.

You need to choose whether you want to manage with your symptoms as they are, or if you want to risk any potential side-effects for a possible improvement.

[Dinasamir in reply to Paul_Howard]

Thank you Paul 😊

[Dinasamir in reply to Paul_Howard]

Honestly I'm worry to start the Plaquenil and to take it for few years without knowing if I have a disease or not !!!! The rheumy that suggested to wait is refairing my joints fingers jpint pain to vitamin D. I had a vitamin D deficiency for years without knowing until it became 10 ( very low level) i started the medication 4 month ago and now it became 63. I'm so overwhelmed and confused and sometimes i think maybe i don't want to admit that i have an autoimmune disease 😏