[Meriel]

Hello

I saw a Doctor today and I'm terribly confused and could do with some advice.

I was diagnosed with SLE last September (I mainly suffer from dreadful joint and muscle pain and fatigue) and I started on 200mg Plaquenil in October. In January my dose was increased to 400mg because I kept flaring and hadn't noticed any improvement in pain. Over the last couple of months my energy levels have got better and my glands have gone down but there hasn't been any significant improvement in my joint or muscle pain.

When I saw my Rheumatologist in January he said that I have Fibromyalgia as well as SLE and that this is what is causing most of my pain. As a result my GP referred me to a fibro specialist. I saw the fibro specialist today and he asked me lots of questions and felt for tender points on my body and told me he is sure that I don't have fibromyalgia! I have pain in nearly all my joints but they don't correspond exactly with the fibro tender points.

I'm now really, really confused :. If I don't have fibro then why am I still in so much pain? Having read lots of posts from others on this site it seems that usually people respond to Plaquenil within a few months. Now I really don't know what to think. And why would my Rheumy diagnose me with Fibro if he wasn't certain that I had it?

Advice much appreciated

Many thanks,
Meriel

 

[pollianna]

Meriel am so sorry you aren't responding to the Plaq. My rheumy told me that there are other antimalarial drugs I could try if the Plaq doesn't work. I too was diagnosed with fibro but it wasn't Fibro. I don't know much about this but I think if you go back to the rheumy with Fibro ruled out surely they have to give you a different antimalarial. Mind you I just had a thought. if you only upped in jan then it might take the Plaq a few more months to work? we are all so different and it all depends on body mass....

Hope it passes soon xxx

 

[Katharine]

Hello Meriel,

I'm sorry that you're feeling so rough and confused.

Fibro is indeed diagnosed by reaction to a certain number of tender points that we have on the body.

There is however possibly another explanation. I have read that lupus pain and fibro pain can be pretty indistinguishable for some people. Your rheumy may be thinking that you are suffering from fibro-like pain even if it cannot be officially diagnosed as fibro.

It's good that you have responded to plaquenil even if that response is not enough. For some people the response isn't enough and we may need to combine with other meds in order to obtain sufficient relief. A degree of muscle pain/stiffness and joint pain may still remain but it should be a lot less.

You might be able to obtain further relief from NSAIDS or maybe even some of the meds that are prescribed for fibro.

I think you need to call your rheumy and tell him how that appointment went. Ask him what he thinks and what the next step is. Finding the med that suits might be a question of trial and error. We do often have to try a few things before finding what works best for us as individuals.

It is confusing but unfortunately with lupus and linked problems things are often not very clear cut.

hugs :hug:
Katharine

 

[Jackster]

Hi Meriel, just thought I would let you know that it took nearly 12 months of taking plaquenil for me to feel the benefit, I mainly suffer from joint/muscle pain and fatigue too, but at the moment I am much better, sometimes it may take longer for some people than others. Hope you feel better soon, take care.

 

[x_claire_x]

Hiya, I was going to chip in that plaq can take a long time to work, I was upped to 400mgs in Jan too from 200mgs in Dec, and it is only just starting to work though reducing pred too so got some relief from that too at the moment, every time I go down I am in joint pain again,, it usually levels off over the next ten days until I go down again!!!!! what a rollercoaster it is
Like the last person said you need to give it a good year before giving up on it as it is so slow working.
Claire X

 

[BigSis]

Hi.
I too get nasty muscle aches but haven't a fibro diagnosis...'just' SLE.

Like Claire I am tapering pred and every time I drop I feel like I've been battered. Struggling a bit but plodding on. Plaq has helped with the joint pain a lot.

 

[peonyprincess]

Meriel,

I am so sorry that you are going thru all of this. Pain is a horrible thing to have to deal with as well as trying to figure out if someone is going to toss another diagnosis at you. As for the Plaquinel, the length that it takes before someone feels a positive response can vary from person to person. I was one of those who responded fairly well, however, I know others that it took quite a while for it to kick in.

After a while, the Plaquinel wasn't working for me so my doc added Immuran, an immunosuppressant, to help get things under control. It might be something to talk to your Rheumy about. Are you on any muscle relaxers, antiinflammatories, pain medications or anything else?

Sometimes, unfortunately, it is trial and error with medications to get the right dose and the right medication to work for the patient. Not everything works for everyone. As for the diagnosis of Fibro then to be told that you don't have it, that has to be difficult. The only thing that I can say is that no one is perfect. I know that doesn't fix everything but its true. Your Rheumy must have really been convinced that you also had Fibro or else he would not have sent you. Discuss the issue with him and let him explain to you why he thought that and then discuss other medication options that are available to you. Don't give up, there is alot out there for you.


Nancy

 

[Meriel]

Hi

Thanks for all your advice and suggestions.

I will persevere with the Plaquenil and will go back to me Rheumy and see what he says about the fibro un-diagnosis. I know I need to be patient but it's really hard when you're in pain!

Best wishes to all
Meriel

 

[onetay]

Meriel,
It is possible that you have two things going on at the same time. Have they looked at arthritis in the joints, if not they should. You sound like you are having a good reaction with the plaquinel and now you need to add a pain pill or a muscle relaxer to the mix. I have sle along with ra so that is something to look into. It could still be fibro but not advanced enough to be seen. You have the pain so don't give up and let them know that you have to have something else that will help. I hope you feel better soon. Have a nice easter.

 

[keebler]

Hi Meriel,

I think one of the hardest things to do when dealing with lupus is the waiting for the meds to kick in.

Giving plaquenil more time is a good idea. I do think also that I would give your rhuemy a call and tell him how you are feeling.

I hope you get to feeling better soon.

:flowery:
Lyn