What made you decide to start meds?

[mdoats]

I'm curious to hear other peoples' stories. What symptom was the straw that broke the camel's back for you? What made you decide to start the meds?

While my symptoms are a drag, so far I've felt that the meds and the side effects might be worse. I haven't wanted to start the meds until I really felt that I needed them. While I have occasional bouts of exhaustion, for the most part I've been able to deal with them. And most days I can deal with a lot of the other annoying smaller things like my thinning hair etc.

But if there's one thing that I'm really having a hard time dealing with, it's the almost constant pain from sciatica. It's always much worse when I'm in a flare, but the pain is pretty much always there. I have no idea if plaquenil or any other med will make much of a difference in sciatic pain, but if something is going to push me to starting to take regular meds, it would be the hope of managing the pain of the sciatica.

[Clare.T]

I doubt that Plaquenil would help with sciatica. It's not a pain killer but a disease modifier.
I take meds because I don't want my symptoms- although I can 'live' with them, and especially, don't want worsening disease. I have no side effects so far.

If I didn't take them and did get severe disease I would blame myself whereas if I do take them then I would think it was just bad luck and I'd have done my best.
You can't know if you'll tolerate them well, until you try them. If you can't tolerate them, you stop them.
If I had been properly treated from the get go, I would have been spared a lot of misery.
I wasn't partly because of the medical ignorance of the time - 34 years ago - and some of the most useful medicines weren't available.
:)
Cheers
Clare

[neongirl]

I had the fatigue (death fatigue as I call it), was covered in spots, had a malar rash and joint pain........saw no reason to go to the Dr. again.......Then I started feeling like my heart was litterally turning over inside my chest and then fluttering, that couple with the fact that it was very difficult to breathe made me decide to take the meds the first time they were offered:blush: I don't want to think about what would have happened had I not taken them:eek:

[Clare.T]

I didn't really answer your question. I wasn't offered any medication at first, just topical steroids for skin. But the skin got worse then I was offered Plaquenil. Well I was in good health otherwise and for me people took medicines when they were 'ill'. I was 30 and had had antibiotics maybe twice in my life, perhaps a few aspirin,and some anti depressants and tranquillisers when I suffered a severe anxiety state, plus some medicine for cystitis. I suppose I couldn't really imagine having a chronic illness that was not likely to go away especially when it was only skin affected.

I had no idea about systemic disease.

Another doctor whom I saw about something else, commented on my skin and persuaded me to try the Plaquenil. By that time I really was suffering from it, very sore and very obvious.
It continued to spread and spread. I was told that the arthritis and fatigue were due to poor life style. When eventually I was put on Plaquenil full time instead of now and then, lo and behold the arthritis was markedly less and I felt better in general although skin still progressed inexorably.

When eventually about 8 years ago I was properly medicated the arthritis went completely, I felt full of energy and skin was 90% improved.

If I choose to think about it I feel very bitter. I was very very lucky indeed though that my lupus never progressed to worse forms. If I reduce my meds symptoms come back. I was also very very lucky that I happened to be in the right place at the right time to get the treatment that put me into remission.

Cheers
Clare

[helloos]

I think when you are at the point of every part of your body not working, being in pain, different symtoms, etc. and so fatigued, you are willing to try anything since you know you cannot continue.

If you can function well from day to day, then I would say there are some simple meds with hardly any side effects that will help you. But if you cannot function and your symptoms are interfering with your lifestyle, then you should be willing to give something a shot.

[Joandublin]

Mmmmm.... I didnt 'make' the decisions to start meds. What I mean is that I was never at a point where it was a choice between taking them or not taking them.

I was feeling so awful and was just so thankful that something had been found and that there might be something that would help - so I took them:)

Luv n stuff
Joan:rose:

[RachelSut]

Joan, yes i agree entirely I never made a conscious decision re meds-if they help i'll have them!!:)
Rachelx

[Lily]

Hi,

I'm similar in that by the time I got diagnosed and was offered the meds I was extremely grateful to have them. It was a question of quality of life, disease management and pain management. Without them there was very little quality of life, without them my disease was progressing rapidly and without them I had very inadequate pain relief.

Has your sciatica been thoroughly investigated and treated in and of itself. Thats what I'd be pursuing? It's probably a seperate issue even though it flares up worse when your other stuff flares. Whatever we have going on is bound to crop up and be made worse by the stress a lupus flare places on our bodies.

My usual advice to anyone who is not having too much trouble with disease symptoms is to make sure you have regular followups with a Rheumy, we arent really able to tell if Lupus is affecting us in ways that arent obvious. Such as kidney disease for example. So regular follow up for signs and symptoms of disease worsening is especially important because the meds can help prevent that happening and change the course of it in many cases.

You dont say what sort of Lupus you have either? Discoid, Sub Acute Cutaneous or SLE. Most diagnosed SLE patients and their docs agree that it has the potential to turn nasty and will start someone on at least Plaquenil and keep a close eye on them. It's a pretty safe drug and well worth the 'insurance' it gives us when you consider the things that can and do happen in unmedicated disease.

And even in Discoid & SCLE Plaquenil is indicated. Apart from the obvious benefits of relief of symptoms it can help stop your immune system from going the next step to SLE.

love
Lily

[frono]

Oh boy, I was so tired, in so much pain and my butterfly rash on my face was screamn' red and scaly (i was embarassed to be seen in public), when they offered drugs I just asked when and how much!

What a lifesaver prednisone was for me. I felt like I could at least function back in the real world again.

[mdoats]

Thanks for all the replies. You make a great point about the fact that you can't always tell about things like kidney disease. Something for me to think about.

My quality of life hasn't been affected enough yet for me to be willing to go on meds long term. My doctor keeps a pretty close eye on me though. I see her three or four times a year and she's very willing to run any tests she thinks I might need.

I know that Plaquenil isn't really a painkiller, but my sciatica is very definitely affected by my flares. It really becomes unbearable when the rest of me is falling apart too, which is why I think that something like Plaquenil might help.

[Clare.T]

Yes, one of the benefits of Plaquenil is that it reduces flares. Each flare could represent a worsening of disease. In obvious terms a person with discoid lesions risks more life long scarring each time they flare.

Since this is a forum with a lot of newcomers it's worth mentioning that Plaquenil the medicine most widely used and often all that people need for the less severe sorts of lupus has no more risk of side effects than any OTC pain killer which people take with a second thought.

Personally, I don't understand the logic of taking a pharmaceutical for one sort of pain and not taking a very useful medicine to help modify the progress and ease the symptoms of a potentially serious even life threatening disease.
We don't know how many people would not have needed very heavy duty meds if they had had the opportunity to get the disease under control earlier.
It is of course personal choice but has to be made with the right sort of information and full appreciation of what the decision not to medicate might mean.

Good luck

Clare

[goats]

I did not have a choice, I became very sick and was dx with lupus, I was in a bad flare with lupus playing havoc with my body,If I wanted to get out of bed and eat it was meds for me.
that was three years ago and I still need the meds to get out of bed and function, hopefully some day I will not need them.
education and doctors close follow up are the best advice I would give anyone if asked

[sheila t]

Well For me taking meds was a god send. I was weighting about 100lbs. I was so ill, exhaused, in so much pain, cover in rashes and in Hospital at the time. I had just had a nervous breakdown, because I felt so ill. I had been feeling ill for 11 years and to get a DX while in Hospital and started on meds, to help with my Lupus and depression was enough for me to say thanks, I now got something to help with all this pain and I had a proper DX.
Sheila xxx

[Lis]

Mdoats,
I never even considered the possibility of not taking anything once I got the dx for lupus - I was given Plaquenil and just took it. I'm glad I did as once it kicked in it has definitely made this disease easier to live with. I do also get bouts of sciatica. Following a particularly bad bout last year the dr put me on dicolfenac which seems to have done the trick and I've not really had any more problems with the sciatica. It also had the additional benefit of making my joint pain less severe and my joints don't swell as much or as often as they did. Dicolfenac can have side effects though - for me although I take a brand with a stomach protector, it has had some effects on my stomach causing some bleeding. This has now been stopped.
Hope whatever you decide to do you keep well and keep the lupus at bay.
Lis