hi!
After having ana test aprox.7 months ago 1:320 fine speckled .homogenous etc...and crp elevated....
I now seem to have negative ANA says 0.4...crp 1.6...
Im dumb..is it plaquinil did that, or has disease gone away or in remission?
I do have one test out of range so far leukocytes 1+ then says A.. Not sure about what that is..
Funny thing im actually having more pains, and first time pain in baby finger and thumb...but more energy I think.
It takes four to six months for hydroxychloroquine (Plaquenil) to reach full therapeutic levels in your blood stream. Your ANA levels do not always correlate directly with symptoms. Most of us with lupus tend to have low white counts, that is, we are leukopenic. High white counts indicate that there may be infection somewhere. Are you on any other medications?
Plaquinil will do that.. It reduced my symptoms especially inflamed joints.. I myself wondered if my lupus had gone into remission on its own and I decided to stop the plaquenil.. Within a few months I was in terrible state again and eventually I went back on the plaquenil. The main symptoms I have now that the plaquenil doesnt help with is the fatigue and the brain fog. Overall, life is much easier for me on this medication rather than off it.
Super good to know, thank you...I'm still not 100 % with my energy, but its lots better (could be thyroid doing funny things, as mine does)..Every thing looks good the doctor said, so I requested plaquinil every other day...see how that works. I will ask in about 3 months for follow up with ANa and the CRP...good indicators to see which way its going for me. I still get the aches, but inflammation is low??? I'll just go with it for now...Its a learning process.
when you went off plaquinil, how long in months you reckon till your symptoms came back? Im cutting down (with doc permission), but not sure when to go to local gp to retest. My rhumey is in town far from here...its kinda left up to me.
I've found that Hydroxy (mine isn't called Plaquenil) seems to have taken effect very fast although my diagnosis is that of RA not Lupus. My ANA was negative but I think my rheumy considers it possible that I still have Lupus or Rupus because my symptoms are changing all the time and the RA ones are much less apparent now. I was on Hydroxy with injectable Methotrexate for a year and it didn't seem to make much difference in the doctor's view (he credited the injectable Methotrexate with all the improvements) but to me it did make a difference as my ESR was at it's lowest when I was taking it and it was also the one DMARD I could tolerate. So I went back on it on its own six weeks ago after 6 months off it - and it seems to be working miracles because my inflammatory markers are dropping, I'm in very little pain and the stiffness is greatly reduced.
Like you I live a long way from my rheumy and things are kind of left up to me too as my GPs are very laid back. But like you my energy levels are very low now despite absence of joint pain. Two years ago when I was diagnosed with RA my rheumatoid factor was a lowish positive but recently when it was tested it was negative - which I feel must mean something about the drug treatments I've taken to date.
hey Rarebird...Hydroxy and Plaquenil are same think..pretty sure. On my pill bottle says hydroxyquine..then hydroxychloroquine...doc just says "Plaquenil"..easier to remember etc...So you think even after 6 weeks back on, your tests show a difference? I will keep that in mi nd...thanks Rarebird
I do think so but only the joint pain and swelling. To be honest the symptoms that have been plaguing me for many months continue unabated but the joint pain has more or less vanished as has the neuralgia and flu-like pain so if Hydroxy/ Plaquenil (the trade name rather than generic I think?) is the reason then I love it but would like something to happen with the hives and parasthesia and dry eyes too so here's hoping..! X
Its difficult to say what happened when because I have suffered from memory loss and brain fog so much during all this but I stopped taking the med and within 6-8 months I was on my knees, really ill and had to stop working. I havent worked since. That was 1 year ago. I went back on the med as soon as I crashed last Jan. It has taken a year and Im still not back on my feet but things are still slowly improving. It has been very slow! It was towards 6 months til i started to feel much change at all. My day to day quality of living is much improved in that year but there have been no signs that I will be able to resume my energetic life as it was. Last consultant appointment I was told to just keep taking the med as symptoms can still be improving going forward. I hope this helps
yes its slow acting I agree, but all of a sudden you feel like you can do a bit more...I still get flashes of like arthritis...im trying to see what might trigger that..it baffles me. Brain Fog...arggg yes horrible.(but never know if that's lupie,thyroid,or menopause stuff over here
Id say im half the energy I use to have...
I be on plaquinil for one year so far. my energy level is super low and I also feel tried. my symptoms have been on a stand still but my energy sucks. I can do half the things I was able to do before. but I rather stay on it
Im trying to see how low I can go dosage wise on Plaquinil, before inflammation and the goofy ANA test thing comes back up. Its going to be a tweaking thing, because my thyroid I think and thyroid meds, might be playing into all this too. Doc agreed to it...so see what happens.....I think Im sensitive to drugs...I can take a arthritis pill occasionally (diclofenac) and it will knock me right out!
Hi. I've been on Hydroxy for about 6-7 weeks for Lupus and I can feel a difference already. My skin problems, back, chest, arms and lupus butterfly on face are much better already but I am still struggling with headaches, dizziness, nausea, tiredness and I don't think my hair loss is completely under control. But I know it's early days and it's a case of learning how to live with it and learning what I can and can't do. I am wondering if my meds have caused a recent relapse, as first month of tablets was just generic hydroxy but second month Plenquil. Will this have an effect on me?
To repeat myself after similar question a few weeks ago, I too started with hydroxy and prednisolone. It did help more than I realised. Other meds have been introduced over the years, all have come and gone but I still stayed on hydroxy and pred. When I asked why do I keep taking hydroxy when it obviously wasn't enough, the Drs said our prescriptions are a bit like cooking. You need more than one ingredient, and a little bit of everything helps to make the dish. However a change of rheumy, decided it didn't have anything wrong at all, and stopped all meds !!! When I was left with just hydroxy to stop, I didn't think it would make a difference. How wrong I was. I became sun sensitive again and still have lung and liver probs. my blood was depleted of iron and new rheumy has been trying to get me back on track since. I have complained about old rheumy with no response. New rheumy is from St Thomas's who actually diagnosed me in the first place. Lucky me to have her now at local hospital. I have been lucky to have GPs and ( most) rhuemys , who are not too quick to prescribe, but hydroxy is I believe a major drug for lupus.
Ive pretty much followed weight watchers maintenance diet for like 33 years...pretty balanced.
yup..
in a day I eat:
4 breads
1 cereal
3 fruit or more
2 salad & a veg
2 protein
2 milk
3 tsps. of fat
and adding more water than before...going for 7-8 liquids a day
I pretty much eat similar...except I use good peanut butter and yougurt...so in the peanut butter is more fats.. They tell you to eat way more fruit and veg than I do....but many don't. I use olive oil....I at times use more fat, but mostly a tbsp. a day...there is fat in everything! But hey thanks for trying to help me
I do the yougurt cause the acidophulus is good for your stomach(not the sugary kind)...and the peanut butter I grind at my local health food store...(good quality)
Everyone has their way of doing things...
I read what you said, and appreciate it. I listen..
Diagnosing blood tests
Anti DS DNA results 
Fourth Positive ANA 
LUPUS??????
