Hey so I'm new to this forum, but I would just like to announce that I've been officially diagnosed with lupus after a year of symptoms!!! I spoke with a rheumatologist and my ANA and DSDNA came back positive, and tomorrow I'll be picking up Plaquenil and Prednisone and getting more tests done to help secure the diagnosis.
I am so happy and my family can't understand why, so I thought I would just announce it here. I also feel kind of guilty that it wasn't a long road to a diagnosis like some people suffering on here I hope you all find answers soon.
I was also just wondering how well you guys found Plaquenil to work over time? Just wondering what kind of hope I should hold out for it and its effects on symptoms.
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nellie_4132
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Congrats (I think) on your diagnosis! I've been on Hydroxychloroquine (Plaquenil) since my diagnosis in 2011, so a long time now! It's one of the less harsh drugs and works more in the background I think as it's just something I've always been on at the same dose and not really spoken about when I have follow ups - usually it's the other medication that gets talked about. It's hard for me to say if it's benefitted me greatly as I've always been on that plus prednisone plus various other (stronger) immunosuppressive medication but I'm sure it's doing its job! Just make sure to get your eyes tested with the special test that is needed before you start, and every year after! Hope you're ok in yourself, best wishes x
Hi.ive been on hydroxchloroquine for 2 yrs.when I first started it I had a bad head every day for a month but rode them out and have had nothing since.PL is right about about it being a background drug and eye tests its imperative you get them tested before you start and every year as it can affect your eyes.hydroxy seems to be the starting point for lupus treatment with other drugs added in at a later date.i also take prednisolone and mycophenolate.be prepared to be patient as these drugs take at least 2 months to start to work and even longer to gain full benefit.good luck I wish you well x
P.s if you are going to be on steroids long term i.e longer then a short dose of a few days or weeks then you need to carry a blue steroid warning card x
P.P.s I agree with Hamptons...its still a big thing to deal with,process and live with for the rest of your life x
Hmm, I'm really hoping to skip the headaches, I already have migraines, oof. I am set up right now to be on Prednisone for 4 weeks, beginning with 4 tablets the first week, 3 the next, etc. What is the blue steroid warning card?
Oh yea, three hours after my little celebration I cried three times in as many hours.
Took 5 yrs for me to get my diagnosis I didnt cry I took a more hard nosed approach and said (to myself) ok this is what I got to deal with onwards and upwards lass and just got on with it.i read and read whatever I could find but eventually found a book called the lupus encyclopedia.
You may not need a steroid warning card in that case but it's a blue card that fits in your purse and warns hcps you take steroids that must not be stopped ,dosage etc.ive been on them for 6 yrs and cant come off them every time I get down to 7.5mgs my lungs flare ( lupus has damaged my lungs) I'm currently on 8.5mgs 😟.have they checked your kidney function? I never used to suffer from migraines until recently and have worked out im uv sensitive and are caused by the sun so factor 50 ,hats,total cover up and shade are now required x 💛x
Oh, that's good to know, thank you. There were preliminary urine tests my GP ordered, but I know my rheumatologist is having me take some more today.
Yea I really need to start buying cute hats now, I haven't been in full sun exposure for a while, but when I was I developed a facial rash :/ that was really the only thing I noticed at the time.
Dear Nellie, I can empathise with the feeling of relief. The first step to recovery for us was the diagnosis. Sending you love and hugs. With best, Lale x
I completely understand you feeling happy to have a diagnosis!!! I felt so happy and relieved to finally know what was wrong with me and that it wasn’t all in my head. I only started plaquenil earlier this year and it has taken at least 4/5 months before I noticed any difference at all. Whilst I still get symptoms they aren’t as severe as before. Don’t expect too much straight away and keep going with it and hopefully you will see a difference after some time.
Yep, I thought I was going crazy, and when I researched my symptoms I did come up with lupus, but I would reason the symptoms away. It's nice that there's medical backing from my labs. Any pain less than this is welcomed, it hurts to stand, it hurts to sit, it hurts to lie down, etc. I have no problem being patient.
Hi Nellie, I am so very pleased for you, not thar you have Lupus but that you have a diagnosis in order that you can be treated. I too was diagnosed within a year and was on Hydroxychloroquine and prednisolone initially and took Hydroxychloroquine for nearly eleven years . It definitely dampened down my symptoms and helped the dreadful fatigue. I was on 400 mg daily and has no issues until last year a new Rheumatologist upped my dose to 600 mg. As long as you have regular eye checks you should be fine and hopefully feel better at last. Good luck xx
Hi and welcome to the forum, it’s a fab group - I was on plaquenil but unfortunately it messed with my eyes so had to come off it - I’m currently on Methotrexate- best wishes x
Sorry to hear about your diagnosis but glad you will get the appropriate treatment. My daughter is 9 and started on hydroxichloroquine in April. It’s has made a big difference to her. The fevers are controlled, her rash doesn’t develop as quickly or as pronounced if she is in the sun (very hard to keep a child out of the sun), her arthritic pain is much better and it’s made a big difference to her fatigue levels. She has had a mild flare since the medication but being as she was hospitalised for 2+ weeks before the medication it’s a million times better for her. I hope this is the case for you too. X
Hi Nellie, Lifesaver for me. It took a full 8 months to work, but took away my joint pain and muscle pain and severe muscle weakness. I have been on it 7 years now and I have to say it is the medicationI hope to never have to stop. I have refused other meds like azythroprine and methotrexate because I don’t like the side effects. HCQ for me, I had some nausea in the beginning but that went away quickly. I am also on low dose prednisone due to anaphylactic reaction to all NSAIDS. So I just take acetaminophen for aches and pains. I am also on gabapentin, I started it for nerve pain in my back radiating down my leg, but it didn’t word, however I noticed once I started taking it all my migraine headaches went away which I had been havin 2-3 days a week prior to that. I am sorry to report I still have fatigue and rashes on my face and neck but I can deal with that. You take good care and I wish you luck in your journey🍀. PS You are very lucky to get a diagnosis so quickly. It took me over 19 years.
Hi Nellie, a relief for you to get a diagnosis and welcome to this lovely supportive forum. Within 3 months of starting Hydroxychloroquine, it helped ease my joint pain, stiffness, muscle ache and fatigue. I have other AI conditions which require steroids and Methotrexate to keep under control. Good luck with your health journey, take it easy and post here when you want some help xx
So pleased that you have finally got a diagnosis and can now be given the correct treatment. It’s a great weight off your shoulders to be given an answer to why you’re feeling like you do. I know the feeling all too well.
I was on Plaquenil for 20 years after being diagnosed in 1999. I was taken off completely as the long usage could have side effects. I had no adverse effects at all whilst on it - but it did take several weeks to start working. I am now in remission- 3 years. It worked for me throughout those years, albeit - it never stopped me from having flare ups and everything else that goes on with our Luppie friend, but I always believed it helped with a lot of symptoms. Best of luck to you and I hope you will manage your symptoms well. Always remember- be kind to yourself. My daughter has been going through finding a diagnosis- 9 years - and still having more tests! She’ll get there in the end.
Congratulations on having a diagnosis! I thinks is better to know what we have rather than not... at least now you know that some drugs can help you cope with you symptoms and make life easier.
This disease affects everybody in a different manner, meds too. Sometimes your drugs could be adjusted or replaced with others. I started with the same combination than you but after a month or so they replaced Plaquenil by methotrexate because it didn’t help with joints pain. I had to learn flexibility and patience
Tell your Drs any big issue or side effect. And rest all you need. Wish you well!
Nellie, welcome to the forum and congratulations 🎈 on a more timely diagnosis. Hopefully that gets you to an effective treatment that much quicker. I am still in the diagnostic wilderness but my day will come. We’re a supportive bunch and we try to keep a sense of humor as much as possible too. So, visit often, take a load off, ask questions. 🤣🦋🍀🌻
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I hope you all find answers soon.
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