Medication : Hi everyone, So, basically, I have... - LUPUS UK

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Hi everyone,

So, basically, I have not been diagnosed yet. Ive done all the blood work that was ordered by the physician. I have A positive low titer Ana, dsdna 2 which is negative and none of my inflammation markers are high. I have symptoms and rashes so I do not understand why my labs results are almost all normal except for the Ana.

I got a call from the doctors office today and he's putting me on plaquenil for 3 months because of my symptoms. I am a bit worried about taking the medication. However, I do want to feel better. Is it good drug?

Thank you 🤗

13 Replies

Hi saris

Sorry to read of your diagnosis difficulties but your by no means alone on here with only a positive ANA. I for one have been like that for years despite different symptoms developing!.

What is good is that you've obviously got a Rheumy whose prepared to treat your symptoms rather than just going on blood resukts which is what you need!. An open minded Consuktant so stick to him like glue!. He's using Placauenil as a trial to see if it helps and dies he want to see you in three months to report progress?.

It's a good , helpful drug that's well tolerated. You just need to have a yearly eye check that your Rheumy can arrange and watch out for diorrhea when you first start it but that should settle if your affected after a few days!. I do hope it helps you. Keep us posted and happy new year. X

Sana78 in reply to misty14

Thanks misty! Yes, it is a trail run. I haven't made an appointment but I'm sure he wants to see me after the 3 months. I'm a bit worried but I'm glad he's a good rheumatologist. ☺️ thank you for the support 🤗

misty14 in reply to Sana78

Hi sans

Make that Rheumy appt for three months as they get booked up and you need to be seen!. Best of luck with the Placquenil, hope it helps. Keep us posted. X

Hi Sana!

There's certainly no shortage of cases of people with few positive blood tests, especially here. Your consultant sounds helpful.

I've started with Plaquenil myself and so far, I'm tolerating it well. My rheumy said it's well tolerated but it takes 3-6 months for it to be effective for active symptoms, so chances are you'll hopefully see an improvement when it comes to your review.

I asked about side effects and he mentioned the typical e.g. tummy upset but insisted it was well tolerated.

Wishing you all the best!

Sana78 in reply to AmyJ3

Thank you Amy!!!! ☺️

Hi Sana. I’ve got positive markers and still aren’t diagnosed as lupus. All my records say is query lupus. It’s because this illness is the great mimicer and copies loads of different illnesses like arthritis which is what I have been positively diagnosed with. Stick with your rheumy as it takes time xx

Sana78 in reply to Sarahd1609

Thanks Sarah 😊

Hey! I’ve been having worsening symptoms for 3 months now and I’ve had not one single positive blood result !! Ana negative, no inflammation - absolutely nothing !! My rheumatologist is baffled and keeps calling me a complex mystery - not very reassuring ha. I am seeing him every 4 weeks due to my symptoms and at my last app he put me under the MCTD catogary and put me on 40mg Steroids, Omeprazole and Hydroxy and that’s with no positive blood work whatsoever! He sent some blood work to a more a advanced laboratory in Bath and they are now investigating systemic sclerosis. I’m seeing him now on the 9th Jan for my results, the medication has not helped one bit on my behalf, but then if I do have systemic sclerosis the medication I am on will not even touch the sides. I was a bit sceptical about taking the medication too so I went to see my GP for a chat before I started it, he reassured me that I could call him right away if I’m experiencing any side effects and he’ll have me in straight away. May I suggest you do that too, it may make you feel more at ease - hope you feel better soon , and happy new year !!xx

Sana78 in reply to JazPont

Thank you 😊 I hope you feel better too. A diagnosis is extremely hard. I do hope your journey gets easier, and happy new year to you too!! ☺️

Hi there!

I've been on Plaquenil since May and have tolerated it very well. My Rheumy said that it could take approx 4+ months to start working and I can say that I have had an improvement in some symptoms since I started it.

I hope it helps you!

Sana78 in reply to Bmagrl

Thank you 😊

Hi Sana, a low titer ANA result is no small thing. My ANA has been checked twice and each time positive but "cells are faint". My GP says positive is positive and so does my Rheumy.

The Rheumy did lots of blood tests. I don't know which specifically, but it took 2 months to get the results and that's a long time in the US. He said I have lots of overlapping autoimmune diseases, like GERD reflux disorder or indigestion. I already knew this. Omeprazole is simply a proton pump inhibitor to help with acid reflux and sold over the counter.

As for my big results, he says I have Sjogren's Syndrome based on my extreme dryness everywhere and esp in my mouth at all times. He said that I have a second connective tissue disorder which hasn't revealed itself yet. Does anyone know if there is no one specific test for Lupus?

He put me on Plaquenil. I couldn't tolerate it at all. I ache all over all the time, and Plaquenil made that much worse. So maybe my health issues are in some other field because lots of people report great success with Plaquenil.

The only things that work for me are high dose Prednisone and pain killers. I was un-symptomatic for 2 months and believed I could stop the pain killers. Wrong!!! I'm going back to my Pain Specialist tomorrow. A Pain Specialist is a great Dr to have on your list of Dr's. I have bad rashes too and a Dermatologist for that.

Hope this helped a bit!!

Sana78 in reply to AmyCV

Thank you so Much Amy! Yes, this does help. I'm sorry plaquenil didn't workout for you. I'm hoping it helps me. Thanks for the reply 🤗

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