Let's start this over

I deleted my last post about my 2nd Rheumy appt.. I was being a little whiny and realized it after a few hrs of thinking it through. I must admit I was upset and quite frustrated that my second ana test came back negative- even though the first one was positive. My Rheumy went with the second test and said she'll still retest me in a year maybe less. She still thinks it's lupus but wants to take time diagnosing me. She did diagnose me with sjogren's and raynauds. I am now taking plaquenil. Anyone on this and how well does it work? I still didn't get answers on my rash especially my butterfly rash, my ankles swelling, itchiness, light sensitivity, and the fatigue. But after my self deleted rant i am grateful that I'm one step closer. Plus my primary dr is sending me to get ultrasounds for my kidneys and liver just to make sure.

Frustrated but still grateful.

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7 Replies

  • Hi Ratana21, I have Raynauds & butterfly scars on my face around the top of my nose, I've lived with them since I was about 14, I'm 41 now. I've asked med pro's numerous times about the causes but they seem oblivious. I've just learned to live with them. The Rayneuds became quite extreme so I take Nifedipine which has helped to prevent the blood clots in my fingers & feet as well as the frozen feeling during the winter. I don't take Plaquneil but pretty sure one of the other members on this forum will take it & share their relevant experiences with you.

    Positive blessings to you x

  • Hi,

    This is a good place for a moan, because most of us have been frustrated with our treatment or at the disease at some point.

    People understand, and it can be very good to just get in out.

    It's funny how writing things down can help you get some clarity.

    I can't help with your questions about plaguing as I only took it for a short time years ago and had an allergic reaction. I think that is partly why my SLE has been so hard to control.

    It sounds like you have some good people looking after you. I hope things get better soon 🍀 🍀 🍀


  • It's really frustrating that it takes such a long time to get a diagnosis. However, if you've already been diagnosed with Sjogrens, the initial treatment for SLE seems to be the same - plaquenil. I find it really helpful and take 200mg twice a day. My rash is a bit better and itchiness has gone. I take steroids and thyroid hormone for the tiredness and adrenals, but I do still have big chunks of time where I think I must be having a 'flare' and the plaquenil doesn't seem to stop that.

    Good luck.

  • Hii have been taking hydroxychlroquine for 8 weeks now and it has really helped. I am still in diagnosed as yet.

    I only had a couple of side effects, headache and feeling sick, both have settled down now.

    I hope you do well on it x

  • You need to switch Rheumatologist! I would be shocked if you do not have Lupus (from your symptoms and description). BTW: Just because your ANA was negative MEANS NOTHING. I am a Dr. that suffers from Lupus (retired early because of it)..........my last ANA was negative and dsDNA was 24.......highly positive for Lupus. About 2-5% of the population with Lupus will often show a negative ANA even though they have Lupus. Shame on your Dr. for wanting to wait a year to do more test...........TREAT THE PATIENT AND THE SYMPTOMS........NOT THE NUMBERS!!!

    Dr. S (in the USA)

  • Good morning Ratana,

    Its a challenging disease for Drs. And patients together. Ive had many setbacks from autoimmune illness the past few years, and anxiety over it tops the list. That's why we come here, it helps to whine, we understand!

    I'm happy your Dr is testing, have you had a lung CT?

    Mine suspected Lupus several years ago, I didnt want to hear it, i already have RA and psoriatic arthritis, most of my life. Having negative markers has made it more challenging for my Drs. I started the skin rash in the spring this year, just after a major bladder infection, then the butterfly rash, now lung lesion. Connective tissue diseases is how my Dr explains it. I go next week to discuss it all, maybe plaquinil will be an option for me. I am praying your ultrasound is normal and you find better relief soon. Hugs, Julie

  • I've been on plaquenil generic for about 12-14 years and I don't have any symptoms or side effects that I know of that are from the drug. I can't complain much about anything. I get fibrofog, Lupus fog and have to be careful about overusing an arm or hand, etc....which is easy to do. I get joint aches and muscle knots and aches, arthritic and bursitis pains but I massage them or get kenalog injections if they are bad enough. It's been maybe 2 years since I had an epidural injection. I have memory problems, both short and long term. I'm at a good point in my life where the stress is less than in prior years and I believe that has kept my illnesses in check.

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