Newbie questions

[Jodirae]

Hello I was diagnosed with Fjbromyslgia 6 years ago. I was put on medication but it really made very little difference. At the time, my CRP was positive, which had the drs stumped, cause nothing else showed up in my bloodwork. A year and a half ago, I was diagnosed with under active thyroid, and have struggled with extreme fatigue ever since, even though they keep increasing my synthroid dosage. A couple months ago, I saw a rheumatologist, who told me my ANA was positive. She sent me for tons of tests and I went back this week for my results. She said I am showing some joint damage in my wrists, and my Chromatin is positive. She cannot diagnose me with lupus at this point as chromatin is a generic test and not specific to lupus, even though that's what she thinks it is, and she put me on plaquenil. She wants to monitor me and repeat my bloodwoek every three months for the next year. My fatigue and joint pain is horrible, and although discouraged to not have a certain diagnoses, I'm happy to be starting the plaquenil in hopes of making the symptoms better. I have a few questions....

-has anyone had a similar situation? Is it possible that lupus specific tests will show up down the road? Or will the medication stop everything from progressing and I'll never truly get a diagnosis?

-will the plaquenil help with fatigue?

-I have constant ear pain but no infection. I've read that can be the lupus....anyone else experienced this?

-and last question....about a month ago, I had a case of epiclertis. My eye was bright red and very painful. My optometrist said it can be caused by autoimmune disorders. Now that I am on medication, do I need to worry about reoccurring episodes?

I know, lots of questions. What a confusing time. Thank you for any input you may have

Jodi

[misty14]

Hi jodieae

Welcome to the forum, hope you enjoy being here.

I feel you have made such good progress on the diagnosis front. From Fibro to possible lupus is a big step and achievement!. Your Rheumy is great to want to keep testing you every three months for a year to see if your bloods change. It's very possible they could despite placquenil. Symptoms can change quickly in these illnesses, keeping a symptom diary can help and take any photos of rashes. It could well improve your fatigue and joint symptoms. She will be interested too in how you respond to the drug, all part of the picture like the eye condition you developed!. Hope you get your eyes checked while your on it, that's important!.

Your very close to a diagnosis now , keep posting and sharing and best of luck. X

[Lupiknits in reply to misty14]

Welcome! It's not an easy road, but you are making great progress by seeing a rheumy and being monitored. I can't answer any of your specific questions but can tell you that plaquenil has made a difference for me. It usually takes some time to take effect, but keep going.

[Jodirae in reply to misty14]

Thank you for the encouragement!

[lupie46]

Glad you're getting checked regularly. I have SLE and I have bought of blepharitis in my eyes, joint problems, rashes etc etc. It is a long road to diagnosis. I also get polymyalgia symptoms alongside lupus. I have an underactive thyroid too. Medication tweaks and changes can really help. Hope you feel some improvement with the plaquenil

[Jodirae]

Another big question I have is in regards to fatigue. I was under the understanding that when you start medication to treat Lupus, many of the symptoms will away and you will go back to feeling normal. The more I'm reading, the more I'm understanding that is complete ignorance, and not the case at all. I'm hoping things will go from being active, to somewhat going into remission, except when I have flares.....I'm sure that is the hope of everyone😁 The joint pain comes and goes, but the fatigue is constant and I'm having a VERY hard time keeping up with working full time. It feels unbearable as I'm sure many of you know. How much can I expect the fatigue to get better? I'm 42, and wondering if this is my new "life sentence". Thank you much for taking the time to answer these questions....what a valuable site, and more relevant to hear people's stories than just reading up on things through the internet or a book!

[Shaysuekirk in reply to Jodirae]

The fatigue really sucks! I take a nap almost every day. BUT, I feel more "alive" when I'm awake now. My brain fog is much better. Your positive ANA could be Hashimotos with an underactive thyroid. Did they test for the TPO antibody? I have this along with Fibro/Lupus.

I do think the Plaquenil can make your symptoms go away, and the blood work is so weird. Mine seems to change every three months. Different things get flagged or are very low positive -- Then 3 months later everything can be perfect. It's annoying, but hang in there.

[shareasmile]

My symptoms and bloodwork have morphed similar to yours. I, however, had to fight the fibromyalgia diagnosis tooth and nail as I knew it was incorrect. One reason that my old Rheumy pinned me with it is that my bloodwork kept coming back negative. Then, my new doc ordered another ANA which was strongly positive. Along with my symptoms, I am now considered to have connective tissue disease. This all started 4 years ago. The fatigue was a major problem for me. Since starting on the proper meds, the fatigue has waned. I hope the same for you. It is a long road, no doubt.

[Jodirae]

My thyroid was diagnosed as being under active a year and a half ago, and at the time my dr did another set of bloodwork and then diagnosed me with Hashimotos (not sure what blood work was done at that time). My ANA showed up as being positive a few months ago. I am curious about your comment on fighting the fibro diagnoses though....do you think you didn't have it at all, or that you have it in addition to lupus? I don't know what to think....often fibro is secondary to other disorders. I think I do have fibro, but think it's in addition to lupus. So hard to know. I will say though, when I got sick six years ago, my dr at the time requested blood work and my crp came back positive. I was sent to a rheumatologist who did more bloodwork. It all came. Can normal (the minimum amount she did) and I was told I was fine. A month later my family dr diagnoses me with fibro. I have asked mysel many times, was I misdisgnosed, or only partially diagnosed!?!

[Paul_Howard Partner LUPUS UK]

Hi Jodirae ,

Welcome to the forum. I will do my best to answer some of your questions;

It is possible that your blood tests could reveal more lupus antibodies in the future, or they may not; this is one of the reasons that lupus can be very difficult to diagnose. If your levels of lupus activity are reduced due to your treatment then it could reduce the chances of positive results in the future, but it won't necessarily rule it out. This doesn't necessarily mean that you won't get a diagnosis. It could be that you get a diagnosis of something like undifferentiated connective tissue disease (UCTD) instead. Whilst treatments like plaquenil can be effective in reducing the frequency and severity of lupus flares, they may not stop them completely and so it is important that you continue to be monitored.

Due to everyone with lupus being different and responding to treatments differently, we couldn't say for sure whether the plaquenil will help your fatigue. Certainly there are some people who notice an improvement in their energy levels when they have been on hydroxychloroquine for a while, but others may not notice an improvement. Unfortunately lupus fatigue is still very poorly understood and proves to be one of the most difficult symptoms to effectively treat. You can read more about fatigue and tips for managing it at lupusuk.org.uk/managing-fat...

Pain in the ears could potentially be caused by lupus, or possibly by sjogren's syndrome which commonly overlaps with lupus. Have your ears been examined?

Regarding your eyes, as I mentioned before, whilst your lupus treatment may help to reduce the frequency and severity of some flares, it may not prevent them entirely. If you do experience any symptoms then you should report them to your doctor in case they require further investigation or adjustments to your treatment regimen.

[Jodirae]

Thank you for the reply! Yes my ears have been examined and not shown signs of infection. You response was very helpful

[AmyCV]

Hello,

Lupus is indeed a mysterious disease!

My GP sent me to an ENT (Ears, Nose, Throat) doctor back in January because of my horrible fatigue along with long-term unhealing sores in my nose, severely dry tongue AND chronic red swollen eyes, either dry and often runny. The ENT did a battery of tests including allergies and nasal fungus. The fungus was negative, and my only allergy was to a specific type of mold.

He was very mad when he got the results. He told me that my problems were systemic, and to go back to my GP and tell her to run a battery of tests, and he scribbled down some medical jargon. This finally prompted her to action. She began testing for Epstein-Barr which causes Mono. It was positive but showed that my Mono had ended and I was still extremely fatigued. Then she tested ANA and it was positive.

I'm still waiting to see the Rheumatologist on June 22nd. But here's the point I want to make. The ENT had given me injections of the steroid Kenolog in each nostril to decrease the inflammation. Right after those injections, I began to feel more energetic and normal than I had in 20 years. I had a few hours of feeling super. So it showed me just how rotten I'd been feeling for such a long time. The best part was how improved my mood became. I've taken the steroid Prednisone for my asthma many times, but it's never made me feel so wonderful.

I hope my Rheumy can give me some type of steroid to at least make me feel great for short periods of time.

I'm new to Lupus too, and I feel certain I have it plus Sjorn's.

Best of Luck!!