Doctor convinced it's Lupus

[SandyRN]

I went to my GP today and lucky for me I woke up with the classic butterfly rash across my nose and cheeks. Lucky because I wanted him to see this rash for a change instead of just me telling him about it. He said with everything that's going on he's pretty much willing to call it Lupus, but said it COULD be Rheumatoid Arthritis, but with the rash I think RA really has been ruled out. I am getting a consult to a rheumatologist, am now taking 10mg of Prednisone 4x a day then weaning down after 12 days. He hopes this will help the rashes and the pain in the joints, etc. I had all my bloodwork redrawn as well, and he confirmed that it is more likely to show Lupus when you're flaring, so hopefully this will give me the confirmation for real. I've said it over and over that I just want to be validated, and now that I am I'm REALLY afraid. I'm scared guys.

Oh, and because I've been having these terrible sores in my sinuses (he also thinks this is Lupus related) I'm going to have a CT of my head soon.

So...I came home with orders to see yet another doctor, a RX for prednisone (YUCK) and an appt for a CT.

I was ok but now that I'm home I really feel like I'm going to lose it. I bought some new bath stuff for a treat and I'm taking a hot bath soon to relax and lose myself in my book.

:( :(

[Bessie]

Praying for you :pray:

[humpieumpumkin]

Oh no Sandy!

Im very sorry about this terrible news! I like you, wanted to be validated for my symptoms. Even though this means alot physically, at least you will get some peace emotionally. Like you I am also 'losing myself' in books right now. There is a post I submitted that lots or people gave some great book reccomendations. I hope you feel better, I hope the flare wont last. We are here for you Sandy!

Erika:hi:

[SandyRN]

Forgot to add the other clincher...I have Raynauds which is typical in Lupus patients. Today my hands were purple, and it was 60 degrees outside. They've never been this blue before, and they hurt more than normal too.

[SharonA]

Sandy...I am so sorry. Gosh, I wish there was something I could do for you. I hope your bath helps. I don't do baths but I am so cold today that one actually sounds good. To just be warm for awhile sounds good to me.

[traceann]

Sending you BIG squishy hugs!!

[SandyRN]

Tracey, just who are you calling squishy? :wink:

[Babs RN]

Sandy,
You know where I am if you need me.

Love,
Barb:hi:

[SandyRN]

Thanks everyone!

[ihurttoo]

Sandy,

I am so glad was willing to retest with you sick, and that he agrees it is more likely to show up when you are in an active flare. (Like I told you, I wasnt entirely sure he would agree to the retest, since so many Drs. think once it doesnt show up, that is it, you dont have it!)

I am also glad that you had an appt today while you have the Butterfly rash. Even though there shouldnt be a difference in telling a Dr. you have had them, and their seeing it, as we all know, there really is a difference. They are still scientists at heart and want to see it all for themselves.

I didnt realize you had the cold, red/purple hands/feet too. That is one of mine also, but like I was telling you, alot of the symptoms vary so much from person to person, that there are just too many variables and combinations to mention.

I am so happy that you will finally be able to get on the proper meds for your conditon. Though, I am sure you are probobly scared now. But, remember, you are actually healthier today than you were yesterday, because now you know what you are dealing with and can begin to fight it!

Hope the Rhem consult goes well, and you will start feeling better soon!

Hugs,
Amy

[SandyRN]

Thanks Amy. You should have seen my hands today. It was unreal, kind of like my body saying, "Hey Doc, LOOK at all these symptoms and take me seriously!" They were so blue, and underneath my fingernails were bright purple. He thinks most of my symptoms can be attributed to Lupus and that I may not even have all this other stuff like the fibro, etc. I'm not so sure about that, but the autoimmune factor in Lupus just makes SO much sense and really just ties everything in now. I took my prednisone dose, actually it is on a scale and I had to take 20mg now, 10mg 2 more times today, then 20mg at bedtime....and I feel loopy. Dont know why, but my little world is doing the spins. I already don't like being on this!

[aprilmae]

Sandy,

So sorry to hear about this but at least you are finally getting some answers. Sending you lots of prayers.

April

[Trishann]

Sandy, thank God you finally found out what was going on with you for so long. I know you have been fighting this horrible pain for a time now. I know you must have been relief to know something is going on but definitely understand your fears. Hopefully now you can get some control over it, and I hope the warm bath will help you to relax.

Trishann

[RAS6]

Sorry to hear the diagnosis, but I am glad you are getting answers Sandy. My very good friend has Lupus and was VERY ill by the time they figured out what was wrong with her. She was diagnosed when she was 17 and is doing much better now at 25. I will ask her about some resources for you. I'm sure Amy will help you as well! You are in my prayers!

[pingpong]

Sandy, I've had lupus for over 20 years, and it's a lot like IC: it's hard to diagnose, but once you know what you're dealing with you can do some things to help. I've never felt "loopy" from prednisone, just really hyper on a large dose. But I've gone from having a miserable lupus flare, in pain everywhere and barely able to drag myself out of bed, to feeling great in 36 hours thanks to prednisone! Again, just like IC, you have to figure out what you can do and how you need to treat it. Once I hit menopause, my symptoms got much better and I was able to drop one of my meds (imuran), because there was less estrogen in my system and that calms down the lupus. Of course, I've had to go without HRT, but other than some hot flashes I'm doing fine.

[tigger_gal]

(((((((((((((((((Sandy)))))))))))))))))))

[ICNDonna]

One good thing is that now you "almost" know! I have a good friend with lupus and one thing that's comforting to me to know is that there have been many improvements in treatment in the last thirty years. My friend is able to work full time in spite of having lupus. She has some dietary restrictions, but I'm sure you'll find out about those soon.

More squishy hugs coming from Oregon,

Donna

[curlycue]

wow Pingpong that is great, I am sorry about the news but at least there is something you can do about it, or should I say control it. Good Luck

[Kara29]

Sandy,

I am glad that they are narrowing down what could be going on. It must help a bunch to talk to other ICers that have Lupus? It's nice to know that your symptoms finally got validated by your Doctor.

Well Wishes Ahead!

Kara:angel:

[curlycue]

PingPong how do you find out its Lupus! is there a blood test!

[DaniBelle]

Sandy...you've had to go through so much. I'm sad that now there is one more thing to add to the list. It's good, however, that the rash and other symptoms were right there for the doctor to see, so the doc knows exactly what you're dealing with and can treat you appropriately. It's hard just knowing you have a condition and the doctors saying, we don't quite see it. So frustrating! I'll be praying the meds bring you relief and remember...besides taking a nice, soothing bath....your best friends (the furry ones) are ALWAYS there for you. Their pictures are so sweet. I have one dog, "Doogie", and he's my best friend....all the human ones have fallen by the wayside, so to speak....except my I.C. friends, that is. You take care, and stay warm!

Dani

[Trishann]

Just checking in Sandy to see how you are doing. Thinking about you.

Trishann :pray:

[SandyRN]

Thanks everyone. Curlycue, there is a test called the ANA (anti nuclear antibodies) that shows up in like 50-60% of Lupus patients from what I've been told. Not everyone shows positive, and in my case my last bloodwork was positive, but at the borderline of being negative, so they have been calling it borderline positive. In my mind there is no doubt after that rash being on my cheeks and nose yesterday and my hands turning such a pretty shade of blue/purple. I was so greatful that my doctor saw all of this stuff.

I just managed to choke down my first prednisone dose of the day. Somehow I managed to sleep from 11 last night til 11 this morning without having to pee. I think I was/am so exhausted from all the stress and now this probable dx that my body just crashed. Today I'm just feeling lousy and would really like to go back to bed.

I'm praying that I get some relief from my symptoms after being on the prednisone for a few days...I know my house would surely love to be cleaned! I've got piles of laundry upstairs calling my name as well.

I should get this set of labs back on Monday or Tuesday so we shall see what it says. I dont know when my rheumatologist appt is yet, or when my CT scan is....the nurse is supposed to set it up for me...hopefully it will be soon.

Thanks so much for the well wishes, I really appreciate them!

[Jessica12974]

That is terrible! I am praying for you! It is a nightmare having IC and other illnesses makes things so much worse! I have had unexplained low grade fevers for years and when I get these fevers I have the butterfly rash(sunburned look) across nose and cheeks. Nobody has yet to question why. Also for many many years I have painful joints and muscle aches all over my body. I do not complain to Drs because I feel that my IC is enough! But I have always wondered if I have lupus. A friend of mine mother who has lupus has the same symptoms as I do. Every now and then when I complain to my Dr about my constant fatigue and no energy they tell me it is normal because I have Epstein Barr. I had Lymes over 10 years ago but I have always wondered if that was the reason for my IC and other symptoms. When I bring this up to different Drs they do not say much or anything that they are concerned. I want to ask my Dr for the ANA test but I feel like I am being a hypochondriac thinking that I have lupus or something else. Do you have low grade fevers? What made your Dr suspect Lupus other then the rash? Sorry for the questions but I am trying to figure out my strange symptoms! I hope you get the answer you are looking for soon! I know how frustrating it is to suffer and not know what is causing it! Good luck and feel better soon!

[SandyRN]

Hi Jessica,

Besides the obvious rashes on my face and my blue hands I have chronic mouth and sinus/nasal ulcers that are very, very painful and they can sometimes overtake my entire mouth/lips. There is a very bad sinus ulcer up there now that I have to go have a CT scan for, but my doctor thinks that's lupus related as well as the oral sores. I have had severe fatigue, severe muscle/joint pain, at times I lose my hair (right now I have a thick head of hair, but there are times when it comes out in clumps), recurring headaches, and I have Crohn's disease that was diagnosed by biopsy...this is autoimmune which makes it much more likely to have another autoimmune disease like Lupus. Also I am hypothyroid. There are more symptoms but my brain is in a fog today.

I would ask for the ANA and a Sed rate to be done, but I have to warn you that you can go for years with a negative ANA, then one day, it's positive. The sed rate determines inflammation in your body of some sort.

I would do a search for Lupus here on the board and look for posts by ihurttoo aka Amy, she writes very informative posts on Lupus which are more comprehensive then what I've just written.

It never hurts to ask for tests to be done to rule out or diagnose something that you suspect you may have. Who cares what the doctors think? It's their job to give you the best healthcare possible!

Hugs, Sandy

[SandyRN]

ps...I forgot to add that a couple of years ago I was having Chronic kidney problems that would land me in the hospital for 5-7 days at a time...

[Jessica12974]

Thanks Sandy! You are right I should not care what Drs think it is their job to find out what is wrong! I too have been hospitalized through the years many times with kidney problems that is why I think there is something that they are missing. I feel like all my problems are related because they are autoimmune problems. Take care and feel better!

Jessica

[Sarojini]

Sandy, I'm sorry to hear this, but at least your doc finally saw everything for himself. I do have a very good friend from college who has lupus, and like Donna said, treatments have changed a lot in the last ten years or so since she was diagnosed.

I have been on prednisone before for asthma flare-ups, as well as for flare-ups of dermatographism, and I'm not too fond of it either. It doesn't make me loopy, but I do get hot flashes sometimes while on it, my appetite increases, and my temper gets shorter! ;)

[sweetangel2080]

hi sandyrn,

It must be both a relief but very scary as well.
Hopefully now that you are on treatment, you will start to feel better soon. Thankfully it has been diagnosed - my mum had lupus for years but not treated and it led to kidney failure- this was over 15 years though.

She went onto prednisolone and this helped her, she has a transplant now and now she is just on a 5m prednisone dosage for maintenance but the lupus is under control.
She is monitored every 3 months for the lupus and kidney function.
this is obviously not the case with lupus today, and many people with Lupus can control their symptoms successfully. I know that prendisone did help my mum's fatigue as she was able to sew curtains with many designs after the transplant.

The dosage may seem high but once things improve, maybe the dosage could be put down. The weight gain I always thought was more water than weight?
My mum did get bigger but this went down after a few years. another friend was on it for a damaged liver and for a year she did not put on weight but the face did get bigger. This can happen with prednisone but it gets better as the dosage is reduced.

On the IC front, I know on the UK boards, someone is taking prednisone and it has helped her IC after years of severe IC. There is also someone on there on it for EC.


I have been encouraged to get tested for lupus, but I wasn't aware it had to be active to be diagnosed. I am hypothyroid, have migraines, fatigue but not noticed much else so not sure whether I should be tested or only get tested if I have five or more symptoms. (it says on the l UK lupus website that you normally have to have five or more symptoms to be diagnosed)

[SandyRN]

Thanks everyone. Sweetangel, I only have to take the prednisone for 10 days, but it will wind up being 11 days because I only got in 2 out of 4 doses last night. It's 60 mg for 4 days then 40mg for 4 days then 20mg per day after that til it's gone. It's not that high of a dose since it's only for a short time, but I am very hopeful that my IC and all my aches and pains will subside for a while anyway. The rash on my face is already much better today. Also, the all over itching I have on and off is almost gone, too! It's almost a miracle. I'll take any reprieve that I can get. I need a serious break from all of these symptoms. Hopefully with my increase in my pain meds and now the prednisone there is some hope on the horizon for me.

[Kara29]

Sandy,

I hope you can rest a little now knowing what is going on. It sucks to have to add another thing to our lists but at least you know what it is and don't have to guess or have the doctors miss it! I don't know a thing about Lupus but I am praying for better days ahead for you and some much needed relief from the stress of it all.

Kara:angel:

[pingpong]

In addition to the ANA blood test, they also check for anti-DNA antibodies. That test is more specific to lupus.

[SandyRN]

pingpong, I don't think they did that test on me...Is that one more likely to be accurate if you're "flaring" too?

[SandyRN]

Thanks Kara. I looked at the video of your kitty. He's really pretty cute! I can tell you love your cats as much as I love mine! :)

[pingpong]

Each rheumatologist I've had (three) has used the anti-DNA as the "gold standard" for diagnosing lupus. It was almost a year after my first symptoms before this test came up positive for me (I can't remember the range, but I think a level over 4 was active - the scale may have changed in the past few years). The ANA was positive almost from the start. For years, I would get bloodwork every 3 months, and the anti-DNA level rose and fell through the years. Now that I'm in menopause and the lupus doesn't have all that estrogen to kick it into high gear, my anti-DNA tests come back as "not active". I still have lupus, and I still have fatigue and aches and pains, but at a very low level. Of course, I imagine a serious medical problem or injury would stress my system to the point that the lupus would flare and the blood test would probably show that, but for now I'm just humming along!

[SandyRN]

Thanks! I guess the new Rheumatologist will know enough to give me that test. I checked on my form from my GP and he didn't do it yesterday.

[PlainJane]

I had Lymes over 10 years ago but I have always wondered if that was the reason for my IC and other symptoms. When I bring this up to different Drs they do not say much or anything that they are concerned.

That is unfortunate that your doctors dismiss your concerns about Lyme disease. From what I have read if you aren't adequately treated for Lyme disease it can cause the symptoms of IC.

Many Lyme patients were firstly diagnosed with other illnesses such as Juvenile Arthritis

Rheumatoid Arthritis

Reactive Arthritis

Infectious Arthritis

Osteoarthritis

Fibromyalgia

Raynaud's Syndrome

Chronic Fatigue Syndrome

Interstitial Cystitis

Gastroesophageal Reflux Disease

Fifth Disease

Multiple Sclerosis

scleroderma

lupus

early ALS

early Alzheimers Disease

crohn's disease

ménières syndrome

reynaud's syndrome

sjogren's syndrome

irritable bowel syndrome

colitis

psychiatric disorders (bipolar, depression, etc.)

encephalitis

sleep disorders

thyroid disease and various other illnesses.

That list was taken from CanLyme.

The tests for Lyme disease are NOT reliable and it needs to be diagnosed by a Lyme disease specialist.

Ok don't want to hijack this thread I'm done now. I just had to post this info because someone brought up Lyme disease.

~plainjane.

[pingpong]

Curlycue, you mentioned on another thread that your aunt gets cortisone injections for her lupus. She probably gets them in her joints when they're really painful. I've had several throughout the years, in shoulders, knees, toes, elbows, sternum (ouch!)..! I'm only a year younger than your aunt, and I hope my life won't be too shortened by lupus! In very severe cases, lupus can affect the internal organs (especially kidneys) and it can be life-threatening for some people, but it's much easier to treat and monitor than it was even 20 years ago, so I hope your aunt will be around for a long time. My mother lived to be 87 and my dad was 91 when he died, and I'm hoping my "longevity" gene helps me make it to a ripe old age!

[curlycue]

Yea I think your right she does get them in the Joints. I hope she lives long as well.

[ICLori]

Sandy, I'm so sorry you might have Lupus. I know you must be so scared and not happy about the steroids you will have to take.

I do have a friend with Lupus, and with the right medicines, she feels well almost all the time now and is much better than before she was diagnosed. I hope and pray this will be the case with you, and that you will get better and better, without too bad of side effects from the meds. And I sure am hoping your IC will go away, too, with the treatment. I think I read once that IC and Lupus can go together or Lupus can sometimes act like IC or something, I can't remember now. Anyway, it would be wonderful if they could just help you with everything, with the right medicine.

Keeping you in my prayers,
Lori

[SandyRN]

My thoughts on lyme disease are that it probably isn't that. I've read a lot of things on Lyme and I've never had the bullseye rash, or a lot of the other symptoms that it presents with. I know it mimics a lot of other problems, but I have felt that I've had Lupus for years and have just not had a + ANA up until recently. From what I've read you don't have a +ANA with Lyme, correct?

It's not just the body pains, it's the kidney involvement, the hair loss, the rashes on my nose/cheek (the classic butterfly rash) the other itchy rashes all over my body, etc, etc......

As for my dx of Crohn's I was dx'd by biopsy, and there's no doubt about that, and it's autoimmune. The Raynauds is also a symptom of Lupus, and when you add all of this together, it makes more sense to me than Lyme.

Thank you all for your thoughts and well wishes. I guess I'll know for sure when my bloodwork comes back next week. Then I'll see the rheumatologist and see what he's got to say. All I know right now for sure is that this prednisone is an absolute miracle med, for short term use anyway!

[poetgirl]

I'm not on the boards much these days, but I hope that whatever it is, you start feeling better soon. Lupus does sound scary but at least knowing what you might have allows you to find ways to treat the symptoms and hopefully get them under control.

Lots of hugs to you! :grouphug:

[SandyRN]

Thanks poetgirl! I'm glad to see you on the boards again! I can't wait til you post your new baby pictures!! How is your pregnancy going? I wrote to you on the c/s thread, I delivered my first baby at the same hospital you're going to. I hope you're doing well!!

[poetgirl]

I'm hanging in there - getting BIG! I mentioned on the c/s thread that I've developed some heart-related issues they're monitoring now. I do have a murmur of some sort, and my family, including my mom, has a history of heart disease, so they want to keep an eye on me.

I was doing really great up until the palpitations became bothersome. There seems to be no specific cause for them, although I tend to get them after I eat in the morning or other times when I'm at rest. Yesterday, I was watching a video and the symptoms started - I was just sitting there in a chair! I get tired and short of breath after physical exertion (not surprising at 32 weeks) but I don't end up feeling bad like I do when I have these cardiac-related episodes. Sometime my heart rate will remain elevated for an hour and it's accompanied by shortness of breath, light-headedness (sometimes I have to go lie down) and every now and then, a feeling like there's fluid or some other pressure in my chest that makes me have coughing fits until the pressure passes. I'm hooked up to a heart monitor until my appt with the cardiologist on March 1. So far the data I've sent is inconclusive and they don't seem especially concerned, because I haven't actually FAINTED yet, even though there are some days where I feel awful and can't do a whole lot. My blood pressure is fine whenever I get checked and my glucose test came back a 77, so if you look at all my vitals, I look great. I just don't FEEL great. :cussing:

For some reason, I never realized you were an OB/GYN nurse. Had I known that, I would have been bugging you months ago! :smile tee

[SandyRN]

LOL, well you can "bug" me any time you want! I'm sorry to hear about the heart murmur, and I hope it's more of an inconvenience than an actual real problem. I've seen other women develop murmurs during pregnancy. It sounds like they're taking really good care of you! I sure do miss working with the moms and babies, so when I know a good friend on this board is pregnant I wanna hear everything! So don't ever hesitate to pm me! You're really getting up there at 32 weeks, not so long to go now! I'm excited for you! :)

[PlainJane]

Okay well whatever it is I hope you find a treatment that helps you. I hope the Lupus treatment helps.

-pj

[SandyRN]

Actually, the Lupus treatment is already working....at least until I stop taking the prednisone.