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Old 01-27-2013, 01:47 PM   #1
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My body and immune system are at war and im caught in the middle

Hello,
I recently turned 28. I was diagnosed with Mixed Connective Tissue Disease about two years ago. I was instantly started on Plaquinel. Iv had very odd symptoms off and on that are not seemingly typical of the disease but ahve learned....my body and symptoms never play by the book. Iv had unexplained fever for four months solid. Horrible rash, i thought was the Lupus stuff..dermatologist said nope allergen exposure. Pain in joints and more so muscle issues and weakness with horrible fatigue (also diagnosed with hypersomnia) I have Graves diseas as well but with radiation disabled my thyroid so now im on synthroid to keep my thyroid normal. I recently had pancreatitis and was hospitalised for that. It came and went just as fast baffiling doctors. Also discovered an adenoma tumor on my Liver, sigh. since then i had what seemed to be gallbladder symptoms but nothing found. scope of stomach revealed streaking in my stomach lining but biopsy said no H Pylori bacteria present. Family doctor stopped my plaquinil to make sure all these things were not from the med. Well now i have started it back up, crazy not to be on it. Im sure im in a flare again....mild fever, feel like iv busted my knees on the corner of a desk, joint pain. Feels like i am ripping my body apart when i move. Shoulders feel like my arms are being pulled off. Very tired and hurting. Red rash on the backs of my knees, thighs, and stomach. a skin tone rash on wrists, parts of the tops of my fingers, between them and under side of my wrists and palms. My hand with the worst rash also feels like its falling asleep and discolored at times like im cutting off circulation a bit. Also looks like I have a rash in the back of my throat. Armpits hurt. Skin is so sensitive I cant shave without pain and irritation. Sometimes it feels like my skin actually hurts. I dont know what to atribute to a flare...im so new to all this and never the typical patient so i dont know what to think. Does anyone else have any of this at all? I feel horrible and its really starting to take its tole on me. Im only 28, hate having so much wrong and feel like im crazy just having to see the doctors so often. I work full time and am also a mom of a 4 year old epileptic son. I dont have the ability to slow down and take it slow and be sick. I have a very unsupportive husband. Most around me look at me and see a very healthy person because I try every day to live that image even when so much is going wrong. When i am in a flare, its like its expected that i "suck it up your fine" I have to figure out whats causing all this so i can understand it and take care of it all. I also have Scoliosis and had fusions and rod placement when i was 16 covering almost my entire spine....muscles and flare issues hit harder form that mechanical issue.
Anyone else have any of these symptoms? Feel this way?? Thank you for reading

 
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Old 01-29-2013, 04:13 AM   #2
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Re: My body and immune system are at war and im caught in the middle

Hi & welcome. I'm sorry for your problems, not easy.

Did your labs show a positive anti-RNP without any other specific autoantibodies? (Only curious.)

When you quit Plaquenil for awhile, did your skin problems abate at all? Do you take the generic or the name-brand? One lupus book author (a famous rheumatologist) writes that more patients get skin reactions to hydroxychloroquine (generic), therefore he only prescribes *name-brand* Plaquenil. He adds that some who'd reacted badly to the generic can tolerate Plaquenil. However, he says that if skin problems persist, the drug must be completely discontinued.

Did you have rashes BEFORE taking Plaquenil? How about before taking Synthroid? Are you on any other meds?

BTW, people have posted on the lupus board about skin reactions to hydroxychloroquine & Plaquenil. I seem to remember both lupus & MCTD patients posting there about Plaquenil possibly causing their skin problems.

Sure wish I knew more... I hope others can add to this. Sincerely, Vee

P.S. I've taken Plaquenil for 10+ years for lupus & have done well on it, but I must avoid UV. Do UV rays affect you?

 
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Old 01-30-2013, 12:57 AM   #3
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Re: My body and immune system are at war and im caught in the middle

luckeestar, I was rushing to an appt. when I wrote yesterday. I wondered in what order things occured---Grave's, thyroid surgery, Synthroid, MCTD, Plaquenil, and rash---because order might shed some light. Below are the types of things I'd sort thru & ask my doctors, if I were in your shoes.

Does your red rash on backs of knees, thighs, and stomach hurt, burn, or itch? Is it just red puffy skin, or do you see distinct shapes, like plaques, wheals, etc.?

I think Grave's causes skin problems in some patients. Pretibial myxedema is one: darkish violet edema, where dermis of skin becomes reddish & swollen & has an orange peel appearance. It favors shins but can affect other areas, too. But I don't know whether it ever occurs "post-Grave's". By that, I mean that once you had surgery, I think you became hypothyroid (to the max, actually). And hypothryoidism can also bring on skin problems. For example, multiple people here with hypothryoidism have written about skin problems, hives, for one (very itchy).

Also, both your meds, Synthroid and Plaquenil, can cause skin reactions in some people. What those typically look like & how they might feel, I don't know (sorry).

Re: your rash, you said your dermatologist wrote it off to some sort of "allergen exposure" (not real helpful?). Did your endocrinologist see it? Are you & your endocrinologist satisfied that you've found the optimal Synthroid dose?

Re: MCTD and Plaquenil, you said your family doctor took you off Plaquenil for awhile. Did your family doctor diagnose your MCTD? If yes, I'd want a rheumatologist to review & monitor me, mainly because rheumatologists know more about sorting thru the autoimmunes, it's what they do. Plus they're used to seeing patients with thyroid conditions concomitant with rheumatological conditions because that's a common "double-whammy".

Also, as I said yesterday, if you want to reach more people, you could try other boards in addition to this, like Lupus (MCTD people do post there) and Thryoid Disorders. At 28, I was a mess, too (different symptoms & no Internet to help then), and I sure remember how awful it felt, so I encourage you to keep lining up your ducks & asking questions. Warm wishes, Vee

 
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Old 05-10-2013, 02:06 AM   #4
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Smile Re: My body and immune system are at war and im caught in the middle

Thank you for the reply. Sorry i'v not been on. I got worse but see to be sorting out now.
I started off with the Graves. My primary found the markers in my blood then sent e to an endocrine for dx. same, years later with the MCTD. I dont see the endocrine anymore but see my Rhumy monthly and he monitors EVERYTHING even my siingly unrealted issues, likes to keep everything in check as much as he can so we can concentrate on the MCTD as much as needed.
After that post i went to the Rhumey and we decided i should get a good dose of steroids. I had an IV dose of solumedrol. the rash was almost gone before i left the office. I dont like solumedrol, it makes me so nervous as everytie i get it, my eyes itch and my lips feel funny. after that does my eyes, throat, lips all felt funny. im always afraid im having an allergic reaction which is unlikely as its used to stop them... but iv elarned im noting close to an ordinary text book patient. I was kept at the office and given benadryl just in case. my seasonal allergies were causing symptoms the following week, i suddenly felt like my ears were starting to get infected.within 3 hours of my ears starting to hurt, my eardrums both ruptured. first my left, then 4 hours later my right. It was horrible and scary my ears bled so bad. after the first i went to an ENT and he said they were infected, was shocked when i called later and said my other ear had ruptured an hour after his office. So, again my immune system playing into it. i told the ENT it was my allergies... he didnt pay much to what i was saying. So, my rheumy being the only doctor that takes consideration to what i say, i went to hi and he gave me allergie meds wheich slowly helped. I couldnt hear for weeks and felt so tired and weak. My rhumy was in direct contact with the allergie doctor to help me. the both agreed that my allergie immune issues and MCTD immune issues are different, but can also trigger eachother and effect eachother as well. So i not sure the rash was allergie, MCTD or other but id say deff autoimmune and it seemed i was in a flare at the time.
Rashes, no i didnt get them before like i do now. just echema, which i dont have anymore, oddly. Now when i think back, a lot of my symptom i have, i did notice years before dx, but never thought much about them then. Had so many other issues it was like "pick top three complaints" when visiting the doctors.
going off the plaquinel i did not notice any relief, and actually went into that flare while off it. I take the generic, hydroxichloriquin (likely spelled wrong)
the markers for my MCTD, im not sure. I was just told i have it, but i do know i dont test positive specifically for lupus or others. I had a positive blood test for lupus 6 years ago, before the graves or MCTD and with further testing.. a DNA test, they said it was a false positive which i was told is common.
My primary is a very thourough doctor. I was very lucky to have fairly quick dx with graves and MCTD were iv read many go sooo any years trying to get a dx. he ran the blood test for the MCTD for a reason i cant remember, but i wasnt in there complaining of any symptoms specific to that. and am VERY thankful he is such an intuitive doctor.
im just now getting better. energy is back some. have a lot of muscle pain and back pain (rods from scoliosis) but i will take the pain any day over the unknown bizzar issues.
I still get random events that are like panic attacks without the heart racing, fear. its a sudden onset, like i was just given a iv of strong pain meds or something, and burning cold, soetimes wet feeling over my entire body, or just upper half. kinda like raynauds all over. the only way i can describe it. ativan seems to help it.. that scares me but have gotten somewhat used to it now. It does seem to happen more on cold days, rainy days, and when i drink coffee or smoke. i only quickly mentioned it to the rhemy. he asked a few questions regarding circulation (due to feeling cold in my chest, worried him) but then i said its like its provoked with stimulants... said sounds like my sympathetic nervous system is over active. but thats as far as we went with that. im sure this will be an issue brought up again at a later time as it annoys the heck out of me. I still thinki have yet again something else going on, OR, symptoms that have not been attributated to my disease yet. I just cant phathom going to the dotcor and telling the everything i feel even tho they effect me so much. i figure when i get to the point i cant deal with the, then i will. as long as i can deal with them, i say im doing fine.

i think i answered everything. if i left anything out please let me know lol. basically im a mess of symptoms that are very odd and VERY hard to put into words. I find it so strange, you feel symptoms, every day, that effect me soo much that i worry and panic over, and yet i can not describe them lol


again, thank you so much for taking the time to reply to me. Talking to anyone who can relate or understand helps greatly. I dont have much for support or help aside from my rheumy, who really helps as much as possible. My husband and family, they may ask how im doing but, im sure they are sick of it all. Husband....nothing at all in the way of support. i look healthy and dont slow down much regardless of how i feel so i sure its hard for people to understand i actually have something wrong.

Thank you

 
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Old 05-13-2013, 07:59 PM   #5
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Re: My body and immune system are at war and im caught in the middle

thanks Vee!

I had the dx of graves then the MCTD a few years later. My primary found abnormalities in my blood work both times and sent me to endocrine and rheumy for dx.

The rash, i finally went to the rheumy, i got a high dose of solumedrol, i hate it. makes my eyes itch and outh, togue and throat feel funny and like it will swell. but the rash was almost gone before i left the office. a week later, my left ear plugged up,within 3 hours my ear ruptured. went to ear doc and right ear had started to plug, again within 3 hours my right ear ruptured. I kept telling them i thought my allergies was the culprit but wow.

Plaquenil has been good to me. UV, when im in the sun i get like tiny little water like bliters. i can run my finger over them and pop them. I have no clue what that is. I have a lot of stomach issues starting back up now, and migranes. Is this all a never ending battle?

sometimes i wonder if all this has to do with the rods in y back, like my immune system is reacting to them....

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Old 05-13-2013, 08:06 PM   #6
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Re: My body and immune system are at war and im caught in the middle

oops, i forgot. i dont see the endocrine anymore and i see the rheumy regularly.
And yes, the fact that i have the scoliosis, rods, thyroid, allergy, and MCTD...it keeps my rheumy on his toes for sure since they all cause similar symptoms, poor doctor lol.

I just cant help but think it odd my health has been a gradual down hill since the scoliosis rod placement. then its been autoimmune every since (graves, MCTD, and allergy just immune)

my immune system has it out for me. They keep thinking i have crones but never shows up in testing.

 
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Old 05-14-2013, 01:38 AM   #7
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Re: My body and immune system are at war and im caught in the middle

Hi. I'm sorry to read of your newer problems & can see why some allergenic reaction to something is being considered. I know people with surgical rods & screws in their spines. Staph seems to love one friend. Post-surgery, he's been on heavy antibiotics & reacted to some, both with skin eruptions and with severe *antibiotic-induced* photosensitivity. What meds do you take overall? Do any have warnings re: sun?

Since you don't see your old endocrinologist anymore, who manages your Graves? I'd think that it needs carefully watched, and by an expert?

Your Solumedrol reaction sounds very scary. What does its drug printout say about such reactions?

Re "stomach issues", some GI autoimmunes can cause skin reactions. You mentioned having tests for Crohn's but didn't say which tests. Have you had a colonoscopy? (BTW, it's easier today than it used to be. If I can do it, anyone can.)

Re: not getting posts thru, I don't know why that happened (sorry). But there is a way to set your "Settings" so that you're alerted when someone posts in a thread you either started or just participated in---more on that in a minute. I'll stop here but add more soon, hugs, Vee

 
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Old 05-14-2013, 02:43 AM   #8
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Re: My body and immune system are at war and im caught in the middle

The symptoms you are describing all fit with MCTD, which is combined lupus and other autoimmune disorders. Has Your rash ever been biopsied? I wouldn't buy the allergy rash diagnosis. I would try to get a skin biopsy WITH immunoflourescent studies. The latter is very important to include in autoimmune rashes. Lupus does flare both skin-wise and systemically following sun exposure. Your hand falling asleep sounds like possible carpal tunnel syndrome, which occurs in MCTD from swelling around the median nerve. The color changes in hand sounds like Raynaud's, also common in MCTD. Since your muscles hurt and are weak, I'd ask to have CK or CPK tested, to see if you have muscle inflammation as part of this. Dermatomyositis is a combo of skin rashes and muscle inflammation that can be part of MCTD. I think your treatment needs to be stepped up a notch. Placquenil is a very mild drug, and isn't enough for many people. There are lots of other things that can be added to it to get this under better control.Let your rheum know how miserable you are and ask for stronger treatment. I am sorry you are feeling so bad and have no support. Perhaps there is a lupus support group in your area you could attend. It can be very helpful to talk to others going thru the same stuff.

 
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Old 05-14-2013, 02:50 AM   #9
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Re: My body and immune system are at war and im caught in the middle

Anyway, after seeing your 5-10 post, in your shoes I'd still wonder if your thyroid is under proper control, and I sure don't mean any criticism of your rheumatologist, only that he's NOT an endocrinologist.

You didn't say what kind of GI problems you have, but I just saw that Graves can cause increased bowel movements. I believe, in contrast, hypothyroidism can cause constipation. And that people can start off being hyperthyroid & then turn hypothyroid... But it would seem to make sense for a doctor NOT to assume thyroid is the prime cause of your GI problems, instead to just do all the usual GI thinking & GI tests, because the GI autoimmunes can cause so many of the same symptoms (GI misery, skin issues, joint pain, fatigue, etc.) as other AI's can cause.

Yes, you DO look plagued with overlapping symptoms, which isn't easy! If you haven't already, I'd get all my recent tests, and look for abnormal results & also things that were omitted.

More later, bye, Vee

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Old 05-14-2013, 03:08 AM   #10
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Re: My body and immune system are at war and im caught in the middle

Luckeestar, to subscribe to a thread (as opposed to an entire board), you just drill down to a lower level. i.e., start on the overall board, next open your thread, then click arrow beside "Thread Tools".

 
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Old 05-17-2013, 08:27 PM   #11
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Re: My body and immune system are at war and im caught in the middle

Thank you all.

My primary does my thyroid now. I have not had a skin biopsy. both my primary and rheumy sent me to a dermatologist to have one....went twice, they both wrote instruction to him to do one AND the second time my doctor gave e a printed instruction form signed by him saying thats the only reason i was sent to him(dermatologit) and he still didnt do one saying no need, its allergy. My Rheumy and primary wanted biopsy to be sure it wasnt from the plaquenil and lupus. It went away though.
as for the scopes, yes i had upper and colonoscopy all looking normal. My ear issues i saw another ENT yesterday, he said all my ear issues are from the joint (either TMJ or from the MCTD)
I am feeling better now compared to what i usually do. I have some energy YAAAY!
The GI issues come in go. They are pain in the GB area, stomach pain, horrible bloating in my stomach even if i only take a bite of food. Nausea, some vomiting, and occasional bad pain on the right side from bottom of rib cage up to my neck like my muscles are spassing. Some bread seems to bring that on and iv also wondered about dairy too. They have worried about me having an absorption issue as i have to be on a super high dose of thyroid (synthroid) at times. It seems when i get sick, it drops bad. i was on 325mcg now down to 300mcg daily. I actually feel better when my thyroid is low.

I was admitted to the hospital with pancreatitis in October and the pain and stomach issues continued after that, but went away couple months ago. only in the last week have they started coming back. Also found an adenoma tumor on my liver at the time, it was just recheck and gone. It is thought both the pancreatitis and liver adenoma cama from birth control.


I think i have an absorption issue, only that slows then goes super absorbant, seemingly as sometimes i can take meds like pain pills and be fine then boom take one next day and its like iv taken too much. I also think i have a nervous system issue. I ahev a very odd undescribable issue that comes and goes. And to the Rhaynauds, i have that. At times of stress and every time i go to the dentist ( not sure if its due to anxiety) my entire body gets the cold wet feeling like iv jumped into a ice pond and theres nothing i can do to feel better. which is how my hands and feet feel when the raynauds hits.

Thank you so much for the information, it helps a lot.

Im considering doing a detox...

 
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Old 05-18-2013, 03:11 AM   #12
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Re: My body and immune system are at war and im caught in the middle

You mentioned possible food triggers. That could really be worth investigating. Have you kept a food diary?

Gallbladder problems are one cause of pancreatitis. My sister and cousin were felled by peanut butter but avoided surgery (neither had gallstones). My mother did form gallstones, and after acute pancreatitis, she had to have her gallbladder removed. The thing that surprised my mom was how long she'd felt under the weather before having an acute attack: two years of seemingly random bloating, pain, vomiting, etc.

I hope you can gain more insight & feel better.

 
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Old 05-18-2013, 10:55 AM   #13
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Re: My body and immune system are at war and im caught in the middle

thanks!
Yes i have had th GB symptoms off and on for two years. I have had test on my BG and it always seems fine, so they dont take it out.

Im going to start with a more natural approach and try some food healing...see if that gets e anywhere If it doesnt hepl my symptoms, at least ill be eating healthy so theres only positives there!

 
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Old 05-18-2013, 03:54 PM   #14
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Re: My body and immune system are at war and im caught in the middle

I think they tend not to remove the gallbladder if you don't have stones... but why get to that point if you can avoid it? I'd read up on gallbladder triggers, list them, and include the list in my food diary.

You said dairy may bother you. I like skim-plus milk b/c it has a better texture than skim.

If your triglicerides are high, that's a risk factor for pancreatitis, too. Changing your diet could improve that, too.

I hope you can think your way to fewer episodes! Take good care, Vee

 
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