Connective tissue disorder symptoms and conditions

Hey Guys,
I'm new to all this but just wanted to share my story with everyone so I feel like i'm not so alone! I'm 23 and was diagnosed with SLE 3 years ago.
It started in my joints and then moved to my kidney's real fast. I now have stage 4 nephritis, finished 6months of cyclophosphamide in Feb and have been on no less than 40-20mg of pred for about 2years. Just when things were starting to look better it has stared in my blood so they are trying to up my dose again. It has thinned my bones so I am on special meds for that now too.
I know taking the pred is something I need to do to live but it comes at a really high price. I don't even look like the same person I used too because of the moon face. I know it's shallow but at 23 it is almost as bad as having to live with this disease. I now have really low self esteem and get anxious all the time, which is affecting my job. As much as I want to come off I also worry that I would have to stop work again as the pred is what keeps me going. All I want to do is get off it though! Anyone know any alternatives? Also, just wondering if you guys are still drinking alcohol while taking pred?
Thanks for listening guys!

i went 2 the specialist yesterday that put me on the prednisone due 2 me having crohns as the joint pain in my ankle has been so painful and his now told me that the prednisone has giving me arthritis im really upset about it im 25 and im in a lot of pain the specialist said 2 go home and rest my ankle for the weekend its been 2days and its still not better iv got 2 go back and see him on Monday and if it hasn't improved which i doubt it will his going 2 change my medication he wanted 2 up the dosage of prednisone to 30mg as im down to 10mgs now and i told him that i have received every side effect possible 2 the prednisone and its just starting to reverse and there is no way im going to le you put me on a higher dosage i want 2 come off this drug as quick as possible and he surgesseted another medication that will help with the arthritis in my ankle but it will make me nausea i told him id rather that then all the symptoms iv been having in the last month then be put back on the prednisone

iv been diagnosed with crohns 2months ago iv now been on prednisone for 4weeks i started on 40mg and now down 2 15 the last week my ankles have swelled up and now my right ankle is so painful to touch and walk on, and nothing is making it better, pain killers don't work, massaging it doesn't work, putting deep heat on it so to night i iced it for 15 mins and put a heat pack on it several times the pain went away for 10mins and came back its so painful im almost in tears, im down 2 15mg now so im not eating as muchas i was b4 i wasn't getting full i just keeped eating, my mood swings arnt as bad iv got moon face as they call it and i hate it as theirs no shape at all 2 my face, im getting pimples as will iv retained all this fluid and i feel like a marshmallow can someone please tell me that this pain will go away or is their something i can take 2 make it go away this is the worst medication in the whole world when i get off the prednisone and i have another flar up id rather have the runs and stomach cramps then all this drama iv been having in the last 3weeks iv also changes my whole diet and its made a huge difference 2 how i feel

I have been taking prednisone for three years and I love it! It has helped me out with breathing problems and arthritis pain. I take a small does every day. And when I am without it I have trouble breathing and have painful arthritis pain. This drug has done wonders for me.

Hello,
How long do side effects last after completing steroid treatment? I've been off of pred for 4 months for crohn's first time. I was on 40/30/20/10 for a 6 week period. When I got to 30 my legs went into extreme pain. They felt like they were on fire, burning knees. Went to several doctors. One said steroid withdrawal, one said inflammation of nerves from Crohn's. Neurologist put me on neurontin to get off of the pain meds. I am still in excruciating pain and wondering if it really is steroid withdrawal. I can barely walk at times with extreme sharp pains, like someone is stabbing me in the legs. Can't stand for long periods of time and pain pills barely touch the pain. During steroid treatment, they gave me 3 rounds of Dilaudid in the ER and I was still crying, and I don't cry. Has anybody ever had this effect this long after being off the drug??

The mirena coil has destroyed my relationship. At the beginning my partner told me he could feel it and it hurt us both. But when i told the doctor he said my partner was making it up as it is not possible to feel it. Im made to feel like a liar, and im sick and tired of them lying to me. I get sharp stabbing pain all the time, every day where the coil is. Sometimes i can not sit down as it hurts so much. I have no sex drive, i also get this weird pain at the top of my left leg near the fallopian tube. I bleed almost everyday and have constant cramps. Which is causing my spine to curve, due to not been able to sit up properly. My partner has left me as it has been going on for 3 years. I can not even begin to start a new relationship as sex is very painful and i bleed heavily afterwards, which lasts for weeks. I have a connective tissue disorder called Ehlers-Danlos vascular syndrome. And the hormones that are in the mirena coil react to my condition and i shouldn't be having the this coil. But my Dr refuses to take it out. I am deeply depressed by this as my life has been ruined by the mirena. I also suffer with headaches and i burn up and i start to sweat quite bad. Which can be very embarrassing. I didn't really want the mirena but i was pushed into by my doctors, as they thought they knew best. I told them that it wasn't recommended as i have EDVS. But they don't care what i think. I have begged for them to take it out but they will not do it. Im at my wits end as i don't know what to do anymore. I am 33 years old with a disable son to look after. And it can interfere with me looking after him as the pain gets too much. I want it out and i want my life back before i have no life left! Ladies please do your homework before making any choices. Dr's are not super human and they do not know everything. They are only human and make mistakes just like anyone else.

I'm a 35 yr old stay-at-home mom of two who was diagnosed with mixed connective tissue disorder over three yrs ago. But since I was 18, I've had scleroderma & rheumatoid arthritis when I was 23. I never took any drugs for either one up until May 2008. Although the worst things I've gone thru over the yrs were weight loss, stiffness and limited flexibility. The most dramatic change was my facial features. I've had old friends from high school ask me if I had plastic surgery! Other than that, I was able to get pregnant twice and have two beautiful boys. When my rheumatologist diagnosed me with MCTD in 2006, two yrs after my first child, it was very upsetting to know that lupus and sjogren's syndrome was added to the mix, literally. She wanted me to take prednisone and plaquenil. I said no way. I told her I wanted to try for another child and didn't want any drugs to ruin my chances. She assured me that I could take both even while I breastfeed! So I left and ended up with my second boy in 2007. But admittedly, both pregnancies took a toll on my body, the first one with MCTD and then the second one, I had gestional diabetes. A few months after birth, I felt the arthritic flares and the fatigue and sluggishness coming on strong. Without doing any research about either drug, I did consider taking it after I stopped nursing my second child and thought okay, two children are it for me and now it's time to take care of me. I was given prednisone at 5mg daily May 2008 for that entire month. I was very scared but I did it. I just didn't do it consistently. I would skip a day or two..or three...or four days at times before I would take it again. The rheumatologist didn't give me any warnings about side effects, skipping the dosage or tapering off. After I ran out, I decided I couldn't go back on anymore. It did ease the stiffness in my joints and gave me more energy but the mood swings, faster heartbeat and more than normal anxiety did not help. In the next two months, I experienced serious cases of heartburn and acid reflux and a series of episodes when I would gag on a bite of food and had to jump a few times to get it down. I felt a rush of such fear every time it happened that I knew it was the absolute worse feeling I ever experienced in my life. Then the worst happened last August when I fell asleep one one night after having a chocolate chip cookie. I woke up and couldn't swallow. I started drinking water but it was coming back up and out of my mouth. I panicked and screamed for my husband to do the Heimlich on me but it wasn't working. We called 911 and I started downing another glass of water. By the time they got there, I felt the cookie go down. It was something I never wanted to go through ever again. I saw a holistic chiropractor who specialized in kinesiology and other little rituals. He discovered a problem with my adrenal glands and digestive system. Soon after, I saw a gastroenterologist, had an endoscopy and Barium swallow and the diagnosis was esophagitis. It significanty showed how thin it was getting and why I had trouble swallowing. As of last November I was scheduled to have a three hour endoscopy to have a tube go down my esophagus to widen it enough to be able to swallow again. I was too scared and so it didn't happen to this day. You see I like to go the natural route but it is an expensive one at that. It really is my gut instinct that tells me that drugs like prednisone are killing more people than helping people live. But I look back to the fact that I still didn't know anything about it, not like I do now, thanks to the internet and websites like this. Then here's an absolute doozy for you! I was fine for a few months, up until a few months ago in February. My knees were in pain and stiff as a board, my arms were not happy as well. I couldn't take it anymore so I actually went back to my very first rheumatologist in March, who I saw when I was 25 yrs old. He did x-rays and then pushed for the prednisone. I broke down and decided to take it again. This time at 10mg a day. Now I know this is nothing and so was the 5mg from last yr but being only 102 lbs at the time, my body was telling me that it couldn't handle it anymore. I took it consistently this time and for almost two months. The last two weeks though I started to skip again. I also decided that the RA was too old school for me so I went to see yet another RA at the end of April, the one who diagnosed me w/MCTD three yrs ago. I figured the first one never changed so maybe she got better this time around. She took me by surprise when I told her I was taking pred and that she wants me to stop!! She specifically said, "it's an immunosuppressant, that wouldn't work for you."! What a joke!! So she just said to finish it off and start on plaquenil, another drug I dreaded to take. Again, no explanations about side effects or tapering off, I had like three pills left and just stopped. As for the plaq, talk about short-lived. I took maybe three or four and that was it too! I was angry by all the RAs and how they operate. Just take this and don't worry about nothing else. I'll see you in a few months. Then you go home and forget about it. It is highly unlikely with what came next for lil ol me. The first week of May, a pain started in my right ankle. It was more like an annoying sore pain so I tolerated it. By the end of May, I was hobbling on a cane and watched my foot go from normal every morning to an inverted position, w/ the sole facing my left foot. It was swollen, painful and I couldn't put any weight on it. After thinking I was going through an arthritic flare, I said to myself that this was no ordinary flare I've had in the past. I thought of prednisone and how it started after I stopped taking it. The plaq was not in the picture since it takes months for it to take effect. THAT'S WHEN I FINALLY SAT MY ASS DOWN AND STARTED SURFING. After a good three sleepless nights of reading pages and pages of info about withdrawal symptoms, tapering off and stories much like the ones I've read here, I flipped out and went on a mental rampage. I put two and two together about the link between my esophagus and stopping the pred last yr. I have no doubt that the pred f'd it up! Now after seeing one orthopedist (who didn't deal w/the foot/ankle but didn't know), having an MRI which showed torn tendons and ligaments and then being sent to a podiatrist surgeon (BIGGEST MISTAKE TURNED INTO A BLESSING), who decided to take the conservative approach by having my foot casted in a straight position. It was a procedure that I had to be knocked out for since I couldn't bear the pain of anyone moving my foot. That was June going into July. Removal day was the 23rd and lo and behold, hello inverted foot again. Not only did the cast feel loose but I felt my foot turning in it! The blessing was that I didn't have surgery and I didn't have it w/ this damn doctor! He then felt I needed to see a neurologist to rule out whether I may have lesions elsewhere in my body that could be the cause of my foot inversion. I said sure I will see one but I'm not coming back to you! I went to see the doctor I was supposed to see in the first place, an ortho surgeon who specializes in the foot & ankle. But boy he threw me for a loop! Not only did he roll his eyes at the idea that prednisone was involved in this injury, but that MRI don't tell the truth and so I don't have anything torn!! Based on my autoimmune history, he wants me to see a rheumatologist to rule out arthritis as the culprit. He also thinks seeing a neurologist will be a waste of time. He also mentioned the possibility having RSD/CRPS. Google it, it's not GOOD! I honestly hope that's not the case since I'm not in any pain other than the stiffness and non weight bearing pain I'm already used to. This ortho is supposed to be one of the best in the nation and I don't know if I can trust him either! All I know is the prednisone should be BANNED. BLACK BOX THIS BITCH!!! If I had the power and money to go after the makers of this drug, I would run them down for every dollar. I have my 22 month old who was just diagnosed w/PDD recently and I get angry w/the memory of that RA trying to get me to take the pred and plaq before I got pregnant again! My almost five yr old is wondering why I have to walk around in crutches every day and that I can't go outside to play with them anymore. It's been almost three months of this ordeal and it's starting to really depress me, my husband is trying his best to take care of me and the boys as well as my mother and mother-in-law. I have a great support system but I still long for leisurely walks by myself and taking the boys out on my own. I can only go outside in a wheelchair after my husband carries me down three flights of stairs in a no elevator apt. bldg. Life has changed drastically! I'm trying to stay sane everyday for my boys' sake and for my husband's. I do want to mention one last and most IMPORTANT THING. A website: ****** I started taking it two months ago and it has helped me tremendously so far, regardless of my situation. I developed an enlarged thyroid nodule back in February which needed a sono guided biopsy to see if it was cancerous and it turned out to be benign with normal thyroid function as of last month. As for my foot, I don't know what I may have if it's not arthritis related but I hope that LDN is working on it as of right now. For all autoimmune disorders and some cancers, anyone here should take a look at the website and read more about it. Thank you for letting me share my story :-).

I started taking prednisone along with Cytoxan, a chemotherapy drug 15 years ago when I was diagnosed with an undifferentiated connective tissue disorder that led to symptoms like idiopathic pulmonary fibrosis. After a couple of years, the inflammation cooled off and I no longer had increasing scar tissue in my lungs (IPF is almost always terminal) so I was glad of that. However, sometime in that first year or so I developed hardish lumps under my skin and severe pain that felt like it was "under my skin" but not my muscles, as in fibromyalgia. The lumps are even more painful, and the skin feels as if someone tried to "skin" me and then just llay the skin back down.
I have had to be on timed-release morphine for years in order to function with this pain, as it is especially painful if I brush up against something or sitting or lying down pressure is intense. Also the skin on my tongue gets so tender I have to use kids' toothpaste or it burns terribly.
After 15 years some of the lumps have gone away, but I've recently had to go back on the prednisone for my lung inflammation.
The last time I got a new prescription for prednisone I read the tissue-paper printout (not the short one you get with every Rx, the one written for professionals which includes all the new data, tests, side effects, etc.) What I want to point out, as I've not read one person saying this, is that to avoid a lot of the side effects and the harm to the glands which produce our own natural steroids, is that they are now recommending that it is taken only EVERY OTHER DAY. They say there may be some slight increase in symptoms on the "off" day, but that this keeps the natural cycle in place in bodies subjected to this drug and therefore reduces symptoms.
This is what my last pulmonologist prescribed for me and so far I have had minimal side effects--no ravenous appetite and weight gain, no "moon face" and it has still helped my symptoms.
Please ask your pharmacist for the flyer that comes with the new package and read this for yourself and then take it to your doctor. It may not work for those in dire need of the prednisone but could perhaps be tapered to this once the first lethal symptoms die down. ASK YOUR DOC--I cannot believe I have not heard more about this as it's right on the flyer--but docs are so busy, it's understandable. I'm grateful my doctor is up on the new research because I don't mind taking the prednisone this time, and I used to HATE it!
Good living to all and I wish you all the healthiest life possible.

I was taking 500mg three times a day. After 1 week I developed severe joint pain and swelling in my fingers. I got an itchy rash on the bridge of my nose and over my eyes and inside my nose. The joint pain continued to my knees and toes. I have been off of the medication 3 weeks and I am just starting to feel a little normal. a different doctor put me on 800 mg of Ibupropen 3 times a day and after reading up on the side effects of Cephalexin I began taking Benadryl which has helped a lot.

Im not wanting to scare any of you, but my reaction to this family of antibiotics happened in Spring 2002. I took one dose of this quinolone antibiotic for a sinus infection and was in the ER four hours later. After taking the medication, I felt very fatigued and lay down on the couch, I woke up a few minutes later feeling like I was falling, and my heart sustained 170+ beats per minute heart palpitations for several hours. The last thing I remember was calling 911 because I was home alone and knew something awful was happening. The ENT's said that they had never seen anything like it. I experienced horrific anxiety attacks for weeks afterward. Keep in mind I had been a very healthy gal before and had never experienced any type of health problems. I now see a rheumatologist, a neurologist and a gastroenterologist. I have been diagnosed with MCTD (Multiple connective tissue disorder) a Lupus like illness. My neurologist says that my central nervous system was damaged in the reaction as well. He also says that physicians are grossly misinformed about this family of antibiotics, and in his opinion, anyone who prescribes them for anything less than a life threatening condition is committing medical malpractice. I agree wholeheartedly since my life will never be the same.

Anxiety and Psychiatric Disorders

Magnesium deficiency causes increased levels of adrenaline, which can lead to a feeling of anxiety. Rats who become magnesium deficient have an increased level of urinary catecholamine excretion (a by-product of adrenaline).

People who have mitral valve prolapse have also been found to have an increased state of anxiety and have an increased level of urinary catecholamine excretion, the exact same condition found in rats who are Mg deficient.

It is not surprising then, to find that people with mitral valve prolapse are usually low in magnesium, and that magnesium supplementation alleviates the symptoms of mitral valve prolapse and reduces the level of urinary catecholamine excretion, i.e. it also reduces the anxiety symptoms.

Researchers in Spain found a correlation between anxiety disorders and hypermobility. In fact, they found that patients with anxiety disorder were over 16 times more likely than control subjects to have joint laxity. If you put the study results together, then there's a link between anxiety and hypermobility, a link between anxiety and mitral valve prolapse, and a link between mitral valve prolapse and hypermobility.

These studies tell us that anxiety disorders occur in many people who simply have mitral valve prolapse and/or joint hypermobility, meaning anxiety disorders are not specific to EDS or any particular connective tissue disorder. Marfans also have mitral valve prolapse and joint hypermobility which would lead one to conjecture that they, too, have anxiety related disorders. As it turns out, a connection between Marfans and anxiety related disorders has been noted.

A study in Bulgaria also found magnesium abnormalities in patients with schizophrenia and depression. The authors thought the schizophrenia and depression caused the magnesium deficiencies, but I disagree that that was necessarily the case. When you look at this study within the context of all the other studies mentioned in this section, it is more likely that the magnesium abnormalities caused the mental illness. (There are quite a few studies on magnesium and mental illness on Medline. I just included a few to highlight my points.)

In a study from England, there was a strong association for more disturbed and excitable patients to have abnormal (either high or low) magnesium levels. The authors thought that the patients who seemed most disturbed may have some abnormality of magnesium metabolism.

To read up on the link between cholesterol levels and anxiety and depression, see my web page on low cholesterol levels.

For more on this topic, see my section on Anxiety and Depression - overlooked nutritional causes.

I've been diagnosed with a mixed connective tissue disorder which is a crossover of Sjogren's, Dermatomyositis, and some Lupus.

I've been on 60 mg a day of Prednisone for almost a month now. I've been slowly realizing some side effects.

I had a really bad mood swing yesterday with my kids, which I feel just awful about today. I never had a mood swings before that were really really bad. It was a bit scary, because at the time you don't realize it and upon later reflection it's pretty obvious you weren't in a fair state of mind.

I've also noticed a very puffy face and some weight gain, which i am also going to blame on the holidays heh heh. I haven't felt my appetite increase though, but I feel bigger.

Also, the last few days I've noticed I've been getting really hot and I need the fans on and I've been sweating a bit. It's December and I'm sweating! Can't wait till this summer!