Auto immune disease symptoms and conditions

I was diagnosed 16 years ago with portal vein thrombosis which is a blood clot deep in the liver. Taking Coumadin or warfarin is not an option for me it is a necessity to live. I experienced headaches and depression early on which I did not connect to the drug because of the trauma I had been through. The symptoms have come on over the years and seem to be worsening. I am experiencing severe joint and muscle pain, cramps in my legs and hands, extreme weight gain, severe water retention ( I take 3 kinds of water pills a day), extreme fatigue, insomnia, heart valve problems, memory loss and have recently found out I have developed severe osteoporosis in the last 10 months. I have recently undergone tests for auto immune disease, lupus and rheumatoid arthritis which all came back negative. I am 42 and feel like I'm 72. I keep asking the doctors if these symptoms are related to the long term use of the drug and they say it is unlikely. I currently take pain killers to manage the pain so that I can function daily. I take 5 mg and 7 1/2 mg alternately and keep my INR around 3.0 to 3.2 and am very stable. After reading these postings I am even more convinced it is the drug. Is there anyone out there that has been these drugs as long as I have and if so, what are your side effects?

So here is the caveat, I am not sure these symptoms really are related to Lisinopril or not, but they all started about three weeks after taking 10 mg a day. Waking at night with rib pain, hip and low back pain. At first this was only at night, for several months (the pain was very intense). The pain would move from rib, to right hip, to low back (mid), left hip seeming to make no sense. I have had every test under the sun, MRI, CTSCAN etc. Now rheumatologist believes I have a thing called Ankolosing Spondolytis which is an auto immune disease in which the body attacks the large joints of the body (I tested positive for the HNLAB27 marker). I will be having a special MRI to test for AS.

So maybe Lisinopril has played no part in this, but I think it is very coincidental that this all started when I started taking the Lisiniprol. I am wondering if Lisinopril could have been the trigger for AS (if it is AS). Until this started I was in excellent health, 40 year old mom of 4!!

I'm 15 years old and i've been taking prednisone for a few months, and from what i've read i'm on a really high dose. i was diagnosed with rheumatoid arthritis and another autoimmune disorder concerning my muscles at the same time. my doctor told me prednisone was my only choice; it was either that or i would lose the ability to walk. he told me there'd be side effects, but i had no idea it'd turn out like this or i would have fought harder for another course of action. i started out on 30mg twice a day, and since then was weaned down to 20mg twice a day and now i'm down to 30mg once a day. i've been looking up a bunch of information trying to figure out if there's a way to lessen the side effects or any hope at all that they will get better. apparently there isn't much. after reading a bunch of these stories i gotta say i'm not feeling great about this. i totally understand everything everyone is going through. i'm sure you can imagine what it's like being smack in the middle of high school with a huge puffy face, acne so bad on my face, chest, back, neck, and shoulders that wearing a bra could put me in tears, and mood swings so bad i've lost friends over it. everyone knows how brutal high school can be, where appearance and attitude are everything. and i try to tell my doctor about it and he literally looks at me like i'm a whiny teenager and says "you're just going to have to deal with it." and people like my mom and my closest friends don't get it either. nobody understands how beyond frustrating it is. i'll get into the worst moods and not have a reason for it, but i'll stay angry for hours or burst into tears over someone looking at me the wrong way. it'll get to the point where i have to isolate myself from other people because the abrubt mood changes get so bad. as bad as i hate to admit it, the pain from the arthritis is gone now and supposedly my muscles are doing better too. developing arthritis caused me to have to quit cheerleading, something i've loved doing for 6 years, because the pain got to the point where i couldn't get my arms above my head or bend my knees. however, i'd almost rather deal with the horrible joint pain than deal with the side effects of prednisone. if your doctor gives you and alternative method, take it. i've always been confident in the way i look and really outgoing and happy and now i sometimes catch myself thinking about suicide. that's shocking to me because i've got so much going for me, but this medicine makes me miserable. and when i complain about it, anyone i'm talking to just looks at me like i'm being a cry baby. my mom does too, she'll say things like "you just have to do this. i know it's not what you want but to be honest i'm sick of hearing you bitch about it."
i feel a little better knowing other people feel the same way - like nobody gets whats going on with them. the prednisone does give me days of really great euphoria and days when i feel like i could run a marathon, but waking up in the morning to the acne and huge face puts me to tears every day. i have to pee all the time, usually getting up at 2 or 3 am. i don't sleep well anymore and i do sweat all the time. which also sucks being a teenage girl. i'm always hungry, and when i eat i never feel full so i don't know when to stop. my neck and face have put on so much weight that when people see me in the halls or out and about they ask me what happened. mind you these are people i don't talk to, just ones i know from classes or whatever. and it's pretty bad when teenage boys i've never really talked to ask what happened to your face. kind of a blow to the ego, or whatever is left of it at this point.
i'd like to know if, as my dosage gets lowered, the side effects will diminish and when i'm off the prednisone completely if they will disappear altogether. any help there?
or if there is any way to help the acne or puffy face

my doctor just put me on something called methotrexate or something like that to help wean me off the prednisone, and does anyone know what those side effects will do? or if they'll affect the prednisone side effects?
i'm constantly obsessing over gaining weight and what my skin looks like and what i eat and how heavy my face feels and the occasional pressure in my eyes to the point where i just want to be put out of my misery.
and after reading other people's stories i really don't understand why this drug is still given out as freely as it is. but maybe all doctors are like mine, they just don't get it.
best of luck to anyone who's on prednisone, my heart goes out to you; i'm right there with you
sorry this became like a book it wasn't meant to be this long

My 7 year old son has been on Singulair since this spring for a dry hacking cough and allergies. The Singulair worked great clearing up his symptoms. We have not seen any behavioral changes. Our doctor said he only needs to take it during fall and spring when his allergy induced asthma is the worst. Both times that I have taken him off of it for a seasonal reprieve he has developed a VERY PAINFUL STOMACH ACHE. He doesn't vomit, but he rolls around complaining that his tummy hurts. I have seen other posts concerning stomach aches when on the medication, but I am wondering if anyone else has had this experience when they went off of it. Even if he forgot his medication a couple of days, the stomach ache will present.

I am a 30 year old, been on L24Fe since beginning of Aug 06 due to breakthrough bleeding for several months on Ortho TriCyclen which I had been on since 1994, with no problems. Once I started it, my breakthrough bleeding stopped-in fact I never had a period again.

However, after a month, I started experiencing shortness of breath, and my heart was racing, I went to the Dr, they did an EKG, chest xray, pulmonary function tests, allergy tests. You name it. Dry mouth, dry eyes, vaginal dryness, hot flashes, insomnia, acne and wheezing and coughing followed. I was seen by several top specialists. They decided that I had Vocal Cord Dysfunction and it was caused by either something called Sjorgren’s syndrome or Acid Reflux. They decided it must be Acid Reflux-even though I didn’t feel like I had indigestion. They started me on protonix, that didn’t work, then switched me to prevacid, then when that didn’t work, they decided to put me on prilosec, then doubled the dosage, then tripled the dosage. By that time, I was doubled over in pain and was going to the bathroom every ½ hour. My stomach was swollen so bad, I looked very pregnant. I am a petite, thin person. I gained about six lbs over this time and I’ve been the same weight since I was 18, and I worked hard to keep it just at six lbs. (working out 2xs a day-seriously became a huge gym rat). I couldn’t wear my wedding rings b/c my hands were so swollen-when I complained-they said they weren’t “that swollen” and I just needed to buy bigger rings. I finally had an endoscope in Nov 07 and they ruled out acid reflux (which I knew bc I had no symptoms).

They then decided it must be the Sjorgrens-a very serious auto-immune disease-which causes-dryness everywhere, and they were guessing the dryness was causing my vocal cords to spasm-so they tested me-with a blood test-it was negative. They said sometimes the blood test is negative-so they then did a lip biopsy-also negative. The doctors all finally said, we don’t know what’s causing this, we’re stumped. You’re just going to have to live with the Vocal Cord Dysfunction-here’s some anti-depressants. I didn’t want to take them so I didn’t. I was stressed b/c I wanted to start a family-but how-I had no sexual desire, and I wasn’t an emotional wreck-not ideal conditions for starting a family-right?

Throughout all of this, I kept asking each dr. could it be my pill? No, it’s not the pill and I believed them b/c I had never had any problems with Ortho. I decided that I would go over my huge medical file 5 weeks ago. I spent two days and then got online and found this website and spent about 6 hours reading everyone’s comments. I was at the end of my package. I threw all of them away. It has been a month, I’ve never felt better. Suddenly, I’m able breath, my mouth isn’t dry, and I’m sleeping at night. I’m still periodically having hot flashes (but I’m not sure if its just the weather) and I’ve noticed that the vaginal dryness is getting better, but not fully. I have been getting a little dizzy, but I’m told that this pill has iron in it, and I’m likely just noticing the reduction in iron. I have started taking an iron supplement and it helped. Also, I got my period after 4 weeks, it wasn’t terrible-it lasted 5 days and it was light. I was massively bloated though. I just weighed myself after 2 days finishing my period-I haven’t weighed myself since about 2 weeks before I stopped the pill and I’ve lost 3 lbs.

If you think about everything. The signs I had ARE THE SAME AS MENOPAUSE. This pill mimics menopause. I’m 30, I’m not ready for that. I am paranoid that I’m never going to be able to have children. Oh yea, and my face has been clear.

All the doctors think I’m crazy, even my gynecologist. I’m considering contacting the FDA to force them to review our complaints so no one else has to go through all of these problems. Please contact me at this email address if you are interested.
I also found this website that we can report complaints to the FDA.

https://www.accessdata.fda.gov/scripts/medwatch/

im 22. was diagnosed with dermatologist in November. its an auto immune disease...inflammation of the skin and muscles..been dealing with this for like 8 months now. been on prednisone through all of this the whole time. seems like it might have made my muscles better but does nothing for my rash really. i hate being on steroids. i never know how im gonna feel everyday. major mood mood swings. i was on 60mg ive moved down to 20mg a day now. i still have all the stupid side effects. hair on side of face, arms and back..swollen face..acne..and i now have stretch marks..i hate it and cant wait to get off of it. wish i was never on it.

I received my first shot of Gardasil in January 2007. It could have started sooner, but about a month later my hairdresser noticed a bald spot in the back of my head. I rushed back to my ObGyn and asked her if the Gardasil could be the cause as nothing else had recently changed. She said that she had not heard of this, but she referred me to a dermatologist. I asked him if my hair loss had anything to do with the Gardasil. He replied that I had Alopecia areata and one thing had nothing to do with the other. He advised that I continue with the Gardasil and that he would start treating me for the alopecia. I wish that I would not have listened. I don't know what would have happened if I had stopped then, but I didn't I proceeded with the treatment to the end now over half of my head is bald!!!
I don't know what to do. I keep going back to the dermatologist for treatments for the alopecia, but it just keeps getting worse.
If anyone has had a similar experience and would like to share or has found some other treatments that work, please post a reply.

Melissa

DO NOT take antibiotics unless it is a Life or Death situation!
I have been diagnosed with CYSTITIS, based in my breasts & bladder, and now I'm scheduled to go in for other tests because I have had excessive bloating, IBS & pain in my gut.
I thought the Nuva Ring was causing my extreme random cramps, my breast soreness (Extremely Painful, making me want to inject them with novacaine, if it were a good idea...), my Pain During Sex (esp. since I have a lovely sex drive) and most recently, the constant urge to pee when I didn't, but it was NOT the birth control.
ANTIBIOTICS CAUSED THIS!
In the last month I have met 3 more women (& 1 man) with the same/similar problems and diagnosis, All on heavy antibiotics in the last year.
The good news is that it is Not cancerous to my knowledge, there are foods you can eat, like those that are good for reducing swelling, and it's a good idea to Avoid certain foods such as soy, anything too acidic like tomatoes, cranberries or citrus fruits & juices, preservatives, additives, really spicy foods, etc. **It is Very Important to take a Pro-Biotic capsule with At Least 4 different types such as Acidophilus, Bifidum, and others, depending on your symptoms & areas of concern (look up what bacteria does what). Taking these only during antibiotic usage Is NOT Enough!
The bad news? If a few months to a year of partial/full diet change does not help, it is considered either too late to help (get used to the pain, it's not going anywhere) or it may be an auto-immune disease, though this is quite rare.
PLEASE, LADIES -- Take Care when dealing with antibiotics, they are much more dangerous than many people/doctors know/are lead to believe. (And as for the yeast infections and bacterial vaginosis? Take 1 part Hydrogen Peroxide, 3 parts water, douche (rinse, do not let it set for more than 10 sec's) once a day before bed/naptime for a few days, splash Outside Only with cool water if needed, but Not inside. Burn/irritation for about 1 min. but Absolutely worth not waiting for a doc's prescript. or spending endless $ on crappy worthless ointments/creams. Totally safe when Diluted -- Hydrogen peroxide is made naturally on its own in All Vaginas, this just helps to kill yeasts and bad bacteria which are Anaerobic (do not like oxygen).)

I got my IUD placed in about april of 07 i have seen than experience crazy skin problems such as ance i've never had a problem with ance and i'm 25 i have very bad mood changes that are unexplainable now that i have reread the side effects of Mirena i now know why all the side effects began around the same time and now i'm figuring out why! I will be getting it removed. Has anyone else experience really bad mood swings i was so ready to get on depression medications now i'm going to get it removed and will take it from there!!! Please let me know if i'm not the only one

I was dianosed with an immune disorder of the inner eye. It was advanced enough that regular treatments were not effective. So the dr. started me at 60 mg of prednisone and started to taper it off at 20 mg. every 2 weeks. At 6 weeks, it was observed that my symptoms had reappeared and so he started back at 60 and the tapering was much, much slower (50 mg, 40 mg 30 mg 25 mg 20 mg 15 mg 10 mg 7.5 mg 5 mg 2.5mg) the first week I had panic attacks and wanted to physically attack people. I couldn't sleep. After that I had mood swings, fuzziness, forgetfulness and confusion, all I wanted to do was lay on the couch. I had heart palpitations, moon face (people thought that I'd had dental surgury) went from a size 6 to a size 12. I had terrible yeast infections, and wanted lots of fluid and had frequent urination. It was horrible. By the time I was done (and I had withdrawel symptoms long after I stopped taking it) I'd lost 2 years to the side effects. I do get to keep my eyesight. Fair trade, I suppose. In the next year and a half I lost weight down to a size 2, not as good as it sounds, all my muscle tone had gone and I'm having to rebuild from being nearly skeletal. The worst part of it is.. at any time I can be put back on prednisone and will probably choose to over losing my sight. At what point does one have to worry about osteoporosis? How much prednisone for how long effects the bones? There are things I'd like to do, but I'm not sure if I should.