Ra 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 have been on Methotrexate for about 1 year to treat RA. It has worked great for pain BUT I have noticed a lot of things going on that I've simply contributed to life. I have severe headaches, dizziness, extreme fatigue and major mood swings (depression and anxiety). I've seen some things posted on the internet about these being side effects. I am going to talk to my RA doctor and see if there is something we can do. I have been so bothered by these symptoms that I would just about prefer the pain to the constant feelings of irritability and depression. What are some other medications people are finding useful of RA with out the side effects????

After taking remicade for appx. a year, I started having heart problems, A fib, ending up having heart surgery, a kidney has collapsed, and had a lesion appear which was squamous cell carcinoma. All these problems developed have taking remicade; I do blame it for my problems. My Dr. treated me for ankylosing spondylitis, a form of RA. After so many problems, another Dr. told me that I did NOT have AS. And it did not help my pain at all. This is a troubling experience for me, and has been the worst thing that ever happened to me.

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??

Took my 3rd dose of the Avelox samples my Dr. gave me for a sinus infection. Yesterday I thought it might have been the infection getting worse before it got better and the nausea was from the nasal drainage. Given Clarinix D which I thought might have been causing the dizzy, shaky feeling. Today I woke up feeling pretty good, but took the Avelox with a bagel and I felt very sick to my stomach, hot and flushed, dizzy, throbbing head and wanting to cry. I didn't take the decongestant so I know it was the Avelox. I have RA and yesterday it felt like all my joints were throbbing and I was having a flare up. My doctor's office was closed today, I won't take this again tomorrow. I'll wait until Monday to get a different antibiotic.

I've been on Prednisone for about a month now and have experienced the racing heart. I've been thru so much lately and hope we can help each other here....for the asthma and other reactive friends - try an ALCAT test. This will tell you what foods/meds you have an intolerance to. They send you a kit and you may be surprised what happens to your body when you consume something that your body doesn't like. They have also just given me a script for Methotrexate because my RA numbers are high...I've done my research and so far am refusing to consume that toxic drug. Has anyone tried Minocycline (or other drugs in the cycline family) for joint pain, RA??? I hear it works and at least those side effects aren't deadly.

I have had asthma since i was 10. I am 44 years old now. I have never in my life been on prednisone this long (since Feb 2009). It is now July 11,2009. I was admitted to the hospital for IV steriods (prednisone) because for the first time in my life the general 10 course with the pills wasn't working. so there i was on 165mg of pred every 6hrs. After eight days in the hospital i was released and was to take 40mg for five days and decrease by 5mg until done. I didn't do to well and had severe exhaustion where i couldn't even walk 2 steps the next day. so I went to my pulmonary dr. who said he noticed a severe anxiety side affect in me from the drug and said i needed to get off it as soon as possible, he had me drop my dose every day by 5mg. TO FAST! I had breathing problems again, started over going slower, got down to 10mg and had to jump to 40mg again! side effects for me are severe anxiety (which i have to take ativan for) and especially massive painful foot cramps. My hands will cramp to while trying to write, but the foot cramps and the feeling of being wired are the worst. I am still trying to wean off....sometimes i wonder if i will ever finally be off this stuff. I just want to cry sometimes. It feels like being pregnant and going thru post partum at the same time

Remicade has been a huge help for my RA. Have significantly reduced symptoms, am much more mobile a have almost no pain. However, I am experiencing a side effect that my ENT says is a result of the Remicade. Have overly active mucous membranes in my mouth, so secrete a great deal of mucous - very salty tasting and usually thicker than saliva. As a result, I also secrete a lot of saliva. According to my ENT, there is a natural balance between mucous and saliva, and when excess mucous is secreted, the body tries to maintain the balance. It is extremely annoying and frustrating. ENT says that it is a side effect of all TNF inhibitors (e.g., Embril, Humera). He says that it is not published anywhere, and not listed in drug literature. Also, it is rare enough that rheumatologists are not aware of it since they don't see that many patients with symptoms. However, he says that he sees many patients in his ENT practice. Am wondering if anyone else is seeing these side effects? If so, is there anything you can do about it short of going off the drug?

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

I have been using nuvaring since 2004. I am basically healthy but over the last year i have developed a series of symptoms.

1. Decreased sex drive and cannot orgasm
2. Increase Sed rate
3. Positive C reactive protein
4. Fatigue
5. Anemia
6. Aches in my legs and lower back
7. Depression
8. IBS

They have ruled out lupus and RA even though i seem to show those symptoms.

Wondering if anyone else has experienced these. I'm especially curious about Sed Rate and C-Reactive Protein.

I started taking prednisone when I was only 12 years old and I was on it for about a year and a half. At the age of 10, I was diagnosed with glaucoma, uveitis and cataracts and for about 10 years now I have had all these illnesses. My experience with prednisone had been HORRIBLE. Within two months alone, I gained 50 pounds, my skin started to get really really thin, I started to develop stretch marks ALL over my body with the only exception of my face and hands. I started to get the chipmuk cheeks to the point that my family was afraid that I was going to literally explode. My liver was damaged. My kidney was damaged. The vertebrates in my spine where being chipped away. There was a point in that year and a half where the doctors told me that there was a 70% chance of me going blind. The bottom line was that PREDNISONE WAS BRINGING NOTHING FOR ME EXCEPT RUIN. On top of that, I was constantly depressed. Kids at school would point at laugh hysterically at me. And if people weren't laughing, they were struck by fear and were trying to figure out what exactly I was. I remember this one instance in my school cafeteria where one girl stood up on the lunch table, pointed at me and screamed SHE'S AN ALIEN!!

I was and still am scarred physically and emotionally. My arms and stomach are really saggy because the skin is soo thin. As I said my entire body is scarred with stretch marks. I can't show the slightest bit of my body to anyone because I am so ashamed, embarrassed and afraid of peoples judgments. I am afraid that no one will ever want to be in a relationship with me.

All I can tell you is that though I stopped using it about six and a half years ago, this dreaded drug has truly ruined my life from the very start of my childhood.

I started 40 mg Simvastatin in Sept 2007 and stopped it March 08. I developed severe carpal tunnel Sept 07 and it went away March 08.....gone. The illness simvastatin caused has taken a year to get better. At times, I was too weak to feed myself. Drenching sweats, 24 hour a day headache, vomiting, light headed, blurry vision, and swollen neck glands. On a scale of 1-10, fatigue was a 10. I developed Rheumatoid Arthritis. I had very few arthritis episodes but it showed on blood work. It went into "remission" Dec 08. I was still sick. They said RA was reason I was so ill. I honestly felt I was dying. They tried to fix me, cost me a lot of money. I started CoQ10 a month ago. Made changes with other meds too. I am just now seeing an improvement. The large swollen gland on my neck has started to go away. The headache and fatigue are getting better. It's been a long road. I think it effects so many people in so many different ways that doctors are not clicking. My father, my aunt, my cousin, my brother and I all had different aches and pains. The one thing we had in common was extreme fatigue. We all stopped statins and some recovered quickly. Dad and I are still suffering. No more statins for me.

Reading all this horrifies me since I have been on Remicade for almost 4 years for Crohn's and a still unidentified Inflammatory arthritis of some kind. I will pray for you all. But, on another note and by no means an attempt to diminish the severity of each account in this blog, I have had no such side effects and for the most part have had great success until recently. My Crohn's is and has been in complete remission since the beginning of the infusions. However, I have had increasing inflammatory issues in joints between infusions. I get 5 vials and they give me Solumedrol in the IV. I ended up in the ER last night because my joints were all frozen up and it was just unbearable. They gave me Solumedrol and Morphine, and I am 75% better today. The frequency and severity of the arthritis issues has gotten increasingly worse over the last 6-8 months. I get infusions every 8 weeks, and start to have severe joint pain after about 4 weeks. All that being said, it is appearing like Remicade is still working brilliantly for Crohn's but is having little to no effect on the inflammatory arthritis. The steroid they give during the infusion is what I think is doing the job for the joint pain since I was a 10 last night in the ER, and I am 3 this morning pain wise after getting the steroid. My case is unique and frustrating to the Rheumy b/c my sed rates and RA factures and C-Reactives are all relatively normal when I am in tremendous pain. So, they just ran alternate tests the other day to look into things like Myeloma and so on. I don't believe that Remicade has done any of this. I believe that Remicade's benefits for MOST people greatly outweigh the risks, especially when you are incapacitated with Crohn's etc. But in my case, it just does not seem to be working for my joint inflammation.

I just received the prescription today- very little information given by the doctor- so I looked up some information and found this site. I am most worried about side effects and many say this makes acne worse for up to a month before it gets better or has no result. I am desperate to get something that works- I am 38 years old with some health challenges but acne is controlling my life- its terrible. I am not on medication now -other than Duac Topical Gel and Retin A Micro for Acne- but I am seeing next month a reheumatalogist next month for RA ( has also gotten very bad in the past two months - Aleve not working anymore - ) also my internist wants to have my thyroid checked again and also an ANA LUPUS test redone- was negative last year but she feels its Lupus.

Been reading everyone's postings and now I'm scared. I currently am on Vytorin 10/80 and today the doctor added Welchol. I just had and ACL replacement surgery 4 weeks ago and my leg aches anyhow. I can't remember a time I have not had back pain, and I have arthritis in my joints and neuropathy in my feet. Any yeahs or nahs out there for you experienced ones? Is it worth taking, do you assume all my current pains will only get worse?????

I am a 46year old male who has been on Lisinopril and Enalapril for about
2years. I'm having extreme joint pain in my knees and fingers .I have been checked for RA but they found no signs of this.I want to get off this medicine.
Are there any alternative blood pressure medicines for diabetics. Right now
I feel like i'm 70 years old and would like to know if anyone has stop the drug
and if their systems subsided.

I have taken this drug for 4 nights, as prescribed. It is for GERD caused by RA medications and stress. It seemed to help for two nights, then I started feeling worse, back to the same feelings I had previously. I have difficulty being able to take a "deep" breath and I had terrible nightmares last night. I woke up and was feeling extremely depressed all day and had no energy at all. I think I will have to stop taking this before I get even worse.

Well, let's see, I am 37, I just had my third child a year ago. When I had my first child at 19, I entered the world of Rhumatoid Arthritis, I did not take anything for it, it just seemed to go away by itself. After the second child it flared up but not long enough or hard enough to remember. After the third child at 36, wow did it get bad, so bad i couldn't get her out of her crib. That was the day I started 10mg of pred a day,,it made all the symptoms of the RA almost disappear...almost...which was a miracle,,,but it made all the side effects of the med start,,,,weight gain BIG TIME, bad moods, maybe 2 hours of sleep @ night,,,hair loss which scares me the most, blurred vision, buffalo hump looks like I'm looking for something on the floor all the time,,a wonderful neck that looks like i swallowed a couple bananas whole,,hmmmm,,,,let's seeeeee,,what else, easy bruising thankfully I like the color purple, oh, and me and mr. potty have become well friends. At first, the doc thought it was hypothyroidism because I also had 2 periods a month, but a blood test told threw that theory out. I just want to say,,,,I like that my RA is better because of it,,,but I am as of yesterday taking myself off of good ol prednisone, and sticking to a high dose of IB or Tylenol. It's just not worth it.

My mother actually stumbled across this site and encouraged me to look into a possible connection between my severe joint pain and the Mirena IUD. I had the IUD inserted in July of 2007. For a few months following I experienced breakthrough bleeding but that did eventually end. I suffered from some mild bouts of depression and would completely fly off the handle at my two children. Always linked it to stress. My sex drive became nil. But no other real problems to complain of. But this past Nov (2008), I started having pain in my wrists and hands. I type all day so I assumed carpel tunnel. Then we began a kitchen remodel. After one particularly tough day of demolition, moving and climbing up and down stairs, I became really stiff and sore. Of course I didn't think much of it until a week later when the pain was getting worse, not better. After a few more weeks, the joint pain became so severe that I could not get up and down off the couch, off the toilet, out of the car, without wincing in pain. I felt 90 years old! My doctor had prescribed Naproxen (which wasn't helping at all) and gave me a course of Prednisone. The Prednisone made me feel like a million dollars. Problem is, you can't stay on it. That's when we found this site. I immediately called my OB/GYN and had the IUD removed 2 days later. Of course, doc didn't believe this could be the issue (Surprise, Surprise!). Once the course of Prednisone was over, the joint pain gradually came back, albeit not as bad as the first time. RA and Lupus panels were negative, no thyroid disorder, no diabetes. Going to see a Rheumatologist next month so we'll see. I can mention that I already see a difference in my moods. I feel more patient with my children lately and that alone was worth having the stupid IUD out.

WOW! My jaw is on the floor. I have been taking Simvastatin for 4 years! At around that time I started feeling ill. I ended up in the infection clinic. There they did 6 spinal taps since they could not understand why I had this major headache, and stablike pains.
I was hospitalized for 2 weeks and during the last 4 years I have been in and out of hospitals and doctors.
After they found 'nothing' they told me that I might have LUPUS/RA. So they started me on drugs to treat reumatism. I was on 2000mg per day! Complained and said that the meds where not working and I needed help and someone to listen to what I was saying. Then one of the many doctors I had was telling me to shut up and go see a psychiatrist. That got to me and so I started writing letters. I got a 'new' doctor and he said odd. Told me he was only interested in my joints. After the second time w him he passed away and so I met a fresh doctor, on that was right out of med school.
She looked at me and said...*You cant go on living like this, this is no life.* she sent me to the hospital for 2 weeks so that I could get the right treatment. There they realized that I have no sings of reumatisum but rather a connection w Simvastatin.
They right away told me to stop taking all the reumatisum medication and they will now focus on removing Simvastatin.
I am blown away.... I was so sick, so may hours lost from work, family and friends. I almost left my husband because I felt like I was just 'there' not ever being able to do things. I was so sick all the time.
Wow is the only word I have in my head right now- I am in a shock.

I have been on 20 mg Lipitor for years, and as I also have Rheumatoid Arthritis, all my symptoms have been blamed on that. I have been diagnosed with Fibromyalgia and put on Lyrica because of the muscle aches and depression. My lower back, hurt in a car accident when I was 17 years old, had gotten so much worse that I had 12 steroid shots in my lower spine a couple of years ago. They didn't help my back at all, but my blood sugar went from normal to diabetic levels, and I am now on Byetta to try to lower it.
I am a 56 year old woman who was the math specialist in a school district until last December when I had to retire early. My back pain was so severe that I could no longer go from school to school carting materials. I could barely make it from the parking lot to my office. Mentally I was not ready to retire, but physically, I was (and am) a wreck. I have severe muscle pain in my shoulders, sometimes one or the other, but always present. I have tingling in my right hand, especially in my fingertips, and have trouble gripping and drop things easily. In the last few months the pain in my right thigh and calf has gotten unbearable. I thought at first it was sciatica, but I have had sciatica before, and this isn't the same, although there is tingling, burning , but the pins and needles is so deep in the muscles I have just sat and cried, or wanted to scream. I have wished I could just cut my leg off. And...I am on some pretty heavy duty pain killers for the RA: a small dose of prednisone plus Enbrel, Methotrexate, and Vicodin, and this pain is cutting right through all these meds. I get severe headaches, I went off Lipitor for 5 days and seemed a little better, but then went back on, and it came back.
Since I no longer work, I sleep longer, am exhausted ALL the time, have terrible mental fog, am clumsy, cannot stand for more than a minute or so without wanting to scream, cannot walk more than a few yards...just getting to the car is an ordeal. I tell people that I can only shop in shoe stores and furniture stores...the only stores with places to sit down.
I no longer cook or clean, cannot play with my granddaughter, even holding a book to read can be too much, and I love reading. I feel I am just dying bit by bit as I lose parts of myself.
My doctor is really into lowering cholesterol, and has put me on Zetia in the past few months...and it has been in this time that the pain in my leg has gotten unbearable. He wants my cholesterol to be between 50-60, and has said that the Zetia along with the Lipitor will do that. Is this normal or in any way reasonable??? I am having a full blood workup done tomorrow morning, and I want to go off the Lipitor starting the day after.
I came across this web site tonight while looking up Lipitor side effects, and I am shocked. I have so many of these symptoms, and there are so many I had no knowledge of at all. I knew about the muscle aches, but that's all. I hope someone can help me with what supplements and vitamins I should be taking. I started taking CoQ10 a month or so ago. What else should I be taking for my health? I know vitamin C and fish oil, but don't know how much or anything else. Right now I am just stunned with the thought that all of these problems that have left me unhappily retired, exhausted and in constant pain can all be caused from a drug I have been taking to help me be healthier.

My mother is 40 yrs old and has RA and gets remicade treatments through an iv . It seems to help with the pain of her RA, but the side affects are out of control!!!! she has white puss pockets that show up on her hands and feet. She was told that that was her white blood cells dieing from the treatment. her hands and feet peel and swell making it hard for her to walk or touch anything. her throat has these awful spasms that make it hard for her to eat or drink anything. Theres so much more, it would take all day to explain! Is this really the price she must pay for RA relief??????

Has anyone experienced hives with Mirena? I had it put in about 7 weeks ago and now I seem to have broken out in hives on my arm. I have not experienced any other significant side effects so far.

I am taking Levaquin one time a day, 500 mg. for diverticultis. I have fibromyalgia so attributed symptoms of EXTREME FATIGUE to that but this is fatigue like I've never known. I can't do much of anything. I don't work outside the home so will just deal with it if it cures my infection. I'm using sleep meds too...but that could be fibromyalgia kicking in too. But fatigue is much worse. I hope it kills those bad bacteria!