November 16th
2007
8:42 PM
Yesterday (about 36 hours ago) I took my first Fosamaz, for some minor bone thinning. A few hours ago, I felt like I had pulled something across my back and it has gotten worse. The pain seems to have spread especially to my knees but also my elbows and hands. I have rheumatoid arthritis and take methotrexate, plaquenil, and naproxen. Normally with my arthritis, I might ache SOMEWHERE (for the most part pain is controlled), but now I'm aching EVERYWHERE, it hurts to move. I just thought about looking up possible side effects online and found this site. This feels almost like the flu, but I don't have a headache--yet, anyway. I just took a muscle relaxer to help--I hope I didn't make it worse.
-- By 49yroldafw | Reply | Private Message me
October 3th
2007
11:49 AM
My husband was given plaquenil as a substitute for prednisone which was causing him severe weakness and weight loss. The plaquenil has caused ringing in his ears and he has experienced a strange twitching sensation inside his head which we are not sure if it is going with the plaquenil or the Immuran which he was also taking. Ringing in the ears is a known side effect of plaquenil and we just wonder about the brain twitches (like a nerve firing) because they are both centered in the brain. Has anyone else experienced anything liike this?
-- By wilsclan | Reply | Private Message me
October 3th
2007
11:42 AM
My husband was diagnosed with an autoimmune disease that was attacking his shoulders, hips and knees, last February. The cause was unknown, perhaps a drug reaction to Amitriptylene, perhaps PMR, they still don't know. The doctors put him on prednisone. 15 mgs seemed to control the symptoms and he started to feel better right away. Weeks went by and he occasionally said, I seem to be losing weight. Then it was, I've lost 10 pounds. Next month it was five more. And he started getting weak. His muscles were just weakening and atrophying. He was thin to begin with and by September he had lost 26 pounds. He no longer had the strength to work and was put on temporary disability. We felt it was the prednisone because it all started happening together and we convinced the doctors to let him try to taper off of it. They put him on plaquenil and Immuran and let that build up in his system before they would let him begin to taper off the prednisone. He is finally off prednisone completely and he has finally started to gain a little weight back and feel a little stronger. The hardest part was convincing the doubting doctors. They all said, Oh no, prednisone makes people gain weight. Yet there he was standing in front of them. He certainly hadn't gained weight. But if a side effect is "typical" then they seem to insist that you have the typical side effects or you must be making it up. Of course, they could see he wasn't making up the weight loss, so they did a million tests looking for some other cause; cancer, etc. All were negative. He did go to the Mayo clinic who ran a bunch more tests and they did find one interesting thing: a super low testosterone level. They felt this might explain the muscle loss and weakness. So they started giving him testosterone. However, I say, which is the cause and which is the effect. He didn't have this low testosterone before he started taking the prednisone. That awful stuff messes with all kinds of things in your body--basic things like the hormone balances. When we got down to 2 mg per day we stopped cold turkey. Things are better now. It appears that he still has the underlying auto immune problem because the pain is coming back in his hips and shoulders. But he will not go back on prednisone for anything. That stuff was killing him.
-- By wilsclan | Reply | (1) replies | Private Message me
September 29th
2006
7:39 PM
I am not a doctor, but I suggest that everyone who is taking prednisone and having these nasty effects...to get weaned off of them. THIS DRUG IS NO GOOD!! My Rheumy rushed me off these pills just last week and doesn't want me back on them...unless I run in to a crisis with my Lupus. I have been on these pills on and off since 1997 and the side effects are ugly. Constant craving for anything I could get my hands on, round face, mood swings, no sleep, brittle bones and bones cracking,sleepless nights and one major problem was the thinning of my hair. Boy did it do a number on my hair. So I am trying to grow it back little by little by taking baby steps. That's what my Rheumy told me. So I am just on the Plaquenil and taking my multivitamins. I am just hoping for some resolution and I wish you guys all the same. But please think about another alternative to prednisone. That drug is awful.
-- By quaramel31 | Reply | Private Message me
July 19th
2005
8:08 AM
prednison is an evil drug but even that i have most of the side effects i still needed... i cant function without it. if i try to stop even reducing the dose order by the doc all the problems start. headaches, dizzines, swelling on arms, legs, ankles, shoulders and knees. i have been on prednasone since april 19,2005. i think im addicted to it, thanks god for this site i know now that im not alone and all of you have the same problems i have. now i hope all of u can cope with these med.
these side effects are not easy to deal with it but if the med is working hang in there. i try to quit just like that when i was on 60mg but believe me is not a good choice. god bless all of you and i wish you the best, by the way i dont know if the side effects are from the pred or the other 10 med i have to take daily, plaquenil, pred, methotraxate, folic acid, hydrocordone, prevacid, percoset, sulivanc, albuterol, etc... i dont wish my desease to no one... asthma, rheumatoid arthritis and lupus....be patience and good luck.
nora from las vegas
July 10th
2005
4:13 PM
I have had psoriasis for 15 yrs and psoriatic arthritis for 5. After having a major flare up of psoriatic arthritis where my tendons and major joints swelled.My doctor finally decided to prescribe me something for the swelling after 4 months of not being able to walk most days. I first started with Sulfasalasine (500mg daily for 7 days, 500mg twice daily for 7 days, 500mg three times daily for 7 days, and 1000mg twice daily for 7 days). After a month my psoriasis started to flare and it looked as if i was having a rash so it was discontinued.
A week later i received a prescription for Plaquenil (200mg x2 for 14 days) and Prednisone (4x5mg) in the mail. It was a two week trial of plaquenil, and with the prednisone i was to decrease by half a pill every three days. By the end of the two weeks of plaquenil i was noticing a red blotchy rash on my chest. I contacted my doctor. 3 days later the rash had gone from my chest to my neck to my cheeks. By the 4th day i had swelling around my eyes and they were also red and blotchy, my hands were also swollen to the point where i couldnt bend them and I was having a fever and night sweats. My doctor finally contacted me on the fifth day after stopping the plaquenil, and told me to discontinue it. I went to the hospital on that day and told them i thought i was having a allergic reaction to plaquenil, they stood five feet away looked at me and said ok just keep taking the prednisone at 20 mgs for a few days. They didnt want to get involved due to the fact that i had psoriasis. But also failed to mention to me that it could be the prednisone causing this reaction also.
The next day i saw my dermatologist, she prescribed 1% hydrocorisone cream which helped with some of the dryness and pealing skin. The next day when i woke up i couldnt open my eyes, i was having shortness of breath ( im not sure if it was the panic from not being able to see) my throat felt as if i had strep throat,and the roof of my mouth felt as if i had burned it. My skin looked like a huge sunburn, the parts where i had psoriasis were very red,raw,and pealing excessively. I was admitted to the hospital for four hrs where they gave me a IV of benedryl and a steriod.My skin was so swollen they could just barely find a vein to put the IV in. After 50mg of benedry they realeased me and told me to keep taking 50mg every 4-6 hrs and they prescribed me 50mg of prednisone for 7 days. By the next day the swelling had gone down by 30% in my face, but i still looked like i had been in a fight, the pressure around my eyes was so much that i had to sleep sitting up. Of course i wasnt really able to sleep with the fear that if i closed them i wouldnt be able to open them again. They also leaking white stuff. My skin was pealing in very large sections. I was bathing in a luke warm bath with oil, which would help with the pealing of my skin but then when i came out i would be freezing cold. I would get hot flashes and then instantly cold 5 minutes later. I felt like i running a fever but my temperature was normal.
Two days later the swelling was gone in my face, but my legs, ankles and feet were abnormally swollen. My skin was still pealing and constantly itchy. My skin tone was all pink it was no longer red and blotchy, but after i would shower or bath my legs would have dark purple and blue spots on them that looked like bruises. I was unable to sleep for more then two hours straight, i would wake up feeling as if i was on fire. It took another six days for the swelling to go down fully in my legs, ankles and feet.
After taking 50mg of prednisone for 7 days I am taking 45mg for 7 days then decreasing by 1 pill every week. After taking 45 mg for 3 days my skin looks as if its a big rash, it feels grainy and tight. Its no longer pealing except for on my feet.
Im told i look as if i have a bad sunburn, my face is red and tight to the point where the skin around my eyes doesnt even stretch when i open them widely.The sides of my mouth keep cracking when i try to open it fully. I look as if i have really dry skin constantly, it is a fine dusty flakeness. I bathe in moisturizing bath oil but it doesnt even go past the first layer of skin it seems, and i moisturize with keri lotion 3 or 4 times a day but it doesnt seem to matter how much i do it 15 minutes later im just as dry.My skin is sensitive to light and feels like its on fire when exposed to any amount of sunlight. The skin around my armpits and breasts or anywhere that the skin has to strecth is red and sore. I still get hot flashes but most the time i am freezing cold. The skin on my hands is wrinkley and i have no sense of touch almost. My nails were so brittle they had to be cut all the way back.
I have numbing of the tongue, i cant even taste food anymore. I have dry mouth, and i feel as if im dehydrated constantly, i can drink bottle after bottle of water and still feel thirsty. I feel really hungry sometimes or not at all at others. Some days it feels like I IBS and then other days it can be fine. I am losing my hair. The roof of my mouth still feels as if ive burned it on something hot. My legs still look purple at times when im standing, and especially after being in the shower or bath. I am taking 1mg of both folic acid and zinc which my rheumatologist suggest to help slow the reproduction of my skin cells. I have blurred vision 90% of the time, and sometimes i see halos around letters. My mood swings are all over the place, some days i feel like just crawling into a ball and not moving, mostly because its too painful to move around and also because i hate how I look. And other days i just feel nothing at all. Im not exactly sure if when i was the 50mg of prednisone i was happy because of the drug or if i was happy in general because i realized what i could have lost. Not being able to see for 15 minutes really put things into perspective.
Im not sure how much worse it can get? I thought the swelling of my eyes was the worst part but from what i hear it can get much worse coming down off of prednisone. I was wondering if anyone else with psoriasis may have experienced any of these side effects while on prednisone? and roughly how long it took for them to go away.
-- By knelson_12_2001 | Reply | Private Message me
June 21th
2005
9:07 PM
I have been on prednisone since end of February/05. 50 mg for a few months then down eventually to 20, had to go back up to 30, symptoms all came back.muscle weakness , and since I already have that with Dermatomyositis, it was a little confusing if it was helping at all.
Weight gain , moderate, but definite swelling of the face. Acid reflux a problem, hair loss.
A little discouraging, but necessary. I am now at 15 mg and going down to go off. Plaquenil has been prescribed and I have been on that for 2 months.Not really seeing improvement but have to get off Prednisone.Far too scary! Hopefully I am able to stay off it! I have always been a relatively healthy woman and I want my life back!
-- By donnagillpurdy | Reply | Private Message me
October 25th
2004
8:01 AM
NEED ADVICE PLEASE! Has anyone had sore tendons, muscles, joints, etc. in hands caused or exacerbated by prednisone? If so, please email me at bgoodric@comcast.net. I'm a professional harpist, and my hands are my living. I was diagnosed with RA last spring, and I've been on pred for something like 6-7 months now, waiting for the Plaquenil to take effect. I was only at 10 mgs (now tapering, went down to 1 mg this morning), but I got bad moonface and fat belly, acne, feeling sweltering all the time, hair falling out, and sore gums. Eeew.
Recently my hands, wrists, and forearms are really hurting again, in muscles and tendons this time, as well as joints. (It's really impacting my playing; anyone who thinks that harp music can't sound ugly hasn't heard me playing in bad pain.) My hands aren't swollen much though, when before, with the untreated RA, they looked and felt like they'd each been stung by a whole beehive. Now, I was writing off all this new pain as caused by my getting off the prednisone TOO soon, before the Plaquenil works fully, and/or from serious overwork. (Amazing to have too many gigs, a lovely fluke that can't be turned down even if the timing is lousy.) But I've just found this website and seen a few people noting muscle cramps and such.
Could the hand problems be CAUSED or exacerbated by the prednisone, either by just having taken it at all or by tapering off it too quickly? Getting my hands working again immediately was the whole reason I was willing to get on the darn pred to begin with!
Let's see; I've also got muscle pains in shoulders, neck, lower legs, and feet, but all these could be due to music overwork too, or walking in bad shoes. I'm 43 and not terribly athletic, so the non-hand muscle stuff isn't all that shocking.
Another question, one that other people have mentioned earlier: How long after we stop the pred does it take for the dreaded moonface and belly (and acne) to go away? Is there any way to speed it up, along with exercise and sensible diet? (My sister's getting married in a month, so I've got the prospect of photos looming. I haven't gained weight, just had it redistributed, but I'm getting real chipmunk cheeks. Incidentally, approaching veganism seems to help me with the appetite. I've been trying to avoid dairy products to lessen the RA and when I manage that, after a few days I find that I'm no longer daydreaming about Haagen Dazs and Fettucini Alfredo. Don't know if that'd work for other people? I daydream about non-dairy dark chocolate instead, I'm afraid.)
I'd be grateful for any info and any advice! Good luck to you all out there. I knew prednisone could be problematic, but not as bad as what most of you have had to endure.
-- By bgoodric | Reply | Private Message me
PredniSONE (7) Plaquenil Sulfate (2) Fosamax (2) Methotrexate LPF Sodium (1) Remicade (1)
February 22th
2008
7:58 AM
I have been on Fosamax since 2003. In 2004 my left hip starting hurting so bad it would wake me up during the night. I had dislocated my left hip in 1994 so we put the pain down to complications from the accident. The x-rays were fine however so she sent me to a Rheumatologist to see if something else was going on. He told me I had Inflammatory Arthritis (even tho there were no markers in my blood) and put me on Plaquenil. After 6 months, the Plaquenil had done nothing but the Rheumy wanted me to stay on, and truthfully, I was afraid if I went off, the pain would become worse. Next came wrist pain so severe at times I couldn't lift a glass without wincing.To make a long story short, the joint pain has continued to migrate throughout my body. My thumb joints (where they join the palm) are so painful I can't undo jars or bottles, the small bones in my fingers ache all the time. I also get shooting pains in the long bones of my left leg and both arms. Back to the Rheumatologist last week. He said the Plaquenil was not working so he gave me an RX for Methotrexate 20 Mg once per week. This drug is one of the first-line chemo drugs for Cancer and it's effects on the body can be devastating. I have been crying since last Wednesday and had just decided yesterday to start taking this medication. I sat down at the computer to just test the drugs I am currently taking and one by one entered the drug name with "and joint pain". Plaquenil came up with only good things such as "less joint pain" etc. Mobicox also came up with good things. I entered Fosamax "and joint pain" and the top 15 hits were unbelievable. It was my problem in each and every article. I am dumbfounded. I have been seeking Dr.s help with my pain for 4 years, a GP, a Rheumatologist (2 actually) and an Orthopod, not one of these people ever mentioned a problem with Fosamax! What is going on. I am NOT going to be starting the Methotrexate and I feel I have been given dangerous medications over the past four years which I should not have been taking. I was a Personal Trainer and aerobics instructor for 12 years - now I can barely get through a yoga class without modifying the stretches because the pain is so severe.
Thank goodness for this site. I have made an appointment with my GP but I am stopping the Fosamax today (it was my day to take it). I pray I can regain some of the pain-free movement I used to have. In closing, I do have to say that I have regained some bone mass on Fosamax but...was it worth it? Was there another way I could have done this? Who knows. How long does it take for the pain to lessen after dropping Fosamax?
-- By deenen | Reply | (1) replies | Private Message me