My rheumatologist has recommended steroids. I am very hesitant to take them, as I recall having bad side effects in the past. I got REALLY cranky on them and was a b*tch to be around. I don't want to put my family and friends through that again, LOL. I also hear of so many who gain a good amount of weight on them. I have a huge fear of weight gain and am probably even a bit unreasonable/obsessed about it. Has anyone out there had good success with steroids? No whacky side effects? No weight gain? Thanks for any info. Love and gentle hugs, Juliah
Juliah,Juliahh,
I think it's all going to depend on the amount of time you're on them. I personally have only been on them for a few months at a time total. You start out at a higher dose, and then slowly reduce...it take a little while; but MAN what a difference they quickly make. Nothing gets me back on my feet like a round of predisone.
As for the moodiness I know exactly what you mean. That's the worse for me; not the mild weight gain. Ask your doctor if he can precribe a mild antidepressant during this time. That always helped me too...I wouldn't take them all the time; just when I thought I would ripe someones head off. I called them my "Nerve Pills"
If you're anything like me this will all be short term and the difference it makes is WELL WORTH IT!! Do a little extra walking...and be aware of what you're eating. I'll admit it increases your appitite (OK; who doesn't know I can't spell here?) but you can control it; especially in the short term.
Good Luck.
Juliahh, I have been on prednisone on and off for almost a year now. More on than off. The mood swings I have blamed on coping with the disease and diagnosis but maybe the prednisone has been a factor. I gained no more than ten pounds, probably less. It has been well worth it, considering the quick relief you get from the prednisone. I think the inactivity of the RA symptoms may make me gain weight more than the prednisone. I agree with Lovie. Give it a try. Short term it doesn't have any monumental effects and what a relief it is.
If you can take the prednisone for a short, as short and possible, time you should get by without negative sideaffects. Prednisone can make you feel like you did before RA, thats the positive side. You seem to know some of the negative aspects.
I am a classic case of what can happen to you when you have been taking larger doses of prednisone for an extended period. Huge weight gain, feeling of constantly being wired, moon face and buffalo hump. The name for this is Cushings Syndrome and I have had it 2 times. Even though I got off the prednisone, the weight gain 80# and the buffalo hump have stayed with me.
I debated whether to post this negative aspect of prednisone. I don't want to scare you or anyone else from taking it, it can be a miracle worker. The point I am trying to make is, always take the smallest dose for the shortest time possible. Barb
BTW, I did try to wean off pred a few times without success, and so I know that even the 6 mg is doing something. Barb~ I don't think any of us should be hesitant to share our experiences here...even when they aren't pretty. That's what this forum is all about; learning from each other. It's very important that we all know the good, bad and the ugly so that we can make informed choices about our treatment. Thank for being honest with us. As much as it hurts us to hear what a bad experience you've had you sharing your experience might save others from going through the same thing. Lovie P.S. I should also mention that one of the potential side effects of pred is osteoporosis. I had a bone density scan done recently, and it came back normal, so the pred doesn't seem to be having a bad effect so far. For extra protection, I try to chew a couple Viactiv (chocolate calcium chews) a day. You bring up a good point....I have been dignosed with osteopenia; which is kind of a pre-curser to osteoporosis; but I'm also going through early menopause so that could be causing the bone loss; who knows? Certainly not my doctors (Imagine that?!?!?). Calcium is not a bad idea for any of us. Pred did get rid of the pain and swelling in a hurry. I started the first of the year and finally got weaned off of it the end of March. I also had a dexa scan and was taking fosamax to try to prevent it from causeing osteoporosis. I was rather moody while on it and managed to gain about fifteen pounds. I have managed to lose half of it already. But it did make me feel better. So it was worth it. I am a prednisone junkie!!! I have come to realize this yesterday. I like to have freaked out when my doctor said he was going to prescribe me "prescription strength" Motrin and no more prednisone until I came back to see him!!!!!!! I was actually walking around the house saying "I need my prednisone to function, that is the only thing that makes it to where I can take care of my Andrew." "I NEED THE PREDNISONE!!!!" Yes, I know long term use is not good for you. I would be happy to get off of prednisone, if there was something else that would help my pain & stiffness until I get health insurance back at the end of July. I have already tried not taking my prednisone and tend to my 7 month old well, needless to say it did not go well. I was more grumpy and more whiney because I could not take care of my son and to top it off I was hurting and unable to move!! I will be going to the doctor in June; hubby is getting some money in from his pension plan from the previous job. So, Iam going to go see if the doc can help find me something else to help me with my pain and stiffness without prednisone and something that does not cost alot nothing over 0. We are getting money but not that much money...lol. He is using most of the money to pay our bills that we keep getting late charges on, because we had to wait for money. Jooniper, If the precription strength motrin is all he's giving you I'd advise to just get the genric bottle of Ibuprofen and take 4 at a time. This is so much cheaper!! You can get a huge bottle for less than ....and that precriptions going to be a lot more. I'll admit it's not going to help you like the predisone has; but you probable haven't been back for your labs in a while and that's why he won't give you any more of that; right? Are you stopping cold turkey? Your situation sounds quite simular to Barb's. Thank you for sharing....it's experience like yours that is so needed on our boards. Welcome aboard!! Lovie Hey Mike~ They gave you fosamax to prevent osteoporosis? Are you already showing bone loss? I have osteopenia and asked my doctor about fosamax because I have a Grandmother and Aunt that both take it for osteoporosis and he told me he would not precribe it until the disease was much more advanced. I was just curious as to your expereince with it. Lovie- Cold turkey, may as well be lol. Anyways when I got to the pharmacy I asked the cashier how much and she said .95 and I was thinking dang that is the same price as prednisone. Got up there to pay for it and realized it was prednisone, but only 18 10mg tablets. So I guess he decided to let me have them to tend to my son. I am only on 5mg and 10mg if something really swells bad. Do you have to be weened off of 5mg? Well, I asked the nurse when she called back if Motrin was going to cost more then the .95 that prednisone costed and she said she did not know. Anyways I explained to her that I was planning on coming back in the first few weeks of June to see him to try to get on something else, just that I need the prednisone until then so I could function enough to tend to my son. I had blood work done back in March. My question again do you have to be weened off of 5mg prednisone? Yeah. Seems like my doctor would have me cut one in half...or even skip to every other day? Hopefully someone here with more recent experience can be more helpful than that. It's been a while since I've taken in. But I do think so. I'm glad you got you that last 18 pills....use them sparingly. Jooniper, Yes, WEAN!! It's cruel and unusual punishment to stop even 5mg cold turkey. When I tried to wean off my 6mg, my RD had a whole schedule in place for how I was to go down (1 mg less for a few weeks, and then 1 mg less for the next few weeks). Like you, I gave up on weaning because I felt like I really didn't have the time to spend being in pain waiting for my body to adjust to lower levels of prednisone, especially given that I wasn't having any negative side effects. And it does seem like doctors can be awfully stingy about prednisone. I confessed to my doctor that I'd actually pop a few extra milligrams here and there if I wasn't feeling good or if I had a special occassion coming up and and wanted to really be pain-free. He nearly had a fit and told me a story about how he let a patient go because she refused to follow his dosing orders for prednisone. And then he ordered the Dexa-Scan to make sure I wasn't doing something horrible to my body. I guess he's had bad experiences with people using prednisone. Anyway, I've been better about sticking to only 6mg, except for a couple weeks ago, when I popped an extra 5mg for my wedding day! Willow - Well, you have to be pain free for your wedding!!! Who wants a grumpy bride?! Now other people's weddings who cares about pain free especially if you are single, ya'll be grouchy anyways because it is not you getting married...LOL Ween HUH? Well I will talk to him about it when I go back to him in June. Oh the 5mg - 10mg the doctor told me I could that. Just not 10mg all the time. Lovie - I will use them sparingly. I will try to only take 5mg/day. The doc gave me the fosamax as a precaution. I had only been on prednisone for three weeks at that point. I had the dexascan done a week after I started taking fosamax. It was mastly normal with a slight amount of loss in my spine. And he had me stop taking it once I was weaned off the prednisone. Thanks Mike~ I guess all these doctors have different ideas about treatments...I just though it was interesting that you were precribed fosamax when my doctor wouldn't even think of it for me and I've already got ostepenia. Not that I want to add another medication to my line up
Hope you're well. Lovie
This is the first time I have had people with which to share my prednisone story and fears And I am grateful for that. Many years ago when they didn't know much about prednisone they started me on 40 mg a day for almost 3 years! I was diagnosed with a rare muscle disease. And I had every side effect known to the drug! The worst side effects for me was the weight gain, buffalo hump and swollen face. I started at a size 7 and blew up to a 23 within a couple of months! It was lucky that I was so thin before because I still felt small unless I looked in the mirror or passed a window. People didn't recognize me. But, I learned a lot from that experience about importance of not making judgements about peoples weight, etc. And, I held my head high and continued to be very social. And I think I am a better person for it. I finally got off prednisone and took an experimental treatment that really kept me in remission for 10 years and I lost most of the weight. Down to a size 12 which is really fine for me. And I said I would never take prednisone again. But, In the last 10 years I have had to resort to it because it did help the pain (during a misdiagnosis of gout) that was really RA. And I found that my body does (even taking it short time) go back to the swelling and moon face but if I get off of it fast enough each time I do not have a large weight gain. Just a few pounds each time that put me up to a size 14. But if I don't take it I get to the point where I cannot walk so I feel forced to take it for relief! I am now taking methotrexate and hopefully that will carry me while I come off the prednisone again. I am down from 20mg to 12mg. And if this helps, I was told you will either feel depressed or a feeling of well-being! I have had the feeling of well-being and hopefully that will be the case with others. So hang in there...and hopefully you will only need it for a short time! Susan
PS - Jooniper, if you are
considering taking ibuprofen please make sure never to take it on an
empty stomach. Also ask your doctor to give you some prevacid or
something for the acidyness. Or get some pepcid. Ibuprofen tears up
your stomach if you dont take care of yourself. I was on it for almost
2years. And now my tummy is all goofy.
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