Rheumatoid Arthritis Support Group
Rheumatoid arthritis is a chronic, inflammatory, multisystem, autoimmune disorder. It is a disabling and painful condition which can lead to substantial loss of mobility due to pain and joint destruction. The disease is also systemic in that it often also affects many extra-articular tissues throughout the body including the skin, blood vessels, heart, lungs, and...
Went to the rheumy today and my blood work come back showing I was very anemic, to the point where he suspects internal bleeding in my stomach from long term NSAID use. He also drained 8 tubes of fluid from my right knee alone. In fact my legs are unusually swollen and probably filled with fluid from my knee to my feet. Taking an anti- inflammatory (NSAID) was not doing the job and he wants me off them now as he runs more test to find the cause of the anemia. He is also concerned of all this swelling and fluid, had to drain a bunch last visit, and said this is one time where prednisone use is warranted. I have to agree with him but have had side effects from long term prednisone use in the past. I would sleep walk, have insomnia, feel manic, etc...... Those side effects took 3 months to appear when I first started using prednisone but now if I try prednisone again the side effects take 5-7 days to appear. I find that odd and have no explanation for that. If anyone has an explanation I'd love to hear about it.
Nevertheless my back is against the wall and I have to try the prednisone. I expressed my concerns but he doesn't feel that 5 mg prednisone will make me manic. I love the doctor and trust him but only I know how a medication will make me feel and I usually hate the drug after about a week.
Does anyone have any suggestions to combat or reduce these side effects which basically revolve around sleep problems? Even the manic feelings seem to only appear when I try and lay down and my mind is racing a mile a minute. Also, klonopin won't work for this much mania and insomnia and neither will milder mood stabilizers like Depakote. I've already tried those. My shrink claims that there are medical solutions for people who need prednisone and can't deal with these type of side effects. I see him next week and I don't know if he'll do this nor am I sure I want to but there are a class of drugs called major tranquilizers or anti-pyschotics which can be given in low doses to the average person who may have racing thoughts or be used to treat bipolar patients as well. Of course these drugs are powerful enough to slow down a schizophrenic if taken in high doses. I could request the lowest dose. I tried them for a short time a few years ago but never needed them long term. They also can make you very tired the next day though I can sleep until noon now that I'm home full time and I imagine the prednisone will counteract some of the effects from these major tranquilizers.
Does anyone have a better idea? I have to give this a try. I am on MTX and Enbrel and we will be considering the biologic change at my next visit. This swelling is not only painful but makes my ability to walk even a short distance very fatiguing in my legs. My other thought was to do prednisone 5 days on and 5 days off but that is not how it is being prescribed and I don't know if that will help reduce my swelling or if it may have negative effects on my system.
Please help if you can. I know I should give this a shot but I relish my sleep and I don't want to find myself sitting in my car in the middle of the night with my keys in my hand like I did last winter when I was on prednisone long term.
Greg
Nevertheless my back is against the wall and I have to try the prednisone. I expressed my concerns but he doesn't feel that 5 mg prednisone will make me manic. I love the doctor and trust him but only I know how a medication will make me feel and I usually hate the drug after about a week.
Does anyone have any suggestions to combat or reduce these side effects which basically revolve around sleep problems? Even the manic feelings seem to only appear when I try and lay down and my mind is racing a mile a minute. Also, klonopin won't work for this much mania and insomnia and neither will milder mood stabilizers like Depakote. I've already tried those. My shrink claims that there are medical solutions for people who need prednisone and can't deal with these type of side effects. I see him next week and I don't know if he'll do this nor am I sure I want to but there are a class of drugs called major tranquilizers or anti-pyschotics which can be given in low doses to the average person who may have racing thoughts or be used to treat bipolar patients as well. Of course these drugs are powerful enough to slow down a schizophrenic if taken in high doses. I could request the lowest dose. I tried them for a short time a few years ago but never needed them long term. They also can make you very tired the next day though I can sleep until noon now that I'm home full time and I imagine the prednisone will counteract some of the effects from these major tranquilizers.
Does anyone have a better idea? I have to give this a try. I am on MTX and Enbrel and we will be considering the biologic change at my next visit. This swelling is not only painful but makes my ability to walk even a short distance very fatiguing in my legs. My other thought was to do prednisone 5 days on and 5 days off but that is not how it is being prescribed and I don't know if that will help reduce my swelling or if it may have negative effects on my system.
Please help if you can. I know I should give this a shot but I relish my sleep and I don't want to find myself sitting in my car in the middle of the night with my keys in my hand like I did last winter when I was on prednisone long term.
Greg
My rheumy put me on trazadone like you mentioned of 50mg just so I could get thru the nights. I was going crazy with 24 hr pain and wakefulness. The trazadone was so helpful in getting my mind to stop long enough to sleep some right thru the pain.
I don't know but maybe that would help you too just to sleep some thru the terrible prednisone madness. I don't know what I would've done without it.
With the swelling, I assume they ruled out and cardiac problem?
Maybe now that you're not working you will be able to better tolerate the prednisone. Have your legs/knees gotten worse since you stopped working? If so, could it be because you are spending more time sitting and less time walking around? Maybe try going out to walk around the block a few times a day and see if that helps move any of that fluid out.
I think that's exactly what I'm going to try next. Thanks!
Maybe I won't even need anything potent to help sleep that way either. I know that my RA was much more under control on a low prednisone dose and obviously that is what I seek.
My doctor wants me to use prednisone sparingly, so I've got 1mg pills. I can use up to 3 a day and be within his prescribing dosage. I can also choose to not take any when I don't need them. For me, it's a balance of pain, sleep, and glucose level that I'm working on.
Like patients doctors are different.
Mine is trusting me to use my body & judgement to make it as easy as possible. There are various methods as it's evident others struggle with this med. let's hope your doctor has a suggestion like mentioned here that you can at least try.
No harm in asking.
Good luck, Sammy
i think that there are other maladies (like not having a thyroid or high blood pressure meds or cardiac or oxygen (gee let's shut it off, no right?) when it's life or death if you muck with the suggested med routine.
I just don't feel this way about RA other than you might lose your job, your house, your marriage, or your limited mobility. I am not being cavalier, from my casual observation of this list folks talk back about there adverse reactions more than any other list I have seen. these seem to be intolerances sometimes (rather than allergies) or allergies, or just I don't want to, including myself on this list of are you kidding me? no.
other than that i find the folks on here to be very non "cause the doctor said"
in fact we are probably the least paternalist list i have ever seen.
if you have to take all balls into the air into consideration then it's up to you as the customer with the doctor.
depot
Perhaps there is an explanation as to why these meds are dispensed with less "instruction" or "dertemination" then others.
For example I was determined to give MTX a chance but I was not willing to feel worse 4 days out of the week.
Let's face it like controlled medications it's up to the patient to take as prescribed when it comes to a med like Prednisone.
To many patients do not realize all the pit falls of this drug.
Have to admit if my life was different perhaps I'd try a wee bit harder to pass on it. As you pointed out for some there's just to much at risk.
It's a fool that messes with any addictive meds. I'm sorry if that offends but doctors put their trust in that patient to take as prescribed for a reason. Now we know those types of meds you cannot play take at your own discretion.
RA meds appear to come with a catch for many. Darned if you do & darned if you don't. Always feel exceptionally bad for those who get relief from a med & side effects cause them to discontinue. Like a cruel joke.
As for the Prednisone you've got nothing to loose by asking.
Had I not have expressed my difficulties with determination my doc would not have made a different suggestion.
You did provide food for thought Depot.
IMO these meds are like no other. In more then one way.
Sammy