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
I know what you mean about the side effects of prednisone. Since my RD put me on 20 mg, sleeping has become a nightmare - no pun intended.
At this point, the pain of RA seems to be a worse evil than feeling like I am going out of my mind.
PS Zyprexa (weight gainer)) or Seroquel are also good options to stop the hypomanic like behaviour. And "mania" just so you knows means actual commitable pyschosis. Hypomania is probably the term you are looking for.
I've seen a mental health doctor for 22 years. None are positive I am bipolar and if I am it would be very mild. What they are sure of is that I've had depression and anxiety. I did try Lithium once and it did nothing for me but than you for pointing out the Zyprexa and Seoquel. Those were the 2 meds I was on (at different times) in the past. I forgot about the weight of Zyprexa. These were what my mental health provider was referring to.
You are probably right about mania vs hypomania. I never had full blown mania. The only symptom I've ever had when it came to hypomania is some mind racing at bed time and maybe a bit of euphoria from zoloft which my doctor immediately said made me bipolar 3. It's pretty irrelevant now as my mental health is pretty good considered I have RA, live in chronic pain, and just gave up my career.
On the other hand when using prednisone I will literally be dead tired from losing sleep but will sort of just stand near my bed, half asleep, and not even make it in bed for some reason. Other times I'll open up every kitchen cabinet for no reason looking for god knows what. I'm basically saying I have some serious sleep issues whether they are hypomania or some other condition. I may give the seroquel a try if my psychiatrist approves. Thank You!
Thanks 2leftfeet as well!
I say all this because I'm sure there are members here who are fighting for treatment because they are seronegative or maybe they are seeking help with disability because they are too afraid to ask their rheumy. I know I was afraid with previous doctors and was told that I just did not have the best coping skills for pain and sickness and that I need to learn to live with my symptoms. Even after I told these doctors that my superintendent was pushing for me to take disability and that she could have literally forced me out they still couldn't care less. In fact I told 2 separate doctors that I was falling asleep at the wheel daily on Interstate 95 and they gave no response. I fired them all!
Anyway, thanks for your continued support!
I did some research, wondering what the difference between Bipolar II and III are. I didn't find out very much. But you are definitely not I, if you have not had severe mania.
I hope you find a way to get through the prednisone. I've been on it for almost 10 months straight, getting off of it only so my rheumatologist could see whether the latest biologic was working, without being masked by prednisone. And no, they have not been working!
So I am getting used to the fat belly and moon face, the sweating and the mind playing games. I was actually down to 0 mg last week and I felt so good mentally. But physically it was a no go.
I do get about the night eating. When my daughter lived at home, back between 2000-2005, I was taking a lot of prednisone. She would show me in the morning that I had been eating and I would have no memory of it. Even right now, I find I wander around and fall asleep in strange places in the night. I sure hope Orencia works, so I can get off the prednisone for at least a few years
Greg
What time of day do you normally take your prednisone? My doctor specifically told me to take it first thing in the morning and that I shouldn't take it ever later than 300pm or it could cause racing heart, restlessness etc.
Also if you are a smoker having nicotine and pred in the evening could certainly make you have those types of symptoms. I have been on a low dose of it for almost a year, I have weaned myself down to one 5mg tablet in the morning. It helps a little with the pain, if I take any more of it I lose all my energy.
My pm doc put me on celexa for my depression and I take 1or 2 trazadone at bedtime, I've been on this combo since June and it has worked wonders.
Now I just have to get through changing from humira to xeljanz. I've gotten no pain or swelling relief from humira though it helped a lot with my energy.
Hope that helps...oh one more thing, my doc also told me that u have to be careful with prednisone and your stomach, eat something with it and get on a good prescription acid reflux med. I take protonix and supplement with zantac on methotrexate night and the following day.
and yes you can refuse, I have. I also have my knees drained, regularly, flunked multiple joints tests in the office and had the rheumie wince herself - believe it or not you can STILL refuse the pred. as I like to say to my kids "dogs and cats will not be mating in the streets" in other words, my restrictions and limitations get worse but the only time I can NOT refuse is when my lungs are being restricted and not opening up and I am in the hospital on oxygen and can't breathe. for my RA i regularly refuse all types of pred: oral, IV push.
it's your choice - the pred is not life or death - it's quality of life and if it is going to severely decrease your mental health, then YOU get to choose.
depot
The doctor told to literally get up and take is super early in the morning. He has me on a reflux med. as well.
I'm sorry ti hear the Humira isn't working. I'm on Enbrel and thinking of switching as well. I feel I get minimal benefits from Enbrel that last only a couple days. Any reason for choosing Xeljanz? I mentioned the Trazodone in this thread last night to help with sleep. Maybe it's getting you through prednisone side effects?
Greg
The rheumy wants me on 5 mg which he claims shouldn't be problematic for me. I know I can refuse but I'm home now and even if can manage 3 weeks and it helps it would be worth it to me. If I have to get my mental health doctor to add something to balance things out and it works then I'll actually be ecstatic. My RA was always controlled better with prednisone added to my meds. Even when I was on 2.5 mgs a day it still helped some. I'll give it one more try.
Thanks!
Greg
I was on a high dose many years back for a different condition (Bells Palsy) and I had misread the instructions and over dosed myself. I remember that time very well and can relate to how it affects you.
I know people say Prednisone is bad and there is a love/hate thing going on with it. Since I don't have any real side effects (that I am aware of) I haven't been that concerned with it. A year or so ago I asked my Rheumatologist about weaning off it - he said at that point the benefit to me was greater than the risk of coming off it.
For your case this is where the need for some coordination between your different docs. I can understand your Rheumatologist's reasoning for insisting on the Prednisone for you right now. But it seems you need something else to counteract your side effects. While I hate the notion of taking a pill because you take a pill - in your case hopefully one of your docs came come up with a combination of meds to help ease the side effects.
I guess what I am saying is to try to find a way to take the Prednisone as it sounds like it would be very helpful to your condition right now.
What about if you did the 5mg prednisone he wants, but you do one day on, then one day off? Or 5mg one day, 1mg the next?
Or if you need two days between, then do that?
It would possibly be enough to help but then fool your body without the build up.
Just thinking aloud.
GAD is treated by so many choices. I take klonopin and was prescribed celexa at first. I couldn't get past the celexa weird feeling so I quit. I also took buspar and that actually worked. Plus it doesn't impact much else.
I stopped it and just take a betablocker and klonopin as needed. I have twitching (fasciculations in both legs diagnosed as benign) in both calves and often my eyes or back will twitch too. It's supposedly anxiety but I still am unconvinced. I'm seeing a vascular doctor next week to check my capillaries in legs and having blood work to include parathyroid, cortisol, adrenal function, ect done by my primary doc.
The klonopin helps me with the twitching greatly but I refuse to take more than .25mg a day.
It's earned a rep of good guy bad guy drug for a good reason.
I have the swinging moods more severe while weaning.
No fun. Wish I had more suggestions for you.
Wishing you the best of luck.
Sammy