Maintenance medications

I haven't posted for a year when I was first diagnosed with a flare up after 25 years of being in remission on no meds. Since then I've had 3 cyclo infusions and was on 60mg pred, I'm now down to 2mg pred and I'm on 1.5g of mycophenlate a day. I've just seen my rheumatologist and I have to stay on 2mg for 6 months and then if everything Ok go down to 1mg and then off the pred. I'll have to stay on mycophenlate for two years and then reduce dose and stay on that forever. I knew I would have to stay on the mycophenlate prob forever but it seems a long time to get off the pred one year! As anyone else taken this long to get off the pred, I've been on it one year so far. At least my moon face has now gone and I only put on a bit of weight about 5 kilos which I can't seem to get off. Do these maintenance meds sound correct, I know everyone is on different medication. I was hoping to get off all meds eventually but it doesn't look like that will happen. Apparently, its unusual to have a relapse after so long and he doesn't want to risk me having another. He said all inflammation had gone which I took to mean that I am in remission as I feel quite well and all symptoms have gone. He said the side effects of the meds outweigh the benefits, which I suppose is true I just hate to take all the medication. Also is anyone taking mycophenlate three times a day as most people seem to take it twice a day which would be easier.

Hi Donna,

The pred taper does seem a little slow, but the rule of thumb is a slow pred taper is better. I held at 3 mg for 7 months out of an abundance of caution to see how I would do on the minimum dose of methotrexate (15 mg/wk). I'm doing fine on the new mtx dose. I'm now tapering off pred at -0.5 mg/month.

I asked my rheumy about getting off mtx when I saw her last week. She said that her research showed that people who go off mtx have a 40% chance of a flare within 12 months. I'm not crazy about the side effects of mtx, but I don't want a flare either...

Ive been on 5mg of prednisalone for 10years and 150mg of azhthoprine they are going to try and reduce my azathioprine by 25 mg soon my name is bill im from barrow in furness cumbria I was diagnosed 10years ago

Apparently, the latest research states that there is less chance of a flare if we stay on the maintenance meds for at least three years and then some people have to stay on immunosuppresents at a reduced dose for life. I suppose my doctor is playing it safe. It would just be nice to have a date in future when I could be off all meds.

I haven't been on for a while. Partly because I was dead tired for the past several months. Last week they upped my pred to 10mg/day and it has helped a lot, but I worry about the weight gain. My wife seems to be tolerating my personality fluctuations quite well, though. I'm still on 20mg/wk mtx. I don't expect that to change any time soon.

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Originally Posted by Donnak06

Apparently, the latest research states that there is less chance of a flare if we stay on the maintenance meds for at least three years and then some people have to stay on immunosuppresents at a reduced dose for life. I suppose my doctor is playing it safe. It would just be nice to have a date in future when I could be off all meds.

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I went off high doses after the second year but staid permanently on bactrum. I was diagnosed in 2011 and am over a year without pred. I did a very dangerous thing and self tapered the last 35 mg but went incredibly slow. DO NOT DO THIS, complications are deadly. This process took over a year. Tapering is a very personal thing because everyone has different chemistry and reactions. It is much like trying to put a choke leash on the immune system. Sometimes we can go off leash altogether and the rest of the time there are too many squirrels....i mean stresses. In a point of tapering, usually between 10 and 5 mg there is a gap where the amount of pred is equaling what the body needs to maintain and produce. Your body's natural level can be a hard drop in tapering. The longer you are on high doses the slower this drop has to be. Learning to listen to your body helps with any complications after.

I found when going from 17.5mg to 15mg it was v hard felt so tired. Now when I reduce only by 1mg I still feel a bit tired and I get a sore throat and a cough for a couple of days. The doc said that its not withdrawal symptoms but I think it must be cos I always get this a week after I have reduced the steriods. I just wish I could get off them altogether but I suppose I am only on 2mg and my face has gone down, this happened when I got under 10mg.

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there are too many squirrels....i mean stresses. In a point of tapering, usually between 10 and 5 mg there is a gap where the amount of pred is equaling what the body needs to maintain and produce.

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You are exactly right, Rini and that's why we need to taper. The physiological requirement for cortisol is usually provided by 20mg/day of hydrocortisone, which would be equal to about 5mg pred. But the actual requirement, as you said, can vary. When you've been on pred for a long time, your adrenal gland basically shuts down and has to have time to wake up and start reproducing when pred is removed. If you quit suddenly or too quickly, then you risk an adrenal crisis.

I had an adrenal crisis when on a cruise in Tahiti several months ago and had to be air-evacted back to the main island hospital. The adrenal crisis was caused by different reasons, but the result was the same. I always carry injectable cortisone with me, otherwise, the outcome might have been different.
Adrenal crisis - Wikipedia, the free encyclopedia

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Originally Posted by vdub

You are exactly right, Rini and that's why we need to taper. The physiological requirement for cortisol is usually provided by 20mg/day of hydrocortisone, which would be equal to about 5mg pred. But the actual requirement, as you said, can vary. When you've been on pred for a long time, your adrenal gland basically shuts down and has to have time to wake up and start reproducing when pred is removed. If you quit suddenly or too quickly, then you risk an adrenal crisis.

I had an adrenal crisis when on a cruise in Tahiti several months ago and had to be air-evacted back to the main island hospital. The adrenal crisis was caused by different reasons, but the result was the same. I always carry injectable cortisone with me, otherwise, the outcome might have been different.
Adrenal crisis - Wikipedia, the free encyclopedia

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hard core! I am not positive of what happens in these instances other than it is bad for the hart to handle. can you explain this part?

I can tell you how it was for me..... I woke up about 0530 and was a bit nauseaous. I threw up a couple times (dry heaves), then got real weak. I don't recall if my heart was racing, but I don't think it was. I was beginning to lose consciousness, so I called the ship's 911. They came and got me and took me to the ship ER. I wasn't thinking too clearly, buy my wife was and she knew I always had injectable cortisol with me for this specific type emergency, so she went and got some. The doc gave me two doses and things began to pickup, however, I was really uncomfortable in bed and it was later determined my kidneys were shutting down and what was causing the discomfort. After about 12 hrs on the ship, the doc decided I needed to got to a real hospital despite the fact that I seemed to be coming around.

They put me on a tender and shipped me to an ambulance on shore, and then to small tiny shack of a clinic where we waited about 4 hours for a plane to arrive. Finally a small twin turbo prop arrived, they put me in a litter, tied me down, and away we went. It took about 45 minutes to get to tahiti. I was still pretty out of it, but able to walk. They gave me more solucortef and took blood tests. At this point, my doc in the US was now talking to me and calling the shots. That was great -- I totally trust her. The chemicals and hormones were all balanced out by the next day, so we made arrangement to fly back to the ship and we did. THen we finished our cruise with no further incidents. I remember extreme fatigue, barley concious, back hurting due to kidneys, and foggy thinking. I don't remember any raising heart.