Sometimes I feel it's unfair to blame the doctors for getting people to reduce the dose along with whatever guidelines they follow which may prove too fast for some, as I have met several people who have, in fact, successfully managed to recover and get off steroids in 12 or 18 months. Then there are the rest of us!
I was lucky reducing from 40 mgs to 5, always finding that my routine blood test results before each reduction corresponded with how I felt - if the pain increased then so did the bloods and I would not reduce. I managed to reduce by 1mg a month in one go from 10 down to 5....and then the fun began! With increased and prolonged pain I was advised to increase back to 10 for 2 weeks, then 7.5 for 2 weeks, then alternate days of 7.5 and 5 for 2 weeks, then 5 for 10 weeks, the rheumy believing that as I had successfully managed to reach 5 previously then I would quickly be able to do so again and this turned out to be the case. But he then advised me to stay at 5 in spite of normal blood tests for yet another few months as that had been my stumbling block previously. I then successfully reduced to 4 following a similar method to Ragnar but even more slowly, doing 3 days at 5, 1 at 4.5, and repeat; then 2 days at 5 and 1 at 4.5 and repeat; then 5 and 4.5 on alternate days, finally reaching 4mgs where it was recommended to stay for a couple of months. I continued in this fashion until down to my present 1mg dose. Unfortunately, due to a long-standing problem with swollen neck glands following a throat infection before Christmas I have now been told not to try coming off the steroids in case they are helping in some small way. I'm going through a battery of tests at the moment and keeping fingers crossed.
As you are feeling so good at 7 and the blood tests are also good, then if it were me I would stick at 7 for another couple of weeks and then, as MrsE has suggested, try alternating the dose for another couple of weeks. Then if you have any increased pain or stiffness, give it a week or so for the body to adjust to the reduced dose and, hopefully, all will be well. On these lower doses especially there seems to be a need to reduce so slowly that the body doesn't notice the reduction and, of course, the adrenal glands need time to step up their normal cortisol production again having been suppressed by the higher doses. The steroid dose you are now on is equivalent to the amount of natural steroid normally produced by the adrenal glands so there is probably a fine balancing act going on! Hope the reduction goes smoothly.
MrsE and Celtic, thank you SO much for your advice and help! I guess it's a matter of letting the adrenal glands get back into gear as you drop the dosage, and no one can tell you how long that will take.
I'm going to print this page up.
Celtic I am sorry about your throat infection and swollen glands. I hope this will resolve itself soon.
Thanks again, I am so grateful to you.
Hi everyone, I enjoyed reading these posts since I am tapering Prednisone too.
I just started 15 mg/day today after having been on 17.5 mg/day for a month. I am supposed to do 15 mg for a month and then I see the rheumy. From 20 mg down to 17.5 mg, I already felt achy, but I think I adjusted to hit. It has been hard for me since I started out on such a high dose (60 mg). I know it is going to be much more difficult once I get below 10 mg and have to taper even more slowly (10%).
My CRP already returned to normal, but not my symptoms. So glad my rheumy goes by how I am feeling.
It is really difficult also to judge how I am doing day to day. I think it was MrsE who told me to look back a month, not a day. If I look back a month, I am doing much better.
freesia, I too worry about flaring up when I seem to be barely able to maintain any kind of life now. Yes, I am adjusting, but want to move forward, not backward.
Someone posted on another forum (I think the RA forum I visit) that Prednisone should not be blamed for increased appetite and weight gain. Jeepers, my appetite is affected and I have gained weight. Still trying to figure out how to get control of that. A friend told me recently that her husband, who has cancer and has had many treatments, is now on Prednisone and has a great appetite and is gaining his weight back. She is not sure why the doctor has him on Prednisone, but it is helping his overall well-being.
Thanks for listening.
Nanatjjj - whoever posted that about pred not affecting appetite must be one of the lucky ones it doesn't affect! Actually, both my daughter and I go off food when on steroids (bad thing in her case as she resembles a stick insect). Her daughter on the other hand can eat for Britain when she's on her high doses for asthma. Not only can it stimulate appetite, it also changes the way you metabolise carbohydrates - part of the diabetes problem with steroids. And it can cause fluid retention - and that also contributes to weight gain. One of the better ways to try and control the weight gain is to restrict carbohydrate intake to avoid the insulin spikes in response. Excess insulin leads to excess calories being stored as fat, especially around the abdomen. So, fewer carbs and don't snack on carbs between meals: the dieting concept of 6 or more small meals a day has been discredited as leading to too much insulin production and making it difficult to monitor calorie intake.
Yes, it was me who said to look back over a longer period to see if there is an improvement - the longer the better! It's like the stock market
Good to hear you are doing well though,
MrsE
2 days on 15 mg and I am really achy, esp. during the early morning hours before I get up. Seems like my OA wear and tear sites are worse too (i.e. right knee, left ankle). My shoulders hurt some and my hips are weak/achy as usual. But I think I need to try and maintain on this dose. Maybe it is the weather, which has been rainy. I am also trying to keep active, so may be overdoing it a bit. At least I hope that is the case and not the tapering, as I can control my activity better.
Trying fewer carbs and more protein too, but I seem to be hungry often. 2 of my siblings have started the Dukan diet and another sister is doing her own modified thing. I am still figuring out what to do. I dont want something drastic. I have enough problems now. But I do think less carbs helps even out the blood sugars, which I am sure are contributing to my almost constant hunger.
Nanatjjj - try alternating a day of 15mg and a day of 17.5mg for a week or so. A few people have also found that splitting the dose, 10mg in the morning and 5 mg later deals with the morning discomfort but that is a very personal thing. The weather can well have an effect - and keep the activity gentle whilst tapering. And when you feel hungry - try drinking some water or other non-sweetened drink. often you think you are hungry but are really thirsty and anyway the fluid helps fill you up. And when you have a snack, eat slowly and chew well, sit down and make it an occasion - don't just grab something in passing. Use a smaller plate to make your eyes think you had a bigger portion - and enjoy what you are having. That all makes a difference!
MrsE
Nantjjj,
I hope you can adjust to the 15 mg, but don't do what I did and force the taper and end up with a horrible flare. That said--the horrible flare required me to go up to a higher dose for a few days and taper down, and within 6 days I ended up at 7.5, lower than ever before, and I did okay with it!
Also, I have been down to 7 mg for almost 2 weeks now, and I started to feel so much better, I thought I was home free. Then this morning I noticed my legs feeling achy again. Darn!! However, we did have rain last night so maybe this is influencing the PMR. Others on the board have noticed a relationship between the weather and their PMR symptoms, too.
I have OA, too, Nana. I think it's mainly in my neck and my back, and I have a bulging disk in my spine. My rheumy reminded me that prednisolone can help arthritis symptoms, too, but they don't like to treat OA with prednisolone, so I am trying to be aware of which disease is causing the pain! I really agree with her on this.
The diet part of this disease is really tough. I know I'd be better off if I went on the anti-inflammatory diet or alkalinizing diet. I notice that if I feel more crippled in the morning and I don't eat something at noon, or before, if I am hungry, I feel sort of funny. The food actually seems to help me feel better--as if it helps the prednisone work better and the pmr starts to clear up. I don't know if this makes any sense.
Were you this hungry when you were on the very high dose of prednisolone? I agree, don't do any drastic dieting; eating less sugar is always a good thing for one's health. Fewer complex carbohydrates helps, too.
Also: do you drink coffee? Coffee can stimulate the appetite.
Hang in there and best of luck with all this. Keep us posted!
freesia
freesia2011-04-21 15:49:14As to Freesia's question "Do you drink coffee? Coffee can stimulate the appetite"
Coffee can also put stress on the adrenal glands - as the glands are already suppressed from the steroids and as you reduce will be trying to return to their pre-Pred state, then any such stress cannot be a good idea. I never drink coffee apart from my favourite cappucino when out for a meal......and then only ever decaffeinated.
Happy Easter weekend everyone!
Hi everyone, thanks for posting. I was up at 2 a.m. with pain and then every hour or so after that. Finally took another 1/2 of Tramadol at 5 a.m. and when I still had pain at 5:30 a.m. I gave up and got up. I seem to feel quite a bit better if I get up, but I hate to get up at 2 a.m.
MrsE, thanks for the suggestion about alternating days. I am going to call my rheumy. He wants to be aware of any changes I make. I already split the doses and the rheumy specifically tells me how he wants it split (i.e. the 15 mg is 7 1/2 in the a.m. and 7 1/2 with the evening meal.) I am trying to drink more water too.
As for the appetite, I have never had it bad like this. I am already obese, and have had good luck with Weight Watchers, the last time losing 60 lb. over a number of months. I had started WW again and had lost 8 lb, but gained that all back and more so once I was on the Prednisone for a few weeks. I am doing better though trying to drink more water and eat more protein to level out my blood sugar. So far the last 2 days have been better.
Fresia, I am worried about flaring, esp because we are leaving on a road trip to Minnesota next Weds. I was glad my reduction occurred a week before leaving so I can see if the taper is working or not. Our weather has been varied, rain yesterday, wind today. So I suppose that has some affect. I know I cannot take high doses of Prednisone for OA, but as I am tapering, the old OA damaged joints are acting up along with the general achyness from the PMR. I also noticed I have muscle weakness now too. For example, when I lift a butter knife to spread something, my hand shakes a little (never had that before).
Celtic, I do not drink much coffee. Usually 1/2 cup cappachino in the morning is all I have. Once or twice a week a might have a second (full) cup at lunchtime. Still I should limit that as it really isnt necessary and I do not crave it.
MrsE, I know you said from 10 mg and under that the taper should not be more than 10%, but I am wondering if (for me) even going from 17 1/2 to 15 mg is too much (since that is about 14%). I will see what my rheumy says.
Thanks everyone!
Well, I forgot for a moment that it is Good Friday, so the office closed at noon. So I think I am going to go with your suggestion, MrsE, and alternate the dose over the weekend and call them Monday. Thanks. Good Friday here in Italy is a perfectly normal work day - isn't that strange!
The big boy experts in the rheumatology textbooks seem to be in agreement that a drop should NEVER be more than 10% of your current dose but no-one else seems to take notice! However - my argument is that if you take it a bit slower in terms of the size of the steps at any one time, the chances are you will do it with less pain and discomfort generally. It often takes a couple of weeks to settle down but basically if pain starts and gets worse over the 2 weeks the drop was a bit ambitious, if pain starts and then gradually settles it was just your body getting used to the drop. So you stay on that successful dose for a week or so and try the next half or 1mg. So you spend 6 to 8 weeks or even a bit more dropping 2.5mg - so what, if at the end of the 8 weeks you have got there. Far worse to try to drop faster, 2.5mg in one go and it fails - sometimes that means going back up to more than the previous dose to get it under control. I said the other week - don't use the stairs, use the wheelchair ramp! Why make things difficult?
Hope your weekend is a good one!
Eileen
Thank you MrsE. I took 17 1/2 mg today and will try the 15 mg again tomorrow, 17 1/2 on Sunday and then will call the rheumy on Monday. After taking the 2 1/2 additional mg, I felt better. I was surprised to feel better pretty quickly after taking the additional mg. I am pretty pooped tonight from lack of sleep last night, so hopefully I will have a good night's rest and a better day tomorrow.
Hi Nanatjjj,
I hope you are doing better and not in so much pain.
It sounds like your rheumy is very pro-active about your treatment, and that is good. It helps to feel that support and interest from your doctor.
Weight Watchers is a wonderful program--at least as I remember it--so sensible!
I don't blame you for worrying about having a flare while on the road. I wonder if possibly the excitement of traveling, and seeing new sights and places, might actually help your pain level ? Just a thought. Perhaps it doesn't work that way. Traveling can be very tiring. I hope it will all work out for the best for you! It's good that you are preparing and anticipating what could happen.
I do hope the trip will be fun and you won't have PMR problems while away!
Take care,
freesia
Thanks freesia. I did not even try the 15 mg over the weekend. Just feeling too much on the edge. So I will try the rheumy tomorrow about maybe staying on the 17 1/2 while on the trip. Not sure I can tolerate trying a reduction while traveling.
Hope you all had a nice Easter. Hello Nantjjj
I think that's very sensible to consider staying on 17.5 to get you through the travelling period which although can be good for lifting one's morale, can also put stress on someone even without PMR so not good when trying to reduce especially when those adrenal glands (suppressed by the steroids) are not able to up their usual production of cortisol (natural steroid) to cope wth any additional stress! Many of us on the UK site always 'clear the decks' during the week or so we anticipate reducing.....we do nothing but the essentials to give the body time to adjust to taking away some of its artificial steroid. Good luck with the rheumy today and do let us know how you get on.
My Rheumy always tells me
not to try reducing while traveling because of the added stress. I know that when I'm sitting / driving in the car my thigh muscles (hamstrings) tighten up and I need to stop more often to stretch.
Hope you have a nice trip.
RickF2011-04-26 05:45:15
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