steroids for how long?

bailey27
bailey27 Member Posts: 689
edited 12. Aug 2009, 09:19 in Living with Arthritis archive
Hi
Had a horrible beginning of last week and have been put on steroids. I am now feeling fab and do not want to stop taking them. My rheumy was thinking of putting a jab into the hip joint under x ray but them changed her mind.
I was wondering how long you can stay on these tablets for as I feel fab. This week my dose is lowered and again enxt week until I am off them, I am scared to come off them though.

Comments

  • debatat
    debatat Member Posts: 659
    edited 30. Nov -1, 00:00
    Hi, I can't remember what other meds you take. I take steroids all the time, I am kept on a maintenance dose to keep things under control. They have long term side effects though, so most consultants use them sparingly. Talk to your doctor, the fact they worked so well is an important diagnostic clue, it means it is inflammatory. I would think first before asking to be kept on them as they cause weight gain, moon face, osteoporosis, diabetes, and can cause emotional and mood problems. Having said all that I could not manage without my steroids!! Sometimes though a short course is enough to get things under control, my son does this for his asthma. Let us know how you get on.

    Deb x
  • elnafinn
    elnafinn Member Posts: 7,412
    edited 30. Nov -1, 00:00
    My friend is on steroids daily and has been for a long time. GP is in agreement because it is such a low dosage. She keeps very well on them but does have the problem with easy weight gain and always feels hungry so she has a constant battle with that side of it. The gp said to her when she questioned the weight gain..... would you prefer to be a little overweight and in good health or the other way around. She has chosen the former and she really is very active.

    Elna x
    The happiest people don't have the best of everything. They just make the best of everything.

    If you can lay down at night knowing in your heart that you made someone's day just a little bit better, you know you had a good day.
  • lesleygraham
    lesleygraham Member Posts: 91
    edited 30. Nov -1, 00:00
    Hi folks
    I have been on steroid tablets and many injections for over 5 years at various doses. As soon as I try to reduce them my RA starts to flare and I am really stiff and painful. Steroids are fantastic for reducing inflamation, however, as said by others, they have many side effects. I now have osteoporosis due to them and I have tried for years to get off them, but my arthur comes back with a vengence. I have put weight on in the past, and had a moon face, but that goes once you come off them.
    Take care
    Les
  • c4thyg
    c4thyg Member Posts: 542
    edited 30. Nov -1, 00:00
    You can stay on them long term if you are taking a low dose, however, you must make sure that you are regularly checked by the Dr and have blood tests done checking for things like your bone profile and your potassium levels. Also make sure that you carry a steroid card with you.
  • bailey27
    bailey27 Member Posts: 689
    edited 30. Nov -1, 00:00
    Hi

    I will see how I go when they are reduced on wednesday.
    I dont really mind the side effects if it means I have my life back. The weight gain I think I can manage because when I am feeling good I am able to exercise so that should keep it under control.

    (I am taking Celebrex twice a day and omeprazole and tramadol on a really bad day)

    Thanks, I'll see how it goes and keep my fingers crossed.
  • janie68
    janie68 Member Posts: 1,186
    edited 30. Nov -1, 00:00
    Hi,

    What dose are you on? I have been prescribed steroids today for a few weeks and the dr was a little unsure on what dose to put me on. I am trying 10mg per day until thursday and can increase to 15mg if 10mg doesnt work.

    I agree with you about side effects,if it gives me my life back then I'm all for it. Are you on anti-tnf? I am waiting for funding to come through for me.

    Hope you that you continue to be well and if the reduced dose makes things worse again, then go back to doc's.

    Janie :)
  • breane
    breane Member Posts: 392
    edited 30. Nov -1, 00:00
    Hi,I have been coming off steroids for the past 10 days. I started taking 8 x 5mg a day for two weeks and then I had to come off them gradually as my GP said they don't like you to be on them for long lengths of time but I do know some people stay on them for longer.While I was on them I was pain free but since coming off them I have noticed some slight pain has started to return to my hands.I am also on Hydroxychloroquine and can take Tramadol if needed.I have OA and RA and the pain was quite severe until I started on steroids.Whether I go back on them if the severe pain returns I don't know.I will ask the rheumy nurse when I next see her.Glad you are having good results with the steroids.Breane. :P
  • bailey27
    bailey27 Member Posts: 689
    edited 30. Nov -1, 00:00
    Hi
    I am on 15 mg a day then go down to 10mg on wednesday then next wednesday down to 5mg.

    I am not on anti tnf and to be honest my Rheumy has never mentioned anyhting like that.

    When I was first diagnosed they said I had sero negative...something or other. The last time I went she said she wasn't sure and to go back in 3 months... so basically I havent got a firm diagnosis yet. Everytime I go back to my GP they seem to be changing their minds on what is going on with me.

    If the problems return when I stop taking them I'll just have to nag my GP to keep me on them until I go back at the end of September. They were going to put a steoid jab straight into the hip joint but chaged their mind the last time I went.

    It does get quite frustrating when it appears nothing is being done.
  • bubbsie
    bubbsie Member Posts: 37
    edited 30. Nov -1, 00:00
    Hi,

    I am on 5mg was on 20mg but tapered me off and I am in agony so doc has let me go back up to 8mg as I am due to start Humira in 4 weeks.. I agree with the feel good factor I loved it when I was on 20 mg It was the first time on 2 years I had abit of normality in my life but unfortunatly when you lower the dose the old painful athur returns


    good luck and enjoy you painfree time whilst you have it. I felt so good I went to spain for a week had a fab time



    Bubbsie
  • scattered
    scattered Member Posts: 326
    edited 30. Nov -1, 00:00
    You should only be a steroids for short bursts, never for long periods of time unless your body has stopped producing cortisone.

    I've been on steroids for 3 years and the side-effects are not pleasant. I have a moon face, extreme weight gain regardless of the anount of exercise or dieting I do. The steroids have caused problems with my eyes, I have had to take potassium as my levels fell to almost none existant. I have to take calcium to offset the risk of osteoporosis.

    My RA is still not controlled enough for me to come off them. I started at 20mg and am now on 5mg. My consultant and I desperately want me off them. While they may make you feel great in the short term the long term side-effects are not worth it.
  • bailey27
    bailey27 Member Posts: 689
    edited 30. Nov -1, 00:00
    Thanks for that.
    I am hoping when I go back to see the Rheumy enxt month she'll just give me the injection into the joint instead of having to take the tablets.
  • janie68
    janie68 Member Posts: 1,186
    edited 30. Nov -1, 00:00
    Hi

    Just wanted to say that I have increased my dose to 15mg and then depending how I am Sunday, I can increase to 20mg. Just for the weeks waiting to start anti-tnf so side effects should be minimal.

    I looked at the huge leaflet that comes with the packet, it could frighten you to death!!

    Have a good day!

    Janie
  • tkachev
    tkachev Member Posts: 8,332
    edited 30. Nov -1, 00:00
    I am really glad that the steroids helped you Bailey.
    I had a steriod injection once and the effect was immediate and I walked down my stairs without pain for the first time in 5 months.
    Other medication has now replaced it and has the same effect and I have recently had a THR too.
    With R.A you tend to go through bad times(flare ups) and better times.Some medication works wonderfully and others have no effect at all!Some medication works for a while and then wears off and it is replaced or increased.As long as you are monitored they will find the medication for you .
    The worst thing is not having any help at all.I spent the first year with no medication because I thought I had a sports injury and was in terrible pain.
    Take care Tkachev
    Never be bullied into silence.
    Never allow yourself to be made a victim.
    Accept no ones definition of your life

    Define yourself........

    Harvey Fierstein
  • bailey27
    bailey27 Member Posts: 689
    edited 30. Nov -1, 00:00
    " I NEED THE 15mg!!!!!!!! "

    Since wednesday been on 10mg from 15mg and gradually I have got worse. I had to go down to 10 mg and then reduce again enxt week to 5mg. Today I woke up in agony nad can really feel the differance. I have taken an extra one today and will take 15mg tomorow and see the gP monday. I am really hoping he lets me continue to take the 15mg a day. Or at least until they decide to inject the joint instead (which they are tkaing their time over!)
  • janie68
    janie68 Member Posts: 1,186
    edited 30. Nov -1, 00:00
    You've done the right thing, the pain is too unbearable otherwise and I know that you would reduce if you could.

    Keep usposted as to how you get on on Monday

    Janie :)
  • bailey27
    bailey27 Member Posts: 689
    edited 30. Nov -1, 00:00
    Definately, nobody wants to take tablets but when it hurts my god it hurts!!
    I got so bad this morning I have the muscle spasms return which are unbearable. I got one this morning and thought that the muscle was getting so tight it was going to break my back. I sounds mad but I am not exaggerating, I had no control over it at all.
    I just hope when I see the GP on monday he lets me stay at 15mg. I feel a heck of a lot better this evening after taking the extra 5mg.
  • joyful164
    joyful164 Member Posts: 2,401
    edited 30. Nov -1, 00:00
    I have been on steroids since last Oct/Nov when I started getting PMR on top of the PA I already suffered from. I started on 15 mg and have now reduced to 2.5 mg. My gp, however, does not want me to come off them completetly and stay on the 2.5mg. There is a risk, he says, that if I come off them and the problem comes back with a bad flare up, I will have to got back on to the full 15 mg again. If I stay on the 2.5 then it just keeps the symptoms at bay.
    I do get a lot of weakness in my legs and arms and this still makes walking very painful.

    Good luck with the reducing. However good they may make you feel, it is not good to stay on them at the higher dose too long.

    joyful
  • janie68
    janie68 Member Posts: 1,186
    edited 30. Nov -1, 00:00
    I had to do it, I increased to 20mg today, felt so ill past couple of days and now feel much better for it.

    I will speak my dr tomorrow who is great, she treats me like an equal and listens too so hopefully she will be cool with it. she did say I could increase today.


    Maybe I can now have a decent afternoon/evening.

    Janie :)
  • bailey27
    bailey27 Member Posts: 689
    edited 30. Nov -1, 00:00
    Well I have upped the steroids since yesterday and feel fab today. Fingers crossed all goes well at the GP tomorow and he lets me stay on them! :?:
  • joyful164
    joyful164 Member Posts: 2,401
    edited 30. Nov -1, 00:00
    scattered wrote:
    You should only be a steroids for short bursts, never for long periods of time unless your body has stopped producing cortisone.

    I've been on steroids for 3 years and the side-effects are not pleasant. I have a moon face, extreme weight gain regardless of the anount of exercise or dieting I do. The steroids have caused problems with my eyes, I have had to take potassium as my levels fell to almost none existant. I have to take calcium to offset the risk of osteoporosis.

    My RA is still not controlled enough for me to come off them. I started at 20mg and am now on 5mg. My consultant and I desperately want me off them. While they may make you feel great in the short term the long term side-effects are not worth it.

    Hellow Scattered

    Have just read your post regarding steroids. I too wanted to come off them completely, but GP has told me I have to keep to 2.5 mg.
    My face has gone down a little and I am exercising as much as possible. The weight gain does make you feel depressed though and Ido feel for you.

    Another thing is that if you stay on a high dose too long, you can end up with Osteo arthritis if you don't take the Folic Acid and do not drink fizzy water and drinks. Apparently the soda in the drinks can affect your bones also.


    all the best

    joyful
  • bailey27
    bailey27 Member Posts: 689
    edited 30. Nov -1, 00:00
    Yaaaaaayy!!!!

    Got my 15mg back this morning. My regular GP was on holidays so was a bit worried. I came out of there with a weeks worth of 15mg which after every week I have to reduce by 1mg rather than 5mg at a time.

    Hopefully this will take me up until my next rheumy appointment.
    I feel fab and am looking forward to keeping on feeling fab.

    I am so excited, isnt it quite sad I get excited over a couple of pills.!!!!
  • tkachev
    tkachev Member Posts: 8,332
    edited 30. Nov -1, 00:00
    Reduced pain is well worth getting excited about! :D

    Hope things improve for you and let us know how you are getting on.

    Regards Tkachev
    Never be bullied into silence.
    Never allow yourself to be made a victim.
    Accept no ones definition of your life

    Define yourself........

    Harvey Fierstein
  • bailey27
    bailey27 Member Posts: 689
    edited 30. Nov -1, 00:00
    Oh what a wonderful morning, oh what beautiful day........ so far everything is going my way!!!!!!

    Feel fab, love these steroids. Woke up at 6.30am and have cleacned the house top to bottom already!!

    Might venture out in the garden later if the weather stays nice!!!
  • kickyloo
    kickyloo Member Posts: 66
    edited 30. Nov -1, 00:00
    I'm currently on 20mg daily and have found that every time we try to reduce it I am in agony. It does keep the pain managable but I hate the side effects. I've had weight gain, moon face, acne and increased facial hair - all in all does not make a women feel good about herself!! :lol:

    But even with these short term side effects, I still take it because nothing else controls the pain. However, I would prefer to find something else because the long term effects can be very serious - diabetes, high blood pressure, etc which is not another battle I want to deal with.
  • bailey27
    bailey27 Member Posts: 689
    edited 30. Nov -1, 00:00
    I am going back to rheumy end of next month so am hoping he'll give the steroids directly into the joint instead of having to take them orally.
    I havent really have any side effects from them yet. The pain has virtually gone since taking them and so I am able to do some exercise to keep the weight down which i wasnt able to do without them. I am ot sure how long this will last for so am going to enjoy the time I am on them at the moment. It's like a new lease of life.