Steroid reduction feeling awful, do I just bear with it ??????

Hi

I'm being reduced from 15mg to 10mg and aza has gone up from 125mg to 175mg. I have a massive headache and am really off food. Shall I just bear with it? Will it get better? I desperately want to be off steroids but don't want o be doing damage.if its just a case of putting up with the pain for the mean time I can put up with it if there's a light at the end of the tunnel???

Answers on a postcard please :-) xxxxxx

23 Replies

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  • Sorry should of put after a week I'm then due to get down to 5mg then 4mg, of pred. Hope it makes sense xx

  • Sorry your feeling it I'm being reduced too at same time as yourself had real bad 12 months was on 40 mg reducing now by 5mg per week dropping to 20mg on monday not feeling too bad tho get real tired was hyper on 40 mg have been offered the aza not sure if I want to go on that one after reading up on it anyway keep going good luck

  • Yea im the same i reduce mine by 1mg every four weeks

  • Short answer, yes, i would, it does get better.

  • I am on 150 Aza and 10mg of pred.... every time I try to reduce the dose of pred..... I have a flare up! I've got down to 6mg.... but then back up to 15.... back to 10..... been like this for about 2 yrs now. I just can't get off the pred - which I would love!!! TBH my GP has always advised me to reduce by 1mg each fortnight - 5mg at once might the reason??? I know the pred is low already compared to others - but its as low as I can take at the moment. I have a lovely moon face :-(

  • I am just sick of being on it, being fat and having all the other side effects! I am determind to get off it!!!!

  • Know the feeling. Vile aren't they?!

  • Hi, I'm now off steroids after 6.5 years. According to my lupus books, reducing steroids imitates a flare for around 10-14 days, so I reduced every 14 days to get them down to 2.5 mg and then I just stopped but go as low as you can as even 1mg is supposed to help. I stopped the azathyoprine too as I've decided to go med free - feel so much better, doing alot more, though aches and pains more acute, taking each day at a time. Your body produces around 7.5mgs of steroids naturally but the fear is that if you've been taking steroids for too long that your adrenal gland might have stopped producing as much or at all as it's job was being done by the artificial steroids, so some people struggle to reduce at that point. Even if you go down by 0.5mg every 2 weeks or longer, its ok, you're going in the right direction but you do have to bare with it. My face looks thinner and I've dropped 7lbs without really trying, even my steroid hump at the back of my neck feels reduced but i could really feel it leaving my shoulders. Hope this helps a little :-):-)

  • I'm down to 1mg now. it was REALLY hard making the big drops at the beginning - I felt alternatively monstrous and suicidal. See your GP - you can go slower, but do stick with it.

    Good Luck,

  • tapering down is very hard. The best thing is a very slow taper. sometimes if you cant cope you can ring your doc and he can just taper a different dose. 5mg is quite a lot to go down some of my friends go 1 mg at a time per week to reduce the symptoms. It is a good thing they are raising yoru imuran as they are reducing the steroids. Its fine to take pain killers for the symptoms but i was suffereing horrificly when i got to about 15mg . Sometimes my old Rheumy used to say if its too hard alternate daily the reduced dose then the normal dose just for a few days then go down . The slower the better. Your adrenals seem to cope better that way. Do you have a pill cutter ? ask yoru doc if you can cut the 5mg pred so instead of 15 down to 10 it will be12.5 i never dropped that much in one time and that is heavy going. It still hurts but if you can minimise it your more likely to stick with it. I thought a pill cutter was such a waste of money at the beginning of my diagnosis 4 years ago and turned out ot be a really valuable investment . I hope this makes some sense. I always went down a bit and stuck at that dose for a month then whent down the next one so it was a really long time going down 2.5mg per time it does balance out , but if its too much just ring yoru doctor and get his permission to help you adjust the dose. Good luck oh and remember to stay hydrated it willhelp with the headache etc .

  • My steriods go down 1mg every four weeks and ive to go no lower till i see doctor again lowering them by 1mg is enough not too much at a time

  • Hiya. I too am trying to heat off the steroids. I reduced from 15mg to 10mg in Oct. I can honestly say I thought I was going to die. However after 10 days I was fine. I had the shakes, a headache, I ached, bullets game back. But I did it. 4 weeks ago I attempted another reduction. 10 to 5mg, buy staggered. So 2 weeks at 10 10 5 .. followed by 2 weeks of 10 5 5. About 10 data into the the 10 10 5 I felt awful. I had the worst ulcers,cwould not get put of bed, I was so confused, I had a grey tiage about.me, hands were swollen, so we're my knees. So back to .gp I went. It was decided the pred was holding me in a non flare state not the aza. So I increased pared back to 10 for a week. The aza is going to be increased, but not sure to what dose. Maybe in 25mg doses till I reach 240mg. The pred has made.me put on so.Mich weight. I weigh 80kg. The plan is to reduce steroids by 1mg per week, I am on 9mg at the mo. Then as I lose weight reduce the aza so Ireach an equilibrium. All I know is I do not want to go back to how I felt before I was on meds. I am preparedfor th fact I may remain on a low dose asteroid along with the aza. I have bought a bikini for my hols and intend to wear it, so diet starts monday and swimming Tuesday. Good luck with it all. I am going through the reduction with u so f el free to PM me. Ps excuse the spelling mistakes I am on my phone ;) x

  • Hi, it is imperative that you do this slowlyasmentioned in earlier posts. I think that t is the adrenal gland that needs to be nurtured back to working order! Contrary to most opinions and experience though, I lose weight when on steroids .... Anyone else find that? I I like the way steroids make me feel, I have more energy, my body doesn't hurt as much but I am constantly trying to reduce as I have now been on methotrexate for 8 months

    M

  • Yes, steroids make me lose weight too. I am already very slim.

    Fortunately I got off the steroids 2 years ago,am so happy. Had increased pains for several months but then it went away.

  • Hi Chablis, my experience with the steroids is similar to yours so far. I recently started the induction phase of my treatment for lupus nephritis 5 weeks ago on a high dosage 60mg which has been tapered through the weeks to 30mg currently. ...i am surprisingly loosing weight contrary to what i heard about pred. I eat quite a lot but as thin as a rake(went from 12 to an 8). The other side effects are awful though??.....but each week seem to be better than the last with the reduction.....

    Looking forward to when I hopefully can exist without popping pills...

  • Hi I have slowly reduced my steriods over the last year and have now been off them completely since 22 Jan, and yes, the first couple of weeks, I had ulcers in the mouth and sore red spot in my nose (lovely!!) skins problems and joint pains and swelling, but it has got better. As for moods I am always fed up and touchy, that hasn't got better, but will it?! i just think that's the way i am, a moody bint ha ha! Anyway, Stacey persevere with it, be positive it will get better and good luck :-)

  • i have been on high dose sted's for 2 yrs. i have been reducing them slowly over the past couple of months. I am now on 5mg every other day and 2.5mg every other day. i am to do this for a further 2 months and then reduce to 2.5mg per day. Yes the side affects of reducing are not pleasant - but after a week or so I don't notice any difference. Sted's are very good at what they do - they are life saving, but the long term side affects of these drugs are a main concern of mine. Therefore i do feel that this is a important to reduce slowly! if you have any concerns speak to your Rhemu - but weaning of sted's your heading in the right direction! Lulabelle x

  • I am so grateful for this site and the fact that I am not going through this reduction on my own I was on 40 went down to 30 then down to 20 very ill back up to 30 now trying 25 but just had a bad flare lost9lbs the first day (that's the up side ) was ready to ask to go back up but reading all your comments I will stick with it. Seeing doc before I go to 20 so maybe I will suggest 22.5 as a more gradual reduction Thank you all I was feeling really down thinking I would be on these forever LIGHT AT THE END OF THE TUNNEL Still got the moon face but my friends are so upbeat and at 60odd they tell me I have no wrinkles like them ha ha yes we have to be positive Love you all

  • Agree with you there Voutton! Even by taking 5mg everyday, I feel like crap, backache, sore shoulders, more bloody spots! Think our body is wondering what the hell is going on.

    As for the moody bint Twilo76 hahaha, I thought slowly coming of the meds I wouldn't be irritable and highly strung, cant blame the meds anymore lol

    Well congratulations for being steriod free yay! That what I really hope to achieve.

    Stacey2310 I think the best thing is go down 1mg at a time then it isn't such a shock to your system.... Good Luck Everyone! xXx

  • I've previously had similiar experiences (mimic flare & fibromyalgia. My agony got better after a couple of days. It was when I've reduced it with 5mg at a time between 30 and 15mg (originally started with 40mg Pred a day).Since I've started to reduce it slower, I've not had any problems again. I quote from The Lupus Book 4th ed. (Daniel J Wallace, p.222): "Unless a person has been on steroids for less than a month, the drugs should be removed slowly....The ideal way for a doctor to taper steroids if a patient has been on the drug for at least a month is to decrease the dose by 10 percent a week until adrenal replacement levels are reached (7.5mg of prednisone daily). ....When adrenal reaplcement levels are reached, the doctor may wish to taper more slowly (e.g. 10 percent reductions every few weeks or reduced doses of 5 percent every week or 10 days)." I am now on 3mg, and from 7mg have been coming to this point at reductions of half mg's at a time. I hope this is helpful. If however you are experiencing flare like "withdrawal" symptoms, it can take up to 10-15 days to settle according to the book.

  • And also, good luck!!! I am sorry you have to go through this x

  • Hi Folks - it has really helped me, reading all of your comments. I started off about 3 months ago on 30mg Prednisolone and the effect was astonishing - no massive flares since then, even though - like you say - the "side effects" can be uncomfortable, and I'm having to find larger clothes on Ebay! For me - it is the cold/wet sweats in the evenings - worse than menopausal flushes, and my pudding face looks permanently embarrassed......

    I saw a different Rheumatologist this week (sometimes prayers ARE answered!) and she was really caring and thorough. I'm being investigated for severe heacaches which lay me out for 2-3 hours sometimes. MRI showed no abnormalities, so they think it may be the Plaquinel - which I've been taking for about 2 years after I had an allergic reaction to Methotextrate. (It does work for lots of people, but put me in hnospital!) She has suggested I cease taking Plaquinel for 2 weeks to see if that is the cause of the headaches - the steroid should "cover" the job of the Plaq meanwhile. If no change, then to resume taking them, or try another immuno drug.

    She was also concerned about the level of steroid, and was surprised that the GP /other Consultant had not also prescribed Adcal and Alandronic acid, which protects the bones for people taking steroids - so I have to ask my GP to do that, as letters from the hospital are taking 6 weeks to be processed (!!!)

    She's written out a schedule of gradually reducing dose - and I'll use the pill cutters as Britchick suggests - hoping that this will minimise the "weaning off" effects.

    Good luck everyone !

  • Hi my steriods are also being reduced and my azathioprine went up from 125mg to 200mg doctor had to reduce aza back down as i was getting bad headaches also its def your aza doing it although reduction in steriods will make you tired and yuk as well

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