reducing steroids

Hi, I am currently trying to resuce steroids by 1 mg per week with the aim of reaching a maint. dose of 5mg. I was also prescribed azathioprine again ( had tried before xmas but made me very sick). Anyway at last hospital appt was atold to try and perservere with a low dose and move up when I felt able. Cannot even tolerate 25mg without violent sickness and stomach pains, so have stopped.

My last lot of bloods showed that my WCC was slightly raised and mt ESR had gone up from 2 to 35 in one week, but CRP markers were fine. Slightly confused and spoke to the nurse who suggested that mayby my body does not like reducing the steroids and not to reduce until I have some more bloods done in 2 weeks. Does anyone know what a raised ESR, but normal CRP could mean. Never been this high before?

Thanks xx

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  • Good morning I know exactly how you feel. I have been steroids for over 30 years & I always feel awful when I decrease. If I have to increase its a nightmare trying to get back down. The lowest I can get is 7.5 but at the moment I'm on 10mg . I just can't get any lower at the moment I've tried but feel awful. As for the ESR & CRP they are inflammatory markers. When they are raised they can tell if there is inflammation in the body which then suggests something is going on. It goes up too if you have infection somewhere or the lupus could be active.strange how One is up & other down. Hope you get some answers soon

    All the best to you

    Hayley

  • Hi there

    It's fairly normal in SLE to have a raised ESR and normal CRP. That's something that would alert a doctor to lupus.

    I find when I reduce steroids that I feel awful for a few days to a week and then feel ok again.

    However if your ESR is going up you must listen to your nurse and take their advice. x

  • Thanks for replying.

    I have stayed on the same dose for this week and have been advised not to drop until I have bloods done at the hospital. Curently on 13mg, lowest I have been on since last June!!

  • That's great! It's not easy to get off steroids so don't beat yourself up. It took me 19 months to taper off them. The Rheumatologists said they thought I might have to stay on a low dose but I managed to get off them.

    But it takes time and a few ups and downs! X

  • Thanks, this has been helpful. I have been coming down from 30mg and am now on 20mg this was carried out at a rate of 1mg per month for 3 month and then 1/2 for the remainder. My target is a maintenance dose as my adrenals have suffered massively. The time it took you is encouraging for me so thanks again X.

  • I too am now off steroids and have been for nearly 3 months. It took 16 months but was worth it. They were hard on my tummy so that is now better. No changes to symptoms or any other major changes so keeping my fingers crossed.

  • Raised ESR and low CRP is normal in lupus. The ESR is an inflammation marker and usually indicates a flare up of lupus. If the CRP is also high these usually indicates an infection rather than a lupus flare up.

    Regarding the Azathioprine, try taking it in the evening with a heavy meal; like rice or smashed potatoes. I find that if I take it late with a heavy meal I feel relatively few stomach issues, but when I first started it I took it after a light meal and suffered terribly, vomiting nausea and bad bad diarrhoea. Also what worked for me eventually was increasing the azathioprine very slowly; e.g by 2g every month or even longer. This will mean that it will take you longer to reduce the steroids but it will be worth it. I'd been on steroids every day for 22 years and finally at the age of 38 am I finally able to be at my current dose of 6mg (only due to the azathioprine). So please try with it, listen to your Dr and nurse, I know it can be really difficult starting the azathioprine but it will be worth it in the end.

  • Thanks for this, I used to take the azathioprine after my main eveing meal and sometime even with a glass of milk or a bowl of rice pudding. Once when I was being sick there were traces of blood in it. I also suffer with a hiatus hernis and in a morning used to be in aginy from retching and being sick all night.

  • Hi Typerfick

    I find it very hard to reduce the steroids , i 'm currently stuck on 12 mg daily as not been well. It's great what you've achieved and something you might want to ask the nurse about is a mg a week is very fast to withdraw. I've been advised to do it monthly as I even struggled fortnightly!. It maybe why your body is reacting!. Good luck for your blood results. X

  • I'm reducing my steroids by 1mg per MONTH,currently on 10mg daily,until I reach 5mg,any lower and I feel terrible.

  • There is obviously no hard and fast rule for reducing rates. I am coming down from 25mgs. Reducing 2 1/2 every two weeks until I get to 10 mgs and then 1 mg every 3 weeks. It feels fast as the adjustment period is quite a few days. On 15mgs now for the second week so hoping to feel better this week!

  • I struggled for years to reduce steroids & everytime got to 10mg had a flare. But then my amazing consultant told me a way to reduce that has worked really well for me - when I was stable at 10mg I took 10mg for 1 month, then took 10'mg/9mg on alertnate days the next month. Providing I saw so no obvious impact I then went to 9mg for 1 month followed by 9mg/8mg the next & so on. If I ever saw any signs of trouble I just stayed with that dose for another month - right until I got where I am today which is 1mg every other day & I'm back to work full-time! Might not work for everyone but give it a try when you are stable/ready. Good luck x

  • Thanks for this - it really opens my eyes at how slowly steroids are reduced. Seems like asuch a low dose what I am on, but notice how much my body retaliates at dropiing 1mg in a week.

    Take care.

    xxx

  • Good for you Lynnyj,

    I got AVN as the result of being given steroids for just a short period and had to have 2 hip replacements as a result 20 years after being given steroids.

  • Without looking it up, what is AVN please?

  • AVN is Avascular Necrosis. It is caused by blood not circulating around the hip bones (as in my case). The bone then begins to crumble and die resulting in it needing to be replaced and people suffering agonising pain through this debilitating illness. It can also occur in other limbs too as many young people get it and surgeons are very reluctant to replace limbs too soon. Many people are unaware of AVN and neither are G.Ps. unfortunately - thus they don't warn people or test them before handing out steroids. I'm trying to get the Government to do something about this.

  • I would add that the best way of discovering if you have AVN is to have an MRI scan.

  • Every so often, some well meaning doctor, rheumy, internist, university connected or not suggests I taper the steroids. The most recent doctor set off a year of pure hell as my adrenal glands failed resulting in low salt. This in turn caused seizures. It's a fine line as the steroids do cause necrosis of the bone, osteoporosis. I am all in favor of getting to the lowest dose possible but it seems difficult for doctors to determine what's possible. Just a fyi, I've been told that steroids are part of the cataract picture as well as osteoporosis and necrosis of the bone.

  • Cheers for this fighting, having a bone scan next week and have already been put on Adcal twice a day. Heres hoping for no nasty surprises from the scan.

    Take care.

    xx

  • Please ask for an MRI scan as it's the best way of determining if you have AVN due to steroids.

  • You are quite right as as well as having 2 hip replacements because of AVN caused by steroids, I also had both my cataracts removed.

  • Thanks for posting this as I have been asking my renal consultant to reduce my steroids for some time, after 9 years I've had enough of them. I'm on a dose of 5mg daily, which seeing your replies is VERY low compared to others here. I have to do my bloods first including CRPs which are always raised in me. Then I have to slowly increase my dose of Mycophenalate from 250mg twice a day to three times a day then 500mg twice daily. I will need bloods every 2 weeks to check my CRPs then increase. Once things are ok I can then very slowly reduce ny steroids. I run a risk of rejection of my kidney transplant in doing this which obviously I don't want having hit 9 years with a great kidney. I also take Tacrolimus for an immune suppressant. The steroids I take have made my skin thin, my blood vessels on my arms can burst, my moods affected and I feel massively overweight with a discusting fat lump on my back below neck because of steroids. I HATE steroids with a passion. I just want my old body back and hope that very low steroids will mean no more weight gain etc. Good luck. Keep us posted on your progress. It will take a long time.

  • Thanks for this MandaM. Can I ask what your experiences are like on Mycophenalate ( Is this the same as MMF?) This was another med that was mentioned at my last clinic appointment. Just very wary of trying anything new after all the sickness, stomach pains with the azathioprine.

    take care. xx

  • MandaM, i too hate Steroids with a passion but they have saved my life a few times so for that im great full. But the lasting awful side affects worry me.

    Take care.❤️

  • Thanks for all your replies. I am currently on 13mg of steroids which I mentioned earlier is the lowest dose I have been on for a while. Earlier this year I was on 20mg and I loved the person that I was, had so much more energy and felt that I had a life. I had had a hectic Christmas period, and this had took its toll on me together with not being able to tolerate azathioprine, so the increased dose of steroid felt like a god send.

    Now my body can really tell that the steroids have been reduced and sometimes find myself dragging through the day.

    I have got a bone scan in about 10 days, and repeat bloods at the hospital to check ESR levels etc. Spoke to my rheumy nurse last week and she suggested maybe bringing my clinic appointment forward.

    I am just so gutted that I could not tolerate the azathioprine, like most of us I would love to get off the steroids completely.

    I also had a cardiac appointment last week ( got a leaking heart valve and sometime an erratic heart rate) and they want me to keep a closer eye on my blood pressure because steroids are obviously not good in that regard.

  • Hi my daughter was allergic to azathioprine and came out in a rash. Can you get micophenolate mofetil instead? My daughter's consultant said mmf is a more modern drug - the only thing is it can give you an upset tummy for the first couple of weeks. Good luck xx

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