Reduction of Steroids

Hello Everyone.

Firstly, I would like to say what a fantastic forum this is. The support is phenomenal.

I wrote on here a short while ago having been recently diagnosed with PMR. I noticed a miraculous recovery within 48 hours and have been gradually reducing the Prednisolone from 15mgs down to 9mgs. My symptoms have not returned and I have been able to return to work (only two half days per week) as well as regularly looking after my young grandchild. I know that I am very lucky to be back to almost where I was before PMR struck.

I saw my Rheumatologist today and he was very pleased with my response to the medication. He suggested reducing the Prednisolone by 1mg every two weeks instead of the original every four weeks. I, like most people, do not want to take steroids any longer than I really need to. In one way, I am pleased he has suggested a faster reduction, but another part of me is quite anxious that my symptoms may return. He did not give me any guidance about what to do if this happens. I assume I will need to talk to my GP or ask his secretary about increasing them again.

Has anyone else successfully reduced their steroids this rapidly?

13 Replies

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  • My rheumatologist wanted me to reduce fast and in the end it was a total disaster. I feel that half a mg a month under 10mg works well, some people can do 1mg a month. Personally I would not try to go faster than that, although I know doctors would like us to reduce as fast as possible. If you still have PMR you will need pred, cutting to zero does not help.

  • I think you would be tempting fate to increase your rate of reduction when you're already below 10 mg. As PMRpro says, "It isn't slow if it works". By increasing rate of taper you risk a flare which will mean increasing pred dose, for who knows how long, and thus adding to your total lifetime steroid load, not reducing it. You don't want to get into a yoyo situation where you repeatedly drop a little too low because you are reducing too quickly, experience symptom return and have to increase.

    As long as you feel no return of your symptoms you would be wise to remain at the current rate of taper. Unless PMR has gone completely into remission (unlikely this quickly but perhaps it's true in your case) you may well have to slow the taper in the near future. Remember, the smaller your dose, the bigger percentage 1 mg becomes and this is particularly significant below 10 mg.

    The other thing you need to be aware of is too rapid a reduction makes it much harder to distinguish between steroid withdrawal symptoms and the return of PMR symptoms. Personally I'd prefer to take longer to get safely and securely to each lower dose than risk the possibility of unnecessary flares and the resulting dose increase.

  • Just to weigh in a short note. Take it slow, very slow. As your dose gets lower your past sleep, wake, energy levels return. If your symptoms did return and you went slowly you would have a better idea what dose was effective.

  • Alarm bells ringing! If it ain't broke don't fix it. I would urge grandmother's footsteps tapering. You've had a beautiful journey so far, don't risk it. Also you are heading for the Adrenal wake up stage ( around 7 mgs). Your body needs a chance to respond to this. Good Luck, play the long game. X

  • So tempting to reduse and be rid of these steroids but wise advice from others who have travelled this road is good advice. This lesson of patience is frustrating but you will get there in the end. You are important and you know your body better than anyone else. Take it slow and listen to your body.

  • Send an email to pmrandgcafightersne@gmail.com, subject heading 'Reduction Plans'.

    Two plans will be sent to you, free of charge. DSNS (Dead Slow and Nearly Stop and TNH (Tortoise Not Hare)

    These plans have been devised by Patients for Patients over 7 years ago.

    Many people have found that they work for them and you can discuss them with your medics if you so desire.

  • Thank you all for your kind and helpful replies.

    Do people go against professional guidance with their steroids and manage their PMR themselves or do they remain in contact with their GP or Rheumatologist if they experience 'flares' in their condition?

    Regards to you all - Valerie

  • We go against advice when the advice is faulty. I strongly recommend that you get your doctor on your side. I followed instructions to the point where the recommended taper became too fast, very obvious because of pain increase over several days. I stopped the taper (her instruction ahead of time) increased the dose to where I'd last felt well (advice from the forum) and went back to see the doctor with a copy of dead slow taper plan in my hot little hand. She looked at it and said she had no problems with my giving it a try, and since then I've not looked back! But she was always very reasonable, telling me at the very beginning that one treated symptoms, not test results, and that I, the patient, would have a lot to say about how the taper proceeded. Even that many of her patients keep a supply of 1 mg tablets on hand even after they are "off" pred, in case they need a little dose from time to time. When she told me all this it was such early days I didn't really understand the implications of what she was saying, but now I thank my lucky stars that after over a year of suffering I fell into the care of this particular physician.

  • You have to stay in contact with one or the other to get prescriptions!

    I've never had any professional guidance and I suspect there are a lot of people who have been handed the pills and get repeat scripts who have been told next to nothing about how to taper. Others have been told to taper in totally unrealistic ways which just lead to flares.

    I'm lucky - my GP is rheumatology trained. I saw a specialist last year when I had a flare - it was very atypical, manifested as acute breathlessness about 2 or 3 weeks before the PMR signs appeared and could have been cardiac so I saw the head of medicine here who has a special interest in PMR/GCA. I saw a super rheumy today - but not for the PMR, for the myofascial pain syndrome that accompanies it.

    Otherwise it is up to me - but the GP knows I am tapering and don't mess about. I've had PMR for 13 years and been on pred for heading for 8 years - loads of experience!!!!!!

  • Aggggghhhhh - NO!

    You have done so well so far because the dose is still well above what you are looking for: THE LOWEST DOSE THAT MANAGES THE SYMPTOMS AS WELL AS THE STARTING DOSE.

    The sceptical (and really very unhelpful rheumy) I saw gave me a 6 week taper of the sort they use in RA because I was about to head for the USA and could hardly move in the hope I'd get some relief. I took 15mg at 10.15am and at 4pm walked down and back up stairs normally - something I hadn't been able to do for a few years due to PMR. I had 2 weeks at 15mg, brilliant, 2 weeks at 10mg, also brilliant, 2 weeks at 5mg - perfectly liveable with. And then, 6 hours after missing a 5mg tablet I was in worse pain than I had been before, in bed, in tears.

    None of us want to take pred for longer than we need - but rushing at a reduction like that is more likely to induce a big flare in symptoms and send you back to the beginning, resulting in longer on pred and a higher total dose than if you continue as you have been. The pred has cured nothing, it is managing the inflammation the body creates every morning in response to a new dose of inflammatory substances shed in the body at about 4.30am. Pred is typically needed for anything between 2 and 6 years - and sometimes even longer. Rushing off pred won't change that - PMR comes when it likes and will go when it feels like it.

    You need some time to know that the dose you are on is still enough, 1/2mg is enough to allow the dripping tap of inflammation to fill up the bucket and it overflows again and causes symptoms. If you reduce faster you may miss the endpoint and overshoot and then you don't know where it happened. You have to go back higher than perhaps you need have. And when you get into a yoyo pattern with reducing it often gets harder and harder to control the symptoms.

    Top experts in tapering have said that no reduction should be more than 10% of the current dose - below 10mg that is already only 1mg, at 5mg it is 1/2mg. There is a difference between reducing the dose in a taper because your patient has a flare of their RA - that is being used to calm down the flare until their DMARD (the drug managing their RA symptoms) takes over again. Pred is our DMARD - it is the only drug that works in PMR. They wouldn't tell their RA patient to stop taking their DMARD because their symptoms are well managed - it should be the same with PMR.

    For most people, even missing one day's tablets is enough to allow a return of symptoms. That is often a good reminder why we are taking pred!

    This is a link to one of the slow reduction plans mentioned by sambucca:

    healthunlocked.com/pmrgcauk...

    It is currently being used in Leeds in a clinical study called StayActive so is approved of by both a top medic in the PMR field and the local ethical committee. There are a few people on the forum participating in the study.

  • Everyone is different with what works for them in reducing. Above all, listen to your own body.

    Yes, I do a faster reduction than most on this site. When reducing, I typically do an overnight drop and stay there 9-14 days before trying a drop again. 9 days is the longest I have gone on a drop before I noticed symptoms returning, which is why I make 9 days my minimum.

    I have done .5 mg drops for all drops under 10, because that was the point my body started complaining when I tried a 1 mg drop. So if you are still feeling ok with 1 mg drops, that is fine. If you feel fairly well, by all means, try another drop. But, if you feel a bit on edge, like the prednisone is just barely covering the symptoms, that is your clue to stay on dose you are at or even consider going up .5 or 1 mg. Stress is particularly harmful to us with this disease, so commit to trying a plan for a drop, but do not worry about it, just be prepared to react inteligently if your symptoms return.

    I've tried alternating days which wasn't very successful for me, and tried a version of the DSNS method which was difficult to track and not as helpful to me. But, I would certainly try DSNS again if I get stuck further on.

    You have to find the amount of pred that handles the disease at a certain point in time, and once you get there, you may have to stay at that level for a couple months or more before you can reduce again. I stayed at 10 for about 9 months and 5.5 for about 5 months.

    I've been on pred 26 months, started at 20 and am now at 3. I have done 4 .5 mg drops since January 1st.

    FYI-My rheumatologist gave me permission to handle my own reduction schedule.

    You may be one of the lucky ones who can get off of prednisone relatively easily. If not, we are all here to help you through it. Good luck!

  • Thank you so much for your message.

  • Thank you everyone again for all your support. I am feeling more positive now and will be vigilant regarding emergence of symptoms.

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