Breaking through the 10mg barrier

Hi, I was diagnosed with Polymyalgia Rheumatica plus some of the symptoms of GCA in June 2015 and started off on 50 mg of Prednisolone daily reducing every two weeks by 5 mg. I am now for the second time trying to break through what seems to be the barrier of 10mg downwards. I got down to 8mg and found that I was in a great deal of pain and stiffness and sleeping all the time and had no strength. My Doctor immediately put me back up to 10mg and within days I had no pain, was wide awake etc. She did a blood test after about 2 weeks to check on inflammation in joints etc and I started the downward route once more reducing by 1mg per month, but this time I realised that on 2 x 5mg tablets I was fine but when the 1 mg tablet was introduce at 9mg per day I was in trouble. Could it be that the 1mg tablet had a different make-up to the 5mg tablet I wondered. Having had to live on medication most of my life I have found that the make up of the tablet or capsule can affect how one responds to it and what side effects one experiences. So this time I am using 2 x 5 mg tablets and dividing the second of these to make up the required dose per day. Fiddly I know, but I am now on 8 mg per day and no stiffness or pain in the mornings or indeed at all. This is reducing at 1mg per month from now on or that is the plan. I have been used for the last 20 years or so to pace my activities because of chronic pain from a back problem and walking problems too, so pacing wasn't really an issue, but for six months I was TOLD to have complete rest and do nothing to aggravate the condition - which I did and would say that this, hard as it was, was key to reducing the dosage and not experiencing any problems until the introduction of the 1mg tablets. I won't say I have found the answer, but for me it seems to be, and to continue the downward dosage seems to be working at the moment and so I am quite positive. I am wide awake during the day and able to start to build up my strength again and do some jobs around the house, always mindful of pacing myself and resting. If you think it is worth a try then with your Doctor's OK, I would say give it a go. I have had fantastic support from my GP, the hospital department and the nurses throughout this and telephone consultations whenever needed with my GP if I had problems or was anxious or just to update her and for her to update me.

40 Replies

  • Hi Hampshire Lass,

    There shouldn't be any difference between the make up of the various strengths of Pred, whether they are uncoated or coated, but the coating may affect. If you are cutting them I assume they are all uncoated.

    You do seem to have reduced very quickly, so even though you say you ok on 8mg the second time of trying, you should go a bit slower now. Lots of people do find that once they get to these levels it becomes more difficult as your adrenal glands have to start kicking back in.

    It's good that you are so positive, but just be aware that you are getting into a critical stage of reduction.

    Although I'm a Dorset Lady now, I did start off life as a Hampshire Lass! Where do you live?

  • If they come from different companies the fillers could well be different - and could well have an effect on absorption.

    I went from being fine on whatever the dose was of enteric coated tablets that came in blister packs to being very definitely NOT fine on the identical dose of enteric coated 5mg (red) tablets which were dispensed in a large container from loose supply. I was equally fine on the identical dose of enteric coated 2.5mg (brown) tablets, also loose supply. I refuse to believe all tablets are equal.

  • Ok point taken. Must admit I'm fairly lucky with tablets- very few upset me. My dearly departed always reckoned I had a cast iron stomach. They say the sweetest things!

  • Don't they just ;-)

    I'm not normally delicate when it comes to tablets - but that episode gave rise to a MAJOR flare - and when I was switched to Medrol (in the absence of pred of any shape or form here) it just got worse.

    I still don't get it ...

  • No, never had you down as delicate!!!!!!!

    Seriously though, hope you're coping with your current flare.

  • I went for a walk this afternoon - the normal 1/2 hour, all round the usual track with uphills and downs and the stairs at the end - no bother at all other than feeling rather knackered after not having done anything for 2 or 3 weeks.

    In the morning - I struggle to even get to the village. Wonder if they can think of something to deal with the morning breathlessness? Bizarre...

  • Mmm!! you already take your tablets at night don't you? So that's not an option. What a weird and wonderful! thing this is. Some people get all the fun 🤔

  • I have wondered about taking them even earlier than 10pm...

  • How strange; my experience is exactly the opposite. I can manage 30 mins in the morning walking all the way into town. But after lunch I'm so breathless have to stop for breath after 100m or so. I take my steroids -currently 11.5 - in the morning so perhaps that's the answer.

    I have a GTN spray for angina but it's not that kind of breathlessness.

    Hope we can find a solution.

  • My pred is one designed to be taken at 10pm at night, not in the morning.

    I saw the local Big Cheese in medicine a few weeks ago - his immediate question was was it heart failure BUT also said it didn't look that way because in that case you would expect the breathlessness would get worse through the day, not better. It isn't - still no idea.

    However - if I were you Maria, I would ask your GP if you have had a BNP blood test done since this started - if your heart is having to work harder to get the same effect as normal it will be raised. It is something different to angina so is a reasonable thing to ask your doctor to do. It is a quick and cheap answer to differentiate if it is heart or lungs causing it and can bring some peace of mind at least.

  • Thanks for that. I have had a whole raft of tests and am seeing cardiologist on 3 May for further investigations as GP thinks they do indicate heart as the culprit. But the difference between a.m/p.m breathing still puzzles me. I appreciate that the heart has work to do in post lunch digestion but my breakfast is probably as substantial as lunch yet I trot off blithely -or as blithely as my legs permit- in the morning and trudge along feeling like a broken harmonium in the afternoon. Heigh-ho I await further developments .

  • Good luck with your cardiologist on the 3rd May and here's hoping he can sort you out. I have an irregular heart beat which I have had for a number of years and it seems stable according to my cardiologist on the medication I now take to help me , but it does contribute to feeling tired and if I do go out in the mornings because it is a 'good' day, then more likely than not I just drop off to sleep during the afternoon without any warning - Ho-hum .........

  • I think it is a case of your heart is rested overnight and is doing quite well in the morning. If it is heart failure it simply gets more and more tired as the day goes on - just like any other part of us as we walk further, climb more stairs and so on.

    Not of course that heart failure means your heart is about to give out - it just needs a bit of help.

  • I take my Prednisolone straight after breakfast given it says with or after food. I do find getting going in the mornings a problem too, so I don't make any appointments now for the early part of the day and tend to take it easy after breakfast. I cannot get out unless I use my car and have paracetamol and my TENS machine to help with pain of walking. I do think thought we all have other problems that impinge on this illness and that is why so many different solutions, perhaps tailored to our specific needs are being used to help us.

    I think we just have to adjust to what it throws at us ..........

  • You might find you do better if you try setting your alarm for early and take your pred with a glass of milk or a yoghurt and then settle down for another couple of hours to allow the pred to work before getting up for the day.

    And if you need all that lot to get moving - try a mg or 2 more! The pred is your painkiller. If you have "add-ons" that don't respond to the pred then consider other approaches such as Bowen therapy or physio.

  • Oh if only I could but I am very much and early bird and cannot stay in bed once I am awake unfortunately, as your suggestion sounds really enticing.

    I use the TENS machine, plus a walking stick as the pains I get from the nerve damage in my lower spine which affects my legs and I am lucky to still be able to walk can be random and feel in one form as though I have twisted my knee or ankle really badly and I just go down. These pain spikes happen with no warning at all and can last from just a few seconds to many hours. Pred is designed to combat the pain from inflammation in the joints and muscle weakness and pain, but will talk to my GP about it when I see her next.

  • I have a longstanding problem with medication which throws up the same symptoms no matter what it is. This has to be down to a substance used to make the medication into either a capsule or a tablet. I agree with you totally......

  • Has it ever been considered you might be better with depot injections?

    See Recommendation 5 here:

    That would totally eliminate the fillers problem - not sure what else is in the injection formulation though.

  • Thank you for that, I will look at it more closely later. I have found that with the lowering dosage of Prednisolone the annoying symptoms are also reducing really well and I am more awake and active. The Hammy Hamster cheeks have gone and my weight is reducing well too.

    At this time I would like to follow the cutting up of the tablet as it seems to be working, but if it stops working then it is definitely an idea, but for the future it could well be an avenue to explore as I have a huge problem with NSAIDs, plus, plus and I should be wearing a Medicare bracelet or similar, which reminds me I need to do something about that too.

  • I'm going to a conference in Canada in May (in the service of PMR), travelling alone. I have had a couple of transient global amnesia episodes in the past and OH is on eggshells about me in case I have another - I said he could buy me a MedicAlert bracelet and all he said was "they'll be expensive"!!!!!

  • I picked up a leaflet in Boots only yesterday and yes they can be but it depends on what metal you opt for, obviously steel will be cheaper than silver and silver cheaper than gold, but there are a number of other makers out there too plus a number of jewellers do them as well. Would be worthwhile to have a good look round first.

  • I live in Italy! No Boots or alternatives here.

    Just told him to google it - in rip-off Britain you pay for the jewellery and an annual subscription while in the US the first year is included in price of the bracelet. But he did look and decided maybe it wasn't so bad after all ;-)

  • I love my bracelet. I bought a silver one (because I'm worth it!) and for a one time fee of I think $20 I now have a lifetime online health record which can be accessed by a first responder via a PIN on the bracelet. I update it whenever my pred dose changes. You can list all your health issues and medications, family history, whatever you think is necessary. American Medical ID.

  • I think you have bought the one I was considering this morning with the ID and they give you a username and pin which is engraved on it.- good for you! I note that it is probably more expensive over here the updating etc for a lifetime is free. I really must get mine sorted......

  • There's another organization which has a monthly fee, but for long term use this was definitely the better option. I could have got a much cheaper bracelet - or a more expensive one (gold). ;) I ordered off a Canadian website, but it was shipped from the US. There's UK and Australian sites also:

  • Yes, Universal ID was the one I have the leaflet for. ......

  • I couldn't believe it was an indefinite free service (at least in North America) so I phoned them before ordering (late last year) and they said there was only one charge, the initial one when I bought the bracelet.

  • That's what I thought too and it is the peace of mind it gives. I have a weird allergy to any of the white tapes etc used in modern medicine -it gives me anaphylaxis, thankfully removing it will bring about a reduction in the symptoms.

  • Hi, I lived for 7 years in Dorset from 2000 onwards and now am in the Winchester area. The regime of reduction I am following is that set up by my Consultant and is what she has set up, I would suppose according to my specific case and my GP is overseeing my care, obviously if it goes pear shaped then back to 10mg and start again and yes, I am aware of the stage I am at and have had a good discussion about this with my doctor. I have also read the book about surviving PMR which was very informative and most helpful and opened my eyes to may aspects that I was unaware of.

    Yes, the tablets are uncoated, but as I said having been on many other tablets for various problems, even capsules, one suited more often better than another. My premis for assuming a different make up of the compounds that have been used in making up the tablets is merely my assumption given I have had no problems with the 25 or 5mg tablets only the 1mg. The Doctors cannot tell you this as it is unethical for them to do so and probably are not aware of this anyhow, but I questioned a Pharmacist some years ago about why this was happening with another tablet I was on then for pain relief and asked him if I was imagining it. He said that it happened in many cases and no I wasn't imagining it. From then on he had a note on my records and only gave me the tablet I could cope with.

  • 10mg is often a tripping point - but what an interesting approach.

    However - wherever it is you have your rheumy - you lucky devil you!!!!!!

  • When it hit, it was over about three days and of course it was the weekend and I was totally unable to move, even had to lift my right arm with my left hand and couldn't even get dressed let alone get out of bed. I was at my doctors that morning, she rang the hospital, but her assessment and what I told her the hospital told her to start me on 50mg of Prednisolone straightaway and I was given an appointment for the Friday of that week at the hospital. The Prednisolone worked within a couple of days.

  • Hampshire Lass, it's an interesting approach, but what did the doctor say about maintaining bone health in the absence of exercise? I didn't know I wasn't "cured" for the first couple of months after starting pred and just did everything. In retrospect I'd say the opposite of what you said, which is that those two or three months of fairly vigorous physical activity (walking, lawn mowing, hefting boxes of books, etc.) were very good and gave me a base on which to continue the journey as pred started to erode my body....

  • Hi, I do toning exercises and can manage varying amounts of walking depending on how much rest I get. My problems with exercise is because I have nerve damage to my lower spinal cord, so basically the opposite to push through the pain which applies to normal back pain because that would only make it worse and take longer to get over. I know I did try that. I think this is a very weird illness and what suits one doesn't another, I was told over and over again no physical exercise and rest, rest, rest and they reckoned about 18 months to get over it - Mmmm I can hear you and having read the book I know that is wildly optimistic.

    I was original put on Alendronic acid to protect me against possible osteoporosis at a later stage, but taking it once a week I noticed an increase in pain and stiffness following taking it which reduced over the week and then taking the next tablet it started all over again. I have just had a bone density scan and it has come back as normal, so my GP is now able to prescribe another tablet which hopefully I can tolerate.

  • Just curious, if your bone density is normal why are you on medication? Wouldn't the usual calcium and its necessary companions be enough?

  • Because Prednisolone keeps the pain in check but has some nasty side effects that one needs to be protected from whilst taking it. One being it can cause bone thinning. So having been put on Prednisolone I now take three other tablets to protect me from the side effects of this drug, but without it my GP has told me I would be unable to move for pain and stiff joints. I rattle at times!

  • I take lots of pills, too, but apart from the pred they are all vitamins and minerals. My doctor is quite disappointed in me, but I'm a free spirit and she's getting used to me! :D

  • I think we have to find our own way through this however long it takes and if it seems the right approach then the anxiety levels are low and that is what matters. I think I am also a bit of a free spirit too but that is what makes us who we are..........

  • Forgot to say I have to take calcium with vitamin D tablets twice a day and an antacid before the first meal of the day.

  • As Heron says - no need for anything besides calcium and vit D (if you can tolerate them) if your result is normal. My bone density didn't change at all over nearly 4 years on pred so had I been taking anything else it would have been unnecessary.

    The actual facts are that less than half of people on pred develop osteoporosis and it is possible they were already osteoporitic when they started taking it but they hadn't been checked. Monitoring is what is recommended, taking a baseline dexascan and another1 or 2 years later depending on the first reading, to see what has happened in the meantime, only using bisphosphonates where there is deterioration in the bone density. Taking the extra calcium is enough in many people to avoid that deterioration and that has been shown in studies. If it isn't, fair enough, but unless there is a good reason to take AA nothing would induce me to.

    There are some ladies on the forums who have not taken even calcium and vit D and their bone density remained fine. There are others who did take AA and developed osteoporosis, one who developed shin splints thought to be due to 18 months of AA and another with bilateral femoral fractures which will not heal after 2 years of AA. Several have been told by their dentists they will not do certain treatments because they have been on AA.

    You CANNOT blanket say "taking pred causes osteoporosis". It doesn't always do so. However - if you are taking an "antacid" and it is a PPI - have they told you that THAT causes osteoporosis. Because it does.

  • Yes, I take Adcal-D3 twice a day and whilst on Prednisolone these medications are necessary to avoid the onset of osteoporosis following the stopping of taking the steroid and agree that not everyone will do so - However, I would rather be safe than sorry. The antacid isn't a problem unless one already has osteoporosis and the leaflet spells this out clearly.

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