I was diagnosed with GCA in May this year and started on 60mg (12 x 5mg) pink dispersable tablets that I call my 'pink gin'. I have been reducing as advised by one 5mg tablet every 2 weeks and now on 5 a day - 25mg. I will soon change to needing 2.5mg tablets as I reduce further and by smaller amounts and my GP has made ordinary pred tablets available to me as dispersable tablets only come in 5mg size. So I will be taking 3 x 5mg dissolvable and 1 x 2.5m ordinary tablet when I get down to 17.5mg and just wondered if mixing tablets could cause me any problems as presumably the dissolvable tablets start to work more quickly. Just to add I have these even though they are super expensive due to swallowing problems.
I also have concerns that I am reducing too quickly as I do get to feel generally unwell, and very tired for several days during the week I reduce. Initially I was asked to reduce by 10mg every 2 weeks but this was changed to 5mg after the first time. The change from 35 to 30mg was the worst but so far I am coping with the reduction from 30 to 25 quite well (day 6). Fingers crossed I haven't jinxed myself!
This is my first question and any advice is very welcome please. I'm so glad I joined this forum which was recommended to me by the Hospital and read the posts every day. The wealth of knowledge and experience has proved invaluable. Thank you.
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HappyDiamonds
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If you have been reducing by 5mg every 2 weeks I'm not entirely surprised you are struggling, it is a big change in dose after you have been on pred for some months although 5mg every 2 weeks is probably less awful than 10mg once a month. Your body has just sorted itself out and you knock it back again!
We used to tell people to clear the decks and the diary for the week after they intended reducing so they weren't trying to cope with the dose change and other things too and it did seem to help. But if you are reducing every 2 weeks that would be half your diary crossed out!
You could cut the dispersible tablets to get 2.5mg-ish - the exact dose really isn't that important, it just needs to be less than the old dose. Some dispersible ones come with a score line which makes it easy.
I don't think there will be much difference between the onset of action - the dispersible ones are likely to be faster but even the ordinary sort are broken down and absorbed within an hour or so. That is providing they are the plain white pred tablets. That wouldn't apply for the enteric coated prednisolone - 2.5mg ones are brown - as they can take several hours to get into the system as they must pass through the stomach before being broken down lower down the gut. You can only try - if it doesn't work well you will balance it out by taking the plain pred tablet about an hour before your pink gin. If it turns out he is giving you the enteric coated tablets you could take one before bed and the pink gin next morning - but cross that bridge if you get to it!
Thank you very much, I will let you know how I get on in case it helps someone else in the future. However my GP told me that the dispersible tablets should not be cut in half which is a pity. I think I will also speak to the Hospital about slowing down, you hit the nail on the head, I just get back to feeling ok and then quickly get knocked back again.
Yes, I read that on the data sheet, that the break is to make them easier to swallow - but why would you need that if they are dispersible? There is a lot of hum-haw about breaking tablets but a manufacturer explained on a medical programme that since all tablets are manufactured in a similar way the active substance is likely to be fairly evenly distributed and for us it doesn't need to be absolutely accurate, what you don't get today you will get tomorrow and it balances out with just under half on one day, just over on the other. It is still about half!
Im going to try it anyway and see what happens, if that doesn't work I have thought of taking 20 one day and 15 the next so that works out to 35 over 2 days instead of 17.5 every day.
I have discovered that the plain white tablets can be put in water and will eventually dissolve. Dare not mention that to my Surgery they are still crying over the cost of having to supply me with the pink ones!
My husband uses a pestle and mortar for the tablets he can't manage. Some work well in a glass of water and stirred well, the others he used to put in a spoon with a bit of honey (he doesn't eat yoghurt which is what I would use).
With the help of this forum and the wonderful reduction protocol available I have avoided going too fast in reduction now. This is a long term thing and reducing too fast just causes misery and anxiety! Like you I started on 60 of Prednisolone about 18 months ago. The first few months were a chaotic mix of "you haven't got it" You have got it - and eventually You have both GCA and PMR! I am now down to 9 a day - 4 x 1s and a 5. I never dreamt I would be taking steroids - it is against all of my beliefs in natural medicine - but the threat to my eyesight soon had me adjusting my beliefs - and feeling it is not to be messed with. My sister (slightly older than me) also has both GCA and PMR and she keeps reducing too quickly and going back to misery before raising again. My younger brother has GCA and is about 2 years ahead of us and still taking Methotrexate. I am happy with being patient (although I did have some worries about Covid-19 but I am happy to shield for as long as necessary. )
I am afraid I can't help you with the soluble side of your question. I actually take quite a few supplements a lot of them much bigger than the Pred - but it is always the little Preds that stays in my mouth and won't go down - I have no idea why! First thing in the morning I take a Thyroid med of similar size and that always goes down ok - so a little weird! Best of luck anyway.
Thank you for replying. I never dreamt I would end up taking Steroids either but they have given me my life back. My main aim now is to speak to the Hospital and let them know that I am not happy with the speed of reduction they have planned for me especially when I get to lower doses. Yesterday I had some head and face pain for a few hours but an early night and 8 hours sleep (very unusual) seems to have helped as I feel ok today thank goodness.
I also take Thyroxine and use greek yoghurt to get them down, I find the tiny tablets like these very hard to swallow as the muscles in my oesophagus do not work as they should.
Interesting that your siblings should both have GCA. When I was diagnosed I instantly remembered my Mother-In-Law having it and taking her to hospital for a biopsy. Only now do I appreciate how she must have suffered as she had RA too.
I was going to ask you if your difficulty swallowing was anything to do with your Thyroid. I also have Auto-Immune Thyroiditis aka Hashimotos. However being a fan of the natural route I am using NDT as I felt awful on Levothyroxine. Self-treating with the help of another forum (not HU). Yes indeed steroids do give us a life back for which I am very grateful. Luckily my Rheumy discharged me to my GP to reduce as I see fit! I am immensely grateful to this forum for helping me! I refused the biopsy as it was offered 4 months after starting prednisolone. My brother had the biopsy and advised against - I am not sure if sister had one but she was diagnosed by ultra sound lucky thing. Post Code lottery it seems!
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