Adjusting Prednisolone

[Jeannie29]

I am reading lots of posts, re tapering and adjusting Pred.and it is sounding like you can just decide for yourself, or does it have to be ok'd by your GP.i know that I may sound a little ignorant , or maybe confused sounds better.Or are most of you not NHS patients. Just trying to understand a bit more

[SheffieldJane]

I am an NHS patient and I have managed my own tapering since The beginning ( March 2016). I have felt empowered and informed enough to do this due to this excellent forum. Had I asked for help from the GP no doubt it would have been offered, however, I think I now know more about this aspect of the disease than most GPs. My Rheumatologist, Sarah Mackie, who is a leading light in the field, is fully supportive of how I manage my condition. If you have specific questions our experienced members will always have advice for you.

[Jeannie29 in reply to SheffieldJane]

Thank you SheffieldJane, I may now have the courage to ask my GP about managing doses myself, I also am learning so much from this site

I wish you well

Jean

[Daisychain12 in reply to SheffieldJane]

Wow Jane. This is amazing. Bravo. You must feel so empowered. Xxxx

[DorsetLady PMRGCAuk volunteer]

Hi,

Early days it was a joint decision between my GP and myself - we had a rough plan outlined from the beginning. I’d see her on a monthly basis and providing I felt okay, and bloods backed that up I’d taper.

She was a bit paranoid, but then she had misdiagnosed me for 18 months which led to sight loss in right eye, so understandable I guess.

On lower doses I changed surgeries and new GP was happy for me to reduce as I thought fit and my symptoms dictated. Had tests every 2 then every 3 months. I could speak to him any time I had a problem or query - but as he said “you know your body and your illness better than I do, so do what’s best for you”.

Worked fine for me, but then I never had a flare - so after a dodgy start, a fairly easy ride.

Some doctors aren’t as amenable as mine, so you should discuss with him, he may set parameters within which you can work.

[Jeannie29 in reply to DorsetLady]

Thank you so much DorsetLady, I have a very understanding GP, but I always feel that I shouldn't be using so much of his time. I think this might br due to the fact that until the last few months, I only ever visited my GP

about twice a year, I am 76, and this PMR has hit me hard, but hey I'm still waking up every morning......

I wish you well

Jean

[DorsetLady PMRGCAuk volunteer in reply to Jeannie29]

Hi.

Agree GPs are overworked, but sometimes we do need to speak to them - so no choice really.

But talk to him about your own adjusting - as I said he may be quite happy within certain provisions. Then just touch base with him as you need to.

Actually once you get into this PMR malarkey you’ll know more than him about it anyway. Plus you feel more in control, and you’re not going to do anything stupid are you?

[PMRpro Ambassador]

I was originally just handed a script and left to it! When I did go to fetch more supplies she was writing the script before I sat down and was ushering me out of the door in minutes. To be fair, she was the only GP who'd recognised PMR, only worked part time (I had been lucky to see her after the rheumy had rather left me in limbo) and ALWAYS ran late - so she was keen to find patients she didn't have to spend time with.

Shortly after that we moved here for the bulk of the time so I rarely saw a doctor at all - she just gave me scripts for a stock for how long we were to be away. When I moved here I had to switch medication which led to a rather difficult 6 months and a hospital stay - after that I had a new GP who was rheumatology trained and suggested a very different form of steroid as the usual stuff here, Medrol, obviously was making me ill. Since then I see the GP for stocks, she knows I know how to reduce and leaves me to it. I now, for the first time, have a rheumy who is being far more proactive than anyone I have seen before. But he is a name in the PMR/GCA field so has some idea unlike a lot! Unfortunately, his current proactivity led to a 4 week whirl with methotrexate - result a resounding fail! I have to explain that on Thursday...

When people have been on pred for a few years - as a lot of us have - we are very aware of signs that mean we have overshot the target. And many of us have come to an agreement with our doctors. I always tell my doctor when I have changed my dose or if I had problems with a dose - but she doesn't dictate to me how to reduce.

[Daisychain12 in reply to PMRpro]

Of course I am miles away from having anything like your level if confidence. I’m at the start. But how heartened I am to see what is possible xxxx

[CT-5012]

My rheumy and I have reached an agreement, as long as I have a reduction plan, no pain and do some exercise he is happy to give me some blood forms filled in except for the date just in case I need them and leave me to get on with my life. His secretary emails me the results, I have an appointment about every two or three months and I get bloods done about a week before my appointment. Has worked well so far. If you let your doc know you have a good source of information and feel comfortable about managing your illness they are usually happy to set some limits and let you get on with it. All good wishes.

[Daisychain12 in reply to CT-5012]

CT this is an admirable plan and a great example of patient and doc trust and communication. Xx

[piglette]

I have virtually always made my own decisions in tapering although every so often my GP would make a suggestion which I would follow and it usually caused problems as she managed to be 100% wrong each time. It did help in that I discovered if I did the very opposite I would be OK!

[Daisychain12 in reply to piglette]

Oh piglette. That’s so upsetting. Xx

[piglette in reply to Daisychain12]

It’s all right she has now left!! Thank goodness. She really was useless. She did admit that she did not know much about steroids!

[Jeannie29]

OMG I have something to look forward to then!!! I must admit I have a lovely GP, but then I haven’t put my own suggestions to him yet.

I’ve put him on a bit of a pedestal , as it was him that first treated me for PMR ,when all other doctors were telling me it was OA (which I know I have, but also knew this was something completely different.

Thanks for your reply, and I wish you well

Jean

[piglette in reply to Jeannie29]

Stick with him, you may have a little jewel there. They seem to be few and far between. I am on my eighth GP and fourth rheumatologist. I had one GP who was wonderful and she left and became a medical beautician ie Botox! What a waste. I now have a new one who has just come to the practise who I thought was good. She asked me to phone her on my blood test results, she then asked why was I phoning her so I was put off a bit. I have given up rheumatologists they are bad for my health.

[Jeannie29 in reply to piglette]

I understand, must be really frustrating, but I wouldn’t mind a bit of Botox!!!

[piglette in reply to Jeannie29]

Neee, I am sure you look lovely without it and I don’t like the idea of having a frozen face with no expression.

[Daisychain12 in reply to piglette]

Haha. I have lines now that the damn pain put there. Don’t fancy Botox as knowing my luck it would make my health probs worse xxxx

[piglette in reply to Daisychain12]

I hear that someone is looking at selling Botox over the counter. I am not sure I would ever try it though.

[Daisychain12 in reply to Jeannie29]

Nooo Jeannie look at you. No need!!!!!

[Daisychain12 in reply to piglette]

Piglette it really worries me that you have inadequate care. Seriously I am concerned about your well being. How can I help? Can I research your area for you to see if any lateral thinking might help? Xxxx

[piglette in reply to Daisychain12]

Thanks Daisychain,

Don’t worry my father is a doctor and so are a lot of my friends. I have been doing work for the pharmaceutical industry for the last thirty years, so I see both sides of things.

[Daisychain12 in reply to piglette]

Piglet the that does make me feel better xxxxxx

[Marymon in reply to Jeannie29]

Agree with all the sound advice above, I only had PMR diagnosis confirmed 4 months ago, and from being totally clueless about it, after 2 appointments in first month, with an arrogant GP, who read from the screen. 3 months ago changed to another. I went armed with ammunition, i.e., print outs of the relevant articles and taper plans gleaned by advice from PMRpro and Dorest Lady. He was very impressed and was very happy for me to follow my chosen plan, Dorset Lady’s. Since then I see him every 4 weeks for Pred. Prescription. Started at 15mg now 11, but did up my self to 12.5 for a couple of days when feeling very achy in shoulder and hip.I take the tablets at midnight (ish) with a few spoons of Greek Yoghurt, and am mostly fine in the morning. Seems it is trial and error on timing as you will read others experiences.

If you can manage your own treatment you should feel calmer with more in control.

I was very shaky at first, and as long as you recognise it will not always be plain sailing, you will be fine.

So good luck Jeannie, you will find all the help you need on the site. I would say I swear by it, if I swore.🤭🤭

[PMRpro Ambassador in reply to Marymon]

That GP is a keeper - the other should get a clip round the ear and be sent for some retraining in relating to patients!

[Marymon in reply to PMRpro]

Broke out in deep chuckle, hope it’s infectious😄😄

[Jeannie29 in reply to Marymon]

I’m enjoying the site and I can easily swear, just to myself, and as I live alone, even out loud😀😀

[Daisychain12 in reply to Jeannie29]

Jeannie my language can be very robust. I swear a lot. I try to curtail it when I'm with people who get offended but at times it just seems the only way to express so much! You can swear with me to your heart's content, it will never offend me darling xxxxxxxxx

[Daisychain12 in reply to Jeannie29]

Yes I have my gp on a pedestal. I know that feeling. He has always believed me. Never been impatient. I dread him retiring. He is currently on holiday on safari. I begged him to not get eaten by a bear How bizarre is that!!!! Have to laugh.

[Marymon]

Go for it girl, recent scientific study showed that swearing helps us to endure pain.

Though don’t think ‘bother’ and ‘blow ‘give much relief!!!