Adjusting Dose of Prednisone

I’m new here. Diagnosed 3 months ago. Maybe I am not understanding but it seems that people are adjusting meds for PMR on their own. Why without doctor’s advice? Am I missing something?

[Koalajane]

I saw my doctor for for about 4 months after diagnosis and then she said she was letting me taper as I was an adult and able to do so. She said if I was concerned to see her and that I could have blood tests whenever I felt the need. I was concerned but she was right and at subsequent visits to the doctors they have said the same and never push me to taper

[cycli]

No Bowcar, that is not a correct interpretation of this site. I am also new to PMR and CGA. Diagnosed about same time as you with both. Here they offer advice and experience. Some who have been on this for years have a wealth of experience they share as to effects and dosing caution. We all defer to specialists for something or other but sometimes they fall short of being helpful or understanding never having suffered thus. It's then that people look for reassurance and advice. Read the FAQ section and get a feel for the site.

[Hidden in reply to cycli]

Thank you for your insights. I am finding the FAQ section difficult to access. I find this whole site confusing to navigate.

[cycli in reply to Hidden]

stick with it. There is much good advice here.

[DorsetLady PMRGCAuk volunteer in reply to Hidden]

This is the link to FAQs - healthunlocked.com/pmrgcauk...

You can save it….although it’s easy to find…it’s a Pinned post and also appears underneath the first post on the Posts page.

Just have a play around the forum, you won’t break anything

….and it becomes easier, the more you use it.

[DorsetLady PMRGCAuk volunteer]

People are not adjusting their meds willy-nilly, most of those who do are experienced, long term patients, and have been given authority to do so by their doctor.

My first GP knew little about GCA, so we made decisions regarding tapering together on a monthly basis……..

my second GP (moved surgery about 18 months after diagnosis) told me I was experienced enough - and in his own words “you know you body better than I do, so taper when you feel able, just keep me advised, and obviously call if you need to discuss anything”.

Fortunately I never flared.

Not all doctors are so amenable, and obviously if your case is more complex you need to follow medical advice.

[pata63 in reply to DorsetLady]

My GP started me on Prednisone at 20mg in April 2019 and I tapered down over 20 weeks to 5mg on his timetable. Still on 5 mg. I've tried to get down to 4.5 mg twice but wasn't successful. My GP made me promise I wouldn't try again until I check back with him. But other than that he trusts me to manage my dose level. Symptoms can tell more that blood tests when you are on Prednisone. I've had to use the sick day rules a few times due to a few things which landed me in the Emergency Ward for a day or two. In fact I hadn't heard about those rules at the time, but the hospital gave me instructions which are exactly what the sick day rules say. Later I learned about the sick day rules on this site and realized the context of what the hospital had been doing. I had a flare after my Flu vax a few months back and knowing the sick day rules I sorted it out. I didn't have a flare after my first Pfizer Covid vax, but did after my second. Once again I was able to handle that myself.

[Iamfedup in reply to pata63]

What are the sick day rules please?

[Rugger in reply to Iamfedup]

They are listed in the 'Pinned Posts' on the screen. It tells us what to do if we have an intercurrent illness, such as Covid.

[DorsetLady PMRGCAuk volunteer in reply to Iamfedup]

Here - healthunlocked.com/pmrgcauk...

[DorsetLady PMRGCAuk volunteer in reply to pata63]

Would say your initial reduction was a bit quick - but you seem to have survived it….however would just say that had that been slower you may not be stuttering at the 5mg level but it is what it is. And obviously the flares haven’t helped - whatever the reason.

As it is I wouldn’t be in any hurry to reduce - maybe stay at 5mg for a few months- to help your PMR and your adrenals.

[jinasc]

I notice you have just joined and pleased to see you have put in your location. You will find other Canadians on this site. However, it would be helpful if you could add more details, i e PMR date diagnosed, what dose started on and where are you now. If you have other med problems that is also a help.

Cylci's last sentence 'Read the FAQ section and get a feel for the site' is one of the best answers I have seen on this site. Click on Cylci's avatar and read his story.

Some of us on this forum have been there, seen it, done it and wear some of the scars as we have tried consistently to inform and educate, not only patients but also the medical professionals since 2008 and they have made a difference to both patients thinking and the researchers. It takes courage and patience (and some swearing, tearing your hair out as well). The situation has improved in regard to both PMR & GCA.

Take one example - age range late 60's onwards - not possible in 50+ - changed after patient support group leaders and many hours of work proved them wrong and the new guidelines state 50 and over.

Please remember we are all different as human beings and one size does not fit all.

More research is undertaken now than prior to 2008............nuff said - but welcome and we are here to help you, in the journey no-one ever volunteers to undertake, at anytime.

[Cosmos22Marigold]

I wish you well on your journey with this complaint but you will DEFINATELY find this site your most valued site for a wealth of advice. You dont need to make an appointment either. I don't feel experienced enough to give you my advice but to add to the fact that we are all different and the way our bodies react to this complaint varies so be patient and you'll be fine. All the best.

[Hidden]

I don't think your missing anything it is such an individual issue. I am A typical my GP has been useless. I tapered slowly over 10 months from 15 mg to zero. Using my own method. I am steroid free now for 21 weeks I have withdrawal symptoms not to be confused with a FLARE . I suspect many who reduce steroids experience withdrawal pain and think it's a flare. I have had considerable pain since ending the steroids but I am sure it was not a flare just withdrawal symptoms I used Ibuprofen to manage the aches I have now been free of all meds for two weeks I suspect my adrenal glands have taken five months to fully function again. I am optimistic that 18 months on from contracting PMR I am cured. Not complacent but optimistic. Just listen to your body and adjust the pred accordingly. Good luck

[oscarandchloe]

Welcome! We all started out immediately after diagnosis bewildered, confused and imposed upon by an illness that most people have never heard of and (worse) that a number of GPs have never encountered, or have inherited outdated knowledge about. There are clearly many folk on here who are supported, listened to and guided by their GPs and good rheumatologists, but - distressingly - equal numbers who have waited years for diagnosis, have been given wrong advice, have encountered opinionated medical professionals who did not know what they were doing (but acted as if they did).

This condition is not straight forward for either a medic or for us the patient to manage as there is no simple treatment that gives a cure. We all wait for our bodies to give up attacking us and meanwhile we protect ourselves from further damage by taking a steroid predisolone that affects each one of us differently while miraculously saving our sight (if you have GCA) and releasing you from pain and muscle stiffness (PMR). The more knowledge you have about your condition the better you will manage yourself, the medical profession and the decisions we all have to make about whether treatment or drugs offered to us are in our best interests.

This forum is your friend, a community of responsible folk who have invaluable information to support you (and they are always there for you unlike the inaccessible and remote GP we have all had to work with recently). Kate Gilbert's book ' Polymyalgia Rheumatica and Giant Cell Arteritis: a survival guide. 2nd edition will give you all the information you need to understand your illness -it's my Bible and gives me confidence to manage visits to GP etc. You get it on Amazon. Keep well and positive.

[Viveka]

Hi and welcome. When I was first diagnosed with GCA in March I was a rabbit in the headlights. I rushed to find expert consultants beyond the NHS and I was given the wrong advice - to taper quickly. I was all over the place! Having found a good consultant and listened to this forum I came to realise that everyone is different in this journey. It's vital to listen to and understand our bodies. Our self knowledge is an important part of the jigsaw. We have to try and listen without getting sucked into the fear because this leads to misinterpretation. Keeping a diary of symptoms can be really helpful to understand the difference between flare and taper side effects. The other important thing is to understand the mechanisms and individuality of tapering, which can be found on this site. I don't think most consultants understand how individual this all is. The other important thing is to find a consultant who gives good advice. Then I think there comes a point at which we develop the confidence to trust what our bodies are saying so we can take control over small adjustments to medication.

[Hidden]

My doctor is very helpful and advises me on tapering according to my general symptoms, however she always says that if I am not feeling well on the next reduced dose of prednisolone, to go back up to my previous dose, leaving me to make this decision. I always advise her of any change in dosage. The advice on this forum is extremely helpful and people's personal experiences of PMR are invaluable for solving problems re: side effects etc. Unhappily this auto-immune illness appears without reason. The medical experts can only treat the effects, it seems, but are unable to find a solution. This leads to a combined effort of both patient and doctor over treatment, as only the patient has the personal experience of how the PMR is evolving.