"If you’re an adult, you will also be screened for hepatitis B and C infection"
Oho- I was screened for HepB&Crecently so it looks as if my Rhoom may be planning to pump me full of Toxizoombaba.
I am currently reducing at 1mg/week to see if my adrenal gland will burst into life and restart making gallons of cortisol before breakfast every single day. Due to start 4mg tmrw. Have been feeling pretty rough on anything below about 9mg since January 2021 but, being a fool, forgot that taking it all at night- so that I could bounce out of bed rather than wait for a few hours- meant that my adrenal thing would never bother to mix up a corticocktail.
Cheers.
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ignatz
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Is that "...In the UK tocilizumab is only used for GCA....."? I suspect I am missing a great deal- and plan to get off all these drugs asap. Nothing less than 10-12mg/daily seems to work on me & and my Rheumatologist is horrified by how much I have been consuming.
I have to be frank; you have been yoyoing up and and down since you were diagnosed and if you had followed a more sensible plan from the beginning you would most probably have caused yourself far fewer problems and most likely be on a safe lower dose by now with your symptoms under better control. "Getting off Pred" is determined by your body's needs, not by wishful thinking. If there were a quick, painless way to achieve remission there would be no need for this support group.I don't wish to offend, but I honestly feel you need a good talking to. 😏
I have tried a variety of regimes and additional drugs to control my PMR. Nothing seems to work - other than at least 10mg daily -which horrifies my Rheumie. I get a good talking to about every 3-4 months for about 10-15 minutes from my Rheumie but have spent around 50% of the last 3.5 years in pain and brain fog as I reduce my dosage. God alone knows what she will try next when I see her at the end of August.
It took me over 4 years to get reliably below 10mg but I did subsequently get below 5 for a time before another major flare that is ongoing really. But you do have to go about things slowly and steadily. If you are struggling with this rheumy, maybe you need another view?
Reducing by 1mg per week is far too fast to persuade your adrenal function to wake up and keep up - at this stage the slower the better,
I think it is VERY unlikely that any rheumy would use tocilizumab for a patient already on 4mg pred - and if they did want to, I'd be asking for some very good discussion as to why. But in the UK you won't be approved for TCZ for PMR - unless individual funding is available.
However - 4 years of PMR is really quite normal - half of patients take more than 6 years to get off pred, Most rheumies expect you to be well below 10mg though. I need more than that to function and there are several of us on the forum in a similar position and requiring over 10mg. It is beginning to appear that a small proportion of patients have a refractive and long lasting form of PMR.
Many thanks. Perhaps I must join you as.... I need more than that to function and there are several of us on the forum in a similar position and requiring over 10mg. I am still finding out what- if anything- actually works for me AND does not horrify my Rheumie.
What may work for you is to look at ways of tapering which you will find in 'Topics' at the right of your screen. Achieving only 50% pain-free time in 3 + years clearly indicates there is something wrong with methods unless, of course, you are one of the small group with refractive and long-lasting PMR like PMRpro.Experimenting is fine if undertaken with knowledge but having a crack at anything and everything could be detrimental.
I am one of those as wellStill trying to get past 10 after close to 3 years and rheumy not happy but I am as I am pain free as long as I watch my blood work and pay attention to PMR aches when they return. Current dose 11 and tapering again
by .5 per month to hopefully pass 10 (for the 3rd time) at some point.
A bit concerned about your comment "forgot that taking it all at night- so that I could bounce out of bed rather than wait for a few hours- meant that my adrenal thing would never bother to mix up a corticocktail". As I take my Pred after the evening meal and with my next taper will approaching the need for the Adrenals to start kicking in. Does this mean I need to start taking the Pred in the morning again?
The critical thing for trigger the adrenal glands to produce morning cortisol to prepare for the day is a very low level at about midnight. So it depends how much of the dose you take in the evening and how long before midnight. The 2am dosing that is recommended is ideal - pred at its peak about 4am to deal with the inflammation but taken pretty much as far before midnight as is possible so plenty of time for the blood level to fall (takes 5 half lives to get to effectively zero. the half life for pred is 3-4 hours).
But it depends on the person - even taking it at night may not make that much difference.
Hi PMRpro, my eyes pricked up too when I read that about evening dosing. I'm not sure if I understand you correctly; I'm now at 4.25 (as best as I can judge cutting a pred pill in quarters) which is mostly the gastro resistant variety (apart from the cut bit), which I take around 6pm. This, I've found over the years, seems to work. However, I'm now not sure if this is the best plan for my adrenals? (Apologies to Ignatz for hijacking the post).
Theoretically it could be a problem - but I think the best way is to continue as you have been and see what happens. Taking 4mg about 6pm should mean a pretty low level in the blood by midnight (it halves every 2-3 hours) - taking it at 10pm would be a lot higher.
It may be that your adrenal function slowly improves anyway - if it doesn't then you could experiment to find a better way of managing the PMR as well as not affecting adrenal function. There is a natural secretion of cortisol in the late afternoon/early evening anyway - and that is why a lot of people find evenings hard if that isn't happening.
Thanks, does it make any difference that most of the pred is gastro resistant? I'd feared that it would take 5 or 6 hours to get into my system, therefore causing a spike around midnight.
Quite correct, sorry didn't register that bit - but that means you could ideally take the e/c at bedtime - and it will be at its best for the morning as well as not having got into the system until after midnight and then you could take the rest in the morning
Hi PMRpro, many thanks for your response, but I'm afraid that I'm being a bit thick in following it. I understand the 2am regime so that the Pred is at full strength at 4am. But you then say " but taken pretty much as far before midnight as is possible so plenty of time for the blood level to fall ". Does this mean that the Adrenals rely on the blood level? I got a bit confused at this point. I tend to take the Pred at about 7pm after the evening meal
Yes - the nadir is naturally at midnight and that triggers the system to start the process of producing morning cortisol which is when it is at the highest to get you going for the day
Ummmmm. As you all know- I am not an expert (even after almost 4 years).
I assume that clock times relate to light and dark. Do our circadian rhythms follow that OR follow our bedtime and waking time? I seem to be a 2am-10am sleeper.
My understanding is that we naturally inflame during the night to mend any damage from the day before and then, if healthy, produce cortisol at some point before we normally wake. So I may be inflames from 3am to 6am....then damping it all down from 6am to 9am when healthy and leaping from bed at 10am totally refreshed when healthy .
Would taking gastric resistant Pred about 2am be a great solution or......
The point is that yes, we "inflame" to heal BUT in autoimmune inflammatory conditions of all sorts the inflammation process goes haywire because the immune system can't recognise body tissues as self and attacks anything indiscrimately and causes too much inflammation.
Circadian rhythms adjust - that's the cause of the jet lag we experience when the clocks go forward or backwards - and in fact, jet lag at any time.
If you are taking gastric resistant prednisolone, it works well taken before bed - it takes at least 4 to 5 hours to get to its peak in the bloodstream . Taking plain pred at 2am is the ideal time because it is absorbed in an hour or so, prednisolone is immediately ready to go, prednisone must be processed by the liver so takes an hour more.
Hi Ignatz. I know this is a serious subject , but your post gave me a right belly laugh. I even wondered if you were having a larf too. Just what I needed on a dull morning. Some great advice already posted which I can't add to. But thanks so much.
I have been on Tociluzimab for 6 months and have not had a single problem with it. I have been on prednisone for 10 years with PMR/GCA. My rheumatologist, whom I trust implicity, has assured me I will not get cancer or some horrible disease from Actemra. My blood work is checked monthly with the infusion and I am being watched carefully, I am a cancer survivor. Actemra has allowed me to get down to 5mg. of prednisone. Since I am at 5mg. stomach has healed, blood pressure is normal and a lot of other pred induced issues have resolved. Actemra is not a drug to be taken lightly. Neither is prednisone. in the US Actemra is not FDA approved for PMR, only for GCA . When a person is stuck between a rock or a hard place, they do what they have to do. Do not trust every alarmist thing you read on the internet. Actemra is a necessary medication for some people. Sounds like you don't really need it.
Drat. "Tocilizumab will work within three to six months, if it is going to work at all. Some patients may feel better as early as two weeks after starting treatment." versusarthritis.org/about-a...
I may be in for another 6 months of hope over experience?
I suspect that that is for TCZ being used for RA. Biologics are very specific in their action so won't necessarily work - only if your RA is due to the IL-6 cytokine and there are others that are involved. PMR and GCA, on the other hand, are mostly caused by IL-6 so it is more likely to lead to a lower dose of pred. Half of GCA patients get to much lower doses of pred but not necessarily to zero - the other half get off pred altogether,
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