I’ve been wandering around the information posts and found this in a post quoting Prof Dasgupta. I am interested in how you calculate the accumulated dose but have been unable to locate the spreadsheet referred to. I was also interested in how many people do actually keep an eye on the accumulated dose they have taken and if it’s more of a red herring than something we should keep an eye on.
“3. Side effects of steroids are most pronounced when the dose is 10 mg daily or above and the accumulated dose is more than 5-6 grams. If this cumulative dose is exceeded please discuss with your doctor regarding alternatives. Therefore, it is very important to get the dose exactly right for your needs – not 1 mg more or 1 mg less. The benefits of maintenance prednisolone under 5mg such as 1-3 mg daily generally override the risk of side effects.
4. Everyone is encouraged to keep a record of their cumulative dose of prednisolone and take it with them to their medical appointments.
PMRGCAuk have produced an Excel spreadsheet that you can use to help you record this information. It can be downloaded from our website under Homepage/Resources>Useful Documents and saved to your PCs. Or email info@pmrgca.org.uk and request one. We can also send you hard copy.”
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Billiebobdog
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I've used Sandra's Web App ever since she developed it and to date, my cumulative total is 13,677mg. It is what it is and what I've needed over the past 5 years+. I'm grateful for every mg!
The website could be clearer, but I think the link SnazzyD has provided is what they mean…
…As for keeping your eye on it, that’s could just be something else to stress you out. As we always say, you need what you need.
I did work mine out in retrospect, the Prof would probably have a coronary if he knew the total, but 5 years on, I’m still functioning….very nicely thank you!
Twelve years too late for me. All I know is that my cumulative dose is well north of 20g. But i have no identifiable adverse effects - no sign of diabetes, could do with losing some more weight but that's a life-time problem, no significant loss of bone density, not Cushingoid. My mood was worse with PMR and no pred (had 5 years of that) and I've just coped fairly well with some pretty horrific stress. I think it is a scare tactic to be honest.
I use MS Excel to track my dose and record any change of symptoms. As aside benefit I can tell exactly what my total dose is - 8099mg. currently at 3mg/day due to return of symptoms, was at 0.5mg before setback.
Tocilizumab, which is a biologic drug. In the UK it is only prescribable for GCA and limited to a year's allocation - except this has been extended to March 2022 due to Covid, so some people will have been on it for 2 years+ by then.
I can only speak for myself, I have been on a maintenance dose of 5mg for some 5 years as recommended by my rheumatologist, without side effects, and my PMR does not return. I will continue on this dose unless there is a change or I am recommended otherwise.You will be aware of course that we may all respond differently to a particular drug, that is the nature of the beast. I am a fairly fit 79 yr old male.
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