Your advice appreciated. I am doing an overeseas trip to UK next month, and although haven't taken any meds for the last year (stopped Pred and TCZ a year ago); have had recurring symptoms in neck/shoulder area but manageable. However, am leary of travelling without some backup and wondering if it is adviseable to start with a quarter of my 5mg tablet every day........OR can I do it every other day just to keep inflammation at bay? Of course, my rheumy does not want me on any Pred at all; but since I lost one eye 3yrs ago, don't want to take chances. Rheumy did advise to bring along a supply of 50gm Pred for emergency use only; but am now wondering if I can go into prevention mode without causing any problems?? As usual, all advice most appreciated and treasured.
can I take .25 Pred daily, just to sustain? (even... - PMRGCAuk
can I take .25 Pred daily, just to sustain? (even though Haven't taken any for over a year)
Quarter of a 5mg is 1.25mg, not 0.25mg
Have you discussed recurring symptoms with Rheumy? .. if so is that why they suggested carrying the 50mg? Better to restart you on low dose.
If you think your illness is recurring then you really need a constant dose… and you may find that 1.25mg keeps it at bay… just out of interest how long are you away? If less than 14 days or so you can stop it when you return without any issues - and report to Rheumy, who may not want you on any medication but it’s your GCA that may decide that [if that’s what it is].
Excellent. Yes, only gone for 2wks cruising the British Isles, which is why I was wondering if I should do this small dosage as preventative. Having progressed for nearly a year doing no drugs, and my CRP is sneaking upwards but rheumy keeping an eye on it. Rheumy knows about the mild recurrence of the neck/shoulder stiffness but she was worried that if I experience any "eye symptoms", should immediately ring local doctors but keep the tablets at hand, just in case. She also reminded me that UK was the safest place to be if something did occur because of the knowledge of the medical field. I do value the input from you advisors and helps me make decisions.
"She also reminded me that UK was the safest place to be if something did occur because of the knowledge of the medical field"
Like everywhere else, if you don't happen to have one of the goodies handy you are left stranded. Very much depends where the cruise touches land.
And frankly, I'm even less impressed that she is willing to stand back and wait for the possibility of visual symptoms when she can SEE there is inflammation building.
Can understand your concern about eye -(same situation as me) but you know what to do if anything strange occurs…
Exactly. Having eye exam next week, preventative just for peace of mind. Thanks again for all
You do need to speak to the rheumy about the persisting/returning symptoms. Even TCZ is not a cure and in the follow-up studies I think they found about half of patients relapse in the first year after discontinuing the TCZ?
I don't really see how 1/4mg pred is likely to make any difference.
Interesting. Yes, my CRP has been rising slowly since stopping, but rheumie watching and not concerned at this point. I was just thinking that if doing the small doses while on holiday, it would curb the ongoing inflammation. So, will have to re-think. Your input most appreciated as usual. Nice to have other minds sharing.
Yes, my CRP has been rising slowly since stopping, but rheumie watching and not concerned at this point.
If it’s rising then he should be taking notice…
Hmm - well I wouldn't be impressed at a rheumy looking at a rising trend of inflammatory markers and claiming they are not concerned. That indicated there increasing inflammation SOMEWHERE and given your history they have to assume there is a very good chance that the underlying autoimmune cause of the GCA is still there, albeit at a very low level. And a dripping tap will eventually fill the bucket and overflow. I would want to be on a low dose of pred or back on TCZ. I do wish the rheumies who are so excited to use TCZ read ALL the studies and warnings.
Absolutely. (Love the apt drippi.g tap) As with all rheumies, encouraged rapid decrease of Pred. That is why your counselling and experience so valued.
Prof Sarah Mackie in the UK loves it too! Rapid decrease of pred is absolutely fine when you are on TCZ - but once you are off TCZ, the original rules apply.
By the way - what is the itinerary for your cruise?
SoHampton/falmouth/cork/dublin/belfast/glasgow/orkney/invergordon/edinburgh/leHavre/doHampton. Will be doing a restful walk in a few of the places but I won't be doing vigorous anything.
Hmm - and believe me, once you leave S'ton, other than Glasgow and Edinburgh the choice of GCA experts is pretty limited! Or remote ...
Yessireeee. Rather thought that. Will just pace myself and think positive. Heaps of gratitude for all info.
Golly, are you saying there are experts in Soton?
Hmmmm. Thought I responded??? You are doing an incredible cruise if you have never been as Quebec is brilliant in the Fall and Quebec City is a splendour: feels like Europe and loaded with history (and good food). Might want to learn the basic french words but overall, locals are congenial.
Your input is much appreciated and although don't want to go back on Pred., would rather be safe than sorry and hoping that 1.25gm will keep the inflammation in check. Thank you and happy cruising to you
just to be on the safe side take much more than 50mgm. Tell her you just need it for emergency cover in case you can't find a doctor and if you have problems you will of course be phoning her for further advice. Take a couple packs of 20 mgm tablets then you won't have to worry. If you do need a big dose for a few days, it won't do you any harm. Don't forget to put them in your hand luggage. Have a wonderful cruise.
Yes indeed. I did get a prescription for the 50 mg and hopefully all goes well and I won't need them as you say. That was well thought out on your part and I appreciate what you have reminded me of. Thanks again and hopefully we'll respond when I return
Yes. But…. You might need to be prepared to adjust the dose. When I saw my rheumatologist recently he said he would be happy for me to take a daily 5mg dose of Pred as I can’t tolerate the higher doses. I see no reason as to why you couldn’t take a dose that works for you for what you need it to. All the best.
If you want Fall foliage, come to the Cape Breton highlands of Nova Scotia, before traveling back to NY. We have a beautiful province. Enjoy your trip.
I have been taking 1mg of PRED for the last month for the same reason. It has allowed me to vacation and restart my walking program without any problems. Mewy
Sydney is right near the Highlands. It is in Cape Breton. Sorry thought you were driving at some points along the way. Fortress Louisburg not far from Sydney. Wonderful, rich history in the Atlantic provinces.
I'm not fond of Quebec. When we drive to Ontario, we breeze right thru Quebec. They would be excluded from Canada if they could. Lol. Do you speak French? They rarely will speak English. Sounds like a wonderful cruise. Enjoy and be safe.
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