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I am new to this forum. I was diagnosed with PMR on July 29th and started on 25 mg Prednisone. I also have post herpetic neuralgia and occipital neuralgia. CRP is down to normal and today GP reduced Pred to 20mg for 1 week then 15 mg until I see Rheumatologist in November. Starting Fosamax as well.
We’re supposed to leave in 2 weeks for my retirement trip. We have planned a slow trip around southern Spain and other than the overseas flight, the travel days are short train trips. We’re mid sixties and usually active hiking, biking, walking, gym etc. We’re undecided if we should travel or cancel. Out country medical insurance won’t cover anything related to PMR but dr,, pharmacist and RMT all said they would go on the trip. Dr qualified by saying if the trip would cause too much stress then not to go. I have another appointment with her on Friday and we have til 25th to decide.
Appreciate any additional advice to that already provided in earlier comments.
Replies to "I am new to this forum. I was diagnosed with PMR on July 29th and started..."
I’ve had PMR for 2 years now, starting with 30 mg of Prednisone. Once I took the medication I have never had a flare. I have also been doing what is called a very slow tapering schedule. Many doctors do not know about a very slow tapering, and they go with that .5 drop over a short period of time. My drop is a .O5 drop. I read about this type of taper in the PMR support group on Facebook. In all my reading of many people’s experiences with PMR, the slow tapering seems to be the most effective. I’m now down to 5.5. My husband and I went to Europe for the month of April. I never experienced any flare or pain. BUT, as you will read on this Mayo website as well as any other PMR support groups you follow, everyone is different, though we do appreciate everyone’s suggestions. Ultimately of course this will be your decision, but I think most agree here that the main thing you do if you have an extreme flare is you go up in your dose by .5 which typically knocks the pain away so I would definitely go, but have the prednisone you
“ might” need with you.
I would take the trip, with a good supply of prednisone. I personally, would slow my taper down before a trip. As much as I hate taking prednisone, I would pause my taper, if I was feeling pretty good. Once I got to 10 mg., I had a flare. I'm sure a 2 day road trip during the holidays didn't help matters. I've read that it's not uncommon to have a flare at 10 mg.
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I was diagnosed with PMR two years ago. Started on 20 mg and finally I am down to 2 1/2 mg. I was very active before I developed this awful disease. We went to Scotland last May. My advice is to go on your trip and enjoy it. Take extra prednisone in case you need to up it due to pain. I talked to my dr and had upped my dosage before I left so I would be pretty much pain free to enjoy my trip. Then when I got home I started tapering again. Life is short. Take the trip and have fun.