I wrote a few days ago about my rash. While waiting for the results of the biopsy, another two weeks, the rash has gotten worse and is covering more of my body.
The rash has not improved with topical steroids or oral antihistamines. The only thing that helps is Gold Bond Menthol lotion. It changes the itch into a stinging and then calms things for a while. Ointments might be good if it didn't make my clothes stick. Any seam, or pressure stickiness is causing a new patch of inflammation.
It looks like my only relief might be to go on the "short course" of Pred she has recommended. 40mg for a week, 30mg for a week, and 10 mg for the final week.
I was about to drop to 1mg on my PMR taper. I just left the lab where I had them draw a new ESR and CRP. Not sure what that will mean, but it could be informative.
The highest dose of Pred I was on was 20mgs. It made me somewhat irritable and my emotional reactions were sharper. I had no trouble sleeping. But i don't know how to gauge how I'm likely to be on l40 mgs and I'm supposed to be driving 4 hours on Sat. pm. and again on Next Tues.
Anyone have any suggestions?
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Hindags
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The trip is the only vacation we have planned and there are costs that would not be recoverable. But as I am feeling now, it will really affect my ability to enjoy. I guess I want more than I'm likely to be able to get in this situation.
I just looked at your earlier post. To reassure you about the short course of pred, in our extended family there is a man in his 70s who has PMR and a couple of other comorbidities, including he had a bout of something which affected his breathing very badly. At the time he was on 8 mg for his PMR. He was put on a short course and rapidly tapered off, much like your suggested treatment, although I don't know the exact details. This was very helpful for the condition it was treating. (Unfortunately he is a very good patient and does what he's told, and as the instructions were to taper off pred this was done, possibly while he was still in hospital, and he had to speak up and say, wait a minute, don't I still need my 8 mg for PMR?)
I am not that good a patient. I just had my esr and crp tested. My esr is usually very reflective of stuff. But i was at my usual level. 22 on a scale to 30. That is very good for me. CRP will take a little while longer to be done.
I was shocked that he was tapered off the pred. I don't think I would let that happen to me, but I suppose when you've been hauled off to hospital in the middle of the night possibly dying, who knows what you'd do, probably accept all treatment being offered as your life is being saved, but the medical team should have been more careful.
Good that your tests are better than perhaps you expected. How are the actual PMR symptoms, or are they overpowered by the other discomfort? I suppose at 1 mg you are pretty much over it. I'm approaching 1 mg and feeling pretty good, at last!
Hello, at 40mg I took myself off the road for anything more than 10-20 min journeys because my attention span wasn’t good enough in my opinion. I didn’t think I would react quickly enough either to an emergency due to brain fog. It was jolly annoying aged 54 with two teenagers.
What about doing many stops if you really have to take 40mg now? That does lengthen the day though.
When I was diagnosed with GCA I was only able to take Two days off work. I have a 1.5 hours commute each way. I was on 60 mg. I know I was hyper. I drive fast anyway. But my brain was the same. In some ways I think I was more alert. But please take care and test it out. Have you spoken to the doctor. Plenty of fluid and rests might help you feel calm
Maybe you can extend your trip so you're only driving 2 hours, stop over for the night, and continue the next day, doing the same on the reverse. In any case, you don't have to do the 4 hours all at a go. You could break it up into smaller segments. You won't know how you're going the be effected until you take the dose increase, but perhaps not being on the road for 4 hours at a shot is something to think about
I'm thinking having your partner doing the majority of the driving might be the best idea, no matter how you plan the drive.
Is there a reason why you can't put off the increase until you reach your destination?
I saw the dermatologist again today and she agreed to my starting on 20mgs for a week by which time I'll be home. Then we'll have to adjust up or down. But after seeing how the rash has spread in the last week she strongly encouraged me to start treatment. My rheumy said that skin problems often do require higher doses than pmr. So I'll have to deal with whatever new taper is required. Now I just hope it helps.
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