I wrote over the weekend I was new and mentioned that my tapering was pretty fast and I thought I needed more meds. I have only started this journey with pred on 5/21/19. I talked to a few member and went to urgent care. Received my new prescription - thought everything was great. Nope! The pharmacy changed the brand (this is the only thing I have come up with) and I had a bad reaction - my eye pain came back and my right temple was hurting like crazy - to the point where I had to leave the family and lay in a quiet room - no sleep though. Took about 5 hours to subside. The urgent care doctor also split the dose. I thought maybe it was a fluke so I stupidly took the second dose before bed. Same exact thing happened. So I called around yesterday - most pharmacies closed - found a few - but none with the original brand. I took the brand yesterday - felt fine - no problems. I’m calling my pharmacy today and cross your fingers they will replace the prescription. But in the meantime - my timing and dosage is all over the board. I finally slept last night but my blood pressure is off the carts and I’m super super jittery. I don’t feel great. How do I get back on track? I’m calling the doctor today as well!
Thanks for your input!
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Kern1410
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They added a second BP med - so right now I’m 50mg atenolol 2x a day and 25mg Losartan 1x a day. Right now - my BP keeps rising since I woke up - 175/91
I think brand still. My tapering ended with 20mg old brand - the new prescription started a split of 30mg in am then 30mg pm. I have enough of the old brand to get me through today. When I took 50mg of the old brand - no problems- I will take the last 50mg today then I’m out. But the excessive jitteriness and BP is making it hard to function and I’m just having to leave for work.
I did but I still feel crummy. I keep reading different posts - but I never felt that euphoria and pain relief. Even at 60mg - no energy, I would say 75% of issues were relieved. Back to old brand and 60mg - I started having tingly feet, my hands were stiff this morning, back achy - and I just feel unwell. And I don’t feel the dose stretches
24 hours. I just don’t want to be on this ride. My doctor is referring me to a neurologist now. 😥
I’m sorry - I’m just adding because it’s happening now and I’m frustrated. My arms are weak in the morning (most of the day) my blood pressure is sky high when I wake up (currently 176/93) and the same jitteriness. I feel the pred is hurting more than helping!
Not where GCA is concerned. Many people struggle initially. You have been through the wars pred wise. You just need to get them to prescribe what dose you need and stick with what has so far helped 75% of the symptoms. It's a heavy duty condition, that may really be showing itself in its true colours now. You need to sit down and rest for an hour. 🌻🌻🌻
Not everyone experiences it - high dose pred can also knock you out. And you have a serious systemic illness - it makes you feel really unwell. Remember the entire spectrum of GCA and PMR is represented on this forum. What applies for one doesn't apply to all.
No-one wants to be on this ride, but if this is GCA the pred is protecting your sight so is doing more good than bad. Why a neurologist?
I have only been seeing my primary. Here in the US if it’s anything out of the ordinary- they refer you out to a specialist. She is uncomfortable with me being on long term steroids - so I’m assuming she is handing me off. I can’t get into my rheumatologist till 6/7 - but I’m calling on that today. In our brief phone call - she just thought a neurologist would be better suited to monitor the dosage?? I know - doesn’t make much sense...I will try and get more answers today! Yesterday’s battle was getting that prescription filled. I think since nothing has been officially diagnosed - they don’t know what to do with me.
A study has found it probably doesn't make a difference - and anyone with a return of symptoms inside 24 hours probably should split as the symptoms are a sign of uncontrolled inflammation (logically enough).
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