The new saga continues....

[Kern1410]

Hello all!!

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!

[Soraya_PMR]

Brand or dose at fault? What dose did he put you on?

GCA pred should definitely be ONCE A DAY -**NO SPLITTING**

[Soraya_PMR in reply to Soraya_PMR]

You need your anti hypertensive meds reviewing. Pred tends to elevate BP.

What is BP? Might that be a cause of these latest headaches?

[Kern1410 in reply to Soraya_PMR]

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

[Kern1410 in reply to Soraya_PMR]

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.

Ugh!

[PMRpro Ambassador in reply to Kern1410]

You may have to accept you need some sick leave. If this really is GCA - it is a serious systemic illness. You are a poorly person.

[Soraya_PMR in reply to Kern1410]

It could be that you just went too low at 20? Might take a day or two to clear out more inflammation.

[Kern1410 in reply to Soraya_PMR]

Still waiting on the pharmacy and all involved. So should I take the whole dose or split? The whole dose was working prior to the new meds.

[PMRpro Ambassador in reply to Kern1410]

If the whole dose works - take the whole dose.

[Kern1410 in reply to PMRpro]

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. 😥

[Kern1410 in reply to Kern1410]

Also - swollen ankles and broken blood vessels on face. How often is the cartoid artery involved in these situations?

[Kern1410 in reply to Kern1410]

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!

[Hidden in reply to Kern1410]

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. 🌻🌻🌻

[Kern1410 in reply to Hidden]

I wish!! 😋 I’m at my daughters school for end of the year awards - then off to work- then off to the eye doctor to check everything out!

[Hidden in reply to Kern1410]

Well see if you can rest a bit after that full calendar!!😂😂😂

[Kern1410 in reply to Hidden]

No rest for the wicked! Lol! 😏

[PMRpro Ambassador in reply to Kern1410]

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?

[Kern1410 in reply to PMRpro]

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.

[PMRpro Ambassador in reply to Kern1410]

But it isn't neurology. I can't imagine what makes them think it is beyond them beside laziness. GPs do it in the rest of the world!

[Kern1410 in reply to PMRpro]

I know. I will make some calls today!

[PMRpro Ambassador in reply to Soraya_PMR]

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).

[Soraya_PMR in reply to PMRpro]

I suppose it’s either higher blood levels achieved v moderate levels for longer.

Do you have a link for that research?

[PMRpro Ambassador in reply to Soraya_PMR]

Will have to search ...

[Soraya_PMR in reply to PMRpro]

Thanks.

No hurry!