I'm sure this has been addressed, but thought I would just go ahead and ask since I'm on anyway.
I was diagnosed with GCA last November. I started on 60 mg pred and my doctor has tapered me very slowly. Right now, I am at 6 mgs. It just seems that when I went down from 7 to 6 mgs I have been more tired and light headed. I am also on water pills to help with ankle/lower leg swelling that my doc says is from prednisone. I know that they cause light headedness, but it seems worse all of a sudden. My lab work came back and everything looks good. according to the doctor. Any insight, or could this be me up in my head after putting all of my faith in the pred to make me feel better and now I'm down to such a low dose maybe I'm imagining it? Since my numbers are great it's the only thing I can think of.
You all give wonderful advice and calm many nerves for us here on this forum. Can someone please calm me down!! It is so easy to get caught up in our heads when a little change seems to cause chaos.
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It sounds like you've got to the level still needed to keep symptoms in check. Another factor and I think this will explain how you are feeling now, is that your adrenal glands which have been on holiday since you started pred are now having to wake up as your pred dose is no longer giving you enough cortisol on a daily basis.
If you have been dropping by 1 mg overnight this is a good time to start using a slower taper. At this level 1 mg is well over 10% of the dose, so if you can taper by .5 mg at a time that will help, as will one of the methods developed by patients such as Dead Slow Nearly Stop and DL's Simple Taper. I think you'll find these in the pinned posts on the page.
Remember, pred cures nothing, it merely controls the inflammation until the disease goes away in its own good time, and that will probably be at least two years.
Agree with HeronNS regarding adrenal glands, so the slower you can taper the better, both for activating them and for finding the level of Pred you actually need! See “Steroid Tapering Plans” under Pinned Posts.
I would also make the comment that 60mg to 6mg in less than a year is not a slow taper - so just be aware that from now on you need to slow down - a lot!
Your taper does not appear to have been very slow especially from 60mg. I was diagnosed in oct last year with pmr and started on 15mg. I have been tapering very slowly and have had no problems but i only got to 9mg about a month ago. As you had gca and started on 60mg there seems to be a rush from your doctor to get you off pred asap. I think you have overshot your ideal dose. I am sure dorsetlady will be along in a bit to advise you as she is the the expert on GCA. Dont worry in the meantime. Good luck.YBB
I started on 60 mg pred in July 2017. I'm now on 7 mg and have agreed with my rheumy to get down to 6 mg by my next appointment in January, which will be two and a half years since I started. So your plan doesn't seem very slow to me.
Also I'm no expert but I was advised to avoid diuretics while on pred as steroids prevent diuretics from working properly. Maybe a forum member with more medical knowledge could comment on that.
As everyone has said your taper was quick so slowing down the pace now could be what you need.
I certainly wouldn't continue tapering until you have discussed any new symptoms with your GP.
Light headedness can be a side effect , but as you feel that it has come on more often and suddenly , this is definitely something that you need to see your GP about.
It may be a side effect of your medications , and as Marijo mentioned , diuretics are one of the medications that are listed in possible drug interactions with steroids , and either drug or both can do either of two things , not work as effectively as it should , or be processed slower through your system.
This also needs discussing , especially if your symptoms began to change after being put on water pills.
If you didn't get sodium or potassium tests done with your bloodwork you should ask for these to be tested , and also possibly have a urine test , just in case you have a low level UTI or Dehydration that is not showing other symptoms yet.
Until you get these tested , if you are still suffering swelling and dizziness , increasing your fluids each day and eating a low sodium , low carb diet will also help.
Take it slow , and I hope you choose to visit your GP again soon .
I'd have thought LACK of pred was more likely - you are in the realms of returning adrenal function. Just stay where youa re for a while and let your body catch up.
Like others, I wouldn't consider 60 to 6 in 10 months slow!!!! You have been lucky and it is time to slow down a lot now.
Diuretics and pred don't always mix well - it might be an idea to ask your GP to check your electrolyte levels. The mixture may have left your sodium/potassium levels a bit out of kilter and getting them checked would be a good precaution.
Thank you. I had no idea that my adrenal glands could be effected. I have been online (I am the queen of google), and not once did I come across anything that even mentioned my adrenal glands and cortisol level. So to say you all are smarter with this stuff than any google search, is why we all benefit from you all!
I do realize that I will be on prednisone for some time to come. But what surprises me is that my doctor told me my edema was caused by pred and then put me on a diuretic when in fact they should not be taken together. I have a call in, and will wait for his feedback. He did put me on potassium tablets, so there is that.
I know most of you are overseas, and do things a little differently over there. According to my Rheumatologist and GP, weaning down from 60 to 6 mgs is a slow taper, so that is why I said slowly. The goal is to get me to 5 and stay there for an additional 12 to 48 months.
I'm not sure how to respond to everyone as a group on here, so I am hoping you all read this and know that I appreciate you all so much. You have know idea what this forum has done for me since being diagnosed. I thank you from the bottom of my heart.
And a side note...... I hope you all understand as I read your replies that I do it with an English accent. If you could hear me out loud, you would cringe, but I think I sound quite knowledgeable. Love you guys!!!
The ACR (USA) and EULAR (Europe) issue joint statements and guidelines - they are approved by committees and so the same background applies to a great extent to the USA and the rest of the world. The disease is the same and the way of treating it shouldn't vary greatly.
Management of GCA is usually based on a 2 year outline but which then needs to be adjusted for the individual patient and may last much longer - that was the basis used in the Actemra clinical trial.
Tongue in cheek - can I suggest that it is YOU who are overseas? This forum is run by a charity that is very firmly based in the UK!
Try some replies with the accent of my county...Yorkshire. Here's a taster of common words and phrases for you to distract yourself with...when tha's dun the's mooar to lake wi' .....there are 6 or 7 distinct Yorkshire accents with several more mixed one. Al si thee.🤗😉
Sad thing is i looked at your yorkshire fnd pros scottish bits and instantly understood. My poor husband has been subjected to a mix of yorkshire, geordie and scottish for over 30 years and he still looks confused!!
I felt pretty rubbish around this mark. I think at first it is that there isn’t enough Pred for your needs but too much still for the adrenals to get the message that it’s their turn now. It got better as I went down but this in between stage made me feel as bad as the early days in terms of general body uselessness. 7-5mg was the worst. The best was 3mg. I was also emotional and prone to feeling down. From 10-5mg I reduced 0.5mg per 6-8 weeks and from 3mg 0.5mg every 12-14 weeks.
Like Snazzy I'm finding the drop from 6mg difficult. I'm currently tapering from 5mg to 4.5mg (DSNS) and don't always feel great. Had a blood test which was normal - my symptoms mirror my ESR and CRP levels. I'm achy, tired, sweaty and have a foul mood and very forgetful and disorientated. I know I'm suffering adrenal insufficiency so I slow the taper even more. Sadly my Rheumy doesn't believe in adrenal insufficiency and thinks our adrenal just kick back in. Fortunately with 30 years of clinical pharmacy experience I am collecting information and a whole suitcase full of papers which I will be presenting to him at my next appointment!!
Returning to your swollen ankles.... What medication have they given you. Pure diuretics are not often used these days. Some of the meds they use have ankle swelling as a side effect!!!!
Yes, 7 mg to 6 mg made me feel tired and light headed too. I can't speak about other issues because I only have PMR, but the feeling eventually went away and I was able to reduce to 4 mg. I agree, even though I don't have GCA, that your reduction seems really fast. I have never been able to reduce more than .25 mg on the slow taper and have never had a flair. Reducing more then .25 mg returned the pain and stiffness.
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Love you guys!!!
Pain in calf muscle
Rheumy wants to put me on Methotrexate- any advice?
All in my mind, apparently!!!
Adrenal function recovery yay!
Coated or non coated pred? - that is the question....
