Is It GCA
Posted , 8 users are following.
After an ER visit on Thanksgiving night for severe headache and PMR symptoms, my internist arranged a rheumatologist consult for me in mid-December. Hospital ESR was 35 CRP was 14. I was given 15mg prednisone and sent home. Internist followed up with a me drop dose pack.
Rheumy suspected GCA because of headaches, jaw claudication and PMR symptoms, some double vision, started me on 60 mg prednisone. I had a TAB 5 days later, which was negative. Rheumy decreased dosage to 40 mg but said if symptoms came back to go back to 60 mg. They did, 2 days later. I upped the dose to 60, as instructed, and continued for 2 weeks. After some horrible side effects, mostly insomnia and sweating, as well as exhaustion, I tried going to 55mg. I am holding at that so far and will repeat blood work tomorrow, seeing Rheumy on 1/10.
I wish I knew if this is really GCA. After the quick taper to 40 proved disastrous, I'm afraid, but this much prednisone is killer. I know it's doing its job, but I would kill for sleep and am exhausted and grouchy all the time. Not to mention I'm freezing out everybody in the house. Can't wait to see Rheumy, I didn't know a negative biopsy is inconclusive, not really negative.
Looking for for any and all experiences.
0 likes, 10 replies
EileenH maria46264
Posted
Yes, I know how hard it is when you don't have a definitive answer - but hold on the the fact that the clinical image presented is almost certainly GCA, those symptoms are typical, as is the fact the symptoms went at 60 and came back at 40mg, possibly partly because of dropping so fast. And add to that the fact that the high dose pred may have horrible side effects but they are not as bad as the ultimate GCA side efect: irreversible loss of vision.
You are lucky with your rheumy - far worse would have been one who forgets the fact the TAB isn't infallible and who left you with no pred while your symptoms got worse or without a rheumy at all which is not uncommon in the USA with very long waiting lists for that first appointment.
I don't officially have GCA, just PMR, but there are others on here with GCA - just be patient!
amkoffee maria46264
Posted
I'm not on as high a dose of prednisone as you but I will say that I have a fan in every room that I frequently sit in and it has become my best friend.
Mrs_Hobbles maria46264
Posted
Maria, my heart truely goes out to you! I've been in exactly your position and it's not a happy one! There is so much going on, the PMR, the GCA, the pred, all the symptoms and side-effects not to mention the fear and uncertainty.
I think you can take it, unfortunately, that you have GCA. Your symptoms and PMR are too classic not to be and as you say a negative TAB doesn't mean negative. The pred would have done it's job if you'd been left at 60mg for longer, reducing so quickly didn't give it long enough to work on the inflammation. I was reduced from 60 to 30mg in one fell swoop with the thinking that because I was still on a high dose it wouldn't affect me too much. Clearly my rhumy (or yours) have never been on pred nor reduced by that much in one go.
One word for it.....nightmare!!
All the symptoms you have mentioned, just so, so sick. Couldn't drive, couldn't go out into my garden, couldn't sleep, eat, stand, talk. So my advice to you would be this, stay at the 60mg, or the 55 if thats working for you, for at least a month. Your system will get used to that dose and the symptoms will ease off, then reduce by 5mg and stay there for another month. You may feel a bit rattled for a couple of days but at the smaller drops your body will adjust quickly. You might even find that you can drop by 10mg but that might be a bit of an ask. Don't be talked into dropping by big amounts no matter how much you or your rhumy or gp want you off pred, it is just too hard, and there's no getting off it for a couple of years realistically. While you're getting used to the high doses you need to nap to try to catch up on sleep. Don't lie awake if you're waking during the night, read, watch tv but lying there just makes being awake worse. And this is all while your body is dealing with GCA, but at least if the inflamation is under control then you're 'only' dealing with the pred. You will get to the stage when you become used to the pred dose and you'll be able to get to a lower dose and you'll feel somewhat normal as long as everything stays at an even keel and you take things easy and mind yourself. I never thought I'd get to that stage and I pretty much have. It's not easy and your life is thrown into tormoil but you'll come to terms with it. As long as the PMR & GCA are kept under control, its the best you can hope for. Please let us know how you are getting on and if you need any questions answered, don't hesitate. Best of luck to you xx
EileenH Mrs_Hobbles
Posted
Can I just add that down to 40mg at least, 5mg every 2 weeks is worth trying - if it doesn't work you can go back and then don't have to try again. But you do need to stay at the starting dose until your symptoms are stable.
Susanne_M_UK maria46264
Posted
Maria
I've had GCA for just over 2 years and before that, PMR for 4 years.
Like Mrs Hobbles says, your body does get used to the high doses of pred and the side effects will lessen, not completely, but certainly get better than they are now.
The best piece of advice I can give you is to taper very, very slowly. I was pushed by my rheumy to reduce quicker than I wanted with resulting flares, and then of course back up to a higher dose because of the flare.
It's early days for you and I hope you start to feel better soon. Rest as much as you need.
Stay in touch with us on the forum. It's a very knowledgeable and supportive place.
hindags maria46264
Posted
I have no answer for you, but I have newly diagnosed PMR and have been on Pred. 15-20 for three weeks now. Feeling fine, BUT, have Silent Reflux and some headache associated with the reflux. I wonder all the time if the headache is really from GCA though it feels like my old reflux headaches. Omeprazole fixed the old reflux problems but 20 mgs BID can't seem to handle the Pred. I saw this tonight: http://www.ajnr.org/content/28/9/1722. It looks more accurate than the TAB. Has anyone heard of this approach to diagnosing GCA?
EileenH hindags
Posted
I'm sure it is more accurate - but it is a very expensive option and unlikely to be available in the UK without very good reason, such as a very complex patient. There would also be a regional availability problem and a waiting time - hardly helpful in GCA since pred will reduce the signs. I know that isn't really a good reason for it not being used but it is the practicalities that count.
hindags EileenH
Posted
Thank you for your reply. The radiological approach to diagnosing GCA isn't available to me though my Rheumy expects things will be changing radically for the treatment of PMR/GCA in the next few years. I could try to find a place and pay our of pocket, but now that I've been on the Pred since Dec 21, the results will be skewed neg. I find that it is hard to coordinate all aspects of treatment: PCP to monitor glucose and lipids; endocrinologist to manage osteoporosis; rheumatologist to manage the prednisone.
I've moved beyond worrying so much about GCA since my epigastric symptoms have lessoned and the headaches I get along with them have gone away. My ESR and CRP are normal and I've begun to taper from 20. Second week on 17.5. But how do I know whether the new pains I feel are from a "flare", from my body adjusting to a lower dose of Pred, (wrists now, but not bad) or from the fosamax I started 5 weeks ago after my FRAC score were assessed at 40 with the inclusion of Pred.
And now my PCP wants me on a statin because despite my ratios being ok, my LDL is 163. I'm not starting that for a while. I need to let the dust settle on the tapering process to see how my body reacts. Otherwise it's just too confusing.
EileenH hindags
Posted
My LDL is above that and I take no statin after a really nasty experience with one. I was on Lipitor for less than 10 days and at half dose and was almost in a wheelchair. It took some months to get back to where I had been the week before the statin. Never again - and that is with my cardiologist's blessing. She didn't even want me to try a different one.
Have you had a "cardiovascular event"? If you haven't and are female , then taking a statin has been shown not to make a lot of difference to experiencing one in the future. If you are male it is said to make a difference whether for first or second event.
The Dead Slow approach we bang on about on here all the time deals to a great extent with the difficulty of deciding flare/steroid withdrawal problem:
https://patient.info/forums/discuss/reducing-pred-dead-slow-and-nearly-stop-method-531439
In future I certainly wouldn't reduce in 2.5mg steps - you might get away with doing 1mg at a time without going as far as DSANS. But DSANS has worked for a lot of people to just steadily reduce to the lowest dose that manages the inflammation.
The Fosamax I can't help you with - as you know that is quite capable of giving you muscle and joint pain and there is someone on one of the forums who has just experienced it. Keeping the reduction rate low may be enough - if you have pain then you go back to the dose that was good. If the pain still persists you could suspect the Fosamax.
I do wish doctors wouldn't change more than one thing at a time - it's bad enough being given 2 or 3 drugs to start with. The side-effects/interactions are bad enough with just 2 together - the more the merrier. Or not...
hindags EileenH
Posted
Thank you so very much for this advice on the taper. I will call my Rheumy tomorrow. I'll see how I feel after trying to work out some of the acheyness with my strectching exercises today. Either it will be better, or worse. In either case, my gut says I'm not ready to go down another 2.5 come this Thursday.
Also thanks for the advice on the Statin. My PCP is willing to have me take a CAT scan to see how my coronary arteries are actually doing. He says that at 75, radiation exposure doesn't pose as much of a risk as for younger folks. One positive thing about getting older. The only one, except for wisdom I guess.
Thank you and this community.