Diagnosed Feb with PMR. March with GCA. Started on 60mg.
Was at 45mg 8 days, after up and down trying to taper, going well (I thought) rheumy wanted me to taper, started to have temple/scalp headaches, not severe but very troublesome, head on pillow hurt. Back to 50 feel ok for one dose and then rheumy wants me back down to 45, did ok 10 days then same headache/scalp tenderness.
Went back to 50 yesterday. This morning I took my split dose of 37.5mg and will take next one tonight. Not sure what dosage I will take, either 7.5 or 10 or 12.5 to make up for an adequate dose. Maybe see how I feel today? Then try to stay at that dose until stable???? Then if no symptoms start tapering again? It seems I always start to have temple/scalp tenderness around 8-10 days and I think it is gca rearing its ugly head. And then I start back up the ladder. At this rate I will never reduce. Does it sound too fast? GCA symptoms are temple/scalp pain, right? Steroid w/d is mostly headaches, right? Or niggles maybe also. I can ignore steroid withdrawal symptoms, right? Maybe see if tylenol helps and if it does then it's steroid withdrawal. I know the symptoms sometimes seem to overlap, and it confuses. I am truly at my wits end.
Sorry for such a long post.
Your suggestions are much appreciated!
Trying not to panic.
Written by
gtate1914
To view profiles and participate in discussions please or .
I might add that I see my rheumy this coming week. She will probably be very unhappy with me for managing my dosage but its not easy to get in touch, especially on weekends.
Sorry to hear you’re still having problems. If it were me I’d be inclined to take 50mg again today, don’t think that being at a raised dose for just one day will cut the mustard if it is a flare.
No panic- you will reduce, but and its a big BUT -you need to get your symptoms properly under control first, and I don’t think you have been allowed to. All this toing and froing is doing you no favours.
But when you see Rheumy you need to have a frank discussion about tapering and what you can and can’t do.
You are right that sometimes it’s easy to confuse steroid withdrawal and a flare, but if problems start almost immediately from you reducing and are helped by OTC painkillers is most likely to be withdrawal symptoms- so stop worrying about them. If it takes a week or so to materialise then a likely flare because the dose is not high enough. That’s what yours sounds like, so impress that upon Rheumy!
Steroid withdrawal will start immediately you drop the dose - pain that starts after 8 days is much more likely to be the inflammation breaking through. And they can both be ALL of the things you suggest - that is what makes it so difficult. And why we bang on about SMALL reductions - 5mg every 2 weeks that works is the same speed as 10mg per month.
Personally I'd say your rheumy is creating the problem to some extent. One day of feeling OK after raising the dose is not long enough - you need those symptoms under control for at least a week. You are teetering on an edge and she's pushing you back in the water each time. The reason you are still where you are is because of the flares and never getting things securely sorted so the baseline level of inflammation is high and it doesn't take much to get to a level that causes symptoms.
has a suggested reduction plan for GCA (on p 346). They keep patients at 60mg for a month and then drop 10mg every 4 weeks PROVIDING there is no return of symptoms. Flares of GCA are very common in the first 18 months - and flares are mostly caused by reducing too far or too fast.
And your rheumy can be unhappy all she likes - unless she is willing to be available 24/7 then what are you to do? Some do give GCA patients a phone number for weekends, I have no doubt her claims from the insurance would cover it. PMR and most other rheumatological illnesses don't cause emergency situations in the way a flare of GCA may be threatening sight. It is unlikely at these sort of doses, but never say never.
So if 50mg seems to take care of the symptoms it would be a good idea to stay here for 4 weeks then begin the taper from DorsetLady of introducing the taper slowly over a time period of 4 or 5 weeks? I just need a plan! Thank you.
Having read her reply, I think DL (who has the t-shirt) and I would both say you need to stay at a dose that works for at least a few weeks before reducing again. You have to convince your rheumy about that to have the pills to do it.
But it is clear her approach so far doesn't work does it?
No, it hasn't. She naturally wants me off as quickly as possible but not as much as I want me off as quickly as possible. I see the need to go at it slowly. The pred will probably get me before the disease does.....
So if 50 seems to be the right dose staying here a few weeks without symptoms of temple/scalp/head aches I should be ready for a slow taper and perhaps DorsetLady's way of introducing that would be a good way to try. I have been doing only 2.5mg. I wonder how a 5 mg reduction might work under those circumstances of going s-l-o-w-l-y at that higher dose using DorsetLady's plan ..... ?
In common with up to 20% of patients with PMR/GCA. Though apparently they can be low for the first 6 months - and then rise.
Everyone wants off pred asap - but the rheumy or the patient has no say: GCA holds ALL the cards. You will be able to reduce as it allows. If you were struggling with 2.5 then start at 2.5 again. But I really don't think it was withdrawal - the dose was too low. There are patients who need more than 50mg to clear things out - ask mamici.
Yes, and now I'm experiencing more symptoms this morning with my 37.5mg morning dose, think I need to up it. Am considering taking dosage all at once instead of morning and evenings. Maybe 52.5mg to see if it works.
Thanks for yours and everyone elses invaluable input.
The received wisdom is that in GCA the dose should be taken all at once and not split - it achieves a higher peak in the blood which may well have a better effect on the inflammation. Why did you start splitting the dose?
I did find a paper that found in a small study that it didn't make any difference whether the dose was split or not - but it is also going to depend on the dose given being plenty to clear up the inflammation. You do have to use which works best for you - but you are obviously not on enough to clear the inflammation.
Sure sorry to hear you are at your wits end. What end are the wits anyway?
I told my doc once that I don’t care if I am in pain but if I have a headache with the jaw pain and scalp pain well I don’t want to go blind. It is one thing to be so sore you can’t move but GCA is a whole other thing. I have been on this ride for 2 1/2 yrs and got down to 10 crashed and burned and now seem to be settling at
12.5. My rheumatologist said he thinks the GCA is gone but I still have this slight niggling over my right temple so who knows.
I going to say something which you may not like, but it’s got to be said, so here goes -
I think you and your Rheumy need to get your heads around the fact, unpalatable as it may be to both of you, that this is not going to be a quick journey.
Most people who have GCA probably have a 4 year journey approx, may be quicker if a steroid sparing drug is introduced, but that’s not 100% proven as yet.
So if that’s the scenerio then there is little point in trying to reduce too quickly, all you end up doing is flaring! Which in your case has already happened. End result - you actually end up taking more Pred, not less!
From diagnosis to end of Pred took me 4.5years - reducing slowly. NO FLARES! Add in my 18months of non-diagnosis that equates to almost 6 years in total. I do believe my GCA went into remission before I reached zero Pred, but I’d still say 5.5years.
I probably could have decreased slightly quicker, I don’t know, but what I do know, apart from very early days my journey with Pred was relatively easy compared to many on here.
I would reiterate what PMRpro says - monthly reductions PROVIDED no return of symptoms. You may be able to do 10mg initially once symptoms controlled, but once you get to about 30mg you need to be thinking about 5mg drops.
I think it is improving - in the UK at least. There have been at least 3 cheering posts this week! And even one of the big guys informed me last week he always learns something from me in an appointment!
Thank you guys for your replies. I do agree with you. GCA controls the ballgame and slowly is the way to go about it. I came into this knowing absolutely nothing and accepting of my rheumy who insisted on quickly tapering because of what can happen to me being on high steroids. We will have a discussion this week. Meanwhile I'm trying to ascertain at what dose I can control the inflammation. It doesn't appear to be 50mg so I will try for 52.5 and if that doesn't seem to be it then 55 next. How long would you suggest staying at each dose to see if it works or not? A day?
I will begin all at once tomorrow morning. Splitting was at the suggestion of the rheumy.
Maybe I will do 60mg, really hate to go up that high, 55 sounds better to me tomorrow arghh! ....and stay until no symptoms, at least 3 weeks. Originally in March I was on 60 for 2 weeks then drop to 50 which on day 8 flared and then I was bumped up to 80mg for 3 days then back to 60 for 9 days doing ok, then to 55 which on day 8 was a flare again ...... should have stayed on 60 until inflammation controlled....which of course resulted into another flare. Story of my journey. Thanks for listening.
Well that should tell you that 55mg however good it sounds is not enough! If it were me I’d be inclined to try 60mg if that controlled things before. But you do need to discuss with Rheumy- you obviously can’t go on as you are.
"should have stayed on 60 until inflammation controlled."
Exactly. You haven't stayed anywhere long enough for your poor body to know wher eit is. Ask mamici!!!! You didn't need 80mg - you needed to be left at 60mg to settle down.
That's just one thing I telling my rheumy this week. I'm going back up to 60 tomorrow morning. Will be an interesting visit....... am bringing a friend with me.
I am so glad that gtate1914 has found you and DorsetLady so fast. I would probably have two seeing eyes if I had known of you both sooner.
gtate1914 -- 60 mg for a while (a couple of weeks, say), and see what happens to the symptoms then - Do as the lady says! - and certainly stop hopping up and down and thinking you will see the result a day or two later.
Hi gtate, just wanted to send you my support. I hear you. I have been mucked about so much with pred and was even on 150mg or 200 for a couple of days when they thought I was going to lose my sight. It meant that for six weeks I didn't drop below 25mg and was on 75 for a while. Very difficult to work out what is doing what.This forum has been a life saver. xxx
Oh! dear G, it really sounds like you`re having a bad time of it. In real terms, I`m fortunate to have a good consultant who hit my problem hard straight off then left me with a plan to follow for 18 months. No tapering for the first month then 1 mg per month. This is working. Dropping too quickly really is a bad practise. Have a heart to heart with your consultant.
You are so early on in your illness you can't reduce as quickly as your Rheumy wants. You haven't been allowed to settle on any dose long enough to let the inflammation settle - and splitting the dose doesn't seem right for GCA either. The way she's trying to rush you is giving you untold stress because it's not working and it's not good. A rule of thumb is to go back to the previous dose you were symptom free on and stay there until they've really settled, might be one//two weeks or longer, we are all different, use the tapers as a guide only and adjust to what suits you. The key is not to rush and I can see what you are up against with your current Rheumy. You need a discussion with her around her rationale of a quick reduction of steroids due to causing other issues v Blindness - if that doesn't make for a change of attitude then see someone else. In the meantime go to a dose that eases your symptoms and stay there until they settle.
As has already been said, knowing the difference between a flare and withdrawals is key early on and is difficult as the symptoms are the same, but you will get to know your body. Withdrawals will come on immediately but should settle after a few days to a week. A flare can come on later as the inflammation starts to rise because you are not on the correct dose. You will recognise them as you pre-diagnosis symptoms. I've suffered them all the way through since diagnosis in March 2014 and it's taken me 4 months to get from 5mg to 4.5mg but it's a step in the right direction, if I reach a stage where symptoms start to return I'll stay put. I will say also that the lower you get the slower the taper. Just to reiterate listen to your body and that is the best advice I can give you. Also it might be a good idea to take the taper methods you've had sent to you on here and see what she thinks, it's far easier than words sometimes, as long as she reads it! Leave her a copy! ATB.
I took 60 mg this morning 3 hours ago, feel better, but still feel not totally symptom free yet. If this is the right dose, should they be all gone by end of the day or might it take a little longer? I don’t know. In checking my skimpy diary I kept when on 60 mg, which was only 13 days before reducing to 50 mg, [insane) I saw that I was not totally symptom free even then. I wonder if I had remained longer at 60 would symptoms have eventually ceased. I would guess not? Because it’s the wrong dose? I really want to get it right this time.
No - give it a few days. Not everyone gets a magic response but there should be a noticeable improvement in a couple of days. Some people never do achieve total freedom from symptoms but they should be stable and the blood markers (if it applies) should be falling steadily. DorsetLady will know more about the speed than me though. I'm sure that there are people who need a week or two.
I will, thanks. You say some people are never achieve total freedom from symptoms? GCA type of symptoms only very slight?.only just niggles etc?
I’m trying hard to wrap my head around this. Hard to know what to ignore and what to eliminate.
I was 13 days on 60 back in March and was not symptom free though I felt pretty decent for the most part but looking back I was not stable. Then rheumy had me go to 50 which flared within a week.
Anything left should be fairly stable - definitely not getting worse. Some people need even more - though that is usually when they have visual symptoms. The purpose of the high doses is to combat the inflammation quickly to remove the risk to sight. Then you have to be sure the ongoing inflammation is being cleared out every day - if the dose isn't enough it will mount up and the symptoms will worsen. I think Snazzy was a while before pain went - but you would have to ask. It is a holiday in the UK today and not raining like yesterday - everyone is probably making up!
Has your rheumy mentioned using Methotrexate as a steroid sparing medication? I know many on here are sceptical about it and that some have had nasty side effects, but I genuinely feel that it has helped me to taper the pred. I was a bit further along the reducing path than you when twice I got to 25 mg per day and had nasty sudden flares in GCA. The second time, just after last Christmas, I was given the Methotrexate and since then have gradually reduced to 15 mg per day without mishap. Mind you, I do realise that my reduction is far more gradual than some others, so no doubt that helps too.
Yes and I took it for 3 months, did not see a benefit but had side effects including bad acid reflux. But the reason I have not been able to reduce is because my inflammation has never been totally controlled ,even from the very first at diagnosis. I was not knowledgeable about the disease but just trusted the doc to know her business.
Wow... I know its tough...I have been 3.5 years going down this same road..PMR, GCA & RA my reductions have been ever so slow but without any bad flares... my rheumy says I know my body better than anyone if I don't feel good about a reduction I don't reduce.. I have stayed on certain doses for months because I enjoyed feeling good... I also reduced each time by one day old dose one day new dose and don't care how long it takes... its better for me that way because sometimes when you flare you have to go above your old working dose to get any relief.. so to me slow is a no brainer...I am currently on 2 MG and have been there 6 months now... and even trying 2 one day and 1 the next my body says "not right now Diane" ...I am a good listener and will only reduce according to my needs...I am hoping to be off by December but I said that last year too... so whatever it takes.
Everyone wants to be off this horrible stuff but I am also thankful for it and I know my day will come. The good thing is I have saved my sight and probably other things I am not even aware of. Please be careful and very best wishes to you.
Would it help in reducing from 2 mg. to 1 mg. if you cut up a 1 mg. into tiny pieces and selected pieces to give you a dose of one and three quarters mg.? Very best wishes.
You seem to be yo yo in up and down. I think you are reducing way too fast. I was on 60mg to begin with....but every time I reduced (I think it was by 5mg in the beginning), I was on that dose for one month....now I am down to 5mg and reducing by one mg every month. I have had PMR/GCA for a year now....I fully expect to get a flare after 5mg or 4mg as it seems most people do. Ask your rheumatologist if you can go slower as you keep getting flares. Yes, the scalp headaches, back of neck pain etc are signs of GCA.
Yes, way too fast, I didn’t understand how the tapering worked, just tried to follow doc orders, big mistake, GCA symptoms need to be absent when tapering and not in a hurry...
Back up on 60 mg again, but I’m not sure if it’s going to be enough, still having symptoms, will give it a couple of days to see if it settles, but not being too optimistic at the moment. Will see rheumy in a couple of days.
It seems to me to be that your rheumy is trying to get you to a lower dose too soon. I was diagnosed with GCA nearly 4 years ago and was kept on 60mg pred for 4 months. I know this seems to be a long time but at least I didn't have the yo-yo experience you are having, and when I did reduce it was by 5mg a day for 1 month and so on month by month. As I learnt more and more about GCA, and gained confidence with help of this site and by reading about the condition, I took matters into my own hands, although still consulting with a rheumy, and reduced according to how I felt. I did have a few flares during this time and increased until the flare was over.
What a distressing situation you are in, my heart does out to you, but as others have suggested perhaps you should look for another rheumy - not easy I know from experience when you are feeling so down and probably muddled due to the pred - some appear so intent on getting patients to reduce thereby creating the situation you are experiencing. I do hope by telling you of my experience this helps and I wish you the best of luck.
I so appreciate your comment. I just got a call from my rheumy telling me to stay at 45 mg even though I just experienced probably my worse flare. I upped my pred to 50, no relief, to 60, some relief, today to 65mg much better but still having some symptoms, inflammation does not seem to be fully under control.. and by the way, my blood labs I had done on the 24th was "normal". I will be seeing my rheumy tomorrow.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
I don’t have to eat my hat!
What is the end like:)
No inflammatory markers in my blood You don,t have PMR
why is my hip pain so severe?
Relapse of GCA and GP reaction.
