My first flare

[allykat]

Hello everyone,

I posted this about 6 weeks ago.....

"I have done so well...diagnosed with GCA in April 2015 and have decreased from 50 mg to 5 mg in a very short time with no relapses. However, 10 days into my decrease to 5 mg (Christmas Day) I had a slight headache and my hair "hurt" neither of which caused me to take any pain medication. This went on for three days at which point I took an extra 1 mg of prednisolone and voila, 24 hours later my niggles were gone. I have also had terrible night sweats and a very stuffy nose especially at nighttime. Does this sound familiar to anyone? By way of background, my first symptoms of GCA were a headache which just wouldn't go away, a sore jaw, sore scalp, night sweats and a swollen artery on the side of my temple"....

As the slightly sore head went away, I reduced to 4 mg 4 weeks ago. Was doing fine or so I thought and then I noticed for about 4 consecutive days my jaw was very stiff in the mornings and this got a little better as the day went on after taking my meds. On the fifth day, it was aching and conveniently I had a doctor's appointment and told him. He took my blood and my ESR was up to 16 nothing like April 2015 when it was 44. I started back on 15 mg and within 24 hours or so, jaw is fine, no more night sweats and over heating and my sinus is also clear.

All this leads me to conclude that the night sweats and sinus problems were likely the first sign of a flare and I will now recognise this in future and not wait for a sore jaw or even worse, a headache which in my case was the final symptom last year and the one which caused me to seek medical help.

I feel I coped with the decreases until I got to 6 mg so here we go again and at a much slower pace.

Now if we could just do something about this dreadful Scottish weather as I feel sure a little sun would help!

[olive2709]

Snap, I went from 40 to 0mg in 15months 6 weeks later went back on 10mg. Only ever had head pain or so I thought from about 4 mg when I look back I went off the boil will be more careful when I get to that level again

[PMRpro Ambassador]

Don't know about the weather - we've had weeks and weeks of sun here in northern Italy but it hasn't stopped me developing (yet another) flare!

Careful though - I'd been down to 4mg when the first bits of the flare appeared (sore wrists in my case). 5mg seemed to soothe it enough but then I developed jelly legs when walking up a slope, then the sweats reappeared. I took 15mg the night before last - felt fine yesterday - so tried 12mg last and that isn't enough. So I'm back where I started again - it's officially PMR but there is a great suspicion it is really GCA given some of the symptoms.

Recently I found a German article that commented on a seasonality with GCA - and I realised it started in early spring and all my flares have been at this time of year too.

[allykat in reply to PMRpro]

Hello from a very blustery Scotland (so what else is new?)

I would be interested in reading the article to which you refer as I was diagnosed with GCA in April and first flare is now so may have some bearing.

Cheers

Kathryn

[PMRpro Ambassador in reply to allykat]

Where in Scotland are you? Have you had any contact with the Scottish branch of the charity - the oldest one of the four I think? I'm off to a conference with one of their ladies in May.

aerzteblatt.de/int/archive/...

Had a nasty moment when I googled it - it only came up with it in German and I assumed that wasn't much use to you! That should be the link to the English version - if it isn't there is a blue box to the right to click.

[allykat in reply to PMRpro]

Got the link and in English, thanks.

I am in Oban (no nicer place when the sun shines!) so getting to Dundee or even Glasgow is no easy feat.

Haven't really had any contact to speak of as I usually find the answers on this forum and a few other websites.

Cheers

Kathryn

[PMRpro Ambassador in reply to allykat]

I think I've been to Oban when it didn't rain... Do remember a lovely steak there!

We were at Uni in Dundee and often wandered west or north for a day out. But that wasn't yesterday. When we lived in the area properly we were working/had children so hadn't the free time in the same way. But our older daughter started going camping not far from Oban - at about 5 months of age after being born 2 months early.!

[DorsetLady PMRGCAuk volunteer]

Hi alleykat,

Sure you know what I'm going to say, sorry! Much too quick a reduction first time around.

The problem is we, and the doctors want us to be off Pred much quicker than is possible. As you know I'm sure, the Pred needs to get a grip of the inflammation firstly, which is does quite quickly, obviously if you're on a high dose, and then control that inflammation as you reduce. The trouble is you can keep reducing without realising if or when the Pred doesn't control the inflammation - until it's too late, and wham you get your aches and pains back. That why its recommended that you reduce slowly, there's a better chance (although not guaranteed) that you'll pick up slight changes in your wellbeing before it becomes a full blown flare.

Most people seem to think that PMR lasts at least 2 years before it burns itself out, sometimes longer, and one would imagine GCA has a similar life span, unfortunately there seem to be no concrete evidence to go on. But if you keep that timescale in mind it's not a bad benchmark. Anticipate it could be longer, don't expect it to be shorter!

I was diagnosed with GCA in April 2012, started at 80mg for reasons I won't go into (most people on this site know why), and am now at 2mg. I did have to increase my dose during a very difficult time (husband dx with liver cancer, died 5 week later) - the only indication being raised ESR levels. I've been fortunate enough never to have a flare in the normal sense, and I think that's due to my slowly, slowly approach. (touch wood, fingers crossed etc)

Rest assured it's not only the Scottish weather - this morning it was gorgeous, this afternoon its lashing down and blowing a hooley!

Good luck with your current reduction plan.

[allykat in reply to DorsetLady]

Hi Dorset Lady

I do know your circumstances having seen the article which appeared in the Daily Mail last May. It was very topical for me at the time as I was diagnosed with GCA in mid April. I was very keen to read anything and everything to do with GCA.

Your reply has really made me chuckle as shortly after I wrote the post, I told my husband I expected to get some "I told you so's". You haven't disappointed me! I just wanted to the be the one who conquered all in a very short time.

My doctor is going to phone me tomorrow and we will discuss where we go from here but I think 4 mg is a long way off.

Thanks for your comments

Kathryn

[DorsetLady PMRGCAuk volunteer in reply to allykat]

That's me ! Jump in with both feet! I'm not unsympathic, just pragmatic I suppose - we all want to be free of both GCA and Pred, but unfortunately it doesn't work like that - mores the pity! Take care. Sue

[lesley2015]

Well done you, I was diagnosed in June with pMR and GCA and still at 17.5mg, so far cant get any lower, tried once at 16mg and had a flare, due to try again in a couple of weeks so fingers crossed.

Like you I feel in in my jaw, temple and head - and I now recognise it easier (although sometimes mentally I think I try and ignore it. The PMR usually is my shoulders and neck but gives a general stiffness also.

I would love to be at 5mg where I am told the moon face will go - I really struggle with it.

Best wishes.

[PMRpro Ambassador in reply to lesley2015]

It depends on the person as to when the moon face goes - mine went much sooner than 5mg but I know people who lost no weight at all until fully off pred.

Do be careful - to be below 20mg in just over 6 months is amazingly fast in GCA and believe me - being patient and accepting the current dose is far better than to get lower and having a flare leading to having to go way back up and starting over again.

[lesley2015 in reply to PMRpro]

Thank you. I will try. I get sooooo frustrated by it all - a plus side maybe the condition will teach me patience! But i really don't want to go up again so will take it very slowly. I Am at 17.5 and want to get rid of the .5 - I was going to try 16mg but think I will just drop half to 17 rather then risk it.

[PMRpro Ambassador in reply to lesley2015]

I think that is a very good idea - I found long ago that while I was fine at 18mg/2 days, I wasn't at 17.5mg/2 days. I couldn't believe how 1/2mg could make such a difference! It still does!

[lesley2015 in reply to PMRpro]

Yes I think I am just realising that- but they are tiny tablets!! It's hard to believe they can make so much difference when talking about .5mgs!

[PMRpro Ambassador in reply to lesley2015]

Haha! Poison comes in little packages too remember! I have one tablet that makes my pred look enormous!

The size of a tablets hasn't got a lot to do with how much "stuff" is in it - much of it is filler to make an identifiable shape. Some of that is for marketing - bet you know what a blue diamond-shaped tablet is if you see a photo? And some of for identification purposes. Which particular small round white tablet did you mean madam??????

[lesley2015 in reply to PMRpro]

not sure about the blue triangle, explain please ........... lol. Yes I know what you mean - I work in a vets and clients actually do ask for white tablets !!

[PMRpro Ambassador in reply to lesley2015]

Viagra - little blue tablets with rounded corners, quite an iconic image!

Yes - you know doctor, the white tablet for my heart...

[Maxine-59]

I am in 15 mgs Pred and Meth 10 mgs about to increase the mMeth to 12.5 mgs. GCA Temporal artery and pulseless in both arms as large vessels affected there. I saw Prof Mason who is working with my Rheumy which is really reassuring. As I sit here though I am sweating, I never know what are side effects to Pred or what is GCA, but slept a lot over the weekend. Much as I am desperate to get off Pred I feel there is along way to go given I was only diagnosed in Sept. slow but sure but it is hard to take isn't it.

I sympathise with the weather though having crossed the Solent on the Isle of Wight ferry last night it was very lively !

Best wishes

Maxine

[paddyfields]

Given the similarity of withdrawal of pred symptoms and pmr, how long do you leave it before deciding that the current aches and pains are a bit of a flare? I started a reduction to 4 and a half from a maintenance dose of 5 mg and within 3 days my right hip (tendons?) seized up big time. I tried increasing temp. to 15 mg for a few days but no magic so back to 5 mg and as it was one side, I thought I must have twisted it without realising .

Three weeks later I still have problem with that hip but again after reducing to 4 and a half the following have set in after only three days: bilateral stiffness in the hips, shin pains, and the fluey/stuffed up symptom which comes on about 8 or 9 pm. I have never had bilateral upper body muscle problems but at its worst when feeling really ill, the fluey aches was were over but the hip area seized up both sides.

[PMRpro Ambassador in reply to paddyfields]

We have suggested for several years now that if the pain starts the day you reduce, i.e. immediately you have offered your body a lower dose of pred, then it is most likely to be steroid withdrawal problems, especially if it then fades over the following few days. Some people take up to a couple of weeks to get used to the new dose.

If, on the other hand, you reduce and feel OK for a few days and THEN niggles appear which increase with time, it is far more likely to be the fact the dose is simply not quite enough to do the job of managing each day's new dollop of inflammation and it is beginning to creep up on you.

That is part of the idea of the Dead Slow... approach - you only ask your body to cope with 1 day of new dose at a time for several times, returning to the dose you know you were OK at in between. Add in the smallest drop you can manage easily and maybe your body won't even notice. The bigger the % change you are asking your body to accept, the more likely it is that it will protest. By removing the likelihood of steroid withdrawal pain - it is less confusing.

But really, if it is getting worse not better, it is probably a flare.

[paddyfields in reply to PMRpro]

Thanks PMRpro. I will cut and paste this as I should have remembered it. I'm going to ask the GP for some two and a half mg tabs to add to the 1 mg and 5 mg's I've got so I can alternate daily 5 with 4 and a half for, say, a month and so on. Does this seem a reasonable plan? I see the rheumy in June I had success down to 5 mg with the regime where you gradually increase the days of the lower dose and vice versa the higher but got in a bit of a muddle with it once or twice. I got down to 2 mg (but with symptoms) by the last appointment in Occtober and I was quite happy to go along with the rheumy's suggestion I go back to the 5 mg when I had last felt good. Sorry to hear you have had a flare

[PMRpro Ambassador in reply to paddyfields]

If your 5mg tablets are plain white uncoated tablets all you need is a pill cutter from the chemist and that will also allow you to cut 1mg tablets with a bit of practice, many do. It isn't a good idea to mix enteric coated and non-coated tablets if you can manage well with ordinary ones as they release over different times - enteric coated can take up to 7 hours to be absorbed whereas uncoated are absorbed within a couple of hours.

[paddyfields in reply to PMRpro]

PMRpro Its difficult to know how much to ramble on but the chemist thinks he can get hold of non-coated tabs. If not I do have a cutter and might try to get a better one as its a bit hit and miss.

[30048]

I am in my fourth year of GCA. I wish someone had told me that 50% of people with GCA NEVER get off prednisone AND that doses under 7 Mg. . Will not hurt you and may keep you from having a flare. The pressure to reduce what your body needs, as long as it is under 10 mg. is counter productive. The doctors know that .....so what is their problem ? I have not read the other replies as I have pretty much lost my ability to read so I apologize if I am repeating other peoples's knowledge. You have to monitor your symptoms and stick with the dose that works. AND as far as I am concerned tell the doctor to go "pound sand"

[allykat]

Just to be clear, my doctor has never pushed me into reducing too quickly. I have seen him regularly throughout and have complete confidence in his approach. I had no problem with reductions until I got to about 7 mg or possibly even 6 mg. It was likely my own eagerness to be at 5 mg by Christmas that caused the flare. I realise these are magic little pills and I can't be without them. However, I worry about what they are doing to my body and this drives me to get the the lowest dose possible which still manages my GCA.