GCA and frustrated

[mngirl]

Just came from the doctor. Inflamatory markers are up again. I just can not seem to get them down. This time I do have a cold last time a uti. It seems as soon as I drop from20mg I flare again. This has been going on since August. I was diagnosed by a biopsy in April. I think my doctor is frustrated too he suggested a referral to Mayo. We are going to try more frequent labs just to see if the flares are caused by not my feeling well. As soon as the cold is gone I will get it checked again.

[DorsetLady PMRGCAuk volunteer]

Hi mngirl,

Don’t know what dose you started on in April, but my guess would be you reduced too quickly between then and August. Okay it’s been unfortunate that you’ve had two other illnesses which would have put your blood markers up anyway, but maybe 20mg is the level your body actually needs at the moment.

If you feel okay at that level, and your bloods are reasonable, once you’ve got rid of UTI and cold, then stay at that level for a few weeks.

The reductions you make from there may also be too much - you don’t say what you’ve tried. If it’s 2.5mg or more then probably too much. If you can, then try drops if 1mg - not 100% sure what doses are available in US, where I’m assuming you are.

[mngirl in reply to DorsetLady]

I actually suggested reducing by 1mg and the doctor didn't agree. I am going to be retested as soon as I feel better(2 wks). I can get 1mg. and yes I am a Minnesota girl. In April I was diagnosed by opthamologist spent 4 days in hospital was given 1000mg IV twice then sent home on 60mg reduced every 2 weeks 50,40,35,30,25. I seemed to be ok until I hit 25 and a few setbacks

[DorsetLady PMRGCAuk volunteer in reply to mngirl]

Hi again,

Well having travelled down a similar path, I would say reductions too close, in that 2 weeks (although recommended in many plans) is not long enough to ascertain whether each level is enough. Sometimes it can take that long for your GCA to react.

You may well have been okay down to about 30mg maybe 25mg, most can get there provided the initial dose has got things well under control, but then it would have been better to go 27.5, 25, 22.5, 20 and maybe 3 or 4 weeks. But it is what it is, so now you need to get settled, hopefully at 20mg and then taper more slowly.

I know many doctor push for you to reduce, but unless you are very lucky your GCA is going to be around for at least another couple of years, so what’s the hurry! You need the level you need whether the doctor likes it or not.

Good luck

[PMRpro Ambassador]

"It seems as soon as I drop from20mg I flare again"

How is the flare being defined? By symptoms returning or just the blood markers rising? Even in GCA, if the inflammation markers are up but there is another reason they may be raised there shouldn't be a kneejerk reaction to raise the pred dose. The blood test should be checked a few days later to see if there is a trend upwards. With a recovering cold or now treated UTI the trend would be downwards.

You have also got into a yoyo pattern with the dose - which always causes trouble. And if the reduction steps are too big that also doesn't help. By 20mg they shouldn't be more than 2mg (10% of the current dose should be the MAX)

[mngirl in reply to PMRpro]

Thank you I wondered if the drop was too much. I have always had slow reflexes so maybe my system is slow to react too. I don't think the doctor liked to hear what I have been reading on line.The flare is not only the blood work but the headache too. I think he puts a lot of emphasis on the blood though. I don't always get the headache. I can usually tell by the little "stab" of pain I get in the upper corner of my left eye.

[PMRpro Ambassador in reply to mngirl]

Ah well - I bet people at the charity know as much as he does!!! Is this your GP or are you at least under a rheumy?

[mngirl in reply to PMRpro]

rheumy, maybe that is why he is referring me. I only live 2hhours from Rochester mn

[PMRpro Ambassador in reply to mngirl]

To the Mayo I assume? Now I'd go there to see Eric Matteson given the chance!

[mngirl in reply to PMRpro]

My doctor that Dr, Matteson is world renown. So here is hoping

[PMRpro Ambassador in reply to mngirl]

He is a hero of mine! He has just published work about the lack of bad effects of pred at PMR doses - something I have been saying for the last 8 years. Poor pred - it really doesn't deserve its reputation!

[DorsetLady PMRGCAuk volunteer in reply to mngirl]

Yes it’s true that more emphasis is put on blood markers by some doctors. However if you read anything on here you’ll see that they are not the be all and end all for a variety of reasons -

a. Many patient never have raised markers,

b. The readings can be affected by other things not just GCA. It fact they are only checking the inflammation levels - which could be raised by a virus, arthritis, a broken leg or (in my case) stress over my hubby’s health. When your body is under any stress whatsoever it goes into defensive mode, and inflammation is part of that, (for example -my grandson had an op on his knee on Monday, and all around is inflamed at the moment, so I’m guessing his bloods levels would be high)

c. The raised bloods very often come some time after a flare has already started.

That’s why we’re always saying “the symptoms are the key” - in your case the stab in the corner of your eye! You know your body better than anyone else, trust it to tell you when something’s not right. A sensible doctor should know and acknowledge that!

As for him not liking what you read on here, well, sorry, the internet and the information on it is a fact of life! So long as you are discussing it with him and not just ignoring his advice then so be it!

[mngirl in reply to DorsetLady]

thank you

[yogabonnie]

Keep us posted if you go to Mayo and see him. I will love hearing what he has to say!! I'm a MN girl also! (Saint Paul!)

[Kcartney103 in reply to yogabonnie]

Me too

[daworm]

Please update as to how the Mayo Clinic visit goes, as I am considering getting a referral to Mayo's myself..actually it is in our health care system so not sure I even need a referral....I will give this PMR till spring and if I don't think I'm heading in the right direction, it's off to Mayo's or U of Mich if nothing else at least for my own piece of mind...

[mngirl]

I had blood work on friday and esr 33 crp 1.85 (too high). Dr is going to consult with Mayo Monday. so we will see what they say. I thought I was feeling so good. I am beginning to wonder if something else is going on. I will keep you posted on Mayo.

[PMRpro Ambassador in reply to mngirl]

Both can be raised due to other things, not just PMR. If there are no symptoms a single raised value shouldn't result in a kneejerk raising of the pred - it should be repeated a week later to see if there is a rising trend.