Hello I am new to this site,
has anyone had a flare of GCA with a normal ESR,? mine was 11 and CRP 8. so my GP said" I wasn't having a flare," even though I was getting all the symptoms. I have had GCA for 14 years on and off [ more on than off ] so I think I know a bit about the disease, I upped my steroids myself, and feeling better.
Apart from all the usual symptoms of GCA with this last flare I had a lot of chest palpitations with pins and needles in the arms and legs.
Hello bowler and welcome as a first-timer!
If your ESR and CRP symptoms were raised at diagnosis then it's probably likely that the same would apply during any flares, though not necessarily cast in stone.
I was lucky not to suffer flares relating to GCA - once that was controlled with 40mgs it seemed to remain that way down through the doses. However, it was a different story with my PMR symptoms and all the flares seemed to be more in connection with that.
It was my experience to suffer palpitations and pulse all over the place when I commenced on 40mgs and I ended up in A&E as a result.
If it was me, I would ask your GP to refer you to a rheumatologist - it is not wise to be left to your own devices and upping your steroids to GCA-required doses on your own, especially where GCA is concerned. If still suffering after 14 years, you should be under the care of a rheumatologist anyway. I do wish you well.
Thank you for your reply.
I am under the care of a rhematologist, but my next app. isn't until May.
I was just curious if anyone else has had a flare of GCA with a normal ESR. As in the past mine has always been raised. [ maybe it was a false reading on the blood test from the hospital?] I know if there's not enough blood in the phial they cant get a good ESR result, who knows?? I was also curious about the pins and needles which I have never had before, which have now subsided since raising the Pred. !!
However I seem to remember that the rheumatologist said "to treat the symptoms, not the blood test"!! so thats what I did this time. And of course our GPs cant know everything, but like most patience we dont like to go against what our GPs. say, but this time I had to go with my gut feeling/ experience over the 14 years of this awful disease.
I started on 60mgs. of Pred in the first instance [ 14 years ago ] which was tapered down over many months to maintenance dose of 5mgs. I was fine for several years till the hospital decided to get me off Pred. completely, then everything started to go haywire and flare up again, since then I have been on a roller coaster, even tried methotrexate which didn't suit me, and put me in hospital over night.
I was told all those years ago that the GCA and PMR should burn itself out after a couple of years, it's a big fire!!!
I dont get as many flares of the PMR as I do the GCA. it's strange how we all differ with the same illness.
Anyway thanks for sharing your experiences.
I also wish you well.
Hi Bowler, I was diagnosed with GCA in May, 2012. My mother had it and passed away five years after the diagnosis. She was 74. I am 61, now. I wanted to be tested for it, in Feb., 2012, when I had a horrible headache and high C reactive protein (I remembered the symptoms from helping her with her illness). My sed rate was normal. They would not do the biopsy for GCA. They said I was too young, it was very rare for anyone at 60 to have it and my sed rate was normal. Because I had other markers and this headache was very different than the migraines I had been suffering with for years, I was very worried. They would not do the biopsy.
In May on a routine visit to my neuro surgeon, he read the reports from the ER visit due to the February headache. He said, " I think you may have GCA, I would like to do a biopsy, would that be ok with you ?"
Well, yes, it would be ok -- I said. They did the biopsy a week later and yes I had GCA, enlarged, giant macrophages which had burst the cell walls.
My sed rate was normal. Throughout dealing with this disease my sed rate has often been normal. Once or twice it was high, but usually normal. My c reactive protein has been as high as 13. I am usually treated for flares at that point.
From my experience, would try to insist they hear you, on what you think is going on with your body. Untreated, as I was for awhile, I could have lost my eyesight, -- because I did not "have all the markers" of GCA, temporal arteritis !
good luck, health
all my best,
Whittlesey, NYC U.S.
Hi
Thank you for your reply, I almost forgot what I had posted, as it was 9 months ago !! however better late than never.
I think like I stated before the Dr said "better to treat the symptoms and not the number"
I was diagnosed at the age of 54 [ 14 years ago ] I did have a biopsy but it proved negative, however the symptoms pointed to GCA even though my ESR never went above 40 [ which isn't considered high ] so I was started on the Prednisolone,
however my CRP has always been slightly raised.
I also have PMR. Unfortunately I am still on the Pred. dont think I will ever get off it.
I feel the long term of taking Pred. has given me many side effects. I now have Chronic Kidney disease, and heart valve problems, and anaemia,
I now have a bladder problem, and have an appintment for a Cystoscopy on the 23rd Dec. An early Christmas present !!!
I hope you haven't got the snow, I have just had a e/mail from sister in Virginia USA she has snow.
Have a good Chrstmas
bowler
Thanks, Bowler. It does seem that people have different combinations of this PMR and GCA. I have asked my former rheumatologist if I had PMR (my mother had both) and she said, no, she didn't think so. I have had incredible stiff necks and tremendous neck pain through all of this. I may well have it. I have a new rheumatologist, initially from Russia (she left when they were "letting" people of Jewish heritage leave) and she is very good. She says I have "Reynaud's syndrome" in my hands. GCA is one of her specialties. I am sorry you will be taking the prednisone. It may well be responsible for some of the conditions you have listed. really sorry about that. don't know how much research they are doing on GCA and PMR, they are rare, it is said.
Thanks on the snow. Yesterday, we had some, rain today and a few inches are predicted for tomorrow. I grew up in Connecticut, so it doesn't bother me that much. Virginia often gets snow when we don't.
Thanks.
all my best,
good luck with the conditions,
Whittlesey
I was diagnosed 9 years ago at the age of 40.The doctors said that i was too young,but my mother has it too.Last year i was given azathioprine to reduce the steroid amount that i was on,but ended up in isolation for 9 days due to Neutropenia,i have found it hard to deal with and had to leave my job as the conditions at work would make the Gca flare up.
Hello again bowler
As you are under the care of a rheumatologist, are you not able to bring your appointment forward in the case of a flare? I was lucky in that my hospital had a helpline to a specialist rheumatology nurse and if she felt the a phone query was serious enough, she would seek the advice of the rheumatologist.
What a shame that although you felt fine on the long term 5mg dose, you were advised to come off Pred altogether, only for GCA to return (I assume you didn't go straight from 5mg to zero though?).
5mg was a sticking point for me and after one flare necessitating an increase back from 3mg to 10mgs, once down to 5mg again, my rheumy kept me there for 5-6 months. I then tapered in just half mg decrements, starting with the the first week taking 5mg dose for 6 days and the new 4.5mg dose for one day, followed by 5 days at 5mg and 2 days at 4.5mg etc, taking about 7 weeks in all to reach 4.5 each day. I then repeated the same routine until I reached zero. A snail's pace but it worked, probably because it gave my adrenal glands chance to reestablish their pre-steroid production of cortisol (natural steroid) again.
I do have two friends with PMR who are expecting to remain on a 5mg maintenance dose for llife. They are both men and do enjoy a good quality of life with no side effects (there are rarely any side effects, if any at this low dose). As you've successfully reached 5mg previously, hopefully you will eventually again manage to reach that level, at least. Best wishes
Hello Shirley
reading through some of my old messages, I realised I didn't respond to this message.? So I will just comment on some of it.
I haven't been given a helpline no. to call the hospital, [ Addenbooks, Cambridge ]
When they decided to get me off the Pred.[ I was on a maintenance dose of 5mgs.for several years ] I was told to taper 1 mg every 3 months, a very slow taper, however once I reached 1 mg. I had a flare, so I had to go back on a high dose.
The problem with a flare of GCA is, It usually means a much higher dose of pred. more than you would take for a flare of PMR.
I think once/IF I get back to 5mgs again I will stick with that, as I feel sure that after 14 years on Pred. my adrenals are not working as well. I was also told I couldn't have an adrenal test whilst I'm on Pred, as it could give a false reading,[ Have you heard this?] so how are us long term steroid users know if our adrenals are working??
I read that the treatment for adrenal failure is Pred. anyway ? all very confusing.
Pat
Thanks, Celtic. Will suggest this to my rheumatologist because I would like to really get off the medrol if possible. She is giving me intramuscular injections of methatextrate 20mgs once a week and I rarely get headaches or any of the other symptoms of GCA (am careful, I know it's there). even a lowered dosage would be fine with me, 3mgs or 2mgs. I also take an aspirin a day.
Have read the research that methatextrate and aspirin may possibly substitute for the prednisone.
If I have a flare I take the increased dosage. The consequences are too harmful.
Thank you for your help, your answers and your information. This is a good blog, with good helpful posts. very needed. Thank you, so much. Happy Holidays, Merry Christmas and New Year
Whittlesey NYC U.S.
Hello Pat
What a blow to get down as low as 1mg only to have a flare, especially when you reduced so slowly as well, which should have given the adrenal glands plenty of opportunity to get going again. Having said that, however, they can still be getting up to speed even after we come off steroids, hence the advice to inform medics prior to any surgery in the following 12 months that we have been on long-term steroids.
In answer to your question about adrenal testing whilst on Pred, I do know someone who had her's tested as she was having difficulty reducing her dose. I don't believe she was told that being on Pred would give a false reading, but she was told after the test that she could expect to remain permanently on 5mg. As we are told that our adrenals should start kicking back in around the 7.5 steroid dose or just below, then I would have thought (though I'm not a medic) that testing someone anywhere below that dose would show some activity unless the glands were permanently asleep.
At least it must be a little reassuring to know that as you have reached 1mg in the past then you should be able to successfully reduce at least to 5mg again and possibly even lower.
Hi Pat,
Very bad luck for you to have had to cope with pmr/gca for so long, and to get right down to 1mg and have a flare.
I am on 7.5mg of pred at the moment and therefore, teetering on the brink when it comes to waking my adrenals up, and this is the 2nd time. Last summer, I got down to 6.5mg and it just didn't work, so had to up the dose to 10mg and begin a slow reduction again.
I have had PMR for over 2 years now and was put on a starting dose of 30mg which worked like magic and cured the pain in 3 hours. A year ago, whilst on hols in Wales, I had a complete relapse and also was showing symptoms of GCA. I was taken straight to the local A&E and the doctor I saw, who understood these illnesses very well, put me back on 30mg. It worked and I was able to enjoy my hols. The doctor told me that he has quite a few patients with PMR/GCA and he often keeps some of them on a maintenance dose of 1mg or so indefinately to avoid flares.
Having been on quite a high dose of pred twice, I would say that the drug can give many diverse symptoms on the higher doses such as palpertations and tingling sensations. I think we must be prepared for almost anything when it comes to side effects.
Prednisolone is an artificial form of corticosteroids - if you see a diagram of it's chemical form, it is almost identical to that which our adrenals produce, but, sadly, not quite as good. It is also 4 times as powerful as the natural steroids we make.
We produce between 20mg and 30mg of steroids depending on what our body is demanding - therefore, 5mg of pred is equal to the lowest dose we make (20mg) and 7.5mg is equal to the highest dose we make (30mg).
When we have been on pred for more than a few weeks, our adrenals just go to sleep and that is why when we get down to 7mg we are nudging them to wake up. I suppose, the longer we've been on pred the harder it can be to get these glands working again. 5mg is often a tricky dose for obvious reasons, and if the illnesses are even slightly active they may flare.
It seems to me that as you have such a long history of GCA especially, your doctors would be wise to just keep you on a low dose again. It's so sad to know that 5mg was working and then you continued to reduce so carefully and BANG, it was back. Poor you!
Maybe your adrenals are not quite up to scratch now and need a little help, but as the lower doses of pred produce virtually no side effects, try not to worry about taking it. After all, corticosteroids are essential for our bodies to function and if we can't make them, we must take them.
Best wishes, Pats.
Hello Pats
I'm only hoping that once/IF I get down to 5mgs again I can stay on that dose, as I really feel that 5mgs the lowest I can go.
I was put on methotrexate for a while to help with the taper but that didn't suit me and put me in hospital over night with chest pains.
These pins and needles in the arms/legs that I'm getting I have never had before, even on high doses of Pred. and I've been on high doses almost every year with the flare ups.
I also know that as GCA is a type of vasculitis it can affect other vessels of the body
I'm probably reading too much about it and frightening myself!!!
Steroids have also given me high b/pressure, and the blood pressure meds. have given me kidney problems, I call it the "devils drug" but we cant do without it can we??
Thank you for sharing your experiences.
Take care
Pat
I had an adrenal function test in March 2012 when I was on 20mg Prednisolone. As far as I'm aware, if you are already taking Pred, they allow for the amount and calculate on the rest. They certainly did that with me.
My test showed only what was expected - that I have no adrenal function - so it will be @5mg for the foreseeable future. The test itself is no big deal, but tedious as there is a lot of waiting around to be done.
Over the years I have picked up a number of other goodies to go with the PMR/GCA and steroids, but I know that I have been very lucky in some respects, All things considered it could have been very much worse.
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