Update ... GCA symptoms under control | Arthritis Information

Share
 

Am pleased to report that i am feeling a lot better today .. the 60 mg pred has really kicked in and i have had such relief from my GCA symptoms.

I can't get in to my rheumy til 5 th april, but dr said to drop down to 55 mg in 7 days and see how i go with that .. hopefully i can drop to 30 mg quickly, but as he said i'm the best judge of how that goes depending on how i'm feeling. he also said to take once dose a day now my tummy has settled, instead of 30 mg twice a day.
I had my fibro pain back last night, so obviously the PMR is under control ..
 
thank you for your support over the last week , it's been such assurance to have you close by.
 
 
So glad to hear you are feeling better.

the first appt available for rheumy was 5th april.. its not too long to wait.

Fibro is different from PMR and prednisone doesn't help at all .. fibro is more tendon ligament pain, PMR muscle pain, GCA artery pain .. all different so it seems.
 
Winnie
 
Phew! how good for me to wake up this morning and see better news from you. 
 
I'm sorry that your Dr didn't view GCA as the medical emergency it was, however, and arrange the rheumy appointment when you first presented with the symptoms.  Admittedly it is only a few weeks away now and thankfully the 60mgs seems to be working.
 
Although you are having relief from this dose, bear in mind the inflammation will not be under control yet but hopefully just the small drop to 55 after 7 days will sustain the improvement.  That is in line with my first reduction from 40 to 30 after 2 weeks but I was only given the go ahead to reduce by the rheumy as my blood test markers had returned to normal - the only way to really prove the inflammation is getting under control (unless you are one of those people whose markers don't ever increase with PMR and/or GCA).  My rheumy told me that if I could successfully reduce to 15 (depending on the bloods) that would be the dose which normally controls the inflammation and, in my case, he was right, although everyone can vary slightly around what is considered the 'norm'!
 
It must get very confusing to be suffering from Fibromyalgia as well although I expect you are well used to the areas of pain with that.  Another sufferer who I have met following posting on the UK forum also has Fibro and we have oft discussed how we feel there is a crossover  with these illnesses.  I understand that Fibro makes certain areas of the body painful to the touch and at one time both her and I had very painful-to-touch shins.  So with PMR pain being felt in the muscles and GCA affecting the arteries, there isn't much left of the body to be pain-free is there!  GCA is the more high risk one though because affecting the arteries, the giant cells can block those arteries leading to the blood vessels at the back of the eye, thus the high risk of the blood supply to the back of the eye being shut off resulting in sight loss.  Hence our concern for you.
 
I really do hope it's onwards and upwards for you now, Winnie - bestest of luck!
Snap Celtic - I  had such sore places on my shins with the PMR! My Bowen technique practitioner couldn't believe my yelps of agony when she touched them! I said recently - when I sat down with the tick lists for CFS, fibro and PMR when I was trying to work out what was wrong with me, there were several boxes that were common to all three - it was most confusing.
 
Some doctors believe they are spread out along a continuum - but PMR responds to steroids whereas the other 2 don't and fibro seems to respond in some cases to low doses of something that used to be used as an antidepressant - not because fibro is a mental problem but just because it works on the pain. Mind you - there are plenty of docs who don't think it is real and classify fibro patients as "drug-seekers" (especially in the US). As if being in pain wasn't enough.
 
Winnie - Glad you have finally got some relief. I'm still a bit bothered by the apparent lack of concern on the part of your docs though and that there will be no chance at all of confirming the diagnosis by biopsy by April. Good luck from here on,
 
MrsE
Winnie

The following may help you, it is extracted from the British Society of Rheumatologists Guidelines issued June 2009 on GCA (the complete guidelines are on the BSR Website, the NHS website and also PMR&GCA UK North East Support website).

5b)  Steroid reduction should be considered only in the absence of clinical symptoms, signs and lab abnormalities suggestive of active disease.

This should be balanced against the need to use the lowest effective dose, patient wishes and steroid side effects.

 

Suggested tapering regimen:

 

The dose may need adjustment for disease severity, co-morbid factors, fracture risk, patient wishes, and adverse events.

 

6) Low dose aspirin should be used in all patients with GCA, if no contra-indications exist.

 [Level of evidence 3, Strength of recommendation C]

Low dose aspirin has been shown to decrease the rate of visual loss and cerebrovascular accidents in GCA (OR 0.22, compared to patients not treated with aspirin) (39).

It might be a good idea to download and read at leisure.

i have been using low dose aspirin the last 2 days, it has made a big difference too.

today ive taken 60 mg pred at brekky instead of the two split 30 mg dosage , tummy is handling it good now. My eyesight has improved the last 3 days, i thought i was going to need new glasses but its been the GCA causing it and i had no idea.
So i'm feeling a whole lot better, apart from very tired
 
Its been so good to have you helping and supporting me .. It's so good to hear you are doing better!

I didn't know that it was okay to take aspirin with prednisone! Is that recommended to help with pain ?

Take care, Winnie, and keep up the good work!!!! freesia2011-03-14 20:23:22Freesia - it's low dose aspirin, one tablet a day - the miracle drug for heart patients! Not pain relief doses. Low dose aspirin is one of the things recommended for GCA patients longterm - see the end of MrsUK's post 2 or 3 up from here. It has an effect on the surfacce of the red blood cells  - not sure of the details - but it makes the RBCs sort of less sticky (all sorts of versions put out there like the "thinning the blood", by that I would understand the blood was being diluted  ).
 
Aspirin also irritates the stomach like steroids do which is why it's not recommended you use it for pain relief and some people are so sensitive that they can't take even the low dose meant here. If you can, it's good in this case.
 
MrsE
Thanks, MrsE. 
freesia
[QUOTE=MrsE]Freesia - it's low dose aspirin, one tablet a day - the miracle drug for heart patients! Not pain relief doses. Low dose aspirin is one of the things recommended for GCA patients longterm - see the end of MrsUK's post 2 or 3 up from here. It has an effect on the surfacce of the red blood cells  - not sure of the details - but it makes the RBCs sort of less sticky (all sorts of versions put out there like the "thinning the blood", by that I would understand the blood was being diluted  ).
 
Aspirin also irritates the stomach like steroids do which is why it's not recommended you use it for pain relief and some people are so sensitive that they can't take even the low dose meant here. If you can, it's good in this case.
 
MrsE
[/QUOTE]
you are a wealth of information mrsE , awesome having you on board!
 
today i'm feeling *odd* .. body isn't use to the 60 mg dose and i feel jittery inside and weak as a kitten . Have my temple pain back again today but it's early days aye.
Winnie
 
"Jittery inside and weak as a kitten" will most likely be side effects of the high  dose Prednisolone.  As one of the comon side effects of Pred is to increase blood pressure then that could contribute to the jittery feeling.  I would describe my "jittery" feelings at 40mg as feeling hyper.  The "odd" feeling you have could be how I would describe my early days too.  I used to feel slightly dizzy, sort of walking in a daze and was unable to focus properly on items on high shelves in the supermarket.  Does this seem similar to what you are describing perhaps?
 
However, "temple pain back again" - do not carry out your planned reduction to 55 after 7 days which you mentioned earlier - the inflammation is obviously not yet totally under control and you are definitely going to need longer at the 60mg dose.  If the pain is as bad as before the 60mg dose then I would suggest you get in touch with your GP asap.  Do give yourself some tlc and rest meanwhile.  My very best wishes.
[QUOTE=Celtic]Winnie
 
"Jittery inside and weak as a kitten" will most likely be side effects of the high  dose Prednisolone.  As one of the comon side effects of Pred is to increase blood pressure then that could contribute to the jittery feeling.  I would describe my "jittery" feelings at 40mg as feeling hyper.  The "odd" feeling you have could be how I would describe my early days too.  I used to feel slightly dizzy, sort of walking in a daze and was unable to focus properly on items on high shelves in the supermarket.  Does this seem similar to what you are describing perhaps?
 
However, "temple pain back again" - do not carry out your planned reduction to 55 after 7 days which you mentioned earlier - the inflammation is obviously not yet totally under control and you are definitely going to need longer at the 60mg dose.  If the pain is as bad as before the 60mg dose then I would suggest you get in touch with your GP asap.  Do give yourself some tlc and rest meanwhile.  My very best wishes.
[/QUOTE]
yes this is the same feeling you describe .. hyper. And yes that dizzy feeling too.
Will stay on the 60 mg til i see rheumy i think .. pain is nowhere as bad as before 60 mg so that is good. and i think i was expecting an over night wellness and thats not going to happen , but it will get better day by day .. i just have to cope with the high dose until then.
Winnie152011-03-16 02:36:04Winnie - good, I'm glad to hear the pain you described is "nowhere near as bad as before 60" so you now need to stay on 60 until that head/temple pain resolves and then stay on it for 2-3 weeks to get the inflammation under control.  If this means an extra week or so until you see the rheumy then I'm sure that wont be a problem and, in fact, by that time all being well he may reduce you straight to 50.  Not fun putting up with those "odd" feelings but rest assured that as you lower the dose they will improve.[QUOTE=Celtic]Winnie - good, I'm glad to hear the pain you described is "nowhere near as bad as before 60" so you now need to stay on 60 until that head/temple pain resolves and then stay on it for 2-3 weeks to get the inflammation under control.  If this means an extra week or so until you see the rheumy then I'm sure that wont be a problem and, in fact, by that time all being well he may reduce you straight to 50.  Not fun putting up with those "odd" feelings but rest assured that as you lower the dose they will improve.[/QUOTE]
thanks celtic .. im learning not to feel panicked with these weird feelings, good to know that others feel it too...i'm not alone .
i see the rheumy in 2 weeks now not 3, so thats good.. they had a cancellation :)
Pain levels are up today , teeth aching and sore, but still no where as bad as it was a week ago ..things are working :)
so it's been 10 days on the 60 mg prednisone so far and i have had an improvement the last two days with my PMR .. the GCA is a weird one i must say.
I have a lot of pain on right side of face , neck, head, temple, eye, forehead, jaw, tongue etc .. i can feel the muscles or arteries (?) tighten up and contract .. weird sensation, when i talk or chew it brings pain . I have two big lower molars that have been in constant pain all this week .. very distracting and dementing lol.  I find that a 300 mg asprin is helpful once a day .. perhaps it allows the blood to flow better?
Anyhow ... one more week til i see the specialist ..
i saw my rheumy today ..

i don't know what to say.
Basically the rheumy couldn't get his head around my age , 47 , people my age don't have PMR or GCA, so therefore he wouldn't diagnose me. He said because my symtoms had come on slowly it was unlikely to be PMR. He said people in their 70's get GCA and PMR but quite unheard of in a 47 yr old. And because i have fibro he was worried that i'd been misdiagnoised with PMR and was taking un-nessary high amounts of prednisone... so He said to reduce my prednisone 10 mg every week until i'm down to 10 mg then see him in 5 weeks. I'm to have weekly esp and crp blood tests until i see him.
I guess he is only doing his job and wants to know definitely whether i have PMR or not.

i said if we lived in the real world i would have seen been able to see him 2 weeks ago while symptoms were all still fresh without high pred intervention.I said my symptoms had improved since taking the higher pred dose, but he didn't seem to hear me.
I'm dissappointed and more than a little confused. I guess i'm just going to have to do as he said ,and keep a diary on how i'm feeling day to day..I must admit i'm apprehensive but i will have do my best..
 
i will be talking to my gp , it was difficult as i had two gp's .. two locoms. I Should have stuck to just one ..but he wasn't working on the day i had that terrible head pain. I still think Dr A hit the nail on the head with PMR and the 15 mg pred, but when he lowered it to 10 mg the following week was when everything in the head flared. Then Dr K said it sounded like GCA and hit the dose to 40 mg ..thats where it went pear shaped up to 60 mg. But rheumy just wasn't listening, he was annoyed that i had been given 'notes and results' but no 'referral' for him and admittely he had to wade through a whole lot of guff. So appt was prolly frustrating for him too.
though its good that he doens't want me taking high dose pf pred if i don't need to.... :)
i could be in for a rough ride tho
Winnie152011-03-30 21:56:09

Hi Winnie

I'm at a loss for words too.......at the way in which your rheumy has dismissed you as being "too young at 47 for PMR and GCA".  Also I fail to understand why, if he doesn't think your symptoms are due to PMR and GCA, he didn't at the very least offer to refer you for further tests such as CT scan.
 
Look at page 8 on this site "PMR in younger people" and you will see that sufferers have been diagnosed at a younger age than you.  In a very few case some sufferers say they were even younger when symptoms started and I'm sure Eileen will be joining in soon and will tell you that although she wasn't diagnosed 'til in her 50's, she was suffering with the symptoms years before that.  So although the incidence of contracting these conditions is low in people under 50, nevertheless it very definitely still exists.
 
I agree with what you say about not taking high doses of Pred if you really don't need to, but only you can say whether you are experiencing relief from the pain you were in a couple of weeks ago.
 
I hope you continue to improve if you are now going to follow his advice and reduce the dose by 10mgs each week but I fear that if you successfully manage to get to 15 then a drop to 10 a week later will be way too steep.  I certainly managed to reduce quite quickly down to 15 but once there I was told to remain there for a month with my rheumy adding that 15mgs is the dose that usually controls the inflammation.  Did you take a copy of the Guidelines we advised you to read to the rheumatologist?  If not then take them to the GP and hopefully he/she will be happy to act on them.
 
I do hope you are having a relaxing tlc day today as I'm sure you must have found it stressful yesterday and with a long journey to boot!
 
All the very best Winnie. 
Hi Winnie - I don't know what to say either! This is the result I was afraid of when I was encouraging you to go to a specialist as soon as possible because then they would have done a temporal artery biopsy and - hopefully - confirmed the dx.
 
The guidelines have been revised to say "from 50" and if he really believes that only over 70s get it he doesn't know much. Send him to read the UK forum! Plenty of people in their 50s there. I definitely had it at just over 50 and the symptoms had been around at a very much lower level for some years before that.
 
Anyway - this is just a one google search, 3 minutes result which I suggest you take to your GP, the one who diagnosed what you had as being PMR/GCA, show it to them and tell them what has happened at the rheumatologist. I think the title of this paper says it all, they mention 6 cases in total but I just took the reference, I don't even know if I can read more than the abstract as it may be behind a pay wall. The problem now is that if it really is GCA and he's going to reduce the steroids so quickly, you could get it all back again and there is - again - the risk to your sight.
 
Your rheumatologist is a rude and arrogant person - it is NOT acceptable to take it out on the patient if they do not like the way something has been done. Have a lovely relaxing day as Pearl has suggested (not reducing your steroids yet!) and then trog off to your GP with this reference. I'll try and find some more!
 
Eileen
 

A 24-year-old man with symptoms and signs of polymyalgia rheumatica

Journal of Family Practice, July, 1998 by Paul E. Whittaker, Michael G. Fitzsimmons

I've just checked this reference out - if you click on the July 1998 part of the reference in the post it takes you to the list of articles for that month and scroll down it to find this one. It is all available to read on line for anyone. The full reference is Journal of Family Practice. 1998; 47:68-71. There is also a list of other references at the end which I'm sure will have other articles about young patients amongst them!
 
BTW - I'm not saying at all that what you have might not be PMR/GCA. What I'm saying is he is totally wrong in saying you are too young. I also believe strongly in the "if it looks like a duck, walks like a duck and quacks like a duck - then it probably is a duck" way of looking at times. Why do some people immediately look for zebras when they hear horses hooves?
 
Pooh - they won't give me an emoticon! ;-) :-)
Eileen

i have my diary out and ready for the next 5 weeks.
Specialist felt that because my symptoms had been coming on since oct/nov last year that it wasn't text book PMR , i had no morning stiffness and if anything afternoons are worse for me .If he'd seen me 4 weeks ago it would have been a totally different story, anyhow He put me through strength tests yesterday and i sailed through (4 weeks of pred by now) , he didn't even blink an eye to the jaw/tongue pain when i chew or talk..I could ask for a 2nd opinon cos i certainly wasn't happy with my appt. i'm going to lower my dose by 10 mg every week until i get to 10 .. i guess one way or another we'll get an answer.

Winnie, something is wrong in my opinion that he didn't blink an eye at the jaw/tongue pain.

And how many of us have "textbook" pmr? I don't think I did at the beginning--the feeling of leg heaviness and pain is not something on the lists of symptoms although many of us have had it.

I know you will get an answer. Getting a second opinion might be a good idea. Hope you are feeling better.

freesia
yeh i was surprised he didn't blink an eye at that too freesia ..
My rheumy has never seen GCA in anyone under 70 yrs old in new zealand ... lets hope i'm not one of those unusual cases!!
 
i know one way or another we are going to get to the bottom of this and find out what i do or don't have ... it will be ok .. i will be in close contact with my GP .
Winnie152011-04-01 00:04:00Winnie, I don't know anymore than the information you are receiving regarding GCA but I do want you to know that I have been reading all of the posts and I do wish you the best.  It is so hard having a disease that has so little information and doctors that read one thing and one thing only and think that is the rule no matter what. 
 
When I was first dx'd with PMR I was literally in tears in the doctors office and had to beg him to allow me to try prednisone because I am one of the 20% that has normal blood levels and I was only 53 which was thought to be too young.  I hope you are able to get something resolved soon.
A long time ago I wrote a post (on the other forum probably) about the fact that at least 20% of us are totally outside the part of the normal distribution that accomodates the majority of patients - not just in PMR, in everything. You can be at one end or the other of that bell-shaped curve that apparently poses a major sticking point for a lot of doctors - they understand NOTHING about statistics. Unless it fits what they want to believe!
 
Russellcat and I are two - too young and normal bloods. PMR can appear overnight - but it can also creep up gradually over months. It says that in the guidelines and a lot of the texts. If you read enough different articles and medical textbooks you will find most of the things we complain about (including the heavy legs, in fact) - but there are a lot to read, I know, I've read a lot of them! What comes through loud and clear is that there is no "text book" presentation overall. And that the younger patients present atypically, but the symptoms usually respond to steroids given a chance. Strength tests are usually meaningless in PMR - there is no deterioration on muscle strength, any limitation is usually due to the pain generated by using the muscles. And as for "I haven't seen anyone under 70 with it" - there's a first time for everything!
 
The trouble is, it's an orphan disease. So far not a large enough proportion of the working population suffers from it (not least because they'd rather tell you you are too young and dx fibromyalgia or "it's all in your head") and it's not a "sexy" disease - only grannies and the occasional grandpa are perceived to have it. Babies with big round eyes and a cheeky smile don't. But it is growing and as the various countries push our retiral ages closer and closer to 70 the numbers will rise to a significant bulk.
 
It was for this reason that Mrs UK and some other ladies fought to get a charity started in the UK to bring it to people's attention. There are support groups in some areas there and many of the people involved also keep a close eye on these forums to offer help in the form of info to people who don't have any access to any form of support locally - and who often end up having to fight the medical fraternity who think they know it all. A GP in the UK has often never seen PMR or GCA before and a group practice typically has only 1 or 2 patients on their books. And it is common to see in articles and textbooks "it is more common in northern latitudes" - which hardly helps our Antipodean friends!
 
Obviously, more needs to be done!
 
Good luck Winnie - there's little else to be said at present. However, if the jaw pain gets any worse with the reduction in steriods - straight back to the sympathetic GP! And yes - ask for another opinion anyway. Many of us have had similar experiences with PMR - luckily that doesn't send you blind - but if you have access to someone else, go there.
 
Eileen

Copyright ArthritisInsight.com