Giant Cell Arteritis | Arthritis Information

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Hello all,

This is the first day I have used this forum--I didn't know anyone who had PMR until now!  I have had PMR for 4 years and still have to take prednisone. I probably take less than I should but I am willing to put up with the discomfort.  I would like to know if our chances of developing Giant Cell Arteritis are greater if we do not take the correct dose of prednisone.  For example, if I quit the pred, will my risk go up of getting GCA?  Does pred keep this at bay? My rheumy told me that 1 out of 5 with PMR will develop GCA.  I would appreciate any info on this, and thanks!
 
Hi wildflower, the answer to your question is.........NOBODY KNOWS! lol. I started down the prednisone road because I was  scared of developing GCA and I had seen one or two brief references that suggested that taking prednisone would prevent (or help prevent) the development of GCA. However, in the following months, while on prednisone, and hating it, I spent hours and hours researching PMR and GCA and read hundreds of pages of links to the subject and found very very little about this question. Almost every article about PMR omits or avoids this question. They all say that the treatment for PMR is low dose pred, starting higher, then reducing down, but none of them say that this will help prevent GCA. However, I have found several articles that do actually say that the low doses of steroid used to treat PMR are highly unlikely to, or actually would not prevent the development of GCA.

I have seen two rheumatologists and both couldn't answer this question "yes" or "no", but both eventually said that low dose pred does probably not prevent GCA. I chose to stop my prednisone last December, and although I am struggling a bit with my PMR, I am glad I stopped the pred. Hopefully I will never get GCA, and if I do, I will then take the prednisone. Bear in mind of course that almost all people diagnosed with PMR take prednisone, and some of them will get GCA regardless, as a percentage of people with PMR will get GCA anyhow, steroids or not. I don't think there is any study material available on untreated PMR and its progression or not to GCA. Which makes me and other non-predders a guinea pig, lol! I do have some links to the articles I mentioned, but I will need to dig them out, as I have "put away my PMR" in recent weeks!

Chico, you have been so helpful to me! I have asked my doctor and I got the same response as you did from yours.  SO, the jury is still out on the connection between pred. for PMR and potentially developing GCA.  Everything I have read concurs with what you have researched.  Thanks so much!Sorry to be so long continuing on with this! I had a tidy up of the mountains of stuff I've printed out about PMR and found the main article of those I mentioned. You can read the whole thing if you go to emedicine.com then to rheumatology and then to vasculitis. The author is Ehab R Saad and his credentials look pretty good to me! Plus there is an impressive list of co-authors and editors. So to quote just a few lines that refer specifically to the question of "does prednisone prevent PMR developing into GCA?" By the way, anything in capitals are my caps!

Under a discussion about tests and lab studies, temporal artery biopsy is discussed (still talking PMR not GCA), and they say "Patients should be monitored for symptoms or signs of arteritis after treatment initiation (for PMR), because low dose corticosteroids DO NOT PREVENT progression of polymyalgia to giant cell arteritis. If clinical signs of vasculitis develop, temporal artery biopsy should be performed." It goes on to say that if a biopsy IS taken, it's result will not be affected by the low dose steroids being taken for PMR.

Under the subject of treatment for PMR: "Corticosteroids are considered the treatment of choice because they often cause complete or near-complete resolution and reduction of the ESR to normal. HOWEVER NO DEFINITE EVIDENCE DEMONSTRATES THAT CORTICOSTEROIDS (OR ANY OTHER THERAPY) ALTER THE NATURAL HISTORY OF PMR. THE LOW DOSE CORTICOSTEROIDS USED IN PMR ARE ALMOST CERTAINLY INEFFECTIVE IN THE PREVENTION OF VASCULITIS PROGRESSION."

Under the heading of complications: "Generally, PMR is not associated with serious complications. Arteric replapse (ie GCA) relapse in a patient who presented exclusively with PMR is unusual.  However, every patient should be considered at risk for GCA."

'PATIENTS TREATED WITH CORTICOSTEROIDS ARE AT RISK FOR LONG TERM COMPLICATIONS OF CORTICOSTEROID THERAPY."

And finally, the best bit" "Inform the patient about the potential benefits and risks of corticosteroid treatment and encourage the patient to participate in choosing the treatment plan."



Chico, you are a wealth of information!  I read the article and was happy to hear that approximately 15%  with PMR develop GCA.  Wow, because I am on a low dose, it is significant to know that low dose pred. does not prevent progresssion of GCA.  SO, here we go again--it's that good drug / bad drug thing again.
 
Because low-does seems to be only symptom relief, I am seriously going to consider stopping my pred.  Of course I will talk to my doctor first.  Chico, thanks a bunch.
 
Wildflower
Hi Chico,
   I read your posts about ateritis and was glad to see someone verify what I have thougth all along. 
   I am new on here, yesterday.  I've had polymyalgia for quite a while and cannot tolerate the treatments, prednisone, methotrexate.  It seems like the more I take the more problems I develop such as diabetes type II, glaucoma, beginning cataracts, skin conditions, bone thinning.  I am on the low doses of pred and take methotrexate just once week but I have never felt not like myself so much as I have since taking the medications.  I've developed edema and life just sucks.  Reading your post about knocking off the pred was reafirming in that the doctors all want to just worry abouit arteritis which if it occurs can then be treated.  Thanks for all the work you did on that post.
 
Hi Marlene
I am sorry your are having a rough time.  Know that you are not alone!  This forum has helped me so much. 
 
I took methotrexate for some time and did get some relief, but I kept reading about potential side effects, and got off it.  I take small doses of Pred.--I think since I have dropped my dose I feel better emotionally.  Having said that, I have more trouble getting around. 
 
Marlene, you have had more than your share of medical conditions.  It is my hope that you get lots of hope and encouragement from the really nice people here.  Oh, how long have you had PMR?
 
Blessings,
Wildflower
Hi Wildflower,
   Just making a connection and seeing that I am not unique makes me feel not so crazy.
I appreciate your kind words.  Now tell me, isn't this lousy stuff supposed to go away in two years?
    The side effects of the methotrexate are encouraging to say the least!  Ugh.
Blessing to you, too.  This group is wonderful and I never knew so many of us have PMR.
I think it should be outlawed.
Marlene
Wildflower--I was diagnosed with GCA three years ago and then the PMR.  It started with an entire head pain not like any headache I ever had (and I had migraines for 30 years).  Sed rate was sky high, and 60 mg pred to start resolved the head pain.  After three years, I can pretty well tell when I'm getting a flare of the GCA, so I increase my pred without going to the Dr.  Another symptom of GCA is a painful jaw (claudication) where I can barely stand to chew anything to eat.  Also, changes in vision is another symptom (blurring, whiteout areas in vision, flashing zigzag lines).  Any of these things makes me increase my pred by 10 mg for a week or more.  I then start tapering again.  I'm on 5 mg right now. 
 
I would like to be off pred totally, but can't deal with the pain right now.  I have been able to quit for up to 3-4 weeks, but then the PMR comes back.  I worry about the GCA all the time, but I don't let myself run out of pred just in case I get a flare.  The headache and jaw pain are usually the first signals. 
 
All I can say to you is that to be aware of unusual headaches, jaw pain, or changes in your vision that you have not experienced before, and don't wonder about it for days before you do anything about it.  I was extremely lucky I did not lose my vision totally before I was finally diagnosed with GCA by an ER doctor because my regular doctor insisted I was only having one of my migraines (not my doctor anymore).
 
Best of luck to you, and stay in control of your treatment, and don't trust that the doctor knows everything.
The GCA also involves the internal vessels as well.  Weaknesses in the vessels in the abdomen causes deadly circumstances as well.  It weakens arterial walls and vessels from the inflammation.  Steroids can cause a weakening in the vessel walls as well.  My rheumy has cat scans done to see if anything internal is bulging.
 
 
Hi all. Imainfp, thanks for sharing your story and warnings about GCA. It really is a scary thing. I hope yours goes soon and never comes back!

Your warning is very true, and all of us PMR people need to be very aware of the possibility of developing GCA.  Speaking for myself, I would definitely be taking my pred long term if I had, or had had, GCA. Good advice too about not waiting around to "see what happens" if you get the symptoms. I know that if I got anything like that I would be off to the doc or hospital the same day. I too have had migraines and I think I would know what is a different headache.

Donna, yes, it;'s really scary that GCA can affect the large vessels in the abdomen and heart.  I didn't know that pred could cause aneurysyms though. Fortunately, ultrasound is an affordable and simple way to look for that.
Hi Chico,
 
My doctor explained that Prednisone causes thinning of the vessel linings like the thinning of the skin.  The weakening of the vessel walls causes the bulging that can occur.  I've had the abdominal cat scan and the echocardiogram.  Plus the age appropriate stress testing.  His message was not to ignore symptoms of headaches, vision, abdominal pain. 
 
I'm afraid to burp that I might pull something that is weakened.  I have a difficult time with the low dose of Medrol.  I don't think I'd have any quality of life without it at this point.  Side affects are at least controlled for the time being with more pills.  Since this disease has been around for many years, I wonder if there are any statistics on the long term effects of inflammation on all the major organs caused by PMRA.  RA shows the progression of it's disease. 
 
Call me a cynic, but my theory why PMR has not had a lot of research done on it is that it is primarily considered an old persons disease and therefore not as important or interesting as other diseases that affect younger people or the whole age specturm. I hope I am wrong!

I noticed my skin thinning after just 5 months on low dose pred. So it does the same to your insides as well! Blimey! What's worse then, the effects of inflammation on the tissues or the effects of pred on the tissues??!!
Hello all,
 
Thanks for this great (but scary) info on GCA.  I had no idea it involoved more than the head, which is bad enough.  My doctor told me that if this developed, I would know exactly what it was because of the excruciating pain, and if that happens to go immediately to the hospital.  I do not spend my time in fear of this--the PMR is enough for right now
 
Chico, I can't help but wonder as well why so little research has been done-that the only drugs that work are old and have serious side effects.  I don't think you're a cynic, I think you're a realist! I have been on Pred. for 4 years, going on 5--it is a low dose (I have symptoms, but I choose to keep it low).  And yeah, it is a conflict about whether or not to continue.  I was so hoping PMR would just burn itself out, but so far it ain't happening. 
 
Blessings,
Wildflower
 
I have GCA and have had it for 18 months now.  I had all the classic symptoms listed below.   Luckily I had a GP who had previously come across GCA.

There is no known cause or cure for either GCA or PMR. The medication only controls, it does not cure.

There is not, at the present time, much research being undertaken into these, life destroying, but not life threatening diseases.   To this end in the UK we are in the process of setting up a National Organisation to highlight these two diseases and promote research into cause and cure.

Steroids invented in 1949 are the most frequently used drug to control the symptoms and associated pain and in the case of GCA - stand between you and blindness.

Yes Methotrexate has come along, but that is a chemotheraphy drug.

Steroids do have side effects and they are the most difficult thing to cope with and the reduction programme is also difficult to cope with.

People are so desperate to come off the steroids, that they forget, they are not the cause of the problem - the disease is.

Current medical advice says 'PMR burns itself out within two to three years.  Yes it can do so and no it does not always.

Managing steroid drop is different for everybody Sed/ESR rates are different and results depend on age as well.

I am on a two year drop programme.

I was on 60mg for two weeks, 40mg for a month then steady drop of 5mg till 20mg per day.

1 December 2007. 15mg
1 January 12.5
1 February 10mg
then a drop of 1mg per month until I reach 5mg.  Then three months on 5mg, 4mg, 3mg, 2mg, and down to 1mg on September 2009.Probably on at least 1mg per day for rest of life - depending on relapses.

My friends with PMR have found a slow drop is the best way - be prepared for the first week of any drop to be problematic.

 Believe it or not you should not spend your time worrying about getting GCA - you will soon know it the pain is horrific.



GCA  - Symptoms

Abrupt new headache
Scalp pain and tenderness
Jaw claudication (vicious ache, unable to chew)
Visual symptoms eg diploma 

If this happens got to nearest hospital as left untreated it can cause blindness which is irreversible.

Hope this helps and clears up fears.


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