Should I increase Pred?

May 2016 I was diagnosed with PMR/GCA, started on 60 MG prednisone. Got down to 30mg and developed a flare , I guess, pain in arms and hip and head pains. RA put me back on 60mg and Imade it to 20mg. before I felt the same pains. But I don't want to go back up. prednisone was managing my pain, but does the pain hurt my body or just my ability to be more active. I'm 75 and would rather read a book in my bed than do chores. I do swim/gym 3x's a week for exercise, but want to get off the Pred! In Nov. 2016, I developed eye swelling. The eye Dr. first said allergy, then prednisone side effect, then Pred and cataract scarring from my operation 4 yrs. ago. Nothing can be done until I get off prednisone. I look like a raccoon and my eye sight is dimming. The eye Dr. says my sight is the same, but the swelling dims the sight. I'd be happy to " tough it out " if it won't affect my health and get me off prednisone sooner. Should I?

22 Replies

  • If you really think you can face the discomfort of no pred for PMR symptoms then there is no real reason for you not to reduce to 10mg and then reduce slowly beyond there - then how far you get is dependent on your adrenal function returning.

    BUT - PMR is not just pain and not being able to do a lot. It may mean far more than you have thought about: inability to look after yourself independently, stairs become next to impossible for example. At 55 I could only crawl up the stairs on hands and knees. I could barely toilet myself, getting up from the toilet, drying and dressing after a shower was next to impossible alone. I got shut in the bathroom - I couldn't turn the knob to get out. I couldn't put a bra on without major difficulty. The pain was constant - I was housebound and depressed. And bad-tempered and irritable as a result.

    Above all, however, you say you were diagnosed with GCA. The main reason for being on pred with GCA is to protect your sight. If the blood flow to the optic nerve is compromised enough, you run the risk of going blind. About 3,000 people a year in the UK alone lose their vision, either partially or totally. It is irreversible - no cataract op to sort it out even slightly.

    IF you can stop the pred without the GCA running away I suppose it is a possibility - but it isn't one I'd like to try.

  • Thanks for your response. I'll still be on 20mg. of prednisone. Is t enough to manage my PMR and will that be enough to keep my GCA at bay. My exercise routine has helped my mobility and the PMR ache is manageable. I know that once I get to single digit prednisone, I must watch for adrenal function. I guess I just assumed that once off prednisone my GCA would be in remission.

  • PMR is typically managed with 20mg as a starting dose followed by a taper down to find the minimum dose that manages the symptoms for you. Everyone is different.

    GCA - difficult to say. The local rheumatologist here is of the opinion that most GCA can be managed with that sort of dose. The high doses of pred for GCA are used because of the risk of visual loss in patients with visual symptoms.

    Unfortunately no - you can only get off pred IF your GCA is already in remission. Both PMR and GCA come when they want and go when they want. In the meantime you use pred to combat the inflammation they cause and so manage the symptoms. That is why you need to keep trying a reduction of dose - one day you will get to zero and know you are now in remission. The fact the blood markers are normal doesn't show the PMR or GCA have gone - it shows the inflammation is being well managed.

  • I started my GCA with the 60 MG. Dose of Prednisone and now am at 20 after 10mos. but don't want to increase the Pred. as I want to clear my eye swelling and dimness that the eye dr. says is from cataract scarring ( 4yrs. after the operation ). That eye condition is causing me the most difficulty, driving, reading, even TV watching are not easy any more. But, I can't get my eyes cleared until I'm off prednisone. Catch 22!

  • Why not? Shop around for a second opinion - even if it is initially just in theory. There are doctors who will sort things out while a patient is on pred - sometimes there is no option.

  • Sounds good! I do like this eye Dr. She did the biopsy that confirmed GCA. But, my concern now is better vision while I go through PMR/GCA

  • Hi,

    I can well understand that you don't want to go back up to 60mg again, but, as PMRpro says, and it's a big but - if you don't increase to a high enough dose to get your symptoms back under control you do risk the danger of losing some or all of your sight.

    Having lost the sight in one eye due to a late diagnosis, I know what I would do, side effects and all! And I had many.

    You may look like a raccoon and have limited sight, but it's better than having none at all. And that is a real possibility if you don't take enough Pred.

    Please don't think I'm unsympathetic, far from it, but please do think this through very carefully.

  • I understand and agree some sight is better than none. My late husband was blind due to diabetes. I guess I want to know if 20mg. Prednisone and some achiness is enough to keep GCA under control so I can finish the prednisone route earlier and get to taking care of my eye problems.

  • I'm afraid that I can't answer that question, don't know that anyone can say if 20mg is enough to control GCA. It depends on how much inflammation you have in your blood vessels. It's certainly not a dose that is enough in the beginning, but it can be enough later on once the worst of the inflammation has been brought under control.

    With regard to your comment to PMRpro in relation to the GCA being gone once you've finished the Pred, unfortunately that's not how it works.

    GCA usually goes into remission, but not always, but that can take anything between 3-6 years, in my case it was about 4 and a half years. During that time you need to take enough Pred to keep the inflammation caused by the underlying illness under control.

    Pred dose not cure GCA, there is no cure, it just controls the inflammation until the GCA or PMR goes into remission of it's own accord.

    Hope that clarifies the situation.

  • So, the PMR goes into remission as you taper, but not the GCA?

  • No - both go into remission, but in their own time. As I said it could be 2 years, or 6 years or sometimes never. As I said it cannot be cured like most illnesses.

    Some people have just PMR, some have just GCA, but others have both.

    PMR and/or GCA are auto immune diseases, and how that manifests itself is that some of the cells that make up your blood vessels grow too much, or in other words become inflammed. That then makes the blood vessels narrower and so the blood, oxygen etc cannot flow through correctly, making you fatigued and your muscles weak, and in the case of GCA can starve the optic nerve which then affects your sight.

    The only drug that reduces that inflammation is Pred, but it doesn't do anything to the underlying GCA or PMR.

    All the Pred does is keep the inflammation under control during that length of time the GCA or PMR is active, and you are trying to find the least amount required to do that. If you drop below that level- which is different in each person (and can be affected by other things like stress or too much activity) the inflammation will build up again, and you will get a return of symptoms.

  • I sure know what GCA is and I've had it since May 2016 but I won't know if the 20mg of prednisone is enough to keep the inflammation at bay until ( cross my fingers ) a test shows the inflammation gone or I lose my sight? No middle ground

    I see my rheumatologist March 24th , status quo until then and let her decide which way to go.

  • As DL says - no, they can both go into remission in their own sweet time. The pred has no effect on either of them - it just manages the inflammation they create.

    And no, there is no test that shows the GCA or the PMR have gone into remission. If you are taking enough pred to keep the inflammation under control the blood tests will remain at normal levels. That doesn't mean the GCA has gone away. You find out by reducing the pred dose very slowly and checking the blood markers - if they apply for you. In some patients they are never raised, however ill they are or how bad the inflammation is. While pred is around it combats any inflammation - reducing the risk of blindness. You would start to get symptoms again as well probably if the dose was not high enough.

  • If you have got down to 20mg with NO return of GCA symptoms (headaches, jaw claudication, visual disturbances, stiff and painful shoulders) then it is probable that your inflammation is controlled. However, if you have any of those symptoms then 20mg is obviously not enough. In that case you need to increase your Pred, but unless the symptoms are severe probably not to 60mg again. If you have mild symptoms maybe 25mg would be high enough.

    But as both PMRpro and I said you need to take the correct amount to control your symptoms, and only you can gauge what that level is. No symptoms - GCA controlled; symptoms - GCA not controlled!

    A test may show the inflammation is controlled, but that does not mean it has gone away - it means it's controlled! Which is all that Pred can do, it cannot cure the underlying illness of GCA or PMR.

  • My RA will probably put me back up higher on Prednisone as I have temporal twinges,not constant, but they are there. Oh well, I tried but my body won't let me!!

  • I'm a bit confused. How does the doctor know that your eye issues are from the cateract and not from GCA? Shouldn't prednisone help with the swelling? Also, I have found that rushing the taper sometimes prolongs things - if you have a flare, you wind up having to increase to a higher dose to get things under control. Usually folks try increases their dose by just a little to see if it will work. That way you don't lose too much time. Is there any way they can treat you without rushing you to lower doses? Good luck. You have a bit of a rough road ahead.

  • The eye Dr. checked the back of my eyes and saw scarring. It can't be treated until I'm off prednisone. With a slow taper that's at least 10 mos. if I have to increase the prednisone that will be that much longer. Will the eye problem wait that long to be treated

  • Did you ask them why you need to be off pred before you are treated? I could understand if they were wanting to do tests.

  • Surgery for the scarring, don't want steroid complications.

  • It seems some surgeons are quite happy to operate on people on steroids on lowish doses and others seem petrified. What dose are you taking at the moment?

  • Down to 20 mg. after starting on 60mg. May 2016

  • Cataract question - someone who has been of pred since the age of 23 - now 70 has just had both eyes done, with laser, on NHS and cataracts removed.

    Visit both PMRGCAUK website and PMR&GCAuk Northeast website and read people's stories with their journey with both PMR and GCA , PMR only and GCA only.

    Very interesting and informative.

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