Posted ,
My mom was recently diagnosed with GCA, & it also having symptoms of PMR. She is not able to tolerate prednisone because it effects her breathing. She is now on Methotrexate, but can hardly function. She has a lot of pain & stiffness, & isn't able to do anything without help. Has anyone had success with other treatment options besides prednisone? Its heartbreaking to see her so upset. 😦
0 likes, 7 replies
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nick67069 Syzz71
Posted
I am sorry to give you a not so good news but there are NO other medication that will manage pain and stiffness of PMR. Methotrexate will not do much for her, it is usually offered for some patients which cannot get off pred after a long use and even then it has limited success.
If she has GCA, then she HAS to take prednisone or she might lose her vision and it is permanent. People can have shortness of breath in the beginning of prednisone treatment, but later all is sorted out. What dose did your mom try? Can it start at lower dose? This is the direction I would try to go, because there is no alternative.
EileenH Syzz71
Posted
I have already replied to your other thread so I will repeat what I wrote there:
It depends where you are. Actemra/tocilizumab is approved for GCA but even it is usually used together with pred at the start but the pred dose is reduced quickly. For about half of patients it means to a much lower dose but usually the rest are able to get off pred altogether . It also can have quite a few side effects and is very expensive so its use is limited to some extent. It has been used for PMR in the USA - I don't know if that is general or whether they are pilot studies. You wouldn't qualify for it for PMR in the UK, it is quite difficult to qualify even for GCA.
But methotrexate alone will not deal with GCA - are they sure it is GCA? They are being a bit cavalier not using Actemra in that case - although it hasn't been through any testing to know it will definitely manage GCA which is why it is always used together with pred to start with, methotrexate certainly won't prevent sight loss.
Anhaga Syzz71
Posted
Can she not be given her early high dose steroid treatment in a hospital setting where she can receive respiratory assistance if necessary? Also prednisone comes in a couple of different forms and depending what she has already tried and been intolerant to maybe the other would work? (Methylprednisone?) Others will have more information about this.
Anhaga
Posted
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3014829/
ptolemy Syzz71
Posted
Is there another corticosteroid she could have? Alternatively Actemra as PMRPro suggests. I cannot believe that she has just been offered methotrexate which probably will have little or no effect by itself not to mention possibly nasty side effect. What sort of doctor is she seeing? In my case I would be on a one way ticket to Switzerland with out steroids.
Syzz71 ptolemy
Posted
She has a rheumatologist. Who is worthless. Her MD told her that he did not know what else to do for her....& that maybe she should ho back to Cleveland Clinic. Its been VERY FRUSTRATING! She cries all the time now. 😦 It breaks my heart. This is crushing her beautiful spirit.
ptolemy Syzz71
Posted
She must see someone who can help her. I know how awful the pain is. I just could not move because of it.