Methotrexate

they have him on 10 mg per day. They wont increase it because he has had quad bypass surgery and a heart attack 9 yrs ago

with all due respect to his doctors, I sometimes feel as if they really dont know what is wrong with him and are just shooting in the dark. He also has COPD along with history of heart attack and quad bypass surgery, so I think they are being very careful. I do believe he is also in the early phase of vascular dementia (which is a type of dementia that effects blood vessels int he brain, he has many signs). It so frsutrating for him and for me, he never feels good and we never seem to get any good results.

I have to say - I can't imagine WHY they don't want to give him enough pred to deal with the problem. The unmanaged inflammation is going to be more risky for his cardiovascular system than pred I would have thought. 

If he is presenting with vascular dementia then he may have a different form of vasculitis and he needs to be under an expert. The dementia doesn't affect the blood vessels in the brain - it is the blood vessels in the brain that cause the dementia because the blood flow is impaired. Enough pred might help that but they do use other medications in vascular dementia.

There is a very good vasculitis forum on HealthUnlocked and their helpline may be able to give you some good advice.

And ptolemy's advice is spot-on. Statins may be needed with his cardiovascular history - but they could also be part of the problem. 

And unfortunately, if he DOES have PMR then he will need to adapt his cardio stuff - PMR isn't the disease, it is the name given to the symptoms of an underlying autoimmune vasculitis. The autoimmune disease continues in the background and leaves your muscles intolerant of acute exercise. That must be managed by pacing and resting appropriately. Can he do his cardio workut in smaller bites? With rests in between?

he is very stubborn, he wont listen to me. I suggested cutting down his work to about 30 mins per day, every other day, but he insists on daily, 7 days per week, 90 mins. Its too much.

Well - you have the message at least! If he continues like that - no wonder the pred isn't managing his symptoms. Nor will MTX or anything else. If what he has is PMR and he wants to be reasonably pain-free - then he will have to moderate the exercise he is doing.

And perhaps you have to explain to the doctors that that is what he is doing. They in turn will say exercise is good - yes, it is, but in moderation and preferably well-adapted. 

Yes, you are totally right! I tell him exercise is good, but not every single day and not for 90 mins a day. He wont listen. I tell him he is aggravating the pain by pushing himself at the gym. He does the gym thing for his ego, nothing else. He doesnt listen to his doctors. His doctor has told me to stop obsessing over him and just get my own life. You cant help anyone who doesnt want to help themself, sort of. But as his wife I feel I should exhaust all avenues of trying to help.I am nearing my point of giving up though.

Think in that case it is time to give up in the sense of accepting it. 

Anyway - we don't care if it isn't you who has the PMR. We'll support anyone where PMR is affecting their life. So don't just disappear.

I second Eileen's comment.  Please do stay with us as long as you want.  ?

he is a walking pharmacy, he's on about 9 meds.....2 blood pressure pills, a cholesgtrol reducer, 2 anti-depressants, Xanax, prednisone and now methotrexate.

there are days when he seems so out of it from all of his meds, days where he seems like he in a trance. I feel sorry for him. He is only 62. He manages to go to the gym daily to do his cardios (for the heart attack) but that seems to make him more tired and achy. It's very frustrating. They diagnosed the OMY about 14 mos ago when his C-reaction protein tests came back extremely high

I know someone who was taking a statin, is your husband taking one? He seemed to be getting vascular dementia and became almost zombie like. He had a new GP who stopped the statins for a couple of weeks and he changed out of all recognition and was the life and soul of the party. 

Yikes.  Maybe time to get that combination looked at?  Have they been prescribed by different doctors?  Would a pharmacist go through the list with you to help figure out if there's a particular one or combination which could be causing some of the problems?  I don't really know how these things are handled, but must be someone out there with advice.

 

yes he takes Lovastatin, has been since 2009. He takes so many meds now I dont know how he stands it. I am afraid he is going to die from medication overload but the drs dont seemed too worried about it

he has 3 or 4 doctors; one for the COPD, one for the heart issues, one for the polymyalgia and a GP who juggles it all.  GP told me he doesnt think my husband will live to see 65 unless he stops smoking , since he has COPD and heart issues. As far as the vascular dementia (which I am sure he has early stages of, I am a nurse aide with 24 yrs experience in this exct field), he refuses to go to a doctor for the dementia. He wont even discuss it. Very stubborn man.

Oh dear.  This must be so difficult for you.  I hope you are able to find times when you can just enjoy each others company and make some happy memories.

His PMR has spilled into every area of our life. We are no longer close physcially because of his chronic pain and depression that accompanies the PMR. It's a vicious circle. And he is so stubborn he wont take any advice from me. I talked to his doctor about all this, doctor advised me to find happiness in my own way- make friends, cultivate hobbies, etc, I can't do anything to change the situation if he is being that stubborn. I feel helpless. I am seeing a family counselor next week maybe it will help, I think so.

I do hope so. I do appreciate he's had a rough ride - but men can be very obtuse when they are unwell. I have one of those too - but we've been together for 47 years!

You sound to have a very sensible and wise doctor - listen to him. I know it isn't what you looked forward to but maybe it will improve. Don't centre yourself on him - you count too.

Definitely reaching out to others is a good thing to do.  I feel so bad for both of you.  He must be feeling so inadequate and doesn't know how to display his affection for you.  Maybe in looking for another activity you would find something completely new that you both could do together?  Something which won't make him feel pressured or inadequate and which would give you a chance to do something with him?  Perhaps the counselor will have some good suggestions.  ?