Waiting to feel better

[Spanky2019]

Neurophthalmologist planned to keep pred at 80 mg until August appt but I think they reduced to 60 mg last week b/c so shakey, weak & difficulty keeping track of my cookies - remembering. Shakiness better but sick 3 days with migraine. Could that be from drop in prednisone? Little less shakey now but still too weak to walk very far. I have gastroenterologist appt in few days to again eval swallowing & esophageal dysmotility & what to do about it. Then eye appt in less than 2 weeks. My rheumatologist office called twice this week to schedule i.v. Boniva for osteoporosis. I said I need more time to decide if I want to do boniva. My question is: Wouldn't it be better to wait to add another toxic medicine until I feel a little stronger? What's the rush?And, why is treating the osteoporosis really a critical issue when the rest of me feels like crap (excuse technical term)? Rest is absolutely the best thing for me. Every single time I 've tried to do any activity, I go 2 steps backward. Also, another stressor-hubby having knee replacement this week. Can't really take care of him but want to be near & supportive. And yes, your wonderful previous advice of allowing our kids to help has been invaluable. As always, appreciate your insight on this weird fork in my life.

[SheffieldJane]

Personally, I would want to wait. You are so symptomatic now anyway and the Boniva may make you feel worse. Have you had a Dexa Scan that indicates that you are particularly vulnerable to osteoporosis? If not, I would insist on one. Sometimes doctors forget that there is a person at the end of all this toxic prescribing.

Is your esophageal problem ( swallowing etc) a new one related to steroid use. I ask because I was hospitalised with an esophageal spasm midway through my PMR journey and had some mild swallowing problems thereafter. I still feel that my throat is narrower. Perhaps I am being complacent assuming that it was a Prednisalone side effect because it has improved as I lower my dose.

I hope your husband’s knee op goes well. You two could really do with some help in the home.

[Spanky2019 in reply to SheffieldJane]

I had dexa and R hip t score -2.9, L hip t score -2.6. Dx osteoporosis. The dexa was done not too long after I began prednisone. I think April. So osteo was already there. The raging esophagus problems came up last summer i.e. grade c esophagitis. Esophageal dysmotility. Dysphagia, hiatel hernia. Rheumatologist believes most issues are connected to vasculitis. He says it's not my fault, but I really did ignore my bodies pain, fatigue, so many signs because I wanted to work on my various projects. So foolish to not take care of one self because you will eventually have to pay the piper.

[PMRpro Ambassador in reply to Spanky2019]

You probably do need something - but I really would wait until after the sessions with the appointments. After this time, another few weeks won't lead to you crumbling in a heap. The stuff can cause vasculitis as an adverse effect but it is rare.

[Spanky2019 in reply to PMRpro]

"Crumbling in a heap" is definitely a pile to avoid. I will do appts, see what we can fix or patch, then address the bones. You"ve made this nightmare easier and I appreciate it.

[Spanky2019 in reply to SheffieldJane]

Sheffieldjane, you have all been so helpful through the past months. Thank you so very much. Hoping hubby does well and our kids/gkids (and inpatient knee rehab) will all work out. He's been my buddy/hubby for 47 yrs. Hard to have him in pain too.

[SheffieldJane in reply to Spanky2019]

💕🌈🌸

[PMRpro Ambassador]

It is a big change in dose and your body would very likely protest in some way. It would possibly have been easier doing 10mg at a time but what's done is done.

Do you already have low bone density? Or is this "just in case"?

If it were me I would refuse the infusion until you are feeling better. I don't get this rush to mix in more than one potentially unpleasant medications all at the same time. Never change two things at once we were always taught in science or you don't know what is causing what.