had the hospital appt and changes made to meds

slomo

Hi everyone and thanks for holding my hand yesterday when I wobbled!
So, those of you listening in will have discovered the 'red herring'. The only reason I was booked into the connective tissue disease clinic was because the rheumy really wanted to see me and there was space in that clinic!!
My diagnosis remains large vessel vasculitis an RA
Rheumy is upping my methotrexate from 10mgs to 15mgs and wants to pulverise the vasculitis by putting me on steroids, 60mgs ?prednisolone? (Think that was it). And of course omeprazole
He wants to see me fortnightly so a 3 and a half to 4hour round trip each time! And I've to get a bone density scan too (although its going to be at the local hospital half an hour away). He's very confident the steroids will have me dancing in the aisles and then he'll inch the dosage down.
Pretty good appt really and OH is delighted at prospect of me being mobile again. Prescription for steroids is with GP for him to sign off and I should have them by Wed which is good as I don't work Thurs or Fri.Tonight is my meth night so hopefully my insides will accept the higher dose.....find out soon. Usually I just have a slightly delicate stomach the next day so fingers crossed.
Thanks everyone for your encouragement

slomo

Megrose489

So pleased that it went well for you, Slomo. It sounds like a really good appointment. I do hope that the steroids work and make a real difference to you.

Meg

Slosh

That sounds really positive. I hope all goes to plan.

stickywicket

I agree. It does sound like a good plan and I hope it all goes smoothly.

And well done you for getting there :cheers:

dreamdaisy

I loved pred, I found it a really useful and helpful med. I have never had as big a dose as that (the highest I ever reached was 20mgs per day for five days then I reduced) so I hope you can cope with it OK. I reckon you will able to do more than dance in the aisles but be wary - pred is fibber.

That seems to be a quite a leap in the meth, I was usually increased by 2.5 mgs but I hope it works and that you are able to tolerate it. Let is know how you get on. DD

villier

Lets hope the pred does the trick Slomo it did for me for inflammation in my muscles and I was only on 15mg. Are they going to be doing your bloods every week for a while? my GP told me if I had my meth increased I would be back on weekly bloods x

dreamdaisy

Hello, we're a couple of days on now, how are things? DD

slomo

Hi, Sorry about the delay in getting back to you guys, it was the internet that took a wobbly yesterday and not me!
Thanks for all the comments. As for the blood tests; I asked the rheumy how often I should have them now and he said my results were fine and I could go fortnightly, and then he increased my meth. Didn't dawn on us until we were outside that a change in meth generally means back to weekly. We were too busy concentrating on the steroids. I compromised and booked my next blood test for next Thursday as it's one of my non working days. That will make it 10days since the previous blood test and then 10days later I'll be back at the rheumy and will have more done then and I'll ask him again about how often they're to be done.
The rheumy doesn't like steroids but accepts they have their place and says he likes to get folk on lowest dose or off them altogether asap. He's hoping the high dose for the 1st 2 weeks will really zap the inflammation and then I'll drop to 40 for the week before I see him again.
I just hope that my insides can stand the pace and I don't have to drop the dose before the 2 weeks are up. They're not used to getting medication thrown at them. I think I've taken more meds this year than I have in the entire rest of my life!
I'm cautiously optimistic about the results. I'm sure I'm moving a bit easier today - sort of looser in the joints, if that makes any sense, so I hope it continues.
OH would be delighted (understatement!) if it worked. He has been an absolute star throughout this and I've been sure to tell him how much I've appreciated his support, both moral support and literally.

slomo

dreamdaisy

Steroids do have a role to play, there's no doubt about that but they are not a long-term solution. I recall being told to take them first thing in the morning because that mimics the body's own production of the natural stuff - our bodies quickly adjust to the fake stuff so become rather sluggish about producing it, hence the stepped withdrawal. I took steroids for three years, at quite low doses, then spent a year coming off them to help my body adjust. I hope they bring things under better control. DD

stickywicket

I hope you're right that it's making a difference. Fingers crossed.