What is this doctor thinking?
Posted , 6 users are following.
Office called me to tell me my SED rate is up to 30 from normal (what is normal?) in Jan. and 26 in October. I was on 20 mg in Oct and doing ok. Some pain, but bearable. Can't tell you what normal in Jan was all about. I was down to 15 mg. then. Now been on 12.5 last 2 weeks and feeling much, much better, although still some pain which really isn't bothersome. my rotator cuff in right shoulder that I hurt when I slipped on ice in Dec. seems to be responding to physical therapy. So office caller (who knows nothing about this disease) says the Dr wants to start me on...guess? Methotrexate...I said no. Probably wasn't very polite but told her the Dr had misunderstood me (again) and that I am going, hell or high water, cross country in the camper to see my family in 2 weeks and she wants me to mess around with a new drug.??
Originially she wanted me to jump down to 10 mg during my trip. Wasn't going to do it. Was going to stick to 12.25 all of April. Now she says stay at 12.25 for a month then go every other day between 10mg. (would still be in the middle of my trip) and take methotrexate?? If my sed is up to 30 shouldn't I go UP in pred dosage?? Don't want the dang Methotrexate, especially after reading how it doesn't seem to help anyone much. Enough drugs in my system as it is. Geesh. Just when I was feeling better. What do you people think of this madness? Should I go back to 13.75? At least she gave me a refill on this batch of pred. (5mg tablets) but, wouldn't give me 1 mg tablets, as I requested, until I get to below 10mg. A real control freak, obviously. What should I do? Not many specialists around...Could get a worse one out here in the boonies. Help??
1 like, 8 replies
FlipDover_Aust bonnielee
Posted
All advice I've ever heard/read/received indicates that you DON'T MESS WITH YOUR DRUGS when travelling!!! lol
Travelling is stressful so you are at risk of having a 'relapse' at the best of times.
As for MTX - I wouldn't have thought 12.5mg warrants taking it...... especially if you are able to reduce - no matter how slowly! I took it because I couldn't get below 20mg and I was really ill. I would have tried anything!
bonnielee FlipDover_Aust
Posted
EileenH bonnielee
Posted
Normal sed rate/ESR is 1-20. A single raised sed rate shouldn't result in an increase in pred dose - so many things can cause it to rise, including colds. You should check it again next week and if it is still rising, think about raising the dose. But if you haven't got increasing symptoms you hang on - they are always king.
I agree with you - before you can take mtx you need liver checks and to start with you need frequent blood checks so starting it now is absolutely daft. You haven't had a chance to try reducing - and obviously not even to reduce sensibly! So there is not any desperate hurry to shove you on to mtx - they don't know whether or not you will be able to reduce beautifully once you have settled down.
I'd stick at 12.25 for another couple of weeks at least - and then I'd introduce the 10mg very slowly. It doesn't have to be every second day - you can slow it down by taking a 10mg dose for one day and go back to the old dose for a few days, try the 10mg dose for a day, another few days of old dose. That is the principle of the Dead Slow approach and it lets your body have a look at the new dose - and go back to "normal". If the effect of 1 day of the new dose is awful, go back to the old dose and then have another try once you feel OK again. That way you can assess the potential effect. I find it takes 3 tries before my body doesn't protest and then I can carry on with the reduction.
But telling a patient to start a new, potentially unnecessary, drug just before you KNOW they are about to be out of reach travelling is really rather risky given the possible side effects of mtx. It would really put me off them as a doctor...
bonnielee EileenH
Posted
She, quite obviously, was not listening, or worse, didn't care. I can't afford a down day while traveling if 10 mg doesn't work well, which is why I wanted 1 mg tablets to begin with so I wouldn't jump 2.5. Seems clear enough to me. Is it ok to just stay at 12.25 for another 6 weeks? I could cut (carefully) a 5 mg into quarters and go to 11 before I go, but, pain woke me up a 5 am this morning (not injury, I can tell the difference) so I'm hesitating at any more reduction as 12.25 is not working 100%. Thoughts? Thanks.
EileenH bonnielee
Posted
Stick at where you are until you are somewhere it is convenient to try a day of a lower dose, with the smallest change in dos eyou can manage, doesn't have to be particulalry accurate. Just over 12 for another 6 weeks would fit with one of the reductions suggested by a top PMR Prof. (He does 6 weeks 15mg, 6 weeks 12.5mg, one year 10mg) No hurry - whatever your rheumy seems to think.
Mrs_Hobbles bonnielee
Posted
I wonder would your SED rate have increased because of your rotor cuff injury? To my knowledge SED rate is the level of inflamation in your system and if your doctor didn't know about your injury, she might have assumed it was from PMR. MY doctor doesn't pay attention to my SED rate as it's always up because I have inflamation going on all the time from Osteo and rheumatoid arthritis! Just a thought 😊
bonnielee Mrs_Hobbles
Posted
I was wondering the same thing since Eileen said sed could go up with just a cold. Dr completely aware of shoulder injury as she gave me a cortizone shot for it. I don't think she's paying attention to me. She seems to go by set numbers in her head, not paying attention to patient. Wants to be in charge, while I want to work with the Dr., not just blindly take orders. She's not going to like that I refused Methotrexate. Like someone said previously, I may end up voting with my feet.
mirella60121 bonnielee
Posted