hi all I was back to see rheumatoligis on mon, my crp went down from 73 to 24 and ESR was down to 25. I still have jaw pain, fatigue when I eat. And swollen arteries at side of temple,
i know the Doctor wants me down off high dose (80mg pred ) and I do too.
But he wrote out reduction plan, and I didn't notice till I got home, he did say if I experience any symptoms to go back to high dose.
80mg 2weeks
70mg 1 week
60mg. 1 week
50mg. 1 week
50mg. 1 week
40mg. 1week
30mg. 1week and then back at hospital. I know this reduction plan can't be right.
when I frist had PMR they thought it was kidney infection and was on macrodantin 50mg but I had severe headaches on them just wondering if they would have made the situation worse? Thanks
Hi Elizabeth, I take it you have GCA according to the above dosage of pred. I am not qualified enough to comment on this but I am sure someone will be along soon to cooment on your post. They are a great bunch of people with lots of knowledge. Good luck on your journey. Regards Pat
Hi elizabeth, you say that you experienced head aches whilst taking the macrodantin, however, I understand you have been diagnosed with GCA. Therefore, are you sure that the head aches were from the macrodantin and not the begging symptoms of GCA?
If they were from the side effects of macrodantin you should ask your local pharmacist or gp the next time you see them. Sorry I can't be of any help there. Regards, christina
I've replied to your post on the other thread Elizabeth and explained the reduction plan - but if you are worried do please call the departmental secretary at the hospital to ask the consultant for advice. Now the visual problems are under control he wants you to get to a lower dose to reduce the side effects. He has also said if the symptoms come back to stop reducing so there is no reason why you shouldn't reduce like that, it is a normal reduction pattern for pred in many illnesses and he has just done it to get you to a more normal GCA dose since most GCA patients start at 40mg, very occasionally 60mg. 80mg is very high but was needed because of the risk to your sight. If the symptoms come back, you are to stop reducing and go back to the last dose where you were OK and see your doctor.
The macrodantin may have made your headaches worse but it doesn't usually cause visual problems or loss of sight as you mentioned in your other post. I assume you told the doctors about being on that when you were in hospital?
I wrote a long response - no links but it's been stopped for moderation!
All I said was that I have replied to you on the other thread you started so I'll put it here too:
"The very high dose was used to start with because you had visual symptoms and that is the best way to try to avoid loss of sight. You were lucky and it worked but you are left with other blood vessels that are involved, but obvioulsly they think the ones supplying the optic nerve are now safe.
If you had gone to the doctor with "just" the symptoms you have now they would probably have started you on 60mg or even just 40mg so to look after the left over inflammation the doses you will be on at first while reducing are still plenty high enough. The doctor wants to try to get you to a lower dose because of all the side effects of very high dose pred - anything over 20mg/day is classed as high. He has also told you to stop reducing at any time if the symptoms return - I imagine he means to the last dose you were OK at but I think I would ring the rheumatology department secretary at the hospital and ask to be sure if that happens.
I'm sure that is their usual reduction scheme and I don't think there is anything to worry about above 60mg - the doctors I know start at 40mg at the very most unless the eyes are involved when they use 60. You'd already loss your sight for a short time, hence starting with 80mg. Even after a month you will still be at most people's starting dose. Even if you find you have to stick at 60mg for longer you will be on a much lower dose than now and if all goes well like for groovy-chick you will be at even less than that.
Try the first week and see how it is - as I say, that is still a higher dose than usual. Just be very aware of any return or worsening of your symptoms and don't wait to call them if it happens. I know how scary the thought of taking less is - but I'm sure they felt you are ready for a bit less."
The reduction is a normal sort of reduction for any other use of pred so it could well be perfectly right - he hasn't told you to go to zero, he has given you instructions to get to a much lower dose but still the sort of dose used in GCA.
If you are worried ring the rheumatology department secretary and check on Tuesday. And if the symptoms come back - stop reducing immediately and go back to your previous dose.
The macrodantin may have made your headaches worse - but it doesn't cause loss of sight as you mentioned on the other thread.
Eileen thank you so much for taken the trouble and time and going into great details, it all makes sense when you explain iit and you explain it so well,I really appreciate it, it's great having this support, I don't feel as scared, I do hope your feel well thanks a mill xxx
Thanks Margaret just reducing now , but scared at same time especially when jaw pain and fatigue that goes with that when eating, but hopefully it will all settle, support is great thanks a mill xxx
hi Christina yes it was I had no headaches until I started macrodantin, it was 5 for days, I rang doctor to say about headaches I had already taken them for 4 days, so she said you don't have kidney infection so you can stop them and headache stopped. I was diagnosed with PMA in hospital by rheumatologist first, but had pain in my neck and then pain in thighs till I couldn't walk , ( which I think the GCA might have been there ) I was put on 20 mg and it was only when I reduced to 12.5mg pred that I got the severe headache and jaw pain was bad. That was when they admitted me into hospital did the biopsy and eye exam ( biopsy was positive )I was in for 4 days, iwas put on 60mg, was fine when discharge , but next day severe headaches was back at hospital, so gave me painkillers and said to see how it goes over next week, but then on Sunday I had the tempory loss of sight, so next. Day I was put on 80mg pred, so reducing down to 70mg but scared reducing