Hi all friends here on forum.my rheumy wants me to drop my prednisolone for two days before the pet scan.my worry is she wants me to drop from 8 - 5mg .now I think that is A BIG DROP and I know from here on forum this is too mucha drop for my body.so if any of you have had to do this please let me know how it effected you .I could really do with quick replies as the s an is this tuesday 2nd July .thank you .
Hiya Jean. I have recently had to have a Petscan due to a patch on the lung and was advised that preds would have no affect on the scan therefore I stayed on the same dose (11mg). If you reduce from 8 to 5mg you will undoubtedly risk having a major flare and if this reduction is long term it could be dangerous to your health. I hope this helps.
I would think you might not be too bad just for 2 days since you are taking some pred - but what exactly does the rheumy think she will achieve by this?
However - I do know a few people who have had flares as a result of reducing for a PET scan and then struggled to get things under control again.
I understand your concern and need for an answer. That kind of drop would concern me as I have dropped from 3.5 to 3 this week and both yesterday and today I have been quite achey. It may be that someone more knowledgeable than I am will say something different.
jean b, I had my flare dropping from 8 to 7 mg. I will not even think about doing that again. I going to try the DSNS taper.
Becareful of quick tapers!!
Oh thank you so much to all who answered to me regarding drop for pet scan .and as Eileen says 'what does she hope to achieve ' I truly don't want to cause a fair and am really tempted to not reduce and not tell her .what do you think .I can see that what you are saying makes so much sense .
jean b, when my Rheumy wanted me to reduce. I told her no I am in pain, when I am pain free I will reduce, but always less than 10% and at my pace. I hope I am correct, but soon far still pain free!
It is your body?
Thanks michdonn .rhuemy says the need for drop is to show inflammation when pred is reduced for scan .if she had asked me to reduce pred just to try to get down on pred .then I would have refused but what do I say when she says it is necessary for scan .it's ok for her but I have to deal with the consequences.have I got a right to refuse the drop for pet scan though.
Question. You probably posted elsewhere, but why do you need the PET scan? Is it to rule out another possible diagnosis?
she says I have had PMR 7 years now and that there may be something else going on so needs to have a look .uh hopefully not yet I'm not the only one to have had it so long .
I know you aren't the only one to have had it so long. I didn't have any investigation done for possible causes of PMR symptoms, but now that I know so much more it seems odd that all doctors don't do the "diferential diagnosis" investigation at the very beginning before subjecting patients to steroid treatment which might, in the end, turn out not to have been the right thing after all. I hope things go well for you with the scan. As you aren't being asked to come off pred completely you will probably be all right. Take things very easy, eat those anti-inflammatory foods we hear so much about, and rest, rest, rest. Take your pred again as soon as the scan is done! And rest some more.
Thanks anhaga .am going to bed now as have to be up early for a funeral to tomorrow .will let you know how I get on and what I decide to do about the reduction before scan.but if any of you have any more input for me .please do reply.
That sounds like a lousy deal, good luck. I just the Rheumy wants you to flare.
I sorry!
As someone else says - bit late to be thinking about THAT! Wonder what she'd say to me? I've had PMR for 13 years and no-one here suggests it isn't, they accept I am one of the approx. 25% who require pred for much longer. An Italian study showed that 30% of patients still required pred after 6 years whether they had been on methotrexate or not.
I'm still not clear what she thinks a PET scan will show - but contrary to what Tavidu says, I did find a research paper the other weeks that showed that pred DOES interfere with the result by suppressing the emissions. If you are currently on enough pred to manage the inflammation then nothing will show up of the PMR. On the other hand - I suppose it depends on what she is looking for.
Sorry for delay in replying as I've had a very emotional day at the funeral of a very dear cousin and when I got back a report of last clinic appt.on mat.and in the letter it says the purpose of the PET SCAN is to look for possibility of underlying large vessel vasculitis as have had it for so long.UH! also she told me in clinic to reduce from 8 to 5mg as explained in my post - NOW IN THE LETTER she wants me to go down to 4mg .I phoned her secretary to ask for to speak to her but she not In today.my scan is next Tuesday and I need to start the reduced dose on Sunday for two days so can't get to speak to her to ask if it is possible to do the 5mg as I think that drop anyway is too much.the secretary said she knows I have to reduce or the scan won't show any inflammation.i explained I am worried about a flair and need some assurance .looks like I'm going to have to do it anyway .
Hi, good luck for your scan, try not to stress x
EileenH, drug prices. A Martin Shkreli bought the rights to HIV drug Daraprim which cost about a dollar to make, a raised the price from 13.50 a tablet to 750.00 a tablet for a 5000% increase. Profits are nice, BUT! Can you say OUT OF CONTROL!
Her reasoning FOR the PET scan is theoretically OK - except I'm far from convinced that she'll find anything without you being on lower pred longer. And what is she going to do if it is? The management is still generally enough pred to manage the symptoms - there are forms of vasculitis where other drugs are used but if it is "just" GCA in other areas they don't generally use the rather horrible chemotherapy.
I think it is very likely that I have a large vessel vasculitis and at least 2 doctors have agreed it is more than possible. I'm still on pred.
Yes I know - how he can live with himself beats me. It is stopping millions of people getting it.
Hassan’s relationship with Shkreli marked the start of a business relationship that produced a handsome windfall but would eventually lead to Hassan testifying this week against Shkreli as he stands trial for allegedly defrauding investors and committing securities fraud.