Posted , 11 users are following.
I started with 15mg last August when I was diagnosed.
I have yet to see a rheumatologist and have been waiting since last November. I am trying to wean myself off as have had lots of side effects. I now take 6mg but do get pain in my neck and hips. Can anyone say if I am doing the right thing. My Dr seems to think that now I have been referred its up to them to sort it.
0 likes, 20 replies
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Michdonn kathleen21605
Posted
sandy08116 kathleen21605
Posted
On the one hand, prednisone is a wonder drug, on the other, it comes with varying side-effects. My rheumatologist set a plan for reduction which I have stuck religiously to. This too is not easy as each drop creates a sort of 'steroid withdrawal' period. It's not that the disease (for me it is GCA) is coming back and definitely not a reason to up the dose again. As my doctor said - 'you are trying to come off the drugs, not continue them'. I took her advice, backed up by the rheumatologist and I have one month to go before I come off it altogether.
Anhaga kathleen21605
Posted
What side effects have you been experiencing? If you an describe the things that trouble you most there will surely be some people on the forum who will have gone through the same things and found ways to cope. It doesn't help that you haven't been getting proper guidance from your doctors, but there are ways to deal with many of the effects, and of course they all diminish as we taper our pred. I will add, sensibly taper, and I mean that kindly. ?
I can add, looking at your timetable, that although many will say your taper has been very fast, it's not that much faster than what I managed my first year. But I only tapered as the pain was kept under control. Since about this time two years ago I've been below 5 mg, most of the time below 3 mg, side effects are gone, and I have virtually no PMR pain or stiffness. I'd like to be off pred as much as anyone, but I'm content enough and grateful pred gave me back my life.
JanetGarrett kathleen21605
Posted
Hi Kathleen I was diagnosed and started treatment on 15 mg prednisone last October. I am in the US I suspect you were in the UK. You definitely need to be under the care of someone experienced with PMR. I'm much younger than the average onset at 55. Have a couple of Articles from another group that I'll share with a good overview and recent updates from 2017 on new guidelines expected length of treatment Etc. The average duration of treatment for most nearing six years. Hope it helps and I hope you secure your doctor appointment very soon. All my PMR research is stored on my Google Drive. Please let me know if you can open this one, then I'll send you others.
Take care,
Janet
Moderator comment: I have removed the link(s) directing to site(s) unsuitable for inclusion in the forums. If users want this information please use the Private Message service to request the details.
EileenH JanetGarrett
Posted
You may find the links you wanted to quote are in this post:
https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316
If not, pm me to tell me which they are and I'll get them added if appropriate.
JanetGarrett kathleen21605
Posted
This recent video supports the updated findings. But this link into your browser to view.
http://rheumnow.com/video/dr-kathryn-dao-steroid-duration-requirements?utm_content=buffercb736&utm_medium=social&utm_source=twitter.com&utm_campaign=buffer
EileenH kathleen21605
Posted
No you aren't really. If it is PMR you will need a high enough dose to manage the inflammation and it sounds as if you are now too low. It isn't a case of taking pred for a short time and then getting off it, PMR lasts an average of up to 6 years, some people are able to stop pred sooner but rarely under 2 years at the absolute earliest. If you go to too low a dose all that will happen is the inflammation will build up again and you will be back where you started and possibly even need a higher dose to get it under control. You have done extremely well to get well below 10mg - and once you are at about 8mg that is the same amount of steroid your body makes naturally in the form of cortisol. If 7mg or even 8mg leaves you as pain-free as the starting dose did, that is where you should be.
Your GP is being lazy - if he thinks it is PMR and was willing to start you on pred he should also be willing to look after you until you have you first appointment - he is responsible for you in the meantime. A doctor who has never seen you can do nothing at all can he?
Most of the side effects of pred can be managed when you know how - tell us your problems and maybe we can help.
This is a link to our post with a load of links for reliable information on other sites:
https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316
kathleen21605 EileenH
Posted
Thank you for all the information that you gave me. I suffer a lot with shortness of breath that's the main reason I want to get off the steroid. I know if I saw a rheumatologist I would be in a better position but seeing as my appointments has now come for July that's 9 mths since referral. I felt I would try to wean myself off . All the replies I have had say too low too soon . Today I went up to 7 but still get pain in neck and hips. I will see how I go and if pain remains the same I will increase dose again. Thank you for help I do read notes on forum regularly.
EileenH kathleen21605
Posted
The shortness of breath can also be due to the PMR - quite a few people find they have struggled to do anything energetic (which includes walking up a even a slight hill!). You have to decide which is more important really: to be in less pain and not stiff or learn to cope with the lack of puff. No pred or too low pred will just mean a return of the PMR symptoms - it doesn't cure it.
JanetGarrett kathleen21605
Posted
Good morning Kathleen think about it in these terms as long as you're having pain the inflammation is not at day damage is being done and all of the time on the steroids you're not even trying water it's basically for lack of other word a waste of time so make an adjustment give it several days to a week and then keep doing it until you reach comfort. I definitely agree too fast too soon. Are you in the UK? How could they possibly diagnosed you put you on prednisone and have you wait 9 months for a rheumatologist? more importantly, he was following your blood draws for inflammatory markers and other things like CBC etcetera very important. Oh, were you able to successfully open the Google Docs file?
kathleen21605 JanetGarrett
Posted
Yes I do live in UK, unfortunately the Health Service is under extreme pressure. I will try to control the dosage a bit more on my own. I am the only one at the moment that can help me. No didn't manage the Google file. Thank you.
EileenH JanetGarrett
Posted
Michdonn EileenH
Posted
JanetGarrett EileenH
Posted
sandy08116 JanetGarrett
Posted
JanetGarrett sandy08116
Posted
EileenH JanetGarrett
Posted
Janet - can you send them me by pm - if they are what I suspect they are I'll speak to the chief moderator. I don't mind blocking of "unsuitable" material because often it is sensible but when it is from a PMRGCA site to go on a PMRGCA site that seems a bit silly!!!