Doctor wants me down from 15mg pred in 6 weeks. 😱 15 10 for two weeks. Then 10 5. Followed by 5 0 he says should be easy as I have am supposed not to have PMRA
According to rumi .no test 😲
Still been on pred for 5 years 😤
Don't know what is wrong with me. It gets me up early every morning between 3and5
Very stiff legs mainly. neck stiffish.
But after getting up and walking can be fine in half an hour or so. Tho the day sometimes can feel very heady. 🙄
Hi ronzy,
Can't help you on what you've got if it's not PMR, sorry.
But your doctor obviously doesn't know much about Pred if he thinks you can get off it so quickly after being on it for 5 years.
I think it's highly likely you will get problems when your adrenal glands need to start working again - as well as steroid withdrawal pains with the big drops.
I suppose you can only try if he doesn't seem to want to listen to reason, but It's going to be difficult I fear.
😳😒 Tanks. All he goes on about is my bones and possibles of getting Diabetes.
Yes, and that's a possibility, but you still need to taper the Pred sensibly.
If you haven't got diabetes or osteoporosis now - you possibly won't. I've been on pred for 8 years: bone density is fine and no sign of diabetes either. Nor cataracts and I lost the weight even while still on pred. Not everything listed as a side effect happens to everyone!
Hallo thx.
Regarding diabetes,my sentiments exactly.
Thanks about telling me you being on pred 8yrs. Niece to have a comrade in arms 😂 So to speak. Pred been like a wonder drug to me also. Do get hard catar top of my nose on a morning.
A Scan says I have Bone problem. Can't spell word. 😂
But I think everyone at my age 78 has.
If I get to feeling bad. Docs goitre to get,both barrels.
We'll see
Then make sure your trigger finger's working, Ronzy! Sorry, couldn't resist that!
😂😂😂😂😂like it 😂😂
Hi Ronzy, coming off Prednisalone slowly is recommended even if there is no underlying condition. Our bodies become dependent on it. I do wish you had a better doctor. Where are you? Any chance of a different doctor?
5 years is an awfully long time to be on Prednisalone if they now think it wasn't indicated. Have you ever felt amazingly better in the early days of Prednisalone? That's the true test for PMR.
Do you have a friend or a family member who can go with you to doctor's appointments? It's good to have support and someone else recording what was said. Do you mean you are having headaches every day?
Your GP should be aware that after 5 years on pred, you should not just 'come off it' at speed.
In fact, after two weeks on pred, you always need to come down slowly.
Pred stops the adrenal function from working and that can lead to an adrenal crisis which is the last thing you need.
Change your GP or educate him..................
He's a I'll tell him 😤😂😂
You have been on pred for FIVE years and the doctor thinks you can reduce your pred dose to zero in 6 weeks? I think he may be wrong!
You should be able to reduce relatively easily down to 8mg or even slightly below - but it won't be as easy as it would be for a patient who has only been on pred for a couple of months as if the steps down are big you will experience steroid-withdrawal rheumatism which for many people can last for a week or two each time you step down. However, it is claimed that steroid withdrawal pain will respond to painkillers. Below 10mg you should reduce only 1mg at a time.
From 8mg your adrenal glands will have to start to produce cortisol again - and that doesn't often happen overnight. Then you need to reduce more slowly and some doctors recommend switching from pred to hydrocortisone (also a steroid) as that is felt to encourage the adrenal glands to wake up better than pred. But you must NOT stop pred so fast - you may well be fine down to 5mg but you must not go from 5mg to zero overnight after so long on steroids. That could cause an adrenal crisis - which would make you quite ill and you might even need to go to hospital.
If you can't get to see a different doctor in your practice who has rather more realistic ideas about reducing after long term steroid treatment, it may be worth speaking to a pharmacist and asking their advice. They must be aware of the risks of too fast steroid reduction - even when the illness is not the problem, there are other obstacles. How you convince your doctor though I can't advise - except hoping another is more sensible! Still - maybe you will be one of the people for whom it isn't a problem.
Night-time pain that improves immediately with movement is a common finding in one group of inflammatory arthritides which often do look very like PMR in the early stages. They respond better to other medications - but if you are on 15mg of pred, no-one can tell if you do or do not have PMR. Most people's PMR would be fairly well managed at that dose - so I hope the rheumy has some idea of what it is as a result of some scans.
Don't know what your MD is thinking and can't offer any suggestions on the rapid taper he is suggesting.
However, in my experience, that early morning awakening and stiffness/aches were eliminated by switching to delayed release Prednisone. I take it at ten pm. It releases @2 sm before the cytokine dumping. This made the difference to me. I was sensitive to the dumping. It woke me in pain around 5 am.
Did you're pains go fairly quickly after moving around.
Once I started the night time dosing I no longer had pains that woke me and I had no morning stiffness that I could complain of. It really has worked well for me.
These days, I exercise first thing. Even before getting out of bed I start doing the leg lifts, core strengthening and stretches. I think I'm lucky in that the moving really helps and doesn't seem leave me in more pain the next day. I have to be careful of course. I try not to strain much. If I do, I will be reminded that the PMR is still there in my right shoulder, right hip, thighs. At least the propensity to become inflamed is still there. I also have scoliosis and sacroiliac joint issues so I have to be careful. For me it's about continuing my Qigong exercises, but with "judicious restraint" if my body is sending warning signals.
When I started tapering, the pain of the taper the first few days on a lower dose scared me into stopping the exercises. That really made things worse for me. I began to get weak and wobbly. Then I noticed that osteopathic manipulation often made the pain go away. That gave me the confidence to start my Qigong exercises again. I also started physical therapy . These days it's an hour routine in the morning, first thing, before breakfast.
Thx for that I have a sneaky feeling me and doc are going to fall out. At some time. He seams to think it's nowt coming off it. 😤
We'll see I'll give it a go. 5yrs or more I've been on it 😱
Because later in day I've nowt to show.
I'm sure they think I'm a drama queen.
Frustrating.
I find it hard to get my.messages across properly with gp. especially when fear and anger bubbling. So glad you have put your fears out to this group ......now take your informed tempered anger with you can say adrenal crisis when the severe tapering mentioned.
Am prActising for being brave, clear yet firm myself on Wednesday morning when i go for third time about breathlessness.
do you think gps realise how much stress they cause patients and impact negatively on their long term heath.
Anyway. good luck and let us know 🌻
Best of luck with that 😉 And thx for your support &kindness.
They won't like me when I'm angry 😲😂
I just want him to think I tried is silly effort.
You're name cracks me up.
At first I read it as poopadroop 😂
All the best
Hugs. 🦉
😂that's a good change. I have spent years just lurking in various groups but never felt need to join in. So just chose name I would remember for accounts. PMR pushed me over the edge and made me join the conversation, especially as very friendly and helpful group. So got stuck.with poopadoop. lol.
👍👍
Hi Poopadoop. You can actually change your name if you feel you need to although you do have a memorable handle right now. I changed mine, and I think you are allowed one or perhaps two changes on this site.
thanks. sort of got used to it now. These days I change as few things as possible so memory retains it. had to change password for some four times for same website in 2 weeks because didn't remember it. 🙄
I know what you mean. I hate having to change passwords.
Good hint for more complex passwords for important sites: take the second line of a poem you know well and use part of that, changing a few of the letters to memorable symbols, numbers, capitals. Apparently these are very strong passwords and hard to crack and relatively easy to remember.
Only poem i ever rember is larkin about parents😂
Apparently the man who wrote the book on passwords in 90s said we should change passwords every 90 days then. He now says he was wrong because people just change parts of the password say monkey123 to monkey345. So you might as well stick with something you remember. Now he tells me!!
I tried mixing things up. that's how I ended up having to reset password 4 times.
Pass words 😬
I just got back from my Rheumy. I was diagnosed last Dec and started on Pred 12/21/2016. I was started on 15 put up to 20 tapered to 14, flared and put up to 20 but rather quickly, over 5 weeks or so, down to 14 again and now I'm at 11. Her plan for me has been .5 a week from 14 until 10. then 1mg per month until about 5 at which....we'll see how it goes. If at anytime I don't feel right or ready, I'm to call and we'll figure out what is needed.
She keeps saying everyone is different and that it's important to find the right treatment for each person. She seems to practice what she preaches.
I hope you can find a doctor as collaborative and flexible.
And I haven't got a Rumi 🙄😢
i hope you get one!
I don't think I want one. The one I saw was full of himself. Not very patient with me when I couldn't remember dates etc. 😬😳😢
Oh dear! I had one visit with a physician like that. I did without for six months but recently switched back to my old Rheumatologist who had moved away to an office another hour away. It's worth the extra travel. Some are very patient and professional. Best to you!
Thanks. 🌹
All the best with that. 👍
No one understands me 😢 No markers just pain in morning sometimes down side at back of neck though day.
But nowt to show doc. 😳
Did you read PMRpro's reply above where she mentions the fact you have this pain recurring at nighttime could indicate a different kind of autoimmune disease which looks like PMR, at least in the beginning, but should actually be treated differently? There are websites which describe "differential diagnosis" for PMR and perhaps your doctor should be doing a bit of research!
Yer. I read that. Interesting. But don't know ware to start looking. 🤔 At the moment it is mainly in my legs. And useualy heavy sweat in Center of chest. Also across the eyes.
Let's see how it goes. 😳As I reduce pred.
Thanks for that.
I am just wondering if he means to reduce by 5 mg per week which makes more sense.
If you reduce too fast you may find that you have to go back up which would be counter-productive.
Maybe need to clarify it or try his way. If it does not work and you are in pain, go back to where you were last okay for a week or two and decrease by only 1 mg per week
Interesting visit with Rheumy - fat not edema!
What my rheumy said yesterday - you may not like this!
Update ... flare has nicely abated...not on methotrexate YET! what do I do when medical insurance stops my cover for PMR?
Going from 5 to zero - wish me luck!!
After another opinion from the experts here ...
