After four flares, I am beginning another taper. Dropped from 25 mg. to 23 and now to 22.5 mg of prednisone. I'd love to know what others experience as they taper down and at what point they feel/felt it. I sense every milligram.
I am sensitive to noise and lack concentration. My emotions are unpredictable. Sleep is still choppy, legs and feet tingle and large muscles of my body still ache. Headaches come but, also go with Tylenol. ( That's good) Symptoms such as exhaustion and sweating remain unchanged at this point.
I'd appreciate hearing your experience and advice on navigating the steroid taper.
Thanks! You are all awesome!
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Blurry62
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Advice: if you are that sensitive to the change in dose - and it does happen, not often but more than doctors know - you need a really slow taper. Preferably 1/2mg or 1mg maximum and also a slowed taper approach such as this:
And start it with a long gap between new dose challenge days. It took me 3 challenges before my body said OK - the days between I was back to normal. After the alternating dose stage plus another couple of changes I started to feel better on new dose days than old dose days (if that makes sense).
Yes. This makes sense. I have been stepping down on my own. Probably need to linger longer on the 23 then..... how about a week? Last time the taper went pretty well until I got to 20. That being said, I still had the above issues. when I get to 20 he wants to drop a half mg every two weeks (if tolerated) until I get to the 10mg and start the DSNS....
Have they never remembered the lesson of learning from ones mistakes!
They have put you on a taper too fast , and tried to do it too quickly, four times and each time you have flared and had to increase again , exactly how many times does your GP want to fail before the truth of the care you need gets through their fat skull ( because believe me this is their failure from not learning about the facts of tapering and not yours for trying to be obedient and follow their instructions ) .
Do as you feel you can , follow the taper used by other patients , show the medical moron the method that is used successfully by other GCA/ PMR patients and tell them firmly, but politely , that you have tried it their way a number of times and it's not working for you , so this method is now what you want to do.
If they still try to argue ask them to explain the medical reason why they do not want you to follow a tapering method followed by other GCA/ PMR patients.
Tell the GP that you do still have some choice in your treatment options and you still want to try the slower taper , letting them know that if it isn't working you can then obviously try something else in the future.
If they have an answer to why they are against it you can come and tell us , I'm sure we would love to know , we can help support or advice you from there.
If you still have issues getting the sort of support you really need , you may be better looking for a new GP that will support you as the added stress of not getting the right Primary Care support does not help your recovery either.
Your body isn’t given time to get acclimatised to one dose before you’re lowering again! Slow down.
No wonder you have had 4 flares.
I went slowly from 80mg and never had one flare - there’s a lesson there, methinks.
How did I feel after each taper (at high doses when I reduced from one day old dose, next day new....) a bit off colour, slightly grumpy for a couple of days. On lower doses when I used a slow taper, no discernible effect.
Afraid it very individual... it seems to affects some more than others. Some few days, but certainly staggering the change, whether by using a full blown slow taper over weeks, or just devising your own over a few days helps for sure. Plus of course, not trying to do too much during the changeover - your body can’t cope with reductions, over exertions, stress all at one time.
I'm holding steady at 23 mg. ....Happy to report that I've leveled off physically/emotionally. How long do you think I should I hold here before introducing another reduction?
Just got a message from the vasculitis doc in response to me message asking for a slower taper. He said go ahead and reduce every two weeks by one mg. ( Instead of the 2.5 every week he originally prescribed )
Can you help me think this through? Can this work better for me? I can't think;can't sort this out right now.
His plan: reduce one mg every two weeks to 20 mg. Then at 20 drop a half mg every two weeks until I reach 10......then he wants me to do the DSNS
Sounds infinitely preferable to me! 2.5mg every weeks is a tremendous rate and most people would struggle with such a change in dose so often. Try it and see how you get on.
I always try and do 0.5mg if the 1mg doesn't work. Sometimes the withdrawal hooked into my fibromylgia pain and made it too severe, especially my right shoulder. A dead slow nearly stop method really helped stop that.
Yes it can be but if a drop didn't work for me I didn't worry. So emotionally and mentally I was ok as long as no pmr symptoms. It wasn't the pred that caused/causes me difficulty. It's the PMR. If symptoms come back it's not a failure, it just means that the inflammation still needs more pred. I am at 6mg after 3yrs and am ok with that. If I flare and have to go higher, it's not preds fault or my fault - it's the PMR. Sometimes the discussion about pred overtakes the concerns of PMR GCA. I can understand it at high dose but for me they are conditions I don't control. I can help myself by eating right, resting right, being as active as possible and taking enough pred to stop inflammation causing pain.
I have just GCA diagnosed March 2017. I too felt every milligram. At 25mg I was still getting all the Pred effects like sweats and jitters but also got the withdrawal fairly keenly. My muscle weakness was quite pronounced by this point. As I’ve got lower my withdrawal, like Poopadoop, “hooked into fibromyalgia pain”.
I'm at 23 and holding for two weeks. It's reassuring to hear you were weak and sweaty at 25.....I'm still sweaty, jittery, and slightly headachey in the afternoon but, the weakness seems better today: its been five days thus far. How about your face? I get all sorts of strange sensations in my face. Pressure, twitches in the eye and cheek.....haven't read anything on here about that yet... My doctors think I'm a pure mystery. Not in an interesting or provocative way---A pain in the tush, slightly delusional, sort of way. Maybe I should create a post about the facial symptoms. ( ? ) So many wonderful answers come through posts.
I can’t recall my face feeling twitchy. I guess if one has the jitters, couldn’t it affect the face as well? I don’t know about head pressure but I sure felt weird and heady.
No, no neuro issues/fibro.... never had twitching before GCA. Wasn't sure if the pred was doing it or the GCA. It tends to be on the left side of my face. Cheekbone and eye area: Sometimes it feels like the eyeball itself is doing a bit of a jiggle. I get serious cramps in my feet and toes in the afternoon and evening hours---never had those before either.
You're right. Oftentimes It does happen when I'm tired. Thanks
I had twitches below my eye for a long time with PMR. And odd ones in hands. Calmed down a lot after I went on pred but still get odd twitches in hands - notice them when the mouse jumps
so, just thinking here.....GCA and PMR seem to be mates oftentimes? At what point does PMR , generally, show itself in a person with GCA? ( If it is indeed going to.)
You can have PMR on its own, you can have GCA on its own - and some people have PMR symptoms from the start of GCA and others only experience it when they are reducing the pred dose and get to lower doses.
You might have to repeat that for us all on the new post , as you know how useless I am with the computer stuff so I will be incapable of linking it on , luddite syndrome or just techy brain deficiency , I haven't got a perfect diagnosis on that yet either !!
This isn't a direct answer to your question, but maybe something to keep in mind. I wasn't concentrating on the taper so much. I guess I was treating my lifestyle more holistically so I changed a number of things, all of which seemed to work together to help me. These changes were triggered by pred side effects. Because my blood sugar went high I cut out nearly all carbs from grains, certainly anything overly refined, and no more prepared foods. Fortunately I don't have a particularly sweet tooth, so no addiction to sweet treats. Until then I really had no idea how much wheat I ate. Because my doctor threatened me with alendronic acid because of "low bone mass" I was doubly keen to get lots of walking in and took up a couple of other activities to improve my bone density, like Nordic walking, Tai Chi. I learned to pace myself and actively avoid stressful situations including not listening to the news before bedtime. Also because of the threat of osteoporosis I continued to work on improving my diet to get all the micronutrients I needed.
So, you can see from this that the pred taper became almost incidental to everything else. I knew I would taper by this much using dead slow method, and had it all planned out in a book, and that's what I did, occasionally tweaking as a situation required - in early days more often than not it was to speed up the taper, later the other way around. At that time I proactively slowed down the taper as my dose became lower, not waiting for any sign of a flare. All along, from 9 mg, I had "niggles" but I never let them worsen and I believe it was my tolerance of them that was one of the things which enabled me to continue tapering. It was only at 1.5 two years ago that my doctor suggested I use up my tablets, stop and see what happened. I happened to have enough tablets to proceed with DSNS to zero so with some misgivings I tried. But It became apparent quite quickly that probably even 1.5 had been a step too far. It is two years later and after frequent attempts to taper, first from the 2.5 which I ended up on after stamping out the flare, then 2 where I seem to have been for months, I am now over halfway through a taper to 1.5, at last. I feel fine. These days I don't have the PMR "niggles" but I definitely have stiffness from osteoarthritis.
Along with all this from the time I was tapering from 8 to 7 (starting then mostly because she said steroid treatment interfered with light therapy) I've seen a physiotherapist who among other treatment has given me low level light therapy. I think it helps. I certainly begain to feel much worse when I attempted to wean myself off the therapy. But the last few weeks I think I've turned a corner not just with the pred but also with the light therapy. bioflexlaser.com/
Yes my consultant asked yo drop in 10mg from 50to 40 for month then 30 when i dropped to 20 had relapse.When i started again from 30 I am doing it my way. At moment on 17.5 for week then trying 15mg.Still get odd head pain occasionally and get tired and irritable butbtgats because adrenaline hasnt started to catch up yet. Everyone is right you must do what is right for you.
Hi, I’ve gone from 60 to 25mg since April. I feel rotten for about three days with every change headache, dizzier than normal and moody but then I am all the time now. My Rhuemy has told my doctor I need to do this taper:
Drop 5mg a week till I get to 15mg
Stay at 15mg for two weeks
Then 12.5mg for two weeks
Then 10mg for a month
Then 1mg every month
My GP laughed so I think she’s on my side.
I was expecting to stay on a low dose for a considerable time this sounds like I just go to 0 is this normal?
Superman , however I heard tell that when Wonder Woman tried it she had to return to 20mg because she had an almighty flare!😋😂😂😂
I often wonder wether the Doctors who create superfast tapers like this have either forgotten , or never really knew that PMR or GCA isn't an infection that is cured and quickly goes away.
I sometimes wish I get broadband as superfast as some tapers that GPs try to make people use , their steroid reductions are like 6G +++ with bells on and a spoon if sugar on top .
How many people can handle that rapid of a taper? If you asked the first rheumy I had-he'd say everyone ( under 100 ) he has treated handles it great( except me). The Internal medicine doc said: Most people (" he sees GCA once every five years ") just taper down and get on with life. ( wouldn't that be nice? ) The vasculitis specialist on board now considers me to be a " challenging case. " ( can't taper like most/repeat flares ) .............Keep in mind I don't know how many patients he has either. At least he is more knowledgable about GCA and open to a discussion about slow tapers.
I don't know if they are lying or have just not had that much experience of GCA/ PMR patients , especially with other Chronic conditions , but are trying to cover up their ignorance with the usual level of medical hyperboly .
Unfortunately , when you are in a clinic situation and reliant on working with them towards a recovery it is virtually impossible to pull them up on it politely and not make them even more resistant to common sense.
And they accuse their patients of oversensitivity and the constant need for reassurance , the irony just bellows really , doesn't it!
It's lying when they claim to have loads of patients and have maybe seen maybe half a dozen! Which is the truth for GCA however you look at it - and in the UK most PMR patients never get to a rheumy in the first place.
As you know, we aren't tapering relentlessly to zero, but rather to the lowest dose which controls the PMR (and GCA) symptoms until the disease decides to go into remission. Pred induced remission is not a cure. So you're right to be expecting to have to stay at a low dose for some time, at least two years and quite possibly longer. I'm just starting my fifth year now, more than half of the last two years I've been around 2 mg.
Slowly and in the best time for you ,I was nervous because we get very dependant on them ,mentally as well as physically .I tried three times .Slowly was the successful one and never feel you are failing if you need to go back up one .It can be one step forward and one step back .Imagine how many attempts people make on stopping smoking or dieting ect .We applaud every attempt they make and yet we seem to feel obliged to rush off the steroids as a badge of honour .Its not a race it's process that needs to be done to suit the individual.
Well, it’s an interesting point though. This idea of addiction comes up and there does seem to be the idea amongst some docs that somehow we like the extra boost or something. During my last appointment with a Rheumy they seemed to be trying to gauge my willpower for kicking the habit. I also bumped into someone from the pharmaceutical world who was fascinated to hear what it’s like to be supercharged with heightened senses as if I had been given super powers. I was on about 30mg at the time so didn’t have the normal brakes when I put him straight.
I never mentioned the word addiction ,I simply meant that we are afraid that without the steroids we may go back to square 1 It was not my intention to open a debate on addiction .
Sorry, if you feel uncomfortable with this coming into your post; I know you didn’t use the word addiction. However, you did use the word dependency which I think lies in the same camp and often used interchangeably. Bringing in smoking and dieting which to me bring in both words made me think it ok. Sorry if I misread it.
You've had sound advice so far and certainly you're tapering too quickly. Your poor body can't cope before you're giving it another stress to deal with. Take others' advice and use the DSNS method. Just because your doctors says doesn't mean it can - they need educating too and don't let them scaremonger by saying you need to get down quickly - if you use the DSNS method you will come down quicker than yoyoing - as you will do if you follow his/her current tapering advice
I have always suffered when reducing and was taught from the start to learn the difference between a flare and withdrawal symptoms. Withdrawals come on the day you reduce and go after a few days, you can feel awful. A flare comes on anytime and gradually worsens, meaning you're not on a high enough dose for your inflammation levels. We are all different and you have to get to know your body and what works for you.
The fact that Tylenol (Paracetamol in the UK) helps your headache means it's not a flare. They only help to reduce the severity of my withdrawals and never touched a flare.
Thank you. I appreciate your response. The latest is posted above but-- The jist is --doc wrote me to say "stay at 23.5 for two weeks and taper by one mg every two weeks if tolerated. Call if needed." Once I get to 20 he wants me to continue the taper by one half mg every two weeks. Once I get to 10 mg he said do the DSNS
I'm so tired of fighting/pleading with the doctors. Very weary. I can slow it more but if I do so by much, I'll run out of prednisone. Thoughts?
I've been trying for years to reduce and can't seem to do it. Stilll want 30 mg to feel good. Right now I've been taking 25.5 a few days and today I feel so crummy, I can't stand it. This is added to fibromyalgia, too. I keep thinking of wishing I could go to sleep and not wake up.
I’ve just picked up on this & have some questions for you, how long have you had PMR, have you been diagnosed by a Rheumatologist & do you have any of your Blood Results?
I can see you also have Fibromyalgia so that’s not a good combination, do you have treatment for this?
If the Fibro isn't being controlled by the right medication then the effect on the pain for both PMR and the Fibro starts to create a vicious circle and you can never be sure which one is causing the greatest issue.
Sounds like a trip to a Rheumatologist with both Fibro and PMR Specialisms who can create a more individual pain medication plan is essential in this case.
Hi trevgrrl, I have fibromylgia as well as PMR. It is a tough combination and the pred doesn't help the fibro. If you have pain that the pred isn't helping it could be the fibro. I presume you have some pain meds and something like amitryptiline to help with fibro. I had a terrible fibro flare start a couple of months ago I thought pmr so increased pred by 5mg but it didn't help. Then I max out my pain meds and anti depressants/amitriptyline to 40mg over a week or two and that helped as did TENS machine and low dose capsaicin cream.
I know that terrible feeling of hoping you could just go to sleep. But despite the upset and pain I have just about always felt glad I did wake. Please see your Dr and explain how you are feeling. You need help to deal with the physical and emotional problems having 2 chronic conditions based on pain and fatigue bring with them. Please go the the drs and let us know what they say and do. Please keep reaching out. Xx🌻💜
Depressed emotions , health related anxiety and stress can be part of the mix , recognising them and finding ways that improve your mood and general well-being day to day , no matter how small , can prevent this turning into Depression.
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