To Taper or Not?: I have been on 25 mg Pred for 3... - PMRGCAuk

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To Taper or Not?

I have been on 25 mg Pred for 3 1/2 weeks splitting the dose 15mg at 5:00 am and 10 mg at 3:30 pm. I still have some shoulder and/bilateral arm pain about an hour before morning dose, sometimes during the day and sometimes slightly before afternoon dose. Degree of pain varies. Dr. Is talking about decreasing dose. My 94 year old mother was just released from the hospital and I have been helping with her care. Hired someone yesterday full time to care for her. Had a car accident last week...no one was hurt, going slowly, just driving minimally. Feeling timid and not as clear headed as pre PMR. Drive with a patch which eye dr. said I should do. Not working since diagnosis but servicing clients by phone. Again, Pred head is apparent with details of certain cases. Must review specifics at times. I told the doctor I was not sure I was ready to decrease. I am still adjusting to the diagnosis since only it's been 2 months. I don't want to baby myself. ESR rate was 18 CRP 14. Big drop from onset. Any ideas?

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Hi Sandy,

Good about ESR/CRP readings, but that only shows the Pred is working on the inflammation- but any better news is welcome.

With the hassle you've had recently then no, not a good idea to reduce medication. Both helping your mother and the accident will have increased your stress levels, albeit temporarily.

If you're taking 25mg then that should really have got a grip of the pain by now. I'm wondering if you actually have GCA rather than PMR, if so then you shouldn't be splitting dose - I know I suggest that initially, but that was when we thought it was PMR. Either that, or you are not processing the Pred as well as some and aren't getting the full benefit, or you've still doing too much for the Pred to cope with. The fact that you need to take your afternoon dose less than 12 hours after your morning dose indicates it's not sufficient.

Whatever the scenario, tapering is not a good idea, and maybe you and your doctor should consider increasing for a week to see if that helps. Sorry, I guess that's not what you want to hear, but you need to get your pain sorted sooner rather than later.

Take care

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My sentiments exactly! I told the doctor I didn't think I was ready to taper. She was OK with that but then I thought I better consult my support group on the other side of the pond.

Dr. assured me it wasn't GCA since I really thought it was. I had blurred vision when I drove and eye dr. said it would improve when inflammation decreased. I don't see much change. I did have blurred vision about a year ago with Botox injection and it totally cleared up after 3 months. Dr. thinks this symptom is related to that and inflammation. She treats lots of GCA patients. I had the temporal artery biopsy and it was negative and when I said I was already on 10 mg of Pred at time of biopsy and wasn't convinced results were accurate she said they were. I have confidence in my Dr. I do not think I absorb Pred well. I weigh about 103 pounds which is lower since I have been on low carb, no added sugar diet, take Tumeric tablets (1450 mg per day), no alcohol and walk about 2 miles per day.

The time is manageable but really varies in intensity. Does pain decrease the longer I am on Pred? PMR Pro said to only expect 70% pain improvement for some people. Should I just accept this or try for better?

Thanks for always being there for me.

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Hi again,

Can't answer on the pain - don't think there is a definitive answer. Some people , as we've said, do get complete relief. I did, but maybe it was because I started on so high a dose, maybe because I think I have a high pain threadhold level anyway or just luck!

Some I know aren't that lucky, but you should get enough relief to enable you to lead a reasonably normal life, or as normal as you can with PMR/Pred - or at least from a pain perspective.

It might be worth trying an increase for a week, even a few days, to see if that helps, if it doesn't make any difference you can come back down to 25mg again.

Did your doctor have any suggestions on your continuing pain?

Hopefully somebody who has more experience of not absorbing medication may have some advice for you.

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Thanks. I appreciate all your suggestions.

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Tried to reduce 1 mg despite all the stress from mom and car accident. First day after 24mg was horrible so went back to 25. Trying every other day for 2 weeks. Dr. says "hopefully" my body will adjust. If this doesn't work, I'm going to dead slow method. Gorilla is on my back big time!

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Yes, that's a good idea. Lots of people use it for lower doses, but if you're particularly susceptible to changes in dose you might find it's the only way for you all the way through.

Hope so. And although it may seem you're only taking tiny steps, then if it's works, then tiny steps will still get you there!

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Thanks so much. I may very well need baby steps. Experimenting with every other day for one week if I'm not in too much pain.

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Hi Sandy, wow you have had a pretty stressful time of late, what with the worry about your mum and her care, finding someone trustworthy to take over, then your car accident and I suspect still trying to drive yourself too hard. Glad that your CRP and ESR levels have dropped.

What is the eye patch for? Have I missed something in a previous post? 25 mgs is a high dose for PMR. Is there any suspicion that GCA might be present?

I personally would not begin a taper until my body had stopped jangling so much and the stress had died down. Then it would be an incredibly gentle DSNS taper. Watch those spoons. I can relate to the Pred head and the detail escaping. Sometimes I feel like I am casting about in an empty dark cupboard for a piece of information. I hope we get our sharpness back!!!

Take care and baby yourself when you need too.

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Thanks for your meaningful response. I don't feel so alone when you give the "empty cupboard" example. See post to Dorset (also known as Corset) lady re. eye patch for driving... it helps with blurred vision which I only have when driving.

I will not taper at this time. Wish I could do more to stop pain fluctuations. Using a lot of spoons to try to fix this! I realize the impact stress has on this illness. As we all know, decreasing it is difficult and requires intention, I tried Tai Chi and could only stand 40 mins, I was better with Qui Chong which I only did once. Zumba for about a half hour helps. My Dr. says to stay as active as possible which I feel as (self imposed) pressure. I am trying to win patient of the year award which smacks of Type A personality. Changing at 69 is a bear!

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It is all very well for your doctor to say " stay active" does he know you?

I simply had to hibernate initially, I am now building muscle tone and flexibility mostly by walking on the flat. Up to 6,500 steps a day aiming to make 10,000 steps feel as normal.

40 minutes is pretty good you know. It's like we have ton weights tied to our limbs.

Corset Lady made me laugh I hope it made her laugh too.

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Yes, the Doc knows I was an energizer bunny and went to the gym often before PMR. She wants me to lift weights (light) since I have osteoporosis and need to maintain muscle tone which I am rapidly losing. At first, I could only do one activity in the morning then rest for the remainder of the day. Gradually, I got up after a timed one hour rest then took a walk. This made me feel much better and not so "sickly." Yesterday, I didn't lie down, only walked a total of 1.3 miles and felt less pain when I woke up at 4:00 am for the day. I go to bed early since I get up all excited to take 5:00 am Pred. This is quite a lifestyle change! Ha! Ha!

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To be honest, at most I'd wait another week - you are at a dose that should be well above what you really need for PMR and your symptoms and blood markers have resolved well. But don't reduce in large steps - try 1mg at a time and if each works you can do that every 10 days to 2 weeks at this stage. The longer you stay at a high dose the harder it becomes to reduce.

It is difficult to tell if it is PMR or pred or both that is causing the brain fog - but being able to lower the dose will probably help that and probably also the double vision if the doctor is confident it isn't GCA.

I didn't mean "only expect" 70% but that that is what some people get - the point being you could stay at 25mg for months and the pain not get any better than it is now. And staying at 25mg for that long would introduce other problems, possibly steroid myopathy where you muscles deteriorate and that can be painful too. It is always a case of striking a balance with PMR - more so than with GCA I think.

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Dr. and I decided to decrease by 1 mg for 10 days and see how it goes. Thanks for the advice. I'll def be in touch.

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Went from 10mg to 9 for afternoon dose. Pain returned in arms and shoulders during the night and morning. Will this subside as my body adjusts? Is it better to reduce morning dose of 15 mg? Should I skip a day in between reduction?

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It may be better to reduce the morning dose but it is impossible to say. You just have to try and see which works better for you.

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Thanks. How about doing regular dose and new dose every other day? I am sure I need a very slow approach since pain returned with a vengeance. I will take old dose today and reduce morning dose tomorrow. Thanks for quick response.

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If you want really slow - read this:

healthunlocked.com/pmrgcauk...

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Been going every other day with new dose old dose and doing better with pain. How long do you suggest doing this before I do just new dose? Then when do you suggest decreasingly another 1 mg? In no rush.

Thanks, Dr. PMRPro

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Until you feel stable - no-one can say how long but at least a couple of weeks.

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Thanks!

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On DSNS how long do you stay on new dose before decreasing and starting process all over again?

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hi Sandy

There is an app available via this group. Even if you don't use it it explains various tapering methods to try. I tried to copy link but failed miserably but if you do a search on this group with app as keyword you will find it. I will try again!

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Thanks. It worked, I could open it. I'm not sure if what I'm doing is wise. I def want to use 52 day DSNS method when I get to around 15mg. Now I'm trying for 2 - 4 weeks to drop each mg from 25. I'm on 24. I alternate old and new dose every other day and it's fine. Tuesday will be a week. Then I'm going to new dose 100% for a week. If that goes well, I'll start next drop. If it's too quick I'll stop. Does this sound too optimistic? I'm really not in a rush.

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I think if you feel ok as you go down it's fine. I get pain in shoulder when I reduce but it goes after a few days. if leg pain increases I tend to stop reducing and even go up0.5. hopefully you will recognise your own little quirks to guide you.

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Thanks. I really appreciate learning about your experiences since you are ahead on this unpredictable journey.

My doctor wants me to lift weights so I did very light weights yesterday in a half hour class in the morning. It was OK but I still have some shoulder and arm pain. I'm just used to it. Rested afterwards.

Also saw one client yesterday afternoon. It was tiring but gave a brief feeling of being "normal." I love getting dressed up and advising people about retirement saving. I came home and rested on my bed from late afternoon until bedtime. I feel like Cinderella! Most of my time is in pajamas!

Did feel like I did too much but I have no idea what PMR balance is.

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I believe everyones levels and balances are their own. If you feel.like you over did it you are finding the upper edge of what you are capable of. It's not just the overdoing it I find. it's ensuring proper recovery. I spent a week clearing a room 2 weeks ago. Had a visitor that I wanted to see so worked harder than I should. It has taken almost 10 days so far to recuperate as I had appts at hospitals etc 3 days last week so it bit into rest. I know now that at the moment my body isn't capable of such work. I always ask how I can easily limit my dogs exercise when her arthitis plays up but fail to do same for myself. Silly isn't it.

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Not silly at all. Sometimes, love for our dogs trumps self love. My Joey is blind has arthritis and is the ultimate best friend. I watch her rest, try to learn from her but don't get the lessons. Today is a new day...hopefully, I'll learn more!

I'm studying the taper methods on the link you sent me. When you reach a new dose how long do you stay there before going to the next lower dose?

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My dog was very ill as a puppy and had several surgeries and most of all her back right toes amputated. I learned a lot from her when trying to manage chronic pain. I think she was sent as life lesson! and a drain on my bank account once insurance ran out.

I am using dead slow nearly stop. I am on 13mg going down to 12mg. Last Friday was the arbitrary start day. I took 12mg that day. The next 6 days I take 13mg. Thursday I will take 12mg then 13mg for 5 days. Then 12mg andv4 days of 13mg..then 12mg and 3 days at 13mg. then 12 and 2 days at 13mg. then 12mg and 1 day 13mg. I am then at 12mg. so I take 11mg next day and 12 for 6 days and so on...if I found that 11mg wasn't helping as much I could stay at 12 and then choose an arbitrary start date for next drop .

it's hard to explain and there are several other methods.

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Dogs are def here to teach us how to operate in the world. Thanks for the explanation re. DSNS. I need to put it on a calendar. Are you using 26 or 52 day method?

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no idea lol

see my calendars on an open message for you

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Thanks

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Thanks

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Hi, I’ve had a relapse so saw my GP n decided to go up to 20mg from 4mg. I was have a lot of pain n other symptoms. I’m thinking that I will stay on the 20mg for 3 weeks, then do the dead slow process of

decreasing do you think it would be better to just do 2 weeks of 20 mg instead of the 3 weeks?

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How long have you been back to 20? That was a very big increase to manage a flare. Had you been okay at 5 before you reduced to 4? I'd have thought something like increasing to 9 or possibly 10 would have been less drastic.

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I think this was meant for MaryA

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Weird, isn't it. Don't worry about it, Sandy1947. I think we all press "reply" to the appropriate person, but the position in the list seems a bit strange at times. Who knows where this reply to you will show up!

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I’m starting my second week, but I was in a lot of pain. I made an appointment to see my GP thinking about going up to 8mg maybe but he suggested to zap it with 20mg. Than I talked him into the Dead Slow plan so just wondering if a 10% drop after 2 week sound reasonable ?

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MaryA: Do you REALLY need 20mg? Have you tried 10 or 15mg first? Often just adding 5mg to the dose at which the flare occurred is enough. The trouble is, a high dose doesn't zap it in the way they think and all that happens is that you have further to reduce as a result.

Yes, 10% after 2 weeks sounds reasonable if you don't want to try 15mg to see if it is still enough - and that is 2 lots of reduction sorted at a stroke!

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This response was sent to my email. Not sure Mary got it.

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Anyone following gets notifications and I think if you reply to the original post you get it. I get notifications of most things - occasionally I don't though...

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I did 🌻

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Sounds good, seem to be better today! I will take your advice and finish out this week of 20mg and drop down 10% next week. Sorry I got in middle of your conversation with Sandy. This feeling better is awesome! 😍

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I'll try every other day and if I still have bad pain, I'll go to the other method. Does this make sense? It's been 7 hours since Pred dose and pain is still pretty bad...just a little better.

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Sorry Sandy, I was reading your post n got carried away!

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Since you said 25 mg is a high dose and I have osteoporosis, is there another method besides the dead slow method that reduces in a little less time? Should I be concerned about staying on a high dose for another almost 2 months on Dead Slow method? I feel like I've lost so much ground today with pain. In bed in pj's after lunch. Stopped that a while ago. The gorilla wins today!

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If you are having this much pain with 25mg and you can't reduce at all without it coming back I think your doctor needs a rethink, at the very least some more investigations. This really isn't "normal" with PMR.

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She thinks the pain will improve over time. I will try reducing every other day and see what happens.

What do you think is happening? This is my first attempt at reducing.

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If the pain didn't improve significantly after a month of pred at 25mg there has to be a big question mark as to whether it is really just PMR. That is the point of pred in PMR - it is the only way to manage PMR/GCA and one of the diagnostic criteria has been a good response to pred.

And you can reduce by going overnight from one dose to the next - you can't get faster than that. And you can do it in bigger steps. But whether your body will accept it without protesting is another matter.

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My PMR symptoms were significantly improved on 25 mg of Pred...just not 100% pain free.

My body seems to be resistant to immediate dosage change. I am trying to reduce old dose new dose for 10 days to 2 weeks . Had old dose yesterday and feel better this morning. Still have more significant shoulder pain than before decrease and reappearance of slight pain behind my legs. I'll see what happens over time. If this doesn't work I'm definitely trying dead slow method for every 1mg decrease. That means I'll be off Pred when

I'm 100!

I feel sure I have PMR. Now I can't get rid of tendinitis in my wrist...suggestions?

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Even the full monty DSNS starting at 6 days old dose is less than 2 months to reduce 1mg! So you'll get there in about 4 years - you aren't 96 are you? It just felt that way with PMR...

However - the length of PMR journey for half of patients is between 4 and 6 years. So that fits nicely.

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Thanks for the encouragement! 69 and PMR feels like 196! I will stick with every other day for a week before changing to DSNS plan. The stress of getting my 94 yr old mother settled after hospitalization (my sister and I got live in help and will leave tomorrow) and having a car accident last week is not helping reduction. Being home should help.

My car will be ready Saturday. I have only been doing minimal and essential driving but now I will be hyper vigilant about focus and paying attention. I was somewhat distracted pre PMR. This was a big wake up call.

You are the best. I couldn't get through one day without your help.

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