Tapering over the next 42 days

[SheffieldSonia]

Hello Everyone

I need help and advice from the Aunties. Since arriving in Scottsdale on Jan 16th. I had a week of jet lag followed by a chest infection. Have had probably 5 good days since I arrived. My 3 sisters arrived on Feb 1st for the holiday of a lifetime and I have been unable to do much with them due to the pain and stiffness I am experiencing, I so hate to rain on their parade.

My GPs plan was for me to be on 12.5 until 24th Jan, having reduced from 15mg whilst in the uk then take 10mg for 4-6 weeks. I have gradually deteriorated on 10mg to the point where I am in pain most of the time, hardly sleeping tearful and weary. I worked on the theory that it could be steroid withdrawal but it is getting worse instead of better.

I have tried upping the dose to 11mg with little or no effect.

I have 42 days left of our holiday. Pred wise I have 93- 5mg tabs, 22- 2.5mg tabs, and 120- 1mg tabs to play with.

I currently take my Pred at around 5am. Any relief usually kicks in around 1pm and I usually feel my best around 6pm- 9pm.

I don't particularly want to see any Doctors here as its like starting from scratch plus I feel I would much rather take advice from fellow sufferers who have worn the t. shirt etc.

I read the posts on a daily basis and have tried to work out some sort of plan from the advice you give to others.

Steroids scare me and I feel a bit of a failure having to increase the dose but something has to change just to give me some quality of life.

My sisters and family here can't get their heads around my condition and ask me on a daily basis if i feel any better??

My husband M has dementia and knows that I am not well but would have no idea what is wrong with me if you asked him. His repetitiveness is very wearing when I am tired but on the plus side he sleeps all night, I am envious and does not wander.

I haven't got the brain power to work out a plan for the next 42 days. Should I go back to 15mg for a few days to give me a kick start or back to 12.5mg?? have I got enough tabs to do this?? Would this be in your remit to give this advice?

I am so brain fogged it took me forever to find how to access the site to write this post.

Thank you in advance for any helpful advice you can give.

[Soraya_PMR]

Were you ok on 12.5?

[SheffieldSonia in reply to Soraya_PMR]

yes. Not too bad. I had some manageable pain but had a life of sorts.

[Celtic PMRGCAuk volunteer]

Hello Sonia - I'm so sorry to hear that your pain has returned to the point of spoiling your special holiday with your family. I would guess that it is the combination of the reduction in steroid dose/the chest infection/the travelling that have caused this setback.

If it was me, and things were previously running smoothly at 12.5mg, I would return to that dose to get control of the inflammation in the first instance. Thereafter, as you have had this blip, perhaps future reductions would prove more successful if you reduced by just 1mg at a time. Plus bear in mind that you have a long return journey to do, not easy at the best of times with PMR, let alone in the early days following treatment.

I do hope that returning to 12.5mg will relieve your pain so that you can enjoy the rest of your special holiday with your sisters.

[SheffieldSonia in reply to Celtic]

Thank you. Will have to work out if I have enough tabs. Just off out with the sisters. Am getting a 'grip' so to speak.

[Celtic PMRGCAuk volunteer in reply to SheffieldSonia]

It sounds as though you do have sufficient tablets to play with, and you're sounding positive so fingers crossed for you, Sonia.

[PMRpro Ambassador]

Whatever your GP's plan may have been - it was wrong. If things are getting worse, you are on too low a dose. No if's or buts, and the infection made it worse. If it gets worse after starting it is NEVER steroid withdrawal,

It is unlikely that you will get prednisolone in the USA - but if you go to a pharmacy and explain you have lost/mislaid/miscounted your dose to bring with you and show them the (empty) packages you should be able to get some emergency supplies in the form of prednisone which is an almost direct equivalent. They may not play ball but with a bit of luck they will without you having to see a doctor. If you do - say the same. It is dangerous to just stop pred so they should help.

There is a good reason our advice is to take AT LEAST double what you think you need (and pack them separately).

Like Celtic I hope 12.5mg will do it - but be prepared, you may need 15mg. And a doctor to get it.

[SheffieldSonia in reply to PMRpro]

I was diagnosed just before Christmas then suffered a really bad chest infection. I was under the care then of my GPs registrar who spoke to someone in Rheumatology who advised 5 days worth of antibiotics. I was on 15mg of Pred at the time. I had a really miserable Christmas and New Year full of stiffness and pain. I was reduced to 12.5 on Jan 2nd and told to reduce to 10mg on Jan 25th. I was told to reduce to 9mg after either 4 or 6 weeks on 10mg. that is the plan I came to Scottsdale with.

On reflection I have had very few days since diagnosis when I felt reasonably well with manageable pain.

I am a tough old bird and can take pain but this condition has had me on my knees. It literally came on overnight. Taking into account, Christmas, New Year, two chest infections, packing for our holidays and a long haul journey I have had little time to get my head around it. I thought the plan I had been given and the amount of Pred would work and trusted it. I thought the level of pain I was experiencing was what I had to bear and that it would last a few months!!!!!!!

I now know differently. Doctors appear to be almost obsessed with reducing steroids without taking into account how the patient feels.

I feel so much better mentally and will go back to the UK a much more educated person. I honestly don't know where I would have been without you all. You offer a calm sensible often humorous take on problems based on facts and experience. I feel I may need to educate my GP on the idiosyncrasies of the dammed condition and that it doesn't follow a plan because it is written down in a text book.

From my heart Thank you.

[PMRpro Ambassador in reply to SheffieldSonia]

"Doctors appear to be almost obsessed with reducing steroids without taking into account how the patient feels."

Got it in one - and finding one who has learnt NOT to think that way is a real gift! I think this group (and the others) are doing a sterling job in education!!!!

I do hope 15mg is enough - the 15mg was obviously NOT enough over xmas/NY partly because of the infection and abx and your GP should have picked that up and tried 20mg. Then you needed 4 to 6 weeks on that starting dose before even thinking about reduction.

And I think part of it is you have a choice: you can cry or you can turn it on its head and laugh. Which doesn't make your eyes all red and swollen. Pred can do that on its own...

Enjoy the rest of your holiday.

[Hidden]

Hi Sonia

I got calculator out and if you are home on day 43 you do have 42 doses of 15mg (plus 9mg left over). If I am correct you can easily cover the 12.5mg for your holiday. Hope that gives you wiggle room! Hope it picks up.

[Hidden in reply to Hidden]

Double checked my arithmetic to make sure. Definitely 42 x15mg but with 12.18mg left over. So if you have to go to 15mg if 12.5 doesn't work in the next few days then you can manage but it will be cutting it fine so I hope you can get some ordered for home if you have none stocked.

[SheffieldSonia in reply to Hidden]

I will have a prescription waiting for me when I get home so am covered on that front. I will also make an appt with my GP so I can see her as soon as I return. Thank you for working out the maths for me, it was a big rock off my back. Prior to diagnosis I would have done it in my head, now, just about impossible.

Thank you so much.

[Soraya_PMR]

I’ve done some calculations! This will be determined by your available steroids (I’d have thought you could get resupply fairly easily?)

Anyway, DO NOT THINK I AM PRESCRIBING, only you know what your GP wants/advises....... but this is what I would do in your situation...

3 days at 15mg to squash the inflammation (9x5mg tabs)

3 days at 14mg (6x 5mg tabs, 12x1mg tabs)

14 days at 13mg ( 28x5mg tabs, 42x1mg tabs)

22days at 12.5mg (44x5mg tabs, 22x2.5mg tabs)

That’s 42 days, gives you 6x5mg tabs left and 66x1mg tabs left, so you’ll need a quickish GP appt on your return. It also avoids cutting fiddly tablets.

This hopefully will ensure you can enjoy your holiday. Please ensure that your GP has you registered as a CARER. And ensure he takes this into account when planning further reductions. I understand the strain of caring for people with dementia, and the impact is not easily appreciated by others who haven’t experienced the strain of having to think for others. And do not feel like a failure, YOUR PMR is not conforming to your GP expectations, that is all. And I expect you’re trying to do more than usual. I hate to hear that you are tearful, hope you feel more in control soon.

Someone with a mathematical brain please check my arithmetic!

[PMRpro Ambassador in reply to Soraya_PMR]

I didn't even go there - I can't even manage to work it out for me!!! Luckily if I say to my GP I'm going to be away she hands out anything I want!

[SheffieldSonia in reply to Soraya_PMR]

Soraya, this looks like an excellent plan I will start tomorrow and let you know how I fare. Such good advise re registering as a carer. I'm someone who has just got on with things taking what life threw at me in my stride. I will be 77yrs old at the end of the month and now need to re evaluate my life style and accept a more gentler way of life.

Thank you so much for your invaluable advice.

[Soraya_PMR in reply to SheffieldSonia]

Also have a chat with the practice manager, they’re usually up on the carer aspects. Get her to go through benefits with you, hubby may be entitled to something. And there may be something social services can do such as equipment, but certainly getting your circumstances known to them is a good idea.

Time to reap the rewards of a working life, this is why you both paid tax!

Looking forward to a happier, more in control update. Meanwhile enjoy your family holiday x

[Hidden]

Soraya (&sonia)

The basic premise is ok in that there is enough pred to do that schedule, but it will involve more of the 1mg stock. Using 5x1Mg to replace a few days of the 5mg. There won't be as much left over (over estimated 5mg by 14 tabs)

BUT I have double checked and 42 days of 15mg with 12mg left over. Thus will be enough pred if on that reduction plan.

[SheffieldSonia in reply to Hidden]

Than you for the arithmetic, its one less worry for me.

[SheffieldJane]

You have all my sympathy and empathy. These awful expectations we put on ourselves about “ holidays of a lifetime” and wonderful family reunions. The stress is really hard. I was often snarly and unpleasant behind closed doors with my husband, so that I could be angel- like with my two daughters and 4 grandchildren and their husbands in Australia. I don’t suppose that release is open to you.

I wouldn’t hesitate. You are in a flare. Go up to 15mgs and see if you can stop it in it’s tracks. If not do see an American doctor and get yet another opinion. You might strike gold!

Relax and breathe, they love you whatever happens. Do only what you feel like doing and perhaps negotiate some “ me time” “ alone time”. A day in bed time. Restore your batteries and keep smiling Sonia.

[Hidden in reply to SheffieldJane]

That is great advice sj. I had private bedroom time for resting and grinding teeth during Xmas...provided by my sister.

[PMRpro Ambassador in reply to Hidden]

To be honest I can't even envisage more than a few days with any of our family without requiring a major paddy! We had cousins with whom we get on very well for a few days last week - the relief when they were delivered to the airport was palpable!!! Younger daughter is OK - especially on her own. We are planning a trip to the UK at the end of April - I'm desperately hoping a friend will have us rather than stay with the older one - I can't face the thought of the 2 cats and the dog sharing our bedroom...

[Hidden in reply to PMRpro]

😂 it is very hard to be on best behaviour.... i can barely manage an hour somedays. I have a child gate at the bottom of my stairs. There is no way I am sharing my bedroom with my lovely hound. My friend sleeps With her dog. I keep telling her I don't know how she can. I see what he gets up to! I taught my dog not to "kiss" me. Yuk! Lol.

[PMRpro Ambassador in reply to Hidden]

Absolutely - YUK!!!!! Nat now sleeps with her hound - a rescue Podenco who I will admit needs lots of love. And the cats will do anything to get into the bedroom which she vacates for us.

Most human infectious disease originated from domesticated animals...

[SheffieldSonia in reply to SheffieldJane]

Than you Jane for your kind words. I feel a little cheated that I have missed some special moments with my sisters due to me being in so much pain plus a trip with them to the grand canyon. I am learning from you all as I go along and will go home much better armed.

I have other questions I need to ask but will get the pain under control first.

Thank you so much.

[DorsetLady PMRGCAuk volunteer]

Hi Sonia,

Late at the party, but I would say a short sharp burst at 15mg, say 5 days or so, then if okay back to 12.5mg. Stay at 12.5mg as long as you need to! According the mathematicians you have enough, but just go through it again when brain’s a bit less foggy! Then rethink your next move 12mg? 11mg? but not to 10mg in one leap! or come back and ask again.

Good luck and sit your family down and tell them to read this -

healthunlocked.com/pmrgcauk...

[SheffieldSonia in reply to DorsetLady]

Dear Dorsetlady, I love your posts. I have decided to follow the plan put forward by Soraya as it looks easy to follow and I trust the mathematicians amongst us who worked everything out.

It is a case of Gently Bentley from now on.

Thank you so much.

[Telian]

You have lots of advice to take here, my input is I was always told to go back to the dose you were last comfortable/pain free on and then start a MUCH slower reduction. I won't go into dosages etc but DL's reply says it for me. I was also taught to know the difference between a flare up and withdrawals, easier said than done as the symptoms are the same - but I have worked through it successfully (over a long period of time, none of these quick timetables I read about) until I reached 3mg daily and have been on that for over a year now. I still intend to go lower but for other conditions interfering I have been hindered BUT being on this forum has helped calm me down tremendously.

Hope you can get something out of all of this that suits you, best wishes.