Threem from Canada

[threem]

I am new here and was diagnosed with pmr early July '19. Getting the right dosage has been a challenge. Started with 25 mgs then in 2 weeks went to 20 and from there in 3 weeks went to 15mgs. I was hit with a very stressful situation in my family and the pain returned so I am back to 17.5 mgs. I still feel it in my lower legs particularily my calves also in my neck, but not like it was in the begining. My question is am I supposed to feel no pain at all. Pain levels do change throught the day and seems to migrate to different parts of my body. I am the primary care giver for my partner who cannot walk or stand alone. He is finally learning to talk after 5 years. This is relevant as I must a few times a day help him transfer for the bed to chair to wheelchair.

[DorsetLady PMRGCAuk volunteer]

Hi, and welcome,

In an ideal world, then no pain - but not everyone achieves that! Most medical people say you should feel at least 70% better.

I would say your return of symptoms is due to a couple of things - firstly and probably most importantly you have reduced too quickly. Both in time and dose.

At least 4 weeks on initial dose - although 6 weeks is better, then reduce at 3-4 week intervals provided you have no return of symptoms. 25mg to 20mg too big a taper, and although 2.5mg is recognised from 20mg - very often it’s not achievable.

The other reason is usually because you are trying to continue life as normal - and that’s not possible with PMR. I realise it’s difficult as you are the primary carer for your partner - but you do need additional help. Not sure how that works in Canada.

I would suggest you go back to 20mg - see if that settles your symptoms - then after a few weeks try reducing at 1mg a time rather than 2.5mg.

Good luck.

[threem in reply to DorsetLady]

Thanks so much, it just feels like things are so vague in terms of pain. I do get help some everyday and am very greatful for it, but there is 24 hours in a day. will look at 20 mgs

[PMRpro Ambassador]

I think your doctors have been rather optimisitic with their reductions - 20mg for 6 weeks would be a good start and if you needed 25mg to get a result - then a month there would have been better than a speedy reduction. No reduction should be more than 10% of the current dose - for comfort!

The good docs look for a 70% global improvement in a week to 10 days. But that only works with a high enough dose, it won't happen when they start too low. The result you achieve after about 3 or 4 weeks at that starting dose is your guide - you should never feel worse at the end of a reduction than you did at the start.

DL has said everything else I'd say - you would probably be better at 20mg for at least 3-4 weeks. Then reassess. And you need some help. If you are doing relatively hefty lifting you will probably need a higher dose of pred for now than your doctors think. And when you DO start to reduce - don't be surprised if 2.5mg at a time is too much and make sure it is then down to 1mg. It isn't slow when it works and you don't have to go back up.

Where in Canada are you?

[threem in reply to PMRpro]

I live on the west coast on a little island just off Vancouver Island. It is heaven and I am so greatful. I will go back to 20 mgs and stay there for 3 or four weeks. Thanks for you experience.

[PMRpro Ambassador in reply to threem]

A PMR friend used to spend a lot of her time on Vancouver Island - and another lives just outside Vancouver. Shame you couldn't all have got together.

[pugrescue in reply to threem]

hubby and I just moved from Qualicum Beach 2 yrs ago. Now just north of Kamloops

[SheffieldJane]

I think that the very necessary help with transferring your partner from bed to wheelchair is simply too much for you, in your present state of health. Can you explore equipment or additional assistance for now?

The progress with your partner’s speech is wonderful.

Please don’t neglect your own needs. You have a serious systemic illness, you need to work with your body. Wishing you and your partner all the blessings.

[threem in reply to SheffieldJane]

I know that it is my responsibility to look after myself, but I forget that sometimes so it helps to hear it, thanks

[DorsetLady PMRGCAuk volunteer in reply to threem]

It’s very easy to forget yourself when you are caring for a loved one - I know, been there!

And yes you are right there are 24hours in every day, and you have to cover a good many of them on your own!

[HeronNS]

There are various government assistance programs, but they seem to be more financial or for getting equipment, or job protection, that kind of thing, and they vary from province to province. elizz.com/planning/governme...

I believe the VON can help caregivers. von.ca/

Sources of information for help locally can include your doctor's office, and the public library.

Sometimes an elected representative can be helpful, too.

[threem in reply to HeronNS]

Thanks everyone, I do have daily help, and know in my heart my biggest problem is me.

[Thelmarina in reply to threem]

From your post you have had to meet with huge challenges, physically and emotionally so it is no wonder you are feeling the effects. So your job is to give yourself care in order to care for your partner. You are the solution not the problem! It does take time to get the dosage right and to take on board that life style changes are part of the deal. You’ll get there - go easy on yourself! ❤️

[threem in reply to Thelmarina]

thanks for the encouraging words

[PMRpro Ambassador in reply to threem]

That is the first step negotiated then!!! Remember, if you aren't looked after, you can't look after your partner.

[PMRCanada]

Welcome fellow Canadian!🇨🇦

I just got back from the West coast and spent some time in Victoria. I’ve looked at property on Mudge Island and Gabriola Island, but not been there to visit.

Folks on the forum have already responded to your post very comprehensively. I would add that I experienced about 80% pain relief, and found that I used to be stiff and sore in the mornings until I started splitting my dose, which has resulted in pain-free mornings. As well, if I do too much physical activity, I pay for it the following few days.

I do hope you get settled in with a dose that works well for you. Over time you will get better at listening to your body, and responding accordingly.