PMR can be a right old struggle

[Janet57]

Saw this poem and although I’m not someone to roll over to PMR there are days when I’ve truly felt like this. It’s now been six years and I still have it. Things are so much better than they were - I’m now able to exercise with Aqua, a little bit on my bicycle, walking but there are still days when I get very fatigued. I’m down to 3 mg but can’t seem to get below this even with the DSNS method. Anyone else the same?

[SheffieldJane]

Thanks for posting this poem Janet57. It really must resonate. This is the third time in as many months that it has been posted. Each time is special. To my mind you are doing well. I wouldn’t worry about 3 mgs too much. It is an insignificant dose for side effects and probably accurate for controlling the small flicker of inflammation that remains. You are certainly not alone.

[Janet57 in reply to SheffieldJane]

Thank you SheffieldJane - I’m not always on this site so sorry for the repetition. I need to be patient and just seeing this through in is own time.

[Telian]

As SJ says this is a popular poem - great minds think alike eh!

The 3mg is nothing to worry about - I’ve never got below 3mg - some can’t but it doesn’t mean you won’t. I was on 3mg for 17 months before a flare following a procedure. You’re getting fatigued but you are active also - just pace yourself and your body will gradually adjust and maybe you’ll be able to reduce again but listen to your body all the time, it rules I’m afraid.

[Janet57 in reply to Telian]

Thank you Telian - it’s good to be reminded sometimes x

[Telian in reply to Janet57]

We all need it sometimes. X

[Constance13]

Hi Janet. Ditto!😂. 7 years!😟

I am down to 4mg. I tried 3, then 3 1/2, flared and have returned to 4mg.

Recently the doctor told me I’d probably be on 4mg for life (as I’m knocking 80 (July) that shouldn’t be tooo long.😂😂

Just enjoy doing anything you can. I’ve given up worrying - life’s too short.

I eat what I like (not overweight anyway), exercise when I can, stay in bed or on my recliner whenever necessary.

[Janet57 in reply to Constance13]

Thank you Constance13 c

[PMRpro Ambassador]

I wish I'd ever seen 3mg in my PMR journey! If I ever get to 5mg again I shall refuse to even try to reduce any further!

[bakingD in reply to PMRpro]

Hope you do fingers crossed

[alvertta]

Great poem.

[Grants148]

Thanks for the poem Janet ,l have photographed it onto my phone,l think some W l members will appreciate that,especially the ones with health problems that cause fatigue ! I managed to lower the pred to 3 mg, for about six months,then had a flare and l am stuck on 5mg ,now.The flare was caused by lowering down just 1/2 mg,as suggested by my GP. I would be very cautious about reducing although it obviously can be achieved .l am finding that 5 mg,only just seems to keep my PMR controlled now .Good Luck !

[Janet57 in reply to Grants148]

Thank you Grants148 - I’ll reduce very gently if I can x

[Marcy47]

Beautiful poem Janet, I read it to my OH who is recovering from his second stroke and he loved it. Into my 4th year now and I am struggling to get below 7mg, have tried DSNS 3 or 4 times, managed to get down to 6mg for a week and then got pain and stiffness in shoulders and back of neck, so back up to 7mg now. Appointment with Rheumatologist on 11/3, see how that goes. Marcy x

[Janet57 in reply to Marcy47]

Glad you liked the poem Marcy47 - sometimes these words help us not to be so hard on ourselves. Hope the apt with the rheumy goes well x

[Valnvaughan]

Hi I’m approaching year 4 of PMR. Thanks for the poem....a reminder to take life as it comes. I started on 15mg Pred, have had a few flares and am now on 3mg per day. I have found it better to anticipate “busy” or stressful days and increase Pred to 5mg. Then drop down again. This way I have sidestepped flares recently.

I hope to follow a very very slow DSNS method to reduce steroids this year.....but if it doesn’t suit me I’ll stick for a while......not a race to zero as the experienced on here say. 🤗Valerie

[Janet57 in reply to Valnvaughan]

You’re right Valnvaughan - no race to zero. This condition can’t be hurried. Glad you liked the poem x

[Sheilamac]

Loved the poem and have shared it. I've got stuck trying to get from 2.5 to 2mg, got all the symptoms of adrenal insufficiency! Also hip and bottom pain which I think is probably Piriformis Syndrome and am having Bowen Therapy for it. However I might be wrong and it could be steroid withdrawal! Ive gone back up to 3mg and will stay there for a few weeks I think. I'm going to stop thinking about tapering! I've had PMR for 5.5 years.

[Janet57 in reply to Sheilamac]

Good luck with the tapering - I think we just have to be patient and not force it. Thanks for taking the time to reply x

[Jackoh]

Yes have seen this before but always happy to re read it. Thanks for posting. I know I have made some expensive decisions while on 20 mg ( again for children and grandchildren!!) From experience too I read important emails out to my husband first before posting them. This has saved some mistakes. The constant thing I have though is forgetting folks’ names ( even ones I’ve known for years!) and being unable to find the right word for things. I tend to “ move on” and find another word or admit I can’t remember the name and say “ never mind”. I do get frustrated sometimes but I’ve come to the conclusion that if I worry about it it won’t make it any better but possibly worse!!

[Janet57]

Yes, worrying and stressing definitely don’t help this condition. Patience is definitely a virtue with PMR. Thanks for your reply x

[Dewdrop456]

Thank you.