Still can’t get below 5mg Pred: Hi everyone, it’s... - PMRGCAuk

PMRGCAuk

11,781 members21,499 posts

Still can’t get below 5mg Pred

jules1955
jules1955

Hi everyone, it’s been a while since I have posted on here. Diagnosed PMR in Dec 15. I had my gall bladder removed last January and was doing well reducing Pred and weight loss before that. Rheumy suggested I go up a little, while having/recovering from surgery, which I did. Had a bit of stress last year, with selling house of 27 years and down sizing. Sorting and getting rid of lots of furniture etc. Then our buyer dropped out two months into the sale and we lost the house we were buying. Then My Son had an accident, to cut a long storey short I am still on 5mg of Pred. Feeling very tired most days, hips back hurting and not easy to walk far most days, have gained weight again too. When I try to reduce I get the aches in my arms ( it started with this and I couldn’t lift them at all ) I thought it would be so easy to just keep reducing till I didn’t take them anymore ! It doesn’t work like that tho ! We have now moved to a lovely little house with beautiful rural views. I am very lucky. I realise stress has a lot to do with this disease, I know that I stress and get very anxious about things I would not have given a second thought to years ago. I would love to hear of anyone that has beaten this and how long it took to do so. I feel most people do not realise how you are feeling / coping with PMR as you look ok on the outside.

We must try to look for the rainbows in our life and be more tolerant and listen to our bodies and not feel guilty that we can’t do things as we used to.

35 Replies
oldestnewest

I think you are doing really well Jules with all you have had to cope with. Just remember the disease will burn on for as long as it takes. It’s the PMR who is the boss here. Much though we would all like to be off pred we have to take it as slow as it has to be.

You have done really well to get to 5mg in just over two years I am a month behind you and taking 8.5 mg.

I do wonder though, with all the pains you are getting whether you are on a high enough dose at the moment?

More knowledgable people will be along later to advise I’m sure.

I wish you the very best and hope you feel better soon.

Mary

jules1955
jules1955 in reply to Mary63

Thanks Mary63 going for blood tests next week, although they do not usually correspond with how I am feeling.

Well jules1955, I think you are doing well too. I am at 5mg, and was diagnosed in December 2014.. Mary's reply is spot on!

You just have to be patient with this PMR! Also, lots of people have problems around the 5mg mark, and I have twice had to increase my preds by 1 to 2mgs to clear out inflammation whilst at that level. The PMR will go into remission only when it is ready, and, apart from giving yourself plenty of rest, there is not much you can do about it. Meantime, take enough preds to keep the pain under control.

Good luck

Paddy

Thanks Charlie1boy

DorsetLady
DorsetLadyPMRGCAuk volunteer

Hi jules 1955,

The attached may help you to know life does return to normal after your

illness -

healthunlocked.com/pmrgcauk...

healthunlocked.com/pmrgcauk...

You will get there, just keep the faith! 🌹

jules1955
jules1955 in reply to DorsetLady

You are looking good DorsetLady !

DorsetLady
DorsetLadyPMRGCAuk volunteer in reply to jules1955

Thank you, can’t compete with wonder woman though 😉

jules1955
jules1955 in reply to DorsetLady

Ha ! In my twenties everyone used to say I looked like Linda Carter.

40 years on I can assure you nobody says it anymore 😔

DorsetLady
DorsetLadyPMRGCAuk volunteer in reply to jules1955

I doubt if she does either! And if she does, it’s bound to be “man-made”! 😳

We are what we are 😊 and I’m sure you’re still beautiful!

jules1955
jules1955 in reply to DorsetLady

Kind words ❤️

Janicep
Janicep in reply to DorsetLady

Pleased you enjoyed New Zealand. I grew up in Christchurch and have loved in Dunedin for 30+ years. We have just done a 3week road trip around the top half of the South Island and visited places we hadn’t been to for 20 years. Really enjoyed it and coped with travelling not too bad.

DorsetLady
DorsetLadyPMRGCAuk volunteer in reply to Janicep

I love NZ, plus of course my daughter and family live there, so that makes it better.

We didn’t get to Dunedin this times, but did last time, another beautiful city.

My daughter lives just outside Methven - Canterbury Plains not quite so picturesque as some places, but she sees Mount Hutt and the Rakaia most days, so not all bad. They’ve also got a batch at Hampden, near Moeraki - that’s another lovely place!

As my son & family live in UK I wish I could be in 2 places at once - life would be ideal then. 😊

Janicep
Janicep in reply to DorsetLady

Me too. Our two boys left NZ to travel 20 years ago and one loves on Grantham with his wife and two girls and the other son is now in Brisbane with his wife and two boys. We travel a lot and had 4 maths in UK last year with our son and granddaughters. We are over ther about every 18 months.

DorsetLady
DorsetLadyPMRGCAuk volunteer in reply to Janicep

Good excuse to travel then !

How is Christchurch recovering these days? Was one of my most favourite memories.

Slow progress - many new buildings in the central city and some new bars and restaurants due to open around the river on Oxford Terrace. Lots to do in some suburbs still as there needs to be road ripped up to do water and sewer all over the city. The cathedral is going to be rebuilt after long and protracted negotiations with the government and the council and the church. It will take many many years though. I grew up there and cannot recognise many street corners in the city as all the old landmarks are gone.

Rimmy
Rimmy in reply to Janicep

Very sad Janicep - but some - even if 'slow' progress is good I guess. i was born in Christchurch (went to Mairehau PS) and one of my first ever memories is walking around the 'old' Cathedral and feeding the swans (I think) in the Avon River. I haven't been back since the earthquake (live in OZ) and my brother in Auckland has told me the city was so unrecognisable to him (that loss of landmarks) he was very shocked. But I'm sure ChCh will keep moving ahead and re-emerging in a new incarnation as it is also known as a very 'creative' city.

Best wishes

Rimmy

Janicep
Janicep in reply to Rimmy

It will and already changing. I went to Opawa primary school and Linwood High School and did my nursing at Princess Margaret HospitAl - started in 1967

PMRpro
PMRproAmbassador

On average PMR (and GCA) last about 5 or 6 years - although some people take a lot less, but rarely under 2 years) and some take longer.

practicalpainmanagement.com...

medpagetoday.com/rheumatolo...

These are two reports of the same research but with slightly different emphasis. Getting to 5mg seems to be not too difficult (providing you go about it slowly and not like a bull in a china shop) but you may then be on that sort of dose for some years. Being at these low doses is not really a problem - the side effects have been over-egged in the past.

And given what you have been through - I think you have done really well! But I also agree you have probably gone a bit too low and even just 1mg more might make such a differrnce to you. Also, your adrenal function has to start up again now - and the stress you have been under combined with that maybe being not as good as it could be will be making you feel unwell.

You will get there - but maybe not just yet.

Thank you for replies DorsetLady and PMRpro, I know I am impatient, I just want to feel like I used to ❤️

DorsetLady
DorsetLadyPMRGCAuk volunteer in reply to jules1955

Don’t we all dear 😉. Unfortunately the years have slipped passed in the interim without us realising. 😢

jules1955
jules1955 in reply to DorsetLady

Noooooooooo 🙈🙈🙈🙈

PMRpro
PMRproAmbassador in reply to jules1955

As DL says - don't we all. But the chance of feeling exactly how you were pre-PMR is small - if nothing else, you will be older! And unfortunately, after 60 the downward path is steeper...

jules1955
jules1955 in reply to PMRpro

Noooooooooooo 🙈🙈🙈🙈🙈🙈🙈

PMRpro
PMRproAmbassador in reply to jules1955

Sorry....

AS PMRpro says, you need your Adrenal function to start up again.

Ask your medics for a referral to an Endocrinologist and get an ACTH test done.

A gall bladder op last January can take a while to recover.

You can help by buying VSL#3 (10 packets for £21 and your pharmacist might have to order it in............use the internet to read up on it......but do not buy it over the net. It helps to replace the good bacteria swiftly, both good and bad are knocked out whenever anti-biotics and/or surgery are undertaken.

Also did you have a general anaesthetic? When you are older (just in case you are) it can take up to six months to get over that as well.

Given what you have been through, 5mg sounds good, try upping it by ones and see how you go.

jules1955
jules1955 in reply to jinasc

Thank you, it would be good to know if Adrenals are working

Hi jules1955, yes I think we all would like to feel like we used to. If it's any consolation I have been stuck on 5mg for best part of 6 months and that was after nearly 3 years. 😲 I am sure that when the warmer weather returns I will be able to reduce again.😀

Fingers firmly crossed 🙄

jules1955
jules1955 in reply to Pastit

Thank you yes hopefully warmer weather we will all feel better 😎

I was diagnosed Jan 16 ,so around same time as you.I'm on 5 mg Pred.I did slowly drop to 1mg but all symptoms returned,the increase does control it😀.I agree with you most people don't realise how we feel with PMR ☹️

I am so sorry that your wonderful progress was interrupted by incredibly stressful life events. I do hope your son’s accident wasn’t serious and that he is ok. I am astonished that you are still on 5 mgs! I would take a couple of mgs more. It sounds like the inflammation is boiling away, this needs to be treated. I am glad you have got your lovely house. I hope everything is settling around you. And yes, nobody “gets it” except the good folk on here. PMR loves stress it just gobbles it up. Give it a good slap with Pred and when you’re ready, start your slow descent again. You might want to try a Fitbit or similar. They are quite addictive. I found that I was steadily increasing my steps each day. Especially now you live in the countryside and spring is coming. You survived yay! Big rainbow ahead.

Hi Jules

Wishing you well and commiserating with you on that awful feeling of will I ever come out of this

I was diagnosed with GCA and Poly in February 2016 got down to 5mg in two years, felt really well

The Rheumy decided on a deduction to 3mg

My world fell apart I had a recurrence of the GLA and Poly in January this year

I run a small dog care business and was trying to keep going. Unfortunately an unruly dog knocked me over and I pulled the big muscles in both legs and one arm, oh the pain. I have not been up to writing anything on here, as like you I felt so low. Back on to 60mg Prednisolone and now down to 20mg

Today for the first time I can put my feet down without the muscles screaming. Bad inflammation according to doc. Arm like a frozen shoulder.

Had a shoulder injection yesterday so am hoping it will help the arm

Please just rest and do some good reading with either some lovely Essential Oils in your room or smelly flowers If you live in the south the sun is shining, blue sky dwell on the positive. The people on this forum are knowledgable and supportive. It will pass in time and, maybe do as those who have done or doing the journey, up your daily dose a little till you get that pain under control A good massage can work wonders for our spirits? I also go to an acupuncturist which I find really beneficial especially after the fall

Keep sharing and caring, it does help. Stay away from stress????

Sending best wishes and hope you are enjoying your lovely cottage summer is just around the corner

jules1955
jules1955 in reply to Charlie789

Thank you for your reply x

I hear you and totally agree that no one understands all the pain you feel each day. Feet one day, wrist and elbows the next. I have had PMR going on 3 years now and have finally tapered to 2mg Prednisone daily with the help of a powdered drink called (patriot Greens). It has really helped me recover range of motion in my shoulders some and helps with daily tasks. I only hope my body goes not figure out how to defeat the positive effects it has brought. Stress is hard on folks with this condition and so is trying to do too much in a day.

I am going to go up to 6mg to see if I feel better, thank you so much for all your replies. Will keep you posted 😘

You may also like...