Update 3 years in

[JulieR2]

Hi everyone

I have written for a while but thought I would update on the my progress. Down to 1 mg of steriod. I am taking 10mg Amitriptyline

at night. It doesn’t treat polymyalgia but it sure helps me sleep.

I was one who wanted a quick journey off the pred. With wise counsel of this site I think I may have started to accept 1 mg and my be able to live life is perfectly fine.

I still have some stiffness and my intercostal muscle hurt when I sneeze! But I can live with all this.

On a positive note I have lost 27lbs in weight and continue to work full time.

Yesterday I walked over 17000 steps. Who would have thought that I would do that and still be up for work at 6.30.

So will I ever be prednisolone free? Who knows but for now my plan to be fitter by the time I retire is still my goal! Started at 51 now 55 plan to retire at 57!

As always thanks for you support everyone. I still read posts regularly.

[Kendrew]

That was so uplifting to read that you're doing so well. I'm only 15mths in but I've worked incredibly hard at researching my PMR and having started off on 40mg of pred, I'm now down to 2.5mg. I eat really healthily and exercise daily within my limits.....having been a regular visitor to the gym prior to diagnosis I've found my inability to continue very frustrating. However, I've not put any weight on, and all blood results normal. It's so lovely to hear something positive instead of all the things that are going wrong and could still go wrong. I know this is an awful condition but sometimes we need to hear about the successful outcomes as much as the problems. Thankyou for the little beacon of hope you've given.

[DorsetLady PMRGCAuk volunteer in reply to Kendrew]

If you have PMR why were you started at 40mg - that’s normally a GCA starting dose?

Good luck with work

[Kendrew in reply to DorsetLady]

I began on 15mg and then developed temporal headaches so was bumped up to 40mg

[DorsetLady PMRGCAuk volunteer in reply to Kendrew]

Ok. Thx.

[Kendrew]

Just one further thing....I too am returning to work in Sept after 15mths off school. Yippee! Xxx

[alvertta in reply to Kendrew]

Fabulous.

[DorsetLady PMRGCAuk volunteer]

Good....hopefully you should be a Pred free by the time you retire!

[Kendrew in reply to DorsetLady]

Haha! Hopefully, but no certainties are there? Just happy to live one day at a time. Whatever will be, will be.

[SheffieldJane]

This is so positive Julie! Thank you for sharing it. It sounds like you have found that place where you can rest and heal.

[Whitner]

Yes, thank you Julie for sharing your encouraging news ! All the best to you❤️

[Richnroo]

Thank you for this! I’m just starting my journey and this is very uplifting. Kudos to you. All the best.

[Lonsdalelass]

Nice to hear from you Julie. So pleased you're doing well. Hope the teeth are behaving! Ha. I'm back up to 5mg from 1.5, too much pain and stiffness coupled with raised markers, a flare I guess, but feeling better. I remember you too had to go back to 5,right? You've given me hope, so thanks so much for posting.

[JulieR2 in reply to Lonsdalelass]

Oh sorry to hear that. Yes I came off totally and went back in at above 5 I think. It seems the difference between 1 and zero has a real impact so I am sticking at 1. I am sure you will feel better at 5. I paid privately to see a rheumatologist and his reaction was that managing at 5 and below may have to be part of life. It is amazing how better sleep via the use of amitrypline has had on me. We all know sleep is a big contributor to health. I am also leaning what is PMR and what isn’t. I know my hip pain is burisitis. One shot in my left hit of steriod sorted that and I am going to get a shot in the right one tomorrow. The rheumatologist advice to me was that Maia training a quality of life 5 and below was less of a risk than pain and inflammation. I am also waiting for a dexascan as I stopped alendrobic acid when my teeth problems started

[Viv54]

How fantastic, shows for many may be light at the end of a tunnel ! Thanks for this positive post. Good Luck and best wishes ! x

[Daffodilia]

So good to read a positive post -thank you

[Juliey43]

Hi can I ask what pred you started on and how you tapered? I have just been diagnosed and eould like to get off pred asap. Rheumatologist has mentioned methotrexate as a treatment. Have you had this? I am glad you are better.

[PMRpro Ambassador in reply to Juliey43]

Methotrexate does NOT replace pred in PMR - it MAY (no guarantees) allow you to manage on a slightly lower dose of pred at the expense of the side effects of mtx. It doesn't work for everyone.

Everyone wants to get off pred asap - unfortunately all that is likely to happen if you rush at reducing the dose is that the PMR symptoms will return. And presumably you felt bad enough to go to the doctor seeking treatment? That won't change until the underlying autoimmune disorder that causes the inflammation has burned out and gone into remission. One in five manages that in a year - but it takes anything up to 6 years for half of patients to get off pred. The rest of us take longer. This is a long haul journey and nothing you can do will change your version of PMR - that's the luck (or otherwise) of the draw.

[JulieR2 in reply to Juliey43]

Hi there I was like you and wanted to be off pred ASAP. I did use the dead slow method and kept a diary. I came off but went back on as the quality of live I was having want good. I started originally at 15. I was advised re methotrexate if I couldn’t reduce my does and for long term use. I think all drugs have a risk and I am

Not sure that methotrexate is an easy option. If you look back at my posts I have paid for and bought my PMR lots if things the majority it wasn’t greatful for😂😀😂 pred, massage and support of family and this site are what helped me. I still have t been on my bike or used my picnic set. The later because it’s easier to just buy things when out😂😂

[Mondelo]

It is uplifting to hear a positive report, having started on 20Mg Pred in October 2019, I was down to 10Mg until six weeks ago when my bloods went off scale and suffered a real flare so back on 20Mg for four weeks with bloods and consultation this week. So frustrating, but this site is invaluable with so many varied contributors, telling it as it is. So good and bad all helps, as this is such a difficult illness to describe: I am secretly fed up with people telling me how well I look when inside I am in pain and very frustrated that I cannot do the amount of exercise etc., I used to be able to do; This site has taught me to pay PMR more respect, and gradually work at it in every sense of the word: I have a plane to walk the SW Coastal path all 630 miles of it, and I am aiming to do this commencing next April: Hopefully small steps will help along the way !

[JulieR2 in reply to Mondelo]

Good on you. I would like to just say I haven’t had a quick journey I am

4 years in. But I know when I was thoroughly fed up hearing positive stories helped me. I have had all sorts of issues and loosing my teeth was just one! I think it’s good to have a goal and I think at 4 years into the journey I wanted to try and share that I have had hard times and I have not always felt up. When I have been up I have also been knocked down by this disease. But at the moment I feel well. Something I wish everyone who has this horrible condition to feel😀

[Louisa1840]

Hi Julie,

As others have said, thank you for such an uplifting and positive post. I wouldn't worry too much if you have to stay at 1 mg pred for ever since such a low dose doesn't harm you though I am sure that with your positive attitude and healthy lifestyle you will be able to join Club Zero soon but, don't rush it.

I was interested in your 10 mg of Amitriptyline which helps you to sleep. I too was prescribed that by my rheumy but I can't say it makes a lot of difference I wish it did as sometimes I lie awake for hours and the next day is very hard. Thank God I have recently retired so I don't have to worry about not performing well!

I was also interested in your weight loss. Can you tell me if that was due to cutting out carbs or did it fall off as you tapered to such a low dose? I have heard that, that can happen and dream it may be so for me (I'm currently on 7 mgs). I am so sick of the huge amount of weight I have gained and try to cut carbs as much as possible but nothing seems to make much difference.

Good luck with the rest of your PMR journey may you not travel far for long!

[JulieR2 in reply to Louisa1840]

Hi there I think the amitritripyyline took a while to work. But i am convinced it gives me a deep and hasn’t impacted on my ability to function. Just before lock down I had a few sessions of hypnotherapy and read a book about you mind healing your body. I think this helped me with my weight loss but I am using weight watchers... I had tried before when I had been on low doses but this time it worked 😀

[CarolF1312]

Hi Julie

As a newcomer just 2 months into treatment it was so uplifting to read your positive post. Thank you so much, I was beginning to lose hope that its possible to recover from PMR within 18months/ 2 years.

It would be great to hear some more good news although I guess when things are going well people tend not to read or post on the forum regularly.

Wish you continued good health on your journey to zero Pred.

[JulieR2 in reply to CarolF1312]

You too take advice from the knowledgable people on this site. They never say they told you so but the hard truth is acceptance is the hardest place to get too. I have had difficult times too. But I have only taken 4 weeks off because of this condition. I think lick down helped me rebalance too. Good luck 😀

[Jackoh]

A really positive post which as you can see has been encouraging to many. We don’t really know the PMRGCA journey we will individually take but lovely to see that it works well for some.

[tangocharlie]

Great to hear that news. Please do stay on here to inspire future generations that PMR usually does go away. I don't know if you hear Prof Dasgupta's talk a few weeks ago where he said he keeps his patients on a low dose of about 2 for a lng time, might even have been forever, to prevent relapse. Worth thinking about. as you've come so far and you don't want to blow it now.

[alvertta]

Great results. All the best.

[Dunkel]

great, a plan!! good luck