Been on 4mg prednisolone for years now.

[Tombolinio]

Hi everyone, this my first post .I was diagnosed with PMR about 4 yrs ago ,I have now been on 4mg prednisolone daily for all this time, I also take alendronic acid weekly, lanzaprazole daily. My Pmr can affect almost anywhere on my body ,my hands are particularly bad in morning lately but legs ,knees ,and arms can be bad .Just looking for any advise or support from your good selves as info on this condition is gard to find .Are there any alternatives to the steroids .I have tried reducing dose many times but always comes back worse .Thank you people.

[DorsetLady PMRGCAuk volunteer]

hi and welcome,

Can you clarify that you mean you have been on 4mg all the time? Never higher at the beginning?

If so that’s a very strange way to treat PMR…and would say it’s never been under control.

Usual procedure is to start at 15mg [although doses may vary] and to taper gently keeping symptoms under control until the PMR goes into remission.

Bit more info might help… and are you sure you are on 4 x 1mg tablets and not 4 of another dose? It all sounds very odd.

[Tombolinio in reply to DorsetLady]

Very sorry, to clarify yes I started on 15 mg and got down to 4mg even 3mg for a week or two ,but then paid with very bad attack as I call it With extreme pain in legs and hands .I've tried to do this a few times with same result .I am waiting on results of a bone scan at moment. I am just very concerned about long term use of steroids.To clarify once again it is 4mg prednisolone daily. Thank you for your replies it's nice to know there is somewhere to talk.

[PMRpro Ambassador in reply to Tombolinio]

Not so much an "attack" as having overshot the dose you need to manage the inflammation. You aren't ever tapering relentlessly to zero but are titrating the dose to identify your personal lowest effective dose - the lowest dose that manages your symptoms as well as the starting dose. Pred cures nothing - it is a management strategy that aims to provide a better quality of life while waiting for the underlying autoimmune disorder to burn out and go into remission. To have managed to get to 4mg for that is very good and it is a low dose with relatively few downsides.

If it is any consolation, I have been on pred for 16 years, a lot of it at above 10mg and have no lasting damage that can be identified. My bone density is OK but I did develop a spinal compression fracture last year, after 15 years! I am in the middle of a course of bisphosphonate infusions to help with that. But all that pred has allowed me a pretty good quality of life compared to the 5 years prior to that with no pred because I had no diagnosis/

[Tombolinio in reply to PMRpro]

Thank you so much ,that's very helpful

[DorsetLady PMRGCAuk volunteer in reply to Tombolinio]

ah.. that makes more sense.. and tbh many of us have been on much higher doses of Pred over the years... and are still very much alive and kicking! and as said your PMR need what it needs Pred-wise.

[PMRpro Ambassador]

Hi and welcome!

When you say "My Pmr can affect almost anywhere on my body ,my hands are particularly bad in morning lately but legs ,knees ,and arms can be bad" - what exactly do you mean?

As DL has said - more information would help us to be able to help you more. Are you under your GP or have you been referred to a rheumatologist?

[Tombolinio in reply to PMRpro]

Sorry for not being clearer what I mean is it's very painful walking I walk like an 80 Yr old when having an attack ,my hands hurt so bad bending my fingers is a challenge and find it difficult just to lift a kettle .Bending my knees can also be very painful, best way to describe is I feel like I've ran a marathon the day before. Thank you for showing an interest.Tom.

[PMRpro Ambassador in reply to Tombolinio]

That sounds as if you are not on ENOUGH pred - you should be at a dose that gives the same symptoms relief as the starting dose as I explained in the reply above. When was that last the case?

What I had wondered was whether you meant the symptoms moved around, from place to place, different joints. That can be a sign of a polymyalgic presentation of an inflammatory arthritis but it sounds more as if you simply aren;t on a high enough dose.

[Tombolinio in reply to PMRpro]

Thanks for your advise ,I think you could be right regarding arthritis, I may not be on a high enough dose but I feel better to struggle a bit than keep upping the pred dose.

[PMRpro Ambassador in reply to Tombolinio]

The point is, if you are not taking enough to manage the inflammation, the leftover inflammation will build up over time until you are back where you started, There is no virtue in struggling with that inflammation - it isn't a simple equation of pred bad, no pred good. Long term inflammation left to run rampant in the body causes damage to the tissues, increasing the risks of developing vascular and cardiovascular disease, damages soft tissue and even increases the risk of developing depression and cancers. Either you take ENOUGH pred so you have the lowest possible level of symptoms - some people are never totally syptom-free - or it isn't worth taking at all. There are side effects to any dose - unless you are getting a benefit from taking the pred, there is no point. But it is, of course, your choice.

[Bedwell in reply to PMRpro]

Was it you pmr who said you lived in Italy miles from anywhere by yourself. ? Been scrolling to confirm it was you. If so , you are Amazing! I complain about being lonely and I have a daughter Nextdoor .. who I don’t see a lot of.. but they are there.! So shut up Merelina and be very thankful for what you have!?!?!

[PMRpro Ambassador in reply to Bedwell]

I live alone since my husband died 3+ years ago - but I am in a village with neigbours in the block of flats but no family here at all. My daughters are in the UK, one in the NE and one in Scotland. They both work in the NHS so don't get time to visit.

[Bedwell in reply to PMRpro]

Ah… my husband died 20 years ago and I still can’t get used to living alone. My darling cocker spaniel is my other half so to speak.. if she goes before me.. she’s 12 and I’m 86…I might have to go into one of the homes we visit!!! Pet therapy it’s called! Gets me out of the house and under the grey skies of uk!!!

Both daughters and their families work long hours in good jobs.. the film world., and of course I’m glad for them. Now this eve I can’t get my tv to work. Do I call in my son in law? And do I go back to 1mg tomorrow? Been on 1 for a couple of months.. but 2 days on 3/4 and i can’t function! Exhausted. Will have to do DL and do one day etcetc

Boring boring.am so boring!!! Thank goodness for this forum.

[DorsetLady PMRGCAuk volunteer in reply to Bedwell]

That’s what son-in-laws are for surely!

[Bedwell in reply to DorsetLady]

My daughter said he was fetching his son and then needed supper but would come after that. Hasn’t?!? Maybe forgot to tell him. He’s usually affable. Sometimes more than his wife!!!!!!

[DorsetLady PMRGCAuk volunteer in reply to Tombolinio]

I may not be on a high enough dose but I feel better to struggle a bit than keep upping the pred dose

No medals awarded for that! .. and to be honest, no point either … you are likely to do your body more harm than good as explained by PMRpro.

On this forum we value a good quality of life…and if an extra mg or two of Pred gives you that, why wouldn’t you take it? 😏

[ImC_]

Hi Tombolinio,

I’m not one of the experts - but, Iike you, I’ve had PMR for 4 years. And I’ve been reading this forum all that time.

I really feel for you - suffering PMR symptoms because you don’t want to increase your dose. So at the moment you’re stuck at 4mg - can’t go down as you say your symptoms would be even worse, and won’t go up. So you’re taking steroids, which of course we’d all rather not, but getting no benefit, and maybe even causing long-term damage. Worst of all worlds.

But imagine . . . being pain-free, able to walk or run, able to bend down to reach a low cupboard or pat a dog.

What if . . . a dose of perhaps just a few mg more would get you all of that? You won’t find out unless you go back up and then taper to the dose that controls your symptoms.

And it won't be forever. Just a thought.

[Carnivoreyogi]

Dear Tombolonio, I also empathize with your reluctance to increase your prednisone dose. I was the same last year--trying to endure the pmr pain rather than increase my doseage. But PMRpro explained to (as above) that I was only allowing the inflammation to get worse--I wasn't helping myself heal at all. Just the opposite. So I did go back up on prednisone to a dose that resolved the pain and have been tapering more slowly this past year. It seems to mostly be working. I am at 5mg and feeling quite happy to arrived here with no pmr pain. I don't know what I would have done without the help I've received on this site. I also accept that I may flare again, and may have to go up on my prednisone. I refuse to see this as a failure. It is simply the pmr doing what it does. And all I can do is be patient.

This may not be appropriate advice at all for you, but I have been taking supplements (B complex, magnesium, D3, K2, chromium picolate, omega oil, zinc) as advised by my doc to help the HPA axis function again. But of course you want to make sure any supplements are safe for your body.

[Lilly-Gee]

I have recently had a flare and squashed it with another big dose 25 mg then tapered down and settled on 3 mg. My advice would be to use the Pred to squash the pain, don’t put up with it, it’s horrible, makes me unhappy and I have found Pred isn’t as bad as inflammation, pain and suffering.

But that’s not the whole of it for me. After 4 years of flares and up and down on large and small doses of Pred I finally started an eating plan to try and lose weight and the upside is my PMR pain is now minimal and mainly non existent. I can’t believe I didn’t try this earlier, I feel a bit stupid for not trying the food solution sooner but I am following the 5:2 diet so I am eating very healthy food, I have lost weight and am drinking much less alcohol. I haven’t felt this well in years. I feel like I have finally found a way to minimise this disease’s effects on me. If it works for me it could for you too. Seeing my doctor tomorrow. I suspect he will recommend I stay at 3 mg and continue my new food habits 😁

[PMRpro Ambassador in reply to Lilly-Gee]

Well done!!!!

[Tombolinio in reply to Lilly-Gee]

Thank you so much for your reply ,what exactly is the 5.2 diet ,I think I need to try it.Thank you.

[PMRpro Ambassador in reply to Tombolinio]

google it - it is a restricted eating appraoch to diet where you fast on 2 days a week (calories restricted to under 800 calories) and eat normally the other 5. Michael Mosely made it populat.

[Lilly-Gee]

I’m actually on the fast 800 but there are lots of variations of this diet including the 5:2 which I am about to switch to. I started on the fast 800. It’s about 800 calories a day and some overnight fasting, not eating between 8 pm and8 am, Mediterranean diet, lots of salads and fresh green vegies, meat, fish eggs and fruit, yoghurt, etc. It is based on research and made popular by Michael Mosley. The food is delicious and actually filling. I joined online but there are heaps of books with recipes and eating plans. The on line program is good because there are other people to converse with for ideas and support and you can swap meals around but there are also heaps of books wth awesome recipes. I saw my doctor today and he endorsed this kind of diet for inflammation but as I said, I knew about food related ideas for reducing inflammation but it’s taken me 4 years before I gave it a red hot try. I felt the results after just 5 days. I can’t believe I put up with so much pain when this has been so easy to do. By the way he kept me on 3 mg of Pred and the food I’m eating to be revised in August. I really hope I can put PMR to bed. I hope things look up for you too😁

[PMRpro Ambassador in reply to Lilly-Gee]

That sounds amazing - and I for one would love to hear more about your and your doctor's approach and results.

[Tombolinio in reply to Lilly-Gee]

Thank you so much ,very helpful

[Tombolinio]

Very inspiring, thank you.

[Bedwell]

Well done indeed!!!to Lily Gee! my diet is pretty well like the fast 800… but maybe will check the 5.2 one. Michael Molsley. What a lovely man… I have lost weight and actually don’t feel as hungry as I used to. My Rheumy says none of my symptoms are pmr related… am on 1mg.. have neuropathy !!! So throbbing feet etc. and itching as I have posted somewhere else.

Sorry Tombolinio… I see I’ve put this in the wrong place! Old !!!!!!!