So fed up ,need advise

I have had P M R now for over twelve months , with many ups and downs ,urinary infections ,the dreadful fatigue.

I had managed to get down to 7mg , and felt that I was getting my life back .however my husband started with back problems ,and last week had to have emergency surgery for two bulging discs .

The pain in my shoulders , hips and thighs has returned , wether this is due to the stress of it all ,hospital visits ,or extra work all this entails ,

I upped my dose to 8 today but I’m still in pain .

Shall I go higher , or try to rest more .?

I am so disappointed to know that the P M R is still there as bad as ever.

Please advise me what to do .

Thank you

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As we are all different what works for one person might not work for another. So in my opinion if it were me I’d go to 10mg. I would call my GP first to see what they advise as your only a year in to this awful condition. I think it would be the stress that has triggered your flare up a blood test could confirm that but they are not always that certain? Sometimes you get a flare and it doesn’t present the same as your already on steroids. Short term higher dose then long term taper off is what I would do. Good luck.

Von

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Hi there,

Sorry to hear of your flare and all the extra stress you are having. If I were you I would take your pred back to 10mg. However, ring your gp first as he/she may want bloods done before the increase. Hope you find some relief very soon.

Liz

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I am so sorry you are having such a miserable time and I do hope your husband has a speedy recovery.

I have no real practical information, sorry, but I think that the answer should be “rest more”. Not exactly easy to do sadly I know at this time, likely impossible. I occasionally took some paracetamol if I felt I had overstepped my limits and it did seem to help a little if it wasn’t just the PMR but strained muscles too. Also need to add- if the pain continues then you do need to seek medical advice.

Be kind to yourself and only do what is absolutely essential. All good wishes x

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No doubt you have been doing far more since he's had disc problems and especially since the surgery - it really isn't surprising you hurt. And the stress of emergency spinal surgery for him is very likely to have aided a flare. I've had an "interesting" year (OH prostate ca and radiotherapy) but had been doing well with pred dose, got back to trying 5mg after a flare a couple of years ago but 5mg was a bit too far, 6mg would have been the place to decide to stick. But once it was all over I'm flaring again and need at least 8mg.

I've also got a flare of the myofascial pain syndrome/sacroiliac problems that go along with my PMR and that is actually worse than the "real PMR" niggles. If I lean forwards carelessly the low back pain is awful - i'm waiting for a physio appointment. It all mounts up.

I think you need to see your GP at least and ask about going back to 10mg - the group in Bristol developed a reduction programme which they found reduced flare rates from 3 in 5 to 1 in 5. They keep patients at 10mg for a year, so a total of at least 15 months from diagnosis if 15mg is enough initially, longer if they need a bit more:

rcpe.ac.uk/sites/default/fi...

So using their approach you would still be at 10mg - so see your GP and show them this paper and ask their advice. It is aimed at them so they shouldn't be offended.

I would say that to have got from your starting dose to 7mg in a year when you have had all the problems you mention was rather fast - marking time for a bit will help and yes - if you can manage it, rest more.

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As always good advice to the above Manchesterlady......

I wonder though if you could tell me the magic words to use to a physio! what you describe with your back is exactly what I have....ad I said last week, NHS physio said, we don't deal with that.....and another said she was afraid she would make me worse, short of banging my head against a wall (can't deal with the extra pain though!). What are the magic words??....Thank you

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No idea in the UK - it is a very different kettle of fish here! But if there are muscle problems they should be able to identify the hardened muscle tissue. If they then work on the muscle it would be difficult to "make things worse"I would have thought. No-one is asking them to do chiropractic moves on you! That's why I often suggest a specialist sports physio - there was a good one at Durham based at the cricket ground who used his spare time to look after ordinary people. You often find them near cricket grounds or racecourses where the sport isn't all year round.

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Thank you for that......I know there's one out there in Norfolk somewhere!

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Should be around Newmarket if nowhere else!

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Maybe Delia Smith can recommend the Norwich City physio!☺

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Thank you for your replies,the last time I saw the doctor when I was on 9mg ,the first thing he said when I walked into his room was ,your face is puffy , and you’ve put weight on ( like I didn’t know ) you need to reduce your dose , which I did , slowly got to 7 ,and felt well at that. Till all this kicked off .but as PMRpro says , it’s not a race.

Re the urinary infections I saw a urologist who prescribed trimethoprim to be taken one a day , this worked for a while .

I am waiting to see him again regarding a cystoscope.

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Question? Are urinary infections a part of PMR, being on prednisone? Have a whopper UTI started yesterday. Taking Bactrim because Cipro (quinolone) contra-indicated with pred

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Hi Barbthy! I think there could be a link, as at one time, I kept having what seemed to be a never-ending low-level infections. Finally sorted with nitrofurantoin, though I know it causes nasty side effects for some.

Suspect it's a combination of PMR, Pred and calcium (if you don't drink enough water) that makes us prone to irritation and infections.

If you do a search, you'll find quite a few posts re. this, so perhaps that suggests a link of some sort.

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I am going to really try and drink at least 3 16 oz bottles of water. Usually I'm never thirsty

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As to being never thirsty.. I had a nurse tell me once that Not being thirsty is "natures way" of eliminating old people when she was trying to draw blood but couldn't because I was dehydrated. From then on I started drinking lots of water even though I too was never ever thirsty!!! I have NO idea if it is true but it was food for thought !! Drink lots of water!!

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Several questions there to be asked. Is it REALLY a UTI? Confirmed by bacterial culture of a urine sample. The symptoms can happen due to calcium grit forming if you took your calcium/vit D supplement and then got dehydrated - happens to me a lot I realised, especially when travelling when you tend to drink less.

PMR itself can lead to both irritable bladder syndrome and increased UTIs - the bladder doesn't always empty completely, a bit of stale urine is retained and eventually you can develop a UTI. Pred may increase irritable bladder syndrome problems.

But whatever - it is always better to do a culture and identify the best non-broad spectrum antibiotic (that is why Cipro gets used, kills a wide range of bugs).

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Thought Cipro wasn’t compatible with prednisone

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It isn't - but it is used generally in UTIs because it kills a load of different bacteria. Since you can't have Cipro they are using Bactrim, also a broad spectrum antibiotic. Broad spectrum antibiotics should really be a last resort - using a narrow spectrum one that is targetted at the particular bacterial infection is far better for the world in general.

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Between nerve damage, diabetes, pred and calcium I must spend 10 mins trying to make sure I am all empty 😲

If there is a technique I can't find it. Have leaned backwards forwards doubled ...cough...a shake...'cuse me. Having a chest infection for 3 weeks didn't help matters.

Any help gratefully r'ced 😞🌻

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medicalnewstoday.com/articl...

Anything extra here?

But if it is a problem - you have been referred to a urologist haven't you? I was - and a urethral stretch every 10 years has made a major difference. One of the common causes is a narrow urethra. Widening it helps.

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Ouch. That made me wince. I will add it to list. Thanks for info.

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They are wusses in the UK - you get anaesthesia! My first was done in Germany and the last in Italy - no offer of anything. So when I had one done in the UK I dispensed with it so we could get on with it and not wait for an anaesthetist. The poor nurses were beside themselves - but it was no worse than period pain and doesn't last as long.

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Ok. That's doesn't sound terrible.

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It sounds terrible to me ! You ladies seem to have everything worse than us blokes with this condition - have to admit that you’re able to talk much more openly about everything than us!

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Once you have produced a child you lose all sense of shame!!!!

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Your best one (to date) PMRPro, was the description of the onset of PMR symptoms prior to diagnosis (visiting the loo) - ‘my arms aren’t long enough to reach my bum’...Epic! couldn’t be more accurate if you tried !

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Over the course of women's lives we are poked and prodded for everything- children or no children. You finish years of smear tests and just as they stop you run into the mammogram.

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Wow, this brings back memories.....in my 30's had lots of bladder infections.......eventually went in hospital, consultant said......have stretched you to guarantee you will never be back here again.....in those days they knew what they were doing, and he was right.....even on pred, no infections......fingers crossed!!

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I am sorry that you have been through a terribly taxing time, emotionally and physically. It's no wonder that PMR is reminding you of its presence.

Have the demands died down? I am a great believer in the old fashioned " taking to my bed". It doesn't feel as if it would help but it's rescued me once or twice. Get all cosy warm as I used to say to my children and go to bed with a good book. If you become sure that you are in a flare that can't be rescued, then you may have to think again.

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Thank you for your reply ,this site is just amazing . Like you I love my bed , I’m in it now , can’t spent the day here as my husband still can’t do much , but will spend as much time as possible resting

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There are companies that deliver good frozen meals - Wiltshire Farm Foods, for example, are said to be not bad - wiltshirefarmfoods.com/

Even if it just reduces the demand to have to shop and cook for a short time it will help both of you. And their lead time is just a day or two.

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I was going to hit ‘Like’, but that’s not quite enough as I seriously love the compassion in this suggestion.

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Manchesterlady, send out for pizza. You and your poor husband are just going to have to camp for a bit. Take it in turns to make the tea.

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You don't say what dose you were put on 12 months ago, but my wife started at 15mg and her rheumy placed her on a tapering schedule such that she was at 7mg 7 months after diagnosis. This was an idiotic recommendation as all her symptoms came back. She never should have been scaled down to below 10. 18 months after diagnosis she is back up to 12.5mg.

Joe

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Hi joe I started at 30 mg for a week , then down to 25 , thought I’d done a slow reduction .sorry about your wife , I hope she is pain free on 12.5

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Thank you Manchesterlady, my wife is not totally painfree at 12.5. Her new rheumy is trying to see if there is another medication she can take side by side with prednisone such that she can slowly taper down her intake of prednisone, because the side effects from pred are causing issues for her.

I hope that you succeed in your eventual tapering.

Joe

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