At 6mg is this how I should feel?

I 'got' PMR in October 2015, finally was put on pred on 30 March 2016. I am down to 6 mg but increasingly stiff. I have extensor tendonitis esp in left foot but hands also stiff in the morning and boy am I tired. I fall asleep at 9 or 9.30 and the alarm has to wake me at 6am (and I won't mention the huge, loud snoring machine I have become).

I get that everyone is different and of course less pred means less other normal aches and pains are starting to appear. I guess the best advice would be to stay on six until my body is really adjusted to the dose.

Another hiccup is that I just went to the optician by chance and I have pre glaucoma. Why don't rheumys suggest that if you have PMR that you visit the optician very regularly? I only knew to go from all of you. I have an apt with a specialist in February (I hope my eyes don't deteriorate more before then...yipes).

Thank you for all your support and cheeriness. It really does keep my spirits up and the expertise is a true life line.

thanks

Michele

16 Replies

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  • Hi whitefish bay,

    I bet the winter weather is not helping and as you say our old aches and pains re- emerge too. If it were me I'd stop any notion of reducing further until Christmas is well and truly over and even increase a little bit if the PMR stiffness and pain seems worse. the Glaucoma diagnosis is frightening. Medics seem so casual about our precious eyesight. I was casually told that I had the start of cataracts as if it were a few grey hairs. Still don't know what I should be doing if anything.

    As for the cheeriness, well snowy white snow and jingle bells oh what a happy season! Happy Christmas.🎄

  • I have already had two macular holes in my eyes way before PMR so already had the cataract surgery....I really take eye problems seriously.. (as should everyone like you say). Maybe I will go back to 7 and then six on alternate days until things level off. I am on the stairs like an old lady this morning (I am in my 50s and work in two schools).

    Thanks for the kind words and Happy Christmas to you too.

  • Don't fall into the common trap: you are NOT reducing relentlessly to zero, you are looking for the lowest dose that manages your symptoms as well as the starting dose did. As long as the underlying autoimmune disorder that causes the symptoms we call PMR is active it will lead to inflammation and stiffness and you will need some pred to manage it. You are describing the typical signs of an insidious flare due to having reduced very slightly too far!

    In addition, this is the stage at which your body will have to start to produce a top-up of the body's own corticosteroid, cortisol. It is a very complex feedback set-up and takes some time to settle down and function well. The slower you reduce now the easier your body will find the adjustment.

    And as SJ says - cold winter and Christmas stress don't help!

    If you have pre-glaucoma that just means you have raised eye pressures and they need to be monitored - just the same way as patients with glaucoma in the family are monitored. If the pressures get to a certain level, you will get eyedrops to reduce the pressure.

    Cataracts are usually left to themselves until they start to affect your day to day life - then they will be operated on. Sometimes they progress very slowly - sometimes they are faster.

    I was at the eye doctor yesterday - I can only have pressures checked at the hospital specialist here in Italy. Oh for the simplicity of going to an optician in the UK! No raised pressures - and no cataracts. So I caused great hilarity by complaining - I would LOVE to have developed them, I could then get rid of one pair of the specs that are on my nose from before getting out of bed in the morning to after getting at night. I can't see to do anything without one or other. No pretty sunglasses, no carrying just them - I have 3 pairs in my bag and spares when we travel...

  • You are probably right. I need to maybe go back to 7 just until things simmer down. Funnily enough I don't seem to feel the cold now that I am on pred. I am always taking jumpers off....is that the pred? I do find I am always having to use the loo (such a middle aged woman cliché).

    I would rather my eyes stay the same as I have had four surgeries and really would despair with worse eyesight. I have driving glasses and reading glasses. So nice to see when you wake up!

    thanks

    Michele

  • I had the haywire temperature thing just with PMR but it continued with pred - until last winter. After years of wearing winter boots with no socks (fur lining and needed for icy roads) even at temperatures well below 0C outside and going barefoot inside, suddenly I had cold feet again! OH is always cold - so he turned up the heating and I kept turning it down...

    Both PR and pred can give rise to irritable bladder syndrome - can feel like a UTI but it is best to get a urine culture done if it is bad as then you may need an antibiotic to clear an infection out.

  • Thanks. Yes need to not drink 3 cups of coffee too. I am looking forward to being (too) warm this winter and not like last winter (cold and stiff). I just hope I am not peeing due to pre diabetes...

    on it goes.

  • Your GP should be doing an Hba1c blood test every so often - it reflects the average blood sugar level over the previous 3 months. If it starts to rise - maybe you are becoming pre-diabetic but there is a fair leeway before you have to panic. But it keeps you informed...

  • I am seeing him in April so will ask. Thanks.

  • Hi Michele,

    As you already have eye problems, I'm surprised your optician didn't write to your GP requesting you be referred to the local eye clinic.

    I had already lost sight in one eye -late diagnosis-long story, but as soon as optician, on a regular check up discovered I had the start of a cataract and rising pressures, she reacted.

    I then had 3-monthly out- patients appointments until my good eye was operated on and my pressures reduced naturally following lower doses of Pred. I would approach your GP regarding referral to eye clinic, at least then the pressures will be monitored regularly.

    I found the times between 6mg to 3mg very difficult - lazy adrenals. Plus as others have said winter time can affect many people adversely, so don't be in a rush to reduce.

  • The whole PMR thing seems so disjointed. Surely they should check for the side effects / ask you to see your GP and optician for regular check-ups. It is always live and learn but thank good ness for this forum.

    Thank you.

  • It is something we used to preach from the charities - if you are on pred you need annual eye checks, which used to be paid for by the NHS if you were on pred but then they withdrew that I think. But the forums have become so busy and people don't read other posts - some people apparently don't even read a thread in which they put a post of their own! I only go every 2 years - it is such a performance here - but there is no excuse in the UK, everyone is entitled to an eye test and there are plenty of adverts about the benefit of eye tests. If you are over 60 there really is no excuse.

    This is what GPs should be doing - and it is something that could be handed to nurses. It is the practice's responsibility to tell patients what to do/not do. But no doctors have the time these days. I'm sure it appears in the data sheets - haven't seen a UK one in years so I can't check.

    I gathered from the doctor yesterday though that it is very unlikely i will now develop raised pressures - you either are going to or you aren't. So I won't feel guilty about leaving it 2 years!

  • I used to go at least once a year but since cataracts all seemed fine....worth checking every year. Moorfields is a wonderful place.

  • Hi just a little comment from me following all the advice from the experts. I too started pred in march this year (I'm 51) and am only just reducing down to 9 from starting at 15. I've used slow method as recommended by PMRPRO and I've not moved to next reduction until I've felt pain is under control. Up until 10 I was reducing by 1, since 10 am now reducing by. 5. Seems to be working well so far but appreciate the potentially more complex time in reduction is yet to come! Appreciate all the generous wisdom shared on here. Good luck with it all!

  • I was diagnosed with raised eye pressure 4 yrs ago while living in Spain, and was given eye drops to reduce the pressure. When we returned to UK last year I was referred to an eye specialist and my eye pressure was normal (18). He told me to stop using the eye drops for 3 months then return to have it tested again. When I did it was back up to 33, (what a surprise), so I am back on the Timolol and have a check up every 6-9 months. I have worn glasses for short-sight since the age of 5 and was told short-sighted people are more prone to cataracts, which I have started to get as well. I am due for an eye test next month, think I will need a new prescription as my left eye is not as sharp as it was.

  • My eye pressure rose on my higher dose of Pred. It has gone back to normal now that I'm at 6mg. I had a cataract in one eye before pmr. Since my diagnosis and prednisone the other eye now has a cataract. There will be cataract surgery eventually. I do remember my dad having it done and remember him being thrilled with the results.

  • It is absolutely brilliant (cataract surgery) and miraculous.

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