MOBILITY AND PMR

[CarrieP]

Had a water infection as a side effect of pred which caused me to have a bad fall and a month in hospital (no bones broken luckily). This has caused me to lose my mobility. can do very little and now need to use walking frame to get around the house. Last week I had my eyes tested and the optician said I have cataracts coming as a result of steroids and have had pred since March. I have just reduced pred to 11mg which means I will be on them for a while yet. Side effects seem very bad and have loads of bruising. I wondered if anyone else had suffered similar problems.

[CarrieP]

I am also having terrible fluid retention which is really getting me down.

[SheffieldJane]

Hi CarrieP, Poor you, what a horrible time you're having. I have had a persistent water infection, my GP didn't link it with Prednisolone though and prescribed antibiotics. I think it's back. My optician told me I had the beginnings of cataracts but she said it as if it was no big deal and an age thing more. I also had mysterious bruising on my abdomen that I traced back to changing my toddler grandson's nappy and little kicking feet.

I'm wondering if you are in better medical hands than me? Nothing seems to impress my medics. Of course they want me off Prednisolone but no more than I long to be done with it. I was diagnosed in April this year and was started on 20 mgs of Prednisolone, I've struggled down to 14.5 and feel pretty rotten, sleepless nights, nausea, exhaustion, moodiness, eye strain, you name it. I'm waiting for a Rheumatologist appointment. I feel giddy and could imagine falling. The trouble is doctors only really have Pred or it's like to offer. The inflammation is very harmful and I'm not sure whether my symptoms are PMR or Pred or a combination. I felt I had to reply though because we are suffering in a similar way and sometimes it just helps to know you're not alone. Hospital and your subsequent mobility problems must be miserable. Wishing you a speedy recovery. God Bless.

[Suetum]

I have cataracts coming due to Pred and also a hardening of the lens in one eye , not sure what that means. The Optometrist has put me onto yearly eye tests which is good.

[Rusty8]

I have not long been up and once again feet on floor bad pains don't know if all pains are due to my spine problems and some from pmr

Same as you water infection bad fall hematoma that won't go away can't be drained due to warfarin

After years of putting up with pains I now am beginning to feel housebound

I don't know wether I am pleased to read your comments or is it to early in the morning lol in one way it's nice if that's the correct word to use that there are other people out there with problems although I wouldn't wish this pain on anyone but at least it is possible to communicate with others in same position

You take care June

[Chihuahua1]

I have bad water retention in my ankles. I've noticed visual disturbances and more migraine type headaches as well. Optician checked my eyes thoroughly and said they are fine. Doctor is treating me for dry eye, but the drops only help for about half an hour. I am down to 4mg prednisolone but it has taken months and months. I can't remember when this flare up started. Brain fog and short term memory are causing me a few issues.

[PMRpro Ambassador]

For those of you who have had what appear to be urinary tract infections - it may not be the pred but the PMR or even your calcium tablets causing the symptoms. If you have symptoms of a UTI, please insist your GP does a urine culture to be sure that not is it really is a bacterial infection but also that the correct antibiotic is being used, this is even more important if you have persistent symptoms.

PMR affects the bladder so that it doesn't always empty properly - and the old urine being retained makes it more likely you may have an infection. But PMR can also lead to a condition called irritable or overactive bladder syndrome where you have all the symptoms of a UTI but it is actually the condition which causes the problems of urgency etc.

patient.info/health/overact...

The problem with the calcium tablets is that, in some people, if you do not drink enough to keep your urine very dilute the excess calcium being lost in the urine forms grit which irritates the inside of the bladder and the urethra, the tube the urine leaves the bladder through. This happened to me for a long time, especially if I was travelling when you obviously tend to drink less as toilets are sometimes hard to find. In that case I stopped taking my calcium on those days and the problem also stopped.

Cataracts are really no big deal - what probably happens is that pred speeds up the formation of cataracts that were already starting but which were not yet apparent. There is one form of cataract that is due entirely to pred but it is less common. They are easily dealt with by surgery - and an edict was issued that patients are to have them done as soon as it affects their lifestyle so it is no longer a case of waiting for years, unable to see clearly. I often say - I'd quite like cataracts! I've worn glasses every waking hour since I was 7, at least if I had cataracts to remove I would get rid of distance specs and only need them for close work - a situation that is starting now!

[Annodomini in reply to PMRpro]

Advice from an old friend who had urinary issues. Her doctor told her that once she had emptied her bladder, she should count to twenty and then empty what was left over. It really does work.

[Celtic PMRGCAuk volunteer]

Oh dear, Carrie, it's so easy for some of us to fall when in the early days of PMR - I was picked up off the ground a few times. However, it sounds as though you landed really heavily if it entailed a lengthy stay in hospital. Of course, being immobile for that that length of time it isn't surprising that your mobility has been badly affected. It sounds as though you might benefit from some sort of gentle physio treatment such as massage, ultrasound, heat treatment etc to help with your recovery?

Bruising, and even easily torn skin, is another side effect which not many of us manage to escape particularly whilst on the high steroid doses. Arnica cream is the best thing you can use for the actual bruising - I got through several packs! However, it can help to keep the skin as moisturised as possible by avoiding any harsh soaps in the shower, and even reducing the showering where possible. During my early days on high (40m) steroid doses, around 10 years ago now, when my skin was at its driest, my podiatrist had recommended Double Base Gel for the soles of my feet. I decided to try it on the rest of my body and it proved so brilliant that I became a devotee and hope it never disappears from the shelves! I have sung it's praises boring so many people since then but everyone who uses it now sings its praises - you will often see it mentioned on here.

With regard to your steroid-induced fluid retention, have you tried including plenty of known diuretic-type foods into your diet? Such foods as asparagus, garlic, fennel, melon, celery. In fact, although I have been off steroids and in remission for some years, I have recently found increasing my intake of these foods again has helped with ankle and foot swelling (oedema) caused by blood pressure medication.

Rest assured that all these steroid side effects will reduce as you reduce down through the doses but I hope that at least some of the above may help in the meantime, and I do hope you start to feel better soon.

[DorsetLady PMRGCAuk volunteer]

Hi Carrie,

Just to add to others advice, don't worry about cataracts, although they can become annoying, once you get to the stage that they impact upon everyday life - car driving for example - it's a quick operation which works wonders. If, like me, you live on your own then a reminder to the eye clinic at regular intervals may help!

Arnica cream is good for bruising as well. At least with cooler weather on the horizon they won't show so much!

[Thomas45]

I was told by my optician about 15 years ago that I had cataracts coming (I was about 55 at the time). I've been on pred 2 and a quarter years, now down to 2.5. Early in 2015 I had my annual eye test and optician suggested I think about having my cataracts seen to. After asking friends who'd had them done I asked optician to arrange it and had both replaced with superb plastic lenses within 6 months. I specifically asked the eye consultant of the effect of prednisolone on my cataracts, and he said that my cataracts were not caused by pred, but were natural aging.

I too have fluid retention in both feet and legs below my knees. I've recently had additional blood tests, and an echocardiogram which showed that my heart was fine. I'm on higher dose of water tablets, and voluntarily stopped drinking alcohol, but alcohol seems not to have any effect. I'm pounds lighter though, which is good. I bruise easily, I have bad knees, but my GP says I look 10 years younger than I am.

I hope you feel better soon.

[Valnvaughan]

After many water infections I have managed to control them without antibiotics.

Ladies - Keep your internal organs well moisturised with an over the counter moisturiser.

Try Waterhfall D Mannose tablets or powder available on the Internet or some chemists. Take at the first "tingle of infection". You can also take a preventative maintenance dose.

This has worked for me.

I was diagnosed in July 2015 with PMR. Affects me below the waist. Started on 15mg Prednisolone, now down to 8mg per day. I put on loads of weight, but have returned to pre diagnosis weight with a carbohydrate free diet. My mobility is poor and I use a 3 wheel walker outside the home, as I found a walking stick caused back ache. I find swimming gently helps, especially after the pain reduces after 10minutes or so.

Surprisingly, I had a few pain free days after I fell down 4 stairs! Who knew?

Recent blood tests have shown that my diabetes looming threat has receded since I modified my diet. There are so many side effects to these meds! I am waiting an ear investigation as I have developed tinnitus.

Keep cheerful, it may go into remission.

Valerie

[Annodomini]

Hi Carrie

Two years ago, my optician told me I was almost unique among my age group (75 now) in not having cataracts. A year later he found one developing in my left eye. And now the optician I saw last week said the right eye was slightly misty. I am quite sure this would have happened with or without pred and I'm not worried about it, nor should you be. I wonder if your optician can be right in attributing your incipient cataracts to pred, since you've only been on it for such a short time. I have been taking it for five years and there was no sign of a cataract until last year. I'm sure it's purely coincidental.

The bruising, which had been very conspicuous at one time, has stopped now that I am on a low dosage. Unfortunately it just takes time and there is no point in rushing through reductions in dosage because that can result in a flare which in turn will set you back quite a long way. I was very grateful to Celtic for her recommendation of Doublebase Gel which is a wonderful moisturiser - soaks in without being sticky.

As far as UTIs are concerned, I used to be very subject to them but in the last five years of PMR, I can't recall having one at all. Thank goodness for small mercies.