PMRGCAuk
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PMR without Pred

Hi, hope everyone has had a good break so far.

Just wondering about letting PMR run its course without steroids? I reckon I had it at least 2 yrs before diagnosis and my weight, diabetes and bipolar were stable tho I was suffering enough PMR symptoms to be trailing back and forth to docs, physio etc.

Now the other conditions are all over the place, and I still have 50% PMR symptoms. The pred worked great at first at 15mg, but didnt last.

So I'm thinking for me is it better to deal with PMR without treatment and have other conditions controlled, or treat PMR and lose control? My gp avoided answering the question. Im waiting for rheumy appt, referred in Sept. Am down to 10mg pred, reducing 1mg 3 wkly. Am getting a little fed up, esp as Im carer to my hubby and daughter, Im supposed to be the healthy one in the house!!!

Anyway any thoughts?

Oh and do you know if diabetic eye screening will show any pmr eye changes?

Thanks.

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Hi

Many of us in the same boat as long time spent with PMR before treatment .

I ended up unable to do anything for myself .

I like others would say you would not manage it without steroids

Unfortunately caring for Husband and Daughter is not going to help .

You do need to rest and look after yourself .

Others will be along later to advise

Welcome to site lots of helpful advise on here

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Hello,

Life’s complicated isn’t it? You must feel backed into a corner. Stress is one of the most suspected causes of this condition where our body turns on itself when the immune system becomes confused. As a result, rest is one of the most important parts of recovery. Unfortunately, no matter what label you have been given, be it carer or anything else, toughing it out is not an option. If you had cancer and were on chemo and were unable to get out of bed, nobody would question it. PMR doesn’t have that drama to go with it, nothing to see and not much interest from anybody, but the approach is the same.

It isn’t a case of being stoical and pushing through the pain, untreated inflammation can cause all sorts of havoc inside, such as major artery damage and of course the much feared blindness if it develops into GCA. The Pred is necessary to stop this but if you keep trying to live life as if nothing’s wrong because you don’t have time for it the current level of Pred won’t be enough. You don’t say what your situation is in detail, but have to looked into getting help? What would happpen if you broke your legs, heaven forbid, and could not care for them? In a way this is no different.

So for the Pred side effects, the weight and diabetes are under your control which is good news even if it is a bit hard at times. Reduce carbs drastically and I mean drastically after checking with your diabetes specialist first. The Pred makes you crave carbs but when you’re off them, the craving stops, the weight comes down and your diabetes should love it too if you’re Type 2 .

Your reductions sound quite fast and once you get below 10 a 1mg drop quickly becomes more than 10%. Perhaps a 0.5mg drop might feel better. But in any case, no matter what plan A has been imposed, your current dose isn’t enough to keep the inflammation at bay, hence the pain. It is a warning not an inconvenience.

For your mental health, do you have any support? Reducing too quickly might be extra stressful. Have you got to contend with medication as well? Perhaps a few people on here who also have this challenge might be able to throw in some pearls of wisdom.

As for your eye screening showing things up, it depends. I had GCA symptoms (not PMR) and even with my eyesight shutting down rather rapidly, there was nothing to see in my eyes. Now I’m on Pred, I get my eye pressures tested every three months and of course cataracts and eye blood vessel damage are a complication with Pred but also with diabetes.

The time has come to look after yourself.

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Hi hya2cynth,

I think back in the day many went through PMR without Pred, and just put it down to “old age”, “rheumatics” or whatever, but I doubt they had a very good quality of life.

If 15mg helped at the beginning, but soon wore off I would say you were either reduced too quickly or that the initial dose wasn’t enough to get a good grip of the inflammation caused by your PMR.

The fact that you are a double carer as well will undoubtedly make it even more difficult for you to control your illness. Can you get assistance, or more if you do already? Your PMR is a serious illness and needs to be recognised as such. You need help, as SnazzyD says you need to look after yourself first and foremost, otherwise there is no chance of you caring for others. Get your doctor on board regarding this problem.

Pred does not cure PMR, it only manages the inflammation caused by the underlying illness.

If you try and cope with PMR without the Pred you could be building up more health issues for the future.

Have a read of this healthunlocked.com/pmrgcauk...

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Oh poor you. I can just imagine how it would send all your other conditions haywire. Your source of physical and emotional stress is still there so no wonder you are experiencing 50% PMR symptoms it loves stress.

I would have a thorough eye check no matter what. I certainly wouldn’t drop Pred suddenly.

Personally I can’t see how you can manage your caring responsibilities and recover. I could barely walk, step over things, lift my arms above my head with untreated PMR. You need to look at this from the practical angle of getting help with your caring duties. I wonder if the NHS can provide any assistance for you? You are in the U.K.?

I wish you a very wise clever Rheumatologist. Don’t alter anything without qualified medical advice. You clearly need help. You will be no use to your family if your health breaks down completely. Perhaps you need all the specialists to agree on a course of action for you Endocrinologist, psychiatrist and Rheumatologist. Let us know what happens. I can see your predicament. You may have to coordinate your specialists, but that’s what you do - coordinate- endlessly, isn’t it?

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Thank you all so much.

I am in the uk and expect I'll get a quick rheumy appt in the next month or so to meet the waiting list rules. Thats happened a couple of times this year so far for my daughter and husband.

We do all have help, they both have support workers and placements. I just hate losing the control I had over the other conditions when the pmr isnt even controlled. You've reminded me tho how I could barely walk before pred. Im not quite as bad but bad enough, getting as bad as before would be hard. But then my sugars would be stable, my mood stable and weight could reduce again. Its hard.

I'll await the appt but keep reducing as per gp instructions. He wanted to go faster btw, I slowed it down. And he diagnosed me on a 'gut feeling'.....try these steroids and it you have what I think it'll make a difference! Then he tried to get me off them in 6 months by which time I'd researched and had an opinion. But now Ive changed that a bit cos of my experience. Hey ho.

Thank you all again. I'll post again when Ive seen the rheumy.

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Diabetic eye screening should allow them to see any of the changes you would see in GCA - where the optic nerve meets the retina changes in appearance in some cases of GCA as the blood supply to the nerve is reduced. But they aren't always apparent so it isn't entirely reliable. That is a sign of longer term reduced blood supply, like angina - GCA can also hit like a heart attack or a stroke with a sudden total blockage of the blood supply and then you might not see any changes beforehand.

If you have symptoms now it is almost certainly because the dose has been reduced too far. You aren't reducing relentlessly to zero, only to the lowest dose that manages the symptoms. And in the early days that is likely to be higher than many doctors expect or want. I do appreciate your dilemma concerning the other medication you require - I think your GP has been very dilatory about referring you to a specialist - you are a special case and far beyond the abilities of any GP to manage properly. And he should have known that and have asked for an emergency referral. I don't think it is too late for him to follow that up if you don't yet have a date. Both your pred and your other meds need the input of an expert. You don't say when you decided to stop the pred - if it was early enough you could have been down to 10mg immediately and off far faster - your pred isn't doing anything but interfere with the other things at present so the sooner you stop it the better in that sense.

You CAN live with PMR and no pred. I did for over 5 years but it isn't something I would do again willingly. I certainly couldn't have looked after anyone as a carer - being a wife doing basic housework was hard enough! Some people eventually end up in a wheelchair if the inflammation is great enough, some people can't get out of bed at all without help - I wasn't that bad but there were a LOT of things I couldn't do. Basically, if I couldn't drive there and not have to walk I couldn't go. I needed the carer. Even on pred I think I would struggle with some aspects of being a carer.

One option MIGHT be tocilizumab (Actemra) - IF the rheumy can get permission to use it (which is doubtful at present). If tocilizumab could be used they could try justifying it in the basis of your other medical problems together with the fact you are your family's carer offsetting the cost. But unfortunately - the carer budget and the medical budgets are separate. It is worth a try perhps - providing the psychiatrist feels it is OK to use.

There is an increased risk of GCA developing in patients with untreated PMR (mentioned here academic.oup.com/rheumatolo... with a reference I haven't read in detail yet) - and if signs of GCA appear there will be a far more pressing reason to manage with pred as your vision would be at risk.

Have I asked before - where are you in the UK?

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Oh and I have no diabetic eye changes but I have been having some vision issues that vary. Could be high sugars, but it feels a little different. Good to know there is some crossover in the screening.

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And yes, I do struggle with the caring. Its not very physical, my daughter is learning disabled, has epilepsy and associated problems. My husband has early onset frontal temporal lobe dementia. So most of it is managing their days in way they can cope with, mental work for me mostly.

Anyway thanks again.

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I cared for my mum for 7 years with frontal lobe dementia so I do know how trying and heartbreaking this can be. My heart goes out to you. You must feel desperate sometimes.

You do need to be treated like a special case by someone qualified who knows and cares. I am sure this is not insoluable.

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Thank you. And I am feel for you too. Hugs over the 'net.

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Hi and wow! Loads of info thanks. Am in Central Scotland. I know Im not on an effective dose of pred and I've only been thinking to go without for the last few weeks when my blood sugars came out of the 'good' range after a year of successful control, and my mood plummeted but raising my meds made me toxic! I finally faced the scales and found only 1 stone increase when it felt like 5, tho believe me I cant afford even that.

I live in hope that the rheumy can work a miracle. And I'll go prepared with info from you all.

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I remember now!! Your other consultants could refer you sideways - and then you would stand a chance of coordinated care. Someone was saying they had a lady at Forth Valley who was very good - but I can't remember her name and it was a while ago.

Have you tried very low carb? That should make keeping the BS levels more stable easier.

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I have periodically tried esp right at the beginning of the diabetes about 8yrs ago. I find it very difficult and need to be in the right headspace. Both hubby and daughter have eating issues which I have to manage and the result usually is that I just take whats around. It something I can work on.

As for other consultants.....I had literally just been discharged back to gp care as I was so stable.....you have to laugh!

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Mmmm - yes, know the feeling about taking what's there - I did that all the year OH had cancer. The result was major weight gain!!! At least now making a piece of meat and salad is the easiest thing to grab!!!! Chips/no salad for him.

I know - if you didn't laugh you'd have to cry - and that makes such a mess! Given the state of the BS though - your GP should be seeking urgent advice I think. Do you not even have a diabetes specialist nurse at the hospital?

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Actually I do think I can call a clinic, never really had to before so forgot. I will look that up. Thanks.

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I have had type 2 for 18 years. Eventually after begging for 8 months saw diabetes clinic nurse. I am on insulin now. It's easy to use and combined with low carb diet means I feel my diabetes under better control and that ALWAYS makes my feel better. My hba1c has dropped from 114 to 54 in six months and I have lost a stone this year without effort.

I have always found that high running SUgar increases appetite enormously. Unlike non diabetics I try not to eat before I shop cos my appetite greatly reduced. Stress increases it too so I acknowledge that and try to at least eat low carb. I have had to have driving licence reduced to 3 year one. Because I am testing blood twice a day and adjusting dose accordingly I have had no hypos. Please investigate it. Feels better not to be sweating as much.. .not drinking all day and up all night peeling. Feet don't hurt as much. My levels were too high for test meter before I finally convinced them that with pred I needed more diabetes help. Hopefully getting one thing controlled will help others become manageable. Good luck.🌻

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