Help please!

[Soosie56]

I have PMR and have been on steroids, 20mg daily, for just over a week. The stiffness and pain have improved but I still feel very poorly at times during the day. I started with EPR of 150 which has more than halved. Just wondered if the feeling unwell and fatigue are common. Thank you so much.

[Annodomini]

You're just at the beginning of a journey and have made a good start. Don't expect too much too soon and make sure you get plenty of rest. Also make sure that those around you don't expect too much of you. Fatigue is a major symptom of this condition and difficult for others to understand if otherwise you look perfectly normal.

[piglette]

I am so sorry you have got PMR and I am so glad that the steroids have helped. When I first took them it was like a miracle. It did take a little while to adapt to things and appreciate that I could not carry on the same way I had before although the rheumatologist gave me the impression that I could. My ESR was 127 initially and I thought it was high, you beat me. Did they take your CRP reading as well, I found this actually gave a better feel for the inflammation level. Look after yourself.

[PMRpro Ambassador]

With an ESR like that there is a lot of residual inflammation to sort out - give it time. You also need to rest - NOT rushing around catching up on what you have not been doing for the last few weeks!

Although the pred manages the pain and stiffness it does not do anything for the actual cause: an underlying autoimmune disorder that makes your immune system think your body is a foreign invader so attacks it. That is still happening and will continue to do so until it burns out. PMR makes your muscles intolerant of acute exercise - they won't warn you you are doing too much nor will they recover as quickly as normal. This means your muscles will be sore for a few days as if you had run a 10km race even though all you did was walk round the block. You can build up the amount you can manage but it must be slowly, adding an extra 5min to your walk every couple of weeks, not day after day. It also helps to plan a rest day before and after a day you must do something. Rest in the afternoon if you want to do something in the evening - you will manage more and feel better by resting BEFORE you are exhausted.

Autoimmune disorders are also often accompanied by fatigue - tiredness that isn't relieved by rest or sleep. And it can hit at any time: you can feel fine and think "I can do one more..." only to find a few minutes later that you have hit a brick wall - or that is what it feels like. One lady said she just wanted to crawl under the clothes racks in the shop and go to sleep! Another was rescued by a neighbour who found her sitting on his garden wall when she was out for a walk - she lived in the next street but was totally unable to walk that last bit. I would look for the sign to the loo - I live in a ski area and almost all are downstairs, heaven knows why! - and if it was too many stairs it meant a sharp intake of breath and a slow return to the surface! If there was a lift you could be sure it was a long walk to it and/or the toilets there and back!

So yes - feeling unwell and tired is very common and they may last some time. The pred manages your pain and stiffness - YOU have to manage the fatigue and learn to pace yourself. Know your limits - and DO NOT allow someone to persuade you "you can manage another bit". Remember the kids when they tried to eat too much - it made them sick.

[Judyta in reply to PMRpro]

This is an excellent description of the fatigue that comes with PMR. I have days ( a few ) where I really feel almost good but then within an hour or so my legs feel like lead. Some mornings I can walk the dogs and feel good then this morning I was dragging myself back to the house ! Standing to cook is sometimes a challenge.

I've have been challenged with PMR since August 2014. I'm now trying to manage with 6 mg of Pred, I did reduce from 4 to 2 but was feeling so bad I had to increase again. Probably reduced too quickly thinking I could " cure" this quickly but I'm trying to come to terms that this may be a drastic change in my lifestyle or IS a change..

Best to everyone and thanks for your thoughts.

[PMRpro Ambassador in reply to Judyta]

" I'm now trying to manage with 6 mg of Pred" - there is no point doing that at all. Either you take enough to manage it as well as possible within reason or you needn't bother taking any. Everything is a balancing act: enough result from the pred to make up for the potential side effects. If you don't take enough to get the benefits there are only downsides, pain and risks. There has to be an upside to make it worth it.

It isn't a case of no/low pred is better: the pred manages the rampant generalised inflammation that is in large parts of your body. Leave that inflammation uncontrolled and, even though you may be able to live with the discomfort, it is quietly giving your body tissues a bashing. In the long term it puts you at an increased risk of cardiovascular diseases (heart problems and strokes included) and some cancers amongst other things.

Pred isn't all bad...

[Judyta in reply to PMRpro]

"In the long term it puts you at an increased risk of cardiovascular diseases (heart problems and strokes included) and some cancers amongst other". Is this a scare tactic? I have no pain and the Pred. Never helped the fatigue. " you needn't bother take any". I feel these are a poor choice of words / thoughts!!

[PMRpro Ambassador in reply to Judyta]

No it is not a scare tactic - it is what untreated vasculitis can do to your body.

What I said was that it is pointless taking SOME pred but not enough to manage the symptoms and that is the impression you gave by saying "I'm trying to manage". If you now say you have no pain and stiffness at 6mg that is a different matter, you have the benefits of the pred to balance the long term risks associated with its use.

[Tski in reply to PMRpro]

I have never heard anyone say that not taking enough prednisone puts you at risk for heart problem, strokes, and cancer. Where did you come up with this information? As I have said before if I wait until I'm completely Pain Free before reducing I can imagine being on steroids for many many years! I definitely have PMR and have had it for 1 1/2 years yet my blood work is normal. Many people have PMR with normal blood work so are we immune to these diseases?

[PMRpro Ambassador in reply to Tski]

I also have no raised blood work, never have done, but no it doesn't mean we are immune to the diseases, it means our bodies "don't mount the acute phase response" to use the technical term. I have had PMR for 10 years, 5 years with no treatment at all and now nearly 6 years on pred. I had finally got down to 4mg for several months but have reluctantly returned to 5mg because of niggles - with the blessing of my rheumatology-trained GP.

Uncontrolled low grade inflammation has been recognised as a risk factor for certain cancers for a long time. Uncontrolled inflammation of the arteries (which is what happens in PMR and GCA) damages the lining of the blood vessels, forming scars and making them more prone to developing atheroma which is "degeneration of the walls of the arteries caused by accumulated fatty deposits and scar tissue, and leading to restriction of the circulation and a risk of thrombosis". The scarring can also weaken the vessel walls and it is known that patients with GCA in particular are at an increased risk of vascular disease, including stroke and aneurysms. One of the recommendations in the guidelines for managing GCA is that patients be screened for aortic aneurysm after having had GCA even though they have recovered. Patients with PMR are at an increased risk in the long term of peripheral vascular disease - not so much the central large arteries but the smaller ones - which reduces the blood supply to the limbs. PMR and GCA are probably the same - just affecting different sized blood vessels.

It is unlikely you would manage to be pain-free on pred, few people are, but you should be aiming for the best you can achieve. The correct long term dose is the lowest one that achieves the best result you found at the starting dose.

Where did I "get this from"? I have a physiology degree and worked in the NHS with further qualifications there. Some is from the reading I have done of the medical literature and discussions with experts. The cancer risk is something I discussed with a top German cancer expert - and he agreed that good control with adequate pred is an important factor in avoiding late consequences in GCA and PMR.

Much of this is avoided by the doctors because they "don't want to worry the patients". That is also part of the reason they tell us PMR will be gone in a couple of years - we have asked them why because the support groups are the ones who are faced with patients still on pred after 3, 4 or 5 years who are upset they have "failed". I talk about it because otherwise many people believe that "pred is bad" and "no pred is good". Pred is a powerful medications with many side effects - but PMR and GCA are both chronic, sometimes serious, illnesses with the potential to make us ill in other ways at a later stage. I believe knowing that helps us accept the best ways of avoiding those long term effects.

[Soosie56]

I can't thank you enough for your (speedy) replies. They all make so much sense. I just felt I needed some support and sharing of symptoms. I think I have needed to know that I am 'normal'. 😁 Brilliant feeling to share. X

[Soosie56]

Have bought the kindle version of the book mentioned in post above mine. Thanks.

[Ariadne8 in reply to Soosie56]

Foodie 56, Could you please let me have title of book you purchased on PMR? Ariadne 8

[olive2709]

Sence of humor is something you need with this illness steroids make you look good inside you feel so ill Kate's book will help you understand plus you family and remember next time someone asks do you need any help

Answer is

Ironing over there,washing up in the sink,and I would love a tea/coffee .

[Soosie56]

Thank you! 😀

[Charlie1boy]

Hi Soosie, I was diagnosed some five months ago, and can definitely subscribe to the feelings of fatigue and "grotty ness ". That is something I was totally not prepared for! I think that, to some degree, it was that my sleep patterns were, and still are, disturbed by the PMR/steroids. Whatever, I can testify to our "volunteers" remarks about hitting a brick wall, and wanting to sleep. Nowadays, I have to plan for at least an hour's rest each day in the afternoon, and, if I don't manage that, then there can be consequences! We have an Open Gardens event in our village in a couple of weeks on the Saturday and Sunday, which involves our garden, plus plant sales, and I'm not sure how I will cope with this non stop jamboree.

This forum, plus Kate's book, have taught me more about this PMR condition than I could possibly have learned from the NHS.

Good luck, and take it easy on yourself, and don't taper down your preds dose too quickly. Lots and lots of rest!!!

[Soosie56 in reply to Charlie1boy]

Thank you Charlie1 boy. Everything sounds so sensible, but when I'm feeling so grotty or tired I wonder if it will ever improve. I know I must be patient but at times this is hard. Evenings seem to be my best time, when I'm not doing a lot! Are you on high dose of pred or has yours come down and did that make you feel any better? I used to go to keep fit, out for coffee with friends and my husband and I had lots of holidays. Now I do very little, just occasional pottering about.

Sorry for the whinge! 😬

Hope your garden weekend works out well -lots of rest in between and you will have a lovely time. Sounds delightful.

[Charlie1boy in reply to Soosie56]

Oh dear, you are going through it! I was started on 20mg, then after 3 or 4 days up to 30mg to get the pain under control. That worked, and I have just last week gone from 13mg ( for 4 weeks) to 11.5mg, which I will stay on for at least 4 weeks.

I have no problem with the pain now, though I can feel the PMR in my system still very slightly. As for the fatigue, that does come and go a bit. It's always worst when some stress is around - for example at airports/travel, but otherwise, provided I rest it is not too bad.

Everyone seems to be different, but some gentle exercise is surely good if you can manage it. My day starts with walking my dog for 20 minutes, which helps ease any overnight stiffness, added to which the fresh air wakes me up.

I guess the main thing is to plan your activities out so that you aren't tired when you start, and hopefully you will be able to enjoy yourself.

You will soon begin to understand what you can, or cannot, do, and that should help you to manage your condition.

All the best.

[Soosie56 in reply to Charlie1boy]

Thank you again. Plan to start ten minute walks after Wed when I see rheumatologist again. I feel better for all this site contains.

Onward and upward! 😊 Will try to be positive and be patient.

Good luck on your healing too. Would love to know how the garden weekend goes.