On 16mg Prednisolone and due for total knee replacement surgery in 3 weeks.

Piri - welcome! I haven't had surgery whilst on pred but I have a few other things to mention. Where are you from - using the term "surgeons rooms" makes you sound non-UK?

The first thing I'd say is how sure are they about your PMR diagnosis? According to the recommendations from most country's Rheumatologist's Associations, 50mg is a massively high dose to start a PMR patient on - that is what is usually used for someone they suspect of have giant cell arteritis (also known as temporal arteritis). In the normal run of things being on 16mg of pred should control the inflammation underlying PMR and needing a much higher dose is one of the criteria to suggest it might be something else - there are several other illnesses that present similarly and which should be ruled out. However, the symptoms you mention are typical of generalised GCA if it is claudication symptoms that you had in your arms and legs (crampy feelings starting and getting worse when you use them, exercising etc). That requires more sophisticated imaging to identify it (PET/CT) but should be considered.

The second thing is - are the pains muscular? Have you had your vitamin D level checked? If you are vitamin D deficient that can also cause extreme muscular pain that is very similar to PMR - MrsK who posts on here had that: she had GCA with visual symptoms originally and had never had anything resembling PMR symtoms but when she had severe muscle pain was found to have very low vit D levels and was treated with very high dose vit D (Dekristol) which relieved the pain initially but it returned. On testing it was found the vit D level had fallen again so now she gets regular top-ups and has no problems.

The third thing is - it may be that the pain from the knee and you worrying about the op may cause you enough stress to make the PMR worse, lots of us find any stress really makes the PMR play up. If you can cope with no pred and there are no withdrawal problems (dropping your pred dose can also cause similar pains to PMR of course, that's another factor to consider and you must be dropping your dose quite quickly) then maybe once the knee pain and the op are over you will deal with the PMR pain better on a lower dose of pred. They must be keeping a close eye on you so will be aware of any problems with reducing the pred dose so quickly. The trouble is that, if it is really PMR, then taking you off pred will just bring you back to the same place as last November. In itself, that won't harm you although it will be mega uncomfortable and mobilising after the knee op may be very difficult for you but what may happen is that it is more difficult to get the PMR symptoms under control afterwards because of the yo-yoing of the pred dose. However - my suspicion is it isn't simple PMR and they need to look a bit further.

Nevertheless, reading through what I have written, it occurs to me to ask: who at the surgeon's office said you should be off pred altogether? Was it the surgeon himself? Or an office minion? Because one of the most important things post-op is going to be mobilising properly. When I was at my worst with PMR there was no way I could have used a zimmer frame or crutches to walk because my arms wouldn't have supported me without excruciating pain and I couldn't have done it. If you have similar difficulties with your shoulders, arms and thighs when not on pred - what will happen? I think this is something where you need to write down the queries and go to your GP and explain it in words of one syllable. No heroics about how much pain you are in - tell it how it is, no punches pulled. Because believe me, most docs have no idea at all how disabling PMR pain is. We don't LOOK ill, in my case my blood levels have never ever suggested anything is wrong, but that certainly doesn't make it not hurt, does it ;-)

Now you've found us and joined in, do keep us all up to date about what happens and how you do

all the very best,

EileenH

i am so glad eileen has replied so quickly because my first concern was the high dose of pred and wondered about gca this would explain the high starting dose ,eileen has explained everything so clearly and i voice my concern on post op recovery because you have to be non weight bearing which means crutches so your shoulder /arm strength is very important .i do hope they look into your diagnosis and understand that low/normal inflammatory markers in your blood results do not mean you are always pain free good luck and keep in touch this site has helped me enormously carolk

Exactly Carol - the thought of being non-weight-bearing post op with shoulder and arm pain like I had without pred doesn't even bear thinking about and Piri sounds worse than I was. I'd had PMR for 5 years with no pred and at one point could have done with crutches for a short time - but my hands and arms just said no. I think all the people concerned need to sit down together on this one - too late after the deed is done ;-)

Last year I had snapped knee ligaments and was really concerned about whether I would be able to get about without crutches as even now I don't think I could do non-weight-bearing for long. As it was the knee brace was amazing and posed few problems - because the knee bent very slightly right from the start. The one I was given to leave hospital was the "no bend" sort - going to the toilet was an interesting experience and my daughter who has something similar now after knee stabilisation surgery says the same!

Eileen

I just do not understand this 'off pred before an operation'.

You carry a blue steroid or wear a warning bracelet so that if you happen to be in an accident, the medics are aware you are on steroids. As long as they know, they can then deal with it all. You also have to carry the card for two years after you stop taking steroids.

As long term use of steroids makes you a 'bleeder; that is why they need to know.

Some people are on steroids for life and cannot do without them, the surgeons and anaesthetists cope

with that fact.

Ask the questions.

agree with previous writer but i suspect the surgeon sees it from his criteria of needs and a patient on steroids is seen as a risk for various reasons including poor healing /bleeding/bruising and wound infections are more prevelant , re pt been immuno supressed that does not mean that all patients will have problems and as said by previous writer some patients have to stay on steroids and surgeons deal with it .i think its a case of once again alerting them to your pain control issues and how will you be able to manage post operatively ,at the end of the day you need this op and knee joint replacements have very good outcomes so they are worth having .good luck i am off to brighton to see my grandchildren this weekend so hope to hear you have managed to get some reassuring answers when i get back carolk

Piri

How very confusing for you when you are being given such conflicting advice by your GP and your surgeon.

Rather than reduce or take you off steroids for your operation(Heaven forbid the speed of that), most people undergoing surgery whilst on steroids usually have their steroid dose increased for a few days around the surgery.

If I were you, I would be asking a lot of questions right now and demanding a lot of answers. I do wish you well.

MrsO

Hi everyone

I have only just been diagnosed with PMR and this discussion forum has been great for finding out the things that doctors don't tell you! Apart from the PMR diagnosis all the info I have has been researched on the net. There are so many 'scare' sites that it is a relief to find this one that is from real people coping with this condition with sense and humour (essential)!

My pred dose was initially 30mg - 4 weeks ago - and I am now down to 20mg. I am learning that it is a delicate balance between feeling better(pain free) and resisiting the urge to go for a long walk to celebrate. Done that a couple of times and regretted it!!

I was trekking in the Himalayas in November 2011 and have always been a walker and very active. That is one of the hardest things to accept at the moment - the fact that a short walk with the dog is my limit!

I can see by reading all the discussions that there are so many degrees of this condition and each one of us has different stories to relate.

It is great to know that there is such a fund of information and help available - thanks.

I am in the UK in East Anglia. Yes its flat here but still enough hills between me and the local shops! One day I will do the walk both ways without suffering. Perhaps this will be my new Himalayan trek!!

wendyanne

I notice you are located in East Anglia.

There is a Support Group located in East Anglia.

If you google pmr-gca-northeast.org.uk then you will find the name and address of that support group, listed under support groups.

This message entered by PMR & GCA UK North East Support

Charity Reg No 1138409.

Hello Wendyanne49 and a big welcome although sorry to hear you have been dignosed with PMR.

You will find a wealth of information on another very active forum, the details of which I can't post here now as the moderators will hold up the reply until they check. You should, however, be able to find the website details when you check into this forum,

Meanwhile, I see that you live in East Anglia. If you are anywhere near the Needham Market area, there is a PMR support group that meets there several times a year. Perhaps if you do a bit of Googling with the words PMRGCA support East Anglia, you will find all the details.

You have already discovered from experience that the most important thing with this illness is to learn to pace yourself, so if you have a good day, don't overdo things or you will get payback on the next.

I've always found it amazing how many highly active people like you have been struck down with this condition. They did start you on a very high dose for PMR so let's hope it gets full control over the inflammation and you have a smooth journey to recover but slowly slowly is the key especially as you get lower on the dose.

MrsO

Moderators

It would be helpful if you can please quote the website for the pmrandgca forumup, plus the North East Support Group website so that Wendyanne can contact them.

Thank you

MrsO

Hi wendyanne and welcome! Just to add to MrsO's post, if you want sense and humour by the bucket load come and visit the other forum. Try googling pmrandgca dot forumup dot co dot uk (wonder if this will escape notice ;-)

There are several members in the East Anglian area and one of them is another walker - she also hangs around here occasionally. She is waiting for a hip replacement just to add to the joys of PMR - and is desperately waiting to be able to walk again as she and her husband had planned all sorts of walking trips all over the world for enjoyment in his retirement which started soon after she developed PMR.

all the best, Eileen

Eileen it worked so here goes.

pmr dash gca dash northeast dot org dot uk it is a website

Thanks ladies! The sun is shining and today is a good day.But will proceed with caution and resist the urge to overdo the body!

Hope your day is a happy one.

Hello wendyanne.......... know this is some months down the line and do so hope you see this.

I have had PMR for nearly two years now and needed a hip replacement ( also have osteoarthritis!)

Sadly I had gotten down to 5mg prior to surgery but had a flare and had to go back up to 10mg....... so I was on 10mg of pred the day of my surgery and it was no problem....... I was given an injection of synthetic steroids during the surgery and I did bleed a lot and need a transfusion during the surgery...... BUT have gone on to make a great recovery and seven weeks post surgery am walking well and hoping to drive once I see my surgeon this week.

So, do not worry about it..... surgeons and anaethetists are used to PMR/GCA these days. How are things?

As the initiator of this discussion I am so very embarrassed that I have not got back to you kind people. It has been a difficult few months and I will try briefly to bring you up to date.

I was able to get down to 12mg pred. prior to my knee replacement on March 28th. Like Fiftiesgirl, I was given an increased dose by injection for a few days while in hospital and then while still there reduced back to 12mg.

My surgery was very successful but I had a little problem with my wound healing so I had to stay in hospital for 16 days .( Was only 7 last July for my other knee). This was caused by the steroids and my surgeon would not let me go to the Rehab Hospital I had planned as he did not want me doing physio because of the wound.

So , home I went on a knee that felt very good for just 16 days after surgery. I was on plenty of opiate type pain killers plus the 12mg.pred but had excellent bend and movement in the knee and the PMR didn't feel too bad at all. Just slight discomfort in the arm/shoulder muscles.

Then, at about week 4 post op, I had what you all call a fare up in a big way .

Blood test showed indicators elevated and my doctor increased the pred. to 25mg about two weeks ago.

This increase has not helped at all , infact the pain has increased and for much of the day I have immense difficulty using my arms. Just typing this is painful.

I am due to have another blood test at the end of this week and then see my doctor again. I have been tempted to go back sooner but I know that all she can probably do in increase the pred higher and the side effects are bad enough at 25mg, I certainly don't want them to get worse.

My doctor has also referred me to a specialist rheumatologist, but unfortunately the one she wants me to see I can't get an appointment with before mid July. Am just hoping for a cancellation.

Knee wise I should be back driving next week but there is no way I could do this safely with my arms the way they are.

I know I don't have to explain to you fellow sufferers the down times I am having through all this. I do know though that we will get it right eventually but the thought of increasing the steroids even higher, perhaps even back up to the original 50mg horrifies me. Then it will be the slow, slow reduction.

I think I am having this awful trouble at the moment because I went down too quickly from 16mg to 12mg pre op. I know it is not at all unusual to have surgery while on steroids but my problem was the high dose and for a couple of reasons I had to have the surgery on the planned date.

I know I haven't answered a number of your questions but I do really apologise for not acknowledging your kind replys to my initial post. By the way, I am a 69 year old Australian from Melbourne. The Nationality may explain a few differences in treatment etc.

Thank you so much to everyone who takes the trouble to post on this forum. I do not know anyone who has PMR, so it has been such a help to me in gaining an understanding of this disease.

Cheers.