Pmr

[Kylie21]

I had all the symptoms of pmr gp done one blood test , esr was 28 which is not really that high but started steroids that day , first 8 weeks I was like a new woman no pain lots of energy and felt like I had my life back ! Then over night everything went downhill I've had wheezing and chest problems been sent for a ECG and told could have angina , seeing a cardiologist on Thursday and this is only a few of my problems , my gp is not interested and just says oh yes these are side affect of prednisalone , gp did not inform me that some major side affects only show after 2/3 months of taking them I now feel these drugs have ruined my life and had I have been told everything from the start I would never have taken them and I am now going to ask for a second opinion. I would ban this drug as its ruined so many patients lives. I would tell anyone to seek more advice before even thinking about taking them.

[meggies]

Hi Kylie, so sorry you are having a bad time at the moment. Couple of points - you said your ESR was 28 - not that high etc. That's true, but a % of people with PMR/GCA do not show any changes in their bloods at all.

I understand how you feel about steroids - my side effects are grim too but without them I can't walk, so not too much choice. Remember that steroids could well be saving your eye sight - without preds, the chance of developing GCA increases considerably. Approx 3000 people lose their sight every year due to GCA (hope your GP told you what symptoms you should take seriously). Also, you are at risk of developing other nasty things if you leave untreated inflammation in your body for a long period. Honestly, awful as they are, steroids do literally keep many people alive with a whole range of illnesses. Your GP should monitor you though - we all should have dexa scan at start of long term steroid use, to get a baseline for your bone density, check your cholesterol, BP, blood sugar etc.

Hope all goes well with the cardiologist and you start to feel bit better soon.

Margaret

[Kylie21 in reply to meggies]

Thanks Margaret yes I am aware of all the problems of gca and have all thee monitoring done. But the thing that has annoyed me more than anything is that a lot of gp's do not tell patients about all the major side affects that don't appear till you've been on steroids for at least 2/3 months example heart problems which I am now being checked for , yes steroids are great in many ways but the bad long term problems out way the good points , If I had been told EVERYTHING then I would have done a lot more searching on these drugs before making the decision to start taking them. Just waitng till I see cardiologist on Thursday

[Hidden]

Hi Kylie, I totally agree with your perspective on this. Taking steroids is a major life changing decision and the side effects must surely be explained in full by the dispensing GP. I did not get enough relief with a small dose so I chose to come off them altogether. Acupuncture helps me through this along with anti-inflammatory supplements of tart cherry and turmeric capsules. In this day and age of GP's paying for blood tests and referrals out of their own budget, it makes me wonder if the services we get are based on need or finance. I certainly was never referred to a consultant, nor had a scan. I do not regret ditching the steroids but it does take a while to come to terms with this disability, on drugs or otherwise, so I wish you the best of luck and hope you find your own way to deal with this.

[Kylie21 in reply to Hidden]

Thanks for your reply , yes I agree I think it all comes down to money !

And I am going into see gp today to discuss

this in more depth I won't leave till I get answers

I was a nurse for 22 years and know how

the medical professionals work ! And my gp

is aware of this , so he knows I will stamp my

feet till I get the answers I want. Thanks again for your comments.

[Celtic PMRGCAuk volunteer]

Kylie

So sorry to hear you appear to be having an adverse effect from the steroids. I agree that it would be helpful if the GPs made us aware of steroid side effects up front but as there are 82+ listed possible side effects, that would present a problem. It is important to mention that most people suffer very few side effects whilst others don't have any at all.

I was bedbound for several months due to undiagnosed PMR and attending hospital appointments by ambulance and wheelchair. A year later when I thought I had beaten whatever had afflicted me, I became seriously ill with even worse symptoms. Eventually I was diagnosed with both GCA and PMR and learnt that because the inflammation of my undiagnosed PMR had not been treated and controlled with steroids I had been put at a higher risk of developing GCA! The steroids aren't easy to live with at the higher doses but they gave me back some quality of life and, most importantly, they saved my eyesight.....just! As Meggies has already posted, untreated inflammation lurking around in our bodies can lead to all sorts of other nasties including heart problems.

I do hope the news is good following your cardiology appointment and that once your wheezing and chest problems are sorted you will soon start to feel better.

[Kylie21 in reply to Celtic]

Thanks for your reply , I do however disagree with your percentage if patients

who don't suffer side affects as I have visited dozens and dozens of forums and it is actually the other way around with the percentage of patients whose lives have been ruined by this drug and even after some have been weaned off them not all thier health problems go away , some have been left with heart and lung problems amongst other health issues , some top consultants also agree that some gp's are to hasty to give out this drug before doing further investigation and getting the correct diagnosis confirmed. But I am visiting my gp yet again today because of blood result problems and am ready with all my questions and will not leave untill I get answers.

I'm glad you are slightly better with your medication and wish you well.

[Pipistrelle]

It is true that steroids can have many side affects, but at the level prescribed for PMR in particular (starting at 15-20mg then tapering slowly over time) they are generally few to nonexistent. I've had none except that hyper feeling at night initially at 15 mg, but then some people do have more. I absolutely agree that GPs should be clear on possible issues BUT angina could be due to many things, not just a side effect of steroids and it is worrying if your GP just casually mentioned this before any testing has been done (why are you sticking with this GP? I'd change asap!). Also, the risk of stroke and serious heart problems if GCA and PMR are left untreated with steroids (or possibly in some cases NSAIDS, though for many these are not adequate) is a MUCH greater health risk than the side effects. At the very least I would be taking NSAIDS to to reduce inflammation; relying only on complementary medications is very dangerous with these illnesses and to do so with PMR gives a much higher risk of getting GCA and then having to go on far higher doses of steroids! Please read for example well known complementary medicine expert Dr Weil's recommendations on GCA and PMR -- it is to take steroids because other far more serious health risks are so high in not taking them, but also take complementary treatments to help perhaps reduce the needs for steroids faster.

The damage of NOT taking steroids while having PMR can effect one's health later on as well as this is a vascular, not a traditional joint or bone arthritis and the damage can be *permanently* done to blood vessels, *creating a greater lifetime risk of heart problems and stroke*.

The other aspect of steroids and PMR is that reductions initially are fairly quick to 10mg or so which is the level at which most people stop having side effects. Within a year most people will be at only 5mg or lower, matching the body's own production of cortisol.

In your case I would be asking for a referral to a rheumatologist as it doesn't sound as if your GP has managed this very well and is not explaining enough. Also a GP often will not know what the blood tests really signify (as noted many with PMR or GCA don't have elevated SED rates etc and many older people will have some elevation from age-related inflammation generally...). What level of preds did they start you on? What were the reductions? By 8 weeks later most people would be down t0 only around 10-11 mg a day where complications are really rare. BTW check the list of complications and side effects for ordinary aspirin -- they are as long as those for preds! So most meds do have quite a long list of potential (but rare) side effects and some more common -- and with preds, side effects that generally go away pretty quickly with PMR as the dosage drops.

If there are serious side effects (and some people really cannot take prednisalone) there are other ways of addressing the inflammation but you need to be working with a rheumatologist who is keeping you informed and working WITH you. I have a great GP but her knowledge of PMR was very limited.

On a separate note, please take what people say about problems in online forums with a grain of salt. Forums can be extremely helpful and supportive for people and many patients will know more about some conditions that their physicians sometimes -- BUT -- having been on many myself, you have to remember that people WITH problems are far more likely to post and also stay with many forums so you do get a far more depressing view of almost any condition than truly reflects the population at large. People with few side affects from a medication, or who recover, have far less motivation to post in the first place or to remain on forums (those that do, and are an inspiration and a reminder that things generally do get better for most illnesses, are real gems for giving that time and effort!).

[Annodomini]

I suspect it's probably true to say that forums don't necessarily give an accurate perspective on the percentage of patients suffering side effects from pred. People having side effects are more likely to post on these forums than those of us (myself fortunately included] who have none.

[Hidden]

Kylie

You might like to read the British Society of Rheumatologist Guidelines on the Diagnosis and Treatment of PMR and GCA. Issued June 2009 and since updated. These are available on the BSR website and on PMR GCA UK North East Support website.

You also wrote "it is actually the other way around with the percentage of patients whose lives have been ruined by this drug".

I would be very interested in where this information is published and who by? Is it possible for you to post the information?

I would also add that without Prednisolone, I would be blind, so side effects or not, I will take Pred with all its drawbacks.

[Celtic PMRGCAuk volunteer]

Hello again Kylie

I was just about to post a further reply to you when I read Pipistrelle's post - I therefore just echo what she has said about the number of people posting about their problems on forums - they post because they are having problems and are seeking support, whilst thousands of others have trouble-free treatments on theirpersonal journeys so therefore do not feel the need. As far as PMR is concerned, I have contacts who have sailed through the illness and the steroid treatment with little or no problems at all, having textbook recoveries in 12-18 months and have therefore never felt the need to join a forum.

Thank you for your good wishes - I am happy to say that I am better than "slightly better" having recovered from both PMR and GCA and have been off steroids for the last couple of months.

I do wish you a good outcome to your problems.

[Hidden]

Hi Kylie

I hope all goes well with your specialist tomorrow.

There has been lots of good advice from our fellow members. I hope you have found some of it helpful.

I was given 30mg of pred when it was first suspected that I had PMR. It knocked the pain out in 3 hours. In no time at all I was down to 20mg and it was between the 20 and 10mg doses that I had problems. They were all mental problems. I was having very little sleep and when I could sleep my dreams were horrible. I became extremely depressed and often had to force myself to get up and carry on. The increased weight and round, hairy face didn't help me to feel better, only worse. I thought my life would never improve. Also my energy levels were very low and I had to pace myself continually.

I found I could only drop the pred 1mg at a time which I did every two weeks. However, once the drops in dosage got below 10mg I began to recover, in leaps and bounds. The drops have been even less in size and I've only managed half a mg every two to three weeks. I am now on 6.5mg since yesterday and feeling pretty good. I have a very good rheumy who has been with me all the way. Very supportive. The side effects have mostly gone and I know I look well. Friends and family all tell me that it's hard to believe I'm ill.

Like all powerful drugs prednisolone will cause side effects, but as the dose drops the effects begin to go. Personally, I think what I have been through was worth it. What I have now is hope that I will get back to a normal life again.

Pats.

[Wellagain]

I would like to know what ERS levels were when you were checked for GCA?

[enen]

102 ESR Female aged 56