PMR/GCA PAIN RETURNED ON PRED REDUCTION

I think you need to go to A&E at your hospital as soon as possible (by that I mean this evening, do not wait until tomorrow) and tell them all this. This was a very fast reduction at quite an early stage of GCA and the symptoms you describe are typical of GCA so need to be seen and treated - you will need a much higher dose of pred for developing GCA, a dose of 25mg is not enough to deal with GCA swelling and GCA is a medical emergency. If you told your GP this on Friday she was very remiss in not sending you to hospital. Please make sure you tell the triage staff your history of GCA diagnosis and emphasise the visual problems and jaw and scalp pain. The visual problems suggest the swelling is affecting the blood supply to your optic nerve and your sight could be at risk. I don't want to scare you - I just want to make sure you understand that this is urgent.

I live in N.Ireland and see my Neurologist in Belfast. I was referred to Neurology in July 2013 re possible MS and eventually diagnosed with GCA & PMR at end June 2014. Have another appointment with eye specialist in a few weeks also. Should the PMR symptoms not be controlled with 25mg?

Maybe you could up the steroids yourself as a lot of the time we have to make the decision whether to reduce the steroids depending on how we feel, see what others think about this.I have had GCA for over s year now, and have been up and down with the steroids due to relapses.

40 mg did not cope with GCA so I was put on 60mg and very gradually reduced. It sounds as though you need a higher dose of steroids immediately. Do you have frequent blood tests to check inflammation markers? After 3yrs on steroids I am now down to 2mg a day & with a few flares along the way! Good luck & maybe you could be referred to a Rheumatologist? (I'm assuming that is different from a Neurologist!)

Caroline, when you were diagnosed and started on steroids, did you have a resolution in your pain of at least 70%? If so, at what level of Pred did your symptoms start returning? A&E is the place to be, otherwise if it was me I would at the very least up the dose slightly above where I last felt comfortable - that is vital to protect your eyesight, especially in view of the symptoms you are experiencing: blurred vision , jaw pain , numb face, sensitive scalp, headaches and head sweats.

Are you someone who had raised blood test markers (ESR and CRP) at diagnosis? If so, these tests should have been carried out before each reduction in dose at this early stage rather than just being told to reduce by 5mg every two weeks.

If you don't go to A&E this evening, do see a different GP at the surgery first thing tomorrow and ask for emergency referral to a rheumatologist. Otherwise there is the private option.

Caroline, five months wait to see a rheumatologist, when, with a diagnosis of GCA, you should have been referred as an emergency. You need to chase this. Meanwhile, you can't just continue reducing according to the neurologist's plans and be at 10mg by Christmas when you are experiencing such severe symptoms with the subsequent risk to your eyesight.

I have asked about referral. Neurologist says he knows what's wrong with me and no need to see Rheumatologist. GP said similar. I will not be reducing Pred whilst in this pain and will be telling Neurologist this on Thursday. The side effects have been very difficult for me and I think that is why they are so keen to reduce quickly. However that will not be at the expense of my sight. Thankyou for just confirming what I had expected and for all your support. I do feel overwhelmed at times with everything.

Hi Caroline,

Have only just read attached. My advice, as someone who lost the sight in one eye over a period of 3, yes 3 days, once the blurriness had started is get to your GP or A&E soonest! 25mg will NOT save your sight.

Sorry to be brutal, but you need to up your dosage ASAP. DorsetLady

Asking your GP "is my sight at risk" will probably get you the proper response/treatment! According to my Rheumy the jaw pain is a significant pointer of GCA activity. Go back to A& E and as them if doing nothing could put your sight at risk. GCA IS a medical EMERGENCY

Blood results, ESR and CRP are the important inflammatory markers CRP 1 is normal ESR 1 - 16 = Normal, my GP says age divided by 2 is ok.

Hi Caroline. It's no fun at the beginning is it? I started on 60mgs for my GCA with visual symptoms and tried reducing 10mgs monthly. At 30mgs all my symptoms returned and I sat on 35mgs for a couple of months. You must just go up to a dose where you are symptom free and stay there- give yourself a month out of pain at least. Then, if you reduce again and the pain returns, stay at the old dose and try again later. There is no rush to get off steroids - even at these relatively high doses. From 20mgs I came down just 1 mg a month,always stopping or upping if my symptoms returned. You have active arteritis today and you need lots of steroid to dampen it down. No medals for suffering on a lower dose. stay calm. It must be such a relief for you to finally have a decent diagnosis and an effective treatment after so much suffering. Don't let your doctors take your effective pain relief away ! Xx

i am not a doctor but you seem to be going down way too fast on prednisone. you have all the classic symptoms of GCA . i too experienced the blurred vision on prednisone. i think that is due to the medication. i feel like a broken record but you have to treat the symptoms and not just go by the blood tests which all doctors want to do.

Hi 11caroline29,

Sorry to hear about your symptoms, I think èverything is a bit more complex when you fall outside typical age ranges for conditions.

It's interesting that you mention that optho aren't concerned about your eyes. I have had blurry vision for over a year ( helped by high dose pred and other immunosupressants ) and feel that optho have never taken me seriously. After doing some research it appears that not all vasculitis in the eyes shows up on a slit lamp examination. Fluorescein angiography and ultrasound are sometimes needed. I am waiting to see the medical opthamologist at Addenbrookes who is very thorough, he takes a day to conduct the various tests and " finds " damage because he knows what to look for.

As regards the Neurologist managing your PMR/ GCA then the obvious question to ask him is how mućh experience he has in managing these conditions and how many patients has he treated in the past. He wouldn't expect a Rheumatologist to treat MS for example!

The best advice I can give you is to ask for a referral to a centre of excellence for PMR/ GCA or vasculitis. There are a number dotted up and down the country ( Cambridge, Leeds, Hammersmith in a London etc ). Due to your age ( atypical ) and your adverse reaction to steroids it sounds to me as if you need some expert treatment.

Good luck.

Well just to update all you kind people who gave me advice this week. I have been to the Neurologist this morning and he has confirmed GCA still active and PMR flare up so steroids increased to 35 mg and to start taking Mycophenolate 1000mg per day. Apparently it will take 3 months for this new drug to work and I have to be monitored weekly. Anyone tried it? Concerned already about side effects.

Hello Caroline,

I have had GCA for a little less than two years now. My doctor recently recommended that I try a wheat-free diet as wheat is thought to extend the period of inflammation. Given the details in your post I recommend you read "Grain Brain" by Dr David Perlmutter. After reading it do first ask you doctor about any change you may wish to make to your diet to be a carbohydrate and low sugar one. I am impressed with the benefits that I have made to my diet.

Richard

Hello Caroline

As a retired nurse and health visitor when I met with refusal to refer to specialist vasculitis centre I was prepared. I went armed with notebook and pen. I said:

“I would like to confirm that I have understood what you have said, so could you confirm the reason for your refusal”. Is it due to cost to this practice?”

Surprised GP then told me that he wanted me to have another blood test to which I replied that of course I would have them but I wanted an immediate referral and that I was under the impression I was entitled to second opinion.

I got my referral! Obviously health care referrals may hav different criteria.

I have had GCA, polymyalgia, vasculitis since 2012. My lungs were badly damaged in first flare and whenever I reduce prednisolone to below 28mgs II developed dreadful congestion in my chest and invariably end up of long courses of antibiotics. I also experience all the symptoms you describe. I have had very high inflammatory markers occasionally but am often sero negative while experiencing awful pain, exhaustion and stiffness.

I started on microphenolate (MMF) 12weeks ago. My daughter was prescribed this 2years ago and it transformed her life, dramatically improving her symptoms but it took much longer than 3 months to work.

Sorry for this long post but even I have felt helpless and powerless at times.

Very best wishes and do let us know how thing go.