PMRproAmbassador8 years ago

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.

11caroline29 in reply to PMRpro8 years ago

Thankyou for your reply. I have been to eye casualty twice and optician twice and Opthmalogist with these GCA symptoms over the last 3 months and no one seems to treat them as a medical emergency. I keep being told by everyone as I am under specialist care of Neurologist only he can change treatment. I will be seeing him on Thursday. My headaches are not as frequent as in the first 2 months but I do worry about the other symptoms. Yes you have scared me again as you did in Sept and after spending 6 hours in eye casualty I was sent home again. I find it all very frustrating never mind stressful.

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PMRproAmbassador in reply to 11caroline298 years ago

I'm so sorry - they are talking rubbish though, if it is an emergency then they need to contact the neurologist.

Where are you? It is very unusual for GCA to be under a neurologist, it is more often than not a rheumatologist in the UK and much of Europe but the eye people should also be aware of the risks.

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11caroline298 years ago

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?

PMRproAmbassador in reply to 11caroline298 years ago

If it were pure PMR yes - it should be controlled by 25mg. However, I'm not sure whether if it is full-blown GCA that is causing the PMR symptoms whether that means it is affecting a different level of the arteries so you would need a higher dose to control that inflammation. I will try to find out from a rheumy.

It is also possible of course that the reduction you were told to use is simply too big steps and you are suffering steroid withdrawal pain which is very similar to the PMR pain and stiffness. It is less of a problem at the high doses but now you are down to the 30mg realm the reductions should be no more than 10% of the current dose - 3mg rather than 5mg, from 25mg it would be 2.5mg - and while you tend not to think that 3mg isn't so different from 5mg, in this context it is.

It is the other symptoms that worry me though.

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blackbird238 years ago

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.

optimist-ok8 years ago

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!)

CelticPMRGCAuk volunteer8 years ago

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.

11caroline29 in reply to Celtic8 years ago

Thankyou for your reply. Yes I had great pain relief when started steroids within 2 days but pain started to return in hands and feet at 30mg and neck shoulder back pain returned at 25mg. Yes I had high esr and crp at diagnosis but these reduced after few months on steroids. Had bloods taken again on Friday at my request when at GP. I was referred to a Rheumatologist in June but still waiting. Neurologist plans to reduce my steroids to 10mg by Christmas and also add Methotrexate to my list of medicines.

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CelticPMRGCAuk volunteer8 years ago

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.

11caroline298 years ago

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.

DorsetLadyPMRGCAuk volunteer8 years ago

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

tauntonsue8 years ago

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

11caroline29 in reply to tauntonsue8 years ago

Thankyou for your reply. I phoned GP this morning and am waiting for a return call. My blood test results are back too from Friday but was told GP to discuss with me. So patiently waiting.

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tauntonsue8 years ago

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.

11caroline29 in reply to tauntonsue8 years ago

My ESR is 9 and CRP is 5.3 which is slightly raised from last month. It was 55 in June before steroids. GP said not concerned but speak to Neurologist on Thursday. Same old story!

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Hidden8 years ago

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

11caroline29 in reply to Hidden8 years ago

Thankyou for your reply. No fun at all. Some days I feel worse than life before steroids. So many side effects. Spoke to GP again this morning and was advised not to increase Pred until I seek advice of Neurologist on Thur. I certainly will not be reducing for some time. I am so glad of everyone's kind advice as I still feel very alone with GCA & PMR.

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Trenny in reply to 11caroline298 years ago

What side effects do you have from steroids? I am on 10mg , 22 months after diagnosed GCA. I blame muscle weakness on them BUT have just been diagnosed with Parkinson's, which is confusing what to blame on the steroids!

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300488 years ago

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.

Hidden8 years ago

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.

11caroline298 years ago

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.

Richard20128 years ago

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

Persi5 years ago

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.

11caroline29 in reply to Persi5 years ago

Hi Persi

This was a post from 3 years ago at the beginning of my pmr and GCA journey. I took the Mycophenolate for 12 months and it did absolutely nothing to help me. I am currently on 10mg Pred which seems to be the level I need. A year ago I got to 8mg but had 3 flare ups in 2017 so not keen to reduce further. I haven't seen my Neurologist in 9 months as he is on long-term sick. I retired from NHS on ill health at age 50 since this post also. Everytime I see my Neurologist he wants me to try Methotrexate but I am not keen. When I eventually saw a Rheumatologist he said both these steroid sparing drugs had no place in treatment of GCA. So that confirmed how I felt. I hope the Mycophenolate helps you and glad to hear it helped your daughter.

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Persi in reply to 11caroline295 years ago

Hi Caroline

I should have emphasised I have not been prescribed MMF for GCA but vasculitis. My GCA symptoms return when reducing pred to below 30. I took Methotrexate initially orally then by self injection. Because I was reducing pred at the same time I had awful chest problems. Depending which antibiotic I took I then could not take Methotrexate for one or two weeks so it never had a chance to work. I did not experience sny side effects.

I have had Rituximab and when it should have been working at maximum I was in hospital with a vasculitis flare that was affecting my heart.

The MMF is an experiment that I am hoping will help.

Best wishes.

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11caroline29 in reply to Persi5 years ago

Yes I do hope it works for you as you have had a difficult time since 2012. You obviously have been on high dose of steroids for a long time. It was difficult for me to get to 10mg but now my esr has jumped to 40 and crp is 9 so still a lot of inflammation going on. Its going to be a long journey for both of us.

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DeliaGray4 years ago

Hello this may be of little comfort to you but 4 1/2 yeas ago I was diagnosed with GCA and PMR. I reduced my high dose of prednisone either 60 or 80 mg. very slowly over 4 years. Recently both diseases returned after 6 months off prednisone. I am now back up at 80 as I had 6 visual disturbances over a matter of days. I have moved from San Francisco and now live in Salt Lake City. Finally I have an absolutely wonderful team working together on this problem. I have a GP, an ophthalmologist/surgeon, a neurologist and a rheumatologist. Very little was known of the disease in San Francisco the population being predominately Asian, however the population of Salt Lake City is predominantly Scandinavian/European mix. I am British with I guess some Scandinavian history. I am so relieved to know that people have some knowledge and really care here. It is going to be another slow long haul. Please try not to get too discouraged, you will eventually get on top of it. I am now 80 and still work full time. I feel very blessed to be able to do so. This really is a letter of encouragement to you, take it slowly get on top of it quickly. I am a very vain person and am quickly losing my slim figure and becoming like one of those cherubic reubenesque paintings. but I will get rid of it again before I turn 100.!!! Hang in there and make your life as beautiful as possible. My priorities are a glass of good wine, candles and flowers. They make all the difference.!! God Bless you on your journey. Delia

Missus8351 month ago

Same. Was only on 60 mg for 2 weeks (since Jan 21/23) and Rheumy wanted me to deduce to 50 mg. starting last Tuesday. Reduced to 55 mg. and all pain returned. Now back up to 60 mg for the last 4-5 days, but not all head pain has gone. What was seemingly "under control" has not yet kicked back in. Tried twice to be seen at ER, but to no avail. Can't get in touch with the unreachable Rheumy. GP is on vacation til next week. Staying at 60 mg. until I can be seen by someone. I'm so sorry you're going through this; saying "you are not alone" is little consolation.