Please advise..

[Want_to_know]

Probably finding this community in time is going to be a life-changer for me! Here goes my story:

I am on 40 mg prednisolon for 'suspected' GCA since 28 March, the day I decided to make an A& E visit due to a feeling of extreme pressure in my head, fatigue, aching upper arm and leg muscles, stiff neck and back with a very strong feeling of being unwell. ESR was 32. Doctor ordered a CT scan and temporal biopsy and referred to rheumy. Scan is clear. Biopsy results not come yet. Saw the rheumatologist (of worst kind) on 2nd April, who did no further tests, and wanted me to reduce/stop steroids without even waiting for biopsy results. he declared I was too young for GCA ( I am 57) and the immense relief I am feeling after being on steroids is that anybody would feel when given so high dose. But I refused to reduce as I would not risk my eyesight and asked for a new rheumy for 2nd opinion. I will see the new one on 21st April. By that time I would have taken the high dose for 25 days. I have a few questions and would appreciate your advice, but let me first give you my "health issues" history.

My problems started in May -June 2014 or may be even earlier that year when my whole body will get stiff in the mornings. There was pain but not unbearable kind. Stiffness will get better when I start moving around. And it will stay ok during the days. It was never so bad that I needed someone's help to manage. In sept 2014, while on a walk I felt pain in my hip area, back of thighs and legs and also some burning in my thighs. I noted that my muscles are sore, but I did not pay much attention to it, continued as usual, full- time work and some walking. In mid-sept I caught a bad cough on a trip to Asia, which remained with me 3-4 weeks. Mid- October I started getting very stiff and achy shoulders, neck and back. Also noticed that my upper right arm muscle become very sore after I roll my bag just 50 meters when travelling or after cleaning a room. but soon discovered that muscles are painfull in left arms well, in fact pain is worse on the left side. Also had wierd painfull spots all over the body, but nothing visible outside. I developed a very bad taste in my mouth and lost my sense of smell sometime during sept-October. Also started burning in palms, feet, pricks and needles in lower legs and a cold sensation feeling in legs. This is what I described for the GP when I first saw her in October.also mentioned smell loss and foul taste, and that I have achy muscles. She dismissed it as stress but still agreed to take blood tests as I had had cough. ESR was 58 that she assigned to cough. A second ESR in nov was < 17 and after that she stopped listening to my neurological or muscle problems and advised me to see a physiotherapist. I asked her to check if my neurological problems could be due to vit D deficiency ( my husband showed a value on the lower end of the range and was experiencing similar burning sensation in feet). The blood sample was taken 15 days after I started on vit. D 5000 IU/ day) and showed a value of 65 which is less than the lower end of the range. I don't know when exactly it started but I was now having very heavy feeling in the head, was dizzy, blurry vision, poor balance and a feeling of fainting for a second or two. In January I had 3 business trips and in between noted that my scalp was tender at certain spots. Also pressure on the head increased, and other symptoms aggravated, sharp pain that remains for a few seconds started all over in head. Called the GP on 4 March to tell her that this weird head pressure has not left me whole winter, she suggested may be I have developed some other allergies ( I am pollen allergic) and that I should be checked for it and then she went for her holidays.

On 27 March I think I saw double for a second with my right eye and that brought me to A&E and am on prednisolon as described above. Would like to add that my father was diagnosed with PMR 2years ago at the age of 82 And my younger sister had vasculitis at the age of 35 yrs. seems like we have family history of auto-immune diseases, that is what makes me so sure about my self-diagnosis plus the fact 80% pain reduction within first 3-4 days of taking steroids , immense relieve from head pressure though it took 2 weeks to feel that it is away from all the spots. my Qs is:

is taste, smell, ringing in ears ( that I have a whole lot of but have not mentioned above), parasthesia a common symptom? Has anyone with GCA experienced these? Do they ever go away? Will I ever get my sense of smell, taste back?

I keep wondering if by refusing to stop steroids I did the right thing?

Is blurry vision restored with 2 weeks of steroid treatment or does it take longer time.?

Thanks to everybody on this site who are trying to help others by sharing their experiences! Will be very thnkful for any advice, input you may have for me.

Also want to add that my medical history with this problem goes as far back as 2005 but that we can take some other time

[Runrig01]

Hi, I developed PMR at the age of 46 which took 14 months to diagnose. Was only on steroids for 3 months when I started showing a lot of the symptoms of GCA . I was told I was "too young", and couldn't be that unfortunate. My biopsy wasn't done till 7 months later which came back clear, which I was expecting after 10 months on steroids. Had an MRA which also didn't show anything. My symptoms were textbook. I eventually got my GP to refer me to one if the countries top experts, and my Rheumy arranged opinion from the top Professor as well. It has taken 2 years to get an agreement that I have GCA. Thankfully my vision didn't suffer, however they suspect I also have large vessel vasculitis possibly attributed to the long delay in diagnosing GCA. So no you are not "too young", I'm now 49. I would get your GP to seek 2nd opinion from someone with an interest in PMR/GCA.

It beggars belief that a Rheumy is not willing to wait for biopsy, however remember you can get a false negative result. But it should still be your clinical symptoms that you present with too. Good luck 😃, Runrig x

[Carrollee in reply to Runrig01]

Hi there guys can I just join in for a moment? Been on three weeks 15mgs pred for PMR. Warned about possibility of GCA (in general) ESR 70 at start then down to 20 after 6 doses of pred. Feel pretty good and grateful. Felt so ill etc as pain fatigue stiffness increased before diagnosis. My point is obviously we have to be aware of GCA but there seems to be so many symptoms to keep an eye on (sorry no pun intended) when should you start to really panick. Am due to start reducing to 12.5 in a wk although am just getting over a chesty cough and a mild shingles attack so may have to delay it. I would rather come down in 1mgs from all that I read. Don't want to get stressed but also don't want to get too blasé about it either. Had a variety of head pain symptoms long before PMR diagnosis but nothing much to speak of in last couple of months just niggles in all the right/wrong places! although exhausted at mo feel sooo much better. I have ME but know how to deal with that and had Graves Disease years ago (auto immune) so am used to looking out for stuff. Thanking you all in advance and good luck to all whether just starting out on this journey or many years down the line. Take care cc oh I am 59!

[chockybuttons]

I get annoyed when 'age' stops medical professionals diagnosing possible illnesses. To be fair to my doc, she immediately thought it was GCA, even though I am 48, she didn't say it couldn't be. I was diagnosed in January this year, though didn't have a biopsy or referred to rheumatologist. Sorry I can't help you much.

[DorsetLady PMRGCAuk volunteer]

hi there , sorry to hear about your long list of problems, but you are not alone! I recognise most of your symptoms, although not all. It took me 18 months to get diagnosed correctly, all that time a "frozen shoulder" was suspected. Like you, one side was worse than the other, and still is- at times.

As your GP did finally diagnose GCA I'm wondering why she didn't start you on an even higher dose as you had so many known symptoms for that length of time. And don't get me started on rheumys, I don't think I've ever met such an obnoxious man as the one I was referred to. needless to say I've never been back!

I never lost my sense of smell, taste etc, nor had ringing in ears, but if the vessels are in your head are affected then who knows. I would be slightly concerned about blurred vision though, think you need to get it checked by optician.

Don't want to worry you unduly, but mine blurred vision didn't come and go like some people, it just came, got worse over a few day, and then bang - vision gone in right eye. I must stress though at that stage I was not on Pred as I hadn't been diagnosed.

As you are already on Pred your sight should be protected, but please get things checked to ensure you are on a high enough dose. If you are still getting aches and pains it would indicate you are not. However, the Pred itself can cause vision blurriness in some people. Not easy to know what to do is it? Good luck, DL

[Hidden]

Hello

Wow what can I say! Your history and symptoms are almost identical to mine! I was diagnosed on the 22nd Dec with PMR until that time I had never heard of GCA or PMR.

Prior to the 22nd Dec 2014

I had been to my GP referred to Neurologist, MRI scan, physiotherapy, put on emergency op list for a spinal Keyhole procedure on lower lumbar got up to the last hurdle when the surgeon said it wasn't needed!!

On that fateful day the 22nd Dec I was in total despair. I could no longer turn myself in bed, I was in pain indescribable, I couldn't walk, or sit, not dress myself,not lift my arms to comb my hair, I lost half a stone in a couple of days, I had difficulty swallowing, my scalp was sore, pressure in the roof of my mouth, burning sensations in my arms, legs, feet and generally all my symptoms that I had been having since 2005 and some may have been earlier, They all raged through my body simultaneously!

My husband took me to the surgery I was in tears! PMR says my GP and took bloods to confirm it. Warned me about GCA and arranged further tests the next day. Sent me home with prednisilone 20mg. Within a few hours I was a new person! I could turn in bed that night the first time in months.

Fortunately the GCA has not materialised. The blood tests on the crp and esr confirmed the PMR.

My GP was following the NHS guidelines however and tried to reduce the prednisilone too fast and I got a flare that meant I had to start all over again.

This forum is a blessing and it is reassuring to know there is light at the end of a very harrowing dark tunnel.

I have printed off information from this site and taken to my GP. He says he would not necessarily agree with some of the research and slower reduction of prednisilone

But has agreed to my following the slow approach. He is concerned with the possible diabetes and Cushing syndrome. I put on about 7lbs but I am now concentrating on reducing my carbs and it seems to be working.

I now take one day at a time and some days are easier than others but I never want to go back to pre 22nd Dec 2014!

I do hope that my story will help to reassure you.

[PMRpro Ambassador]

After 5 years of hearing such stories it all sounds very familiar to me.

About 2 years ago there was a post mortem done on a 37-year old man in South Wales who had died of a stroke. The pathologist's finding were that he had died of a stroke probably due to undiagnosed GCA - confirmed by biopsy. Pathologists know it all but it is too late.

Fifty-seven is NOT too young for GCA and your rheumatologist was merely showing his ignorance and arrogance. There is a form of GCA found in young patients and the slightly more common sort found in our ages. I would be very pleased if one of these sceptic rheumies would explain to me how it can happen in 20-40 year olds and then again in 60+ year olds and not in the interim 20 years. And anyway, the guidelines all now say "over 50".

[happynewyear]

Hi,

I too am so glad of the forum and the internet in general. I have been 'ill' since 2000 that's 15 yrs of backwards & forwards to the Dr's. I am 61 now. They could never find anything 'wrong' with me except my esr was 'slightly raised' I ached all over my legs hips and lower back were the worst.

(I was diagnosed with a frozen shoulder when I was around 30 yrs old)

In 2003 approx. I turned my head suddenly to look at my dog in the back of the car & felt my neck 'go' It ached constantly so did my shoulders ...but I had been prescribed fosomax (ibandric acid) sorry if spellings are not correct. so I googled fosomax to find that the side effects could be a 'stiff neck' ..so I stopped taking them. They had been prescribed because a dexa scan revealed osteopenia.

I was under the care of the womens hospital at this stage due to a 'horrendous menopause' night sweats fevers aching joints terrible fatigue brain fog no concerntration no energy pain, pain every day every night. I was on this HRT that HRT I had a colonoscopy a this oscopy you name I had it ... Some Dr's & nurses were genuinely kind & helpful but others looked at me as though I were a hyperchondriac !!!

I had arrived at the HRT specialist clinic due to a Rheumotologist who had prodded & poked at me & declared osteoarthritis in hips & going into the menopause so take HRT to replace the lost oestrogen ...that's what's causing all your joint pains ! to add insult to injury I had paid privately for the initial appointment with this man who was a very respected & highly thought of surgeon/rheumy. My next & last appt with him was at the nhs clinic when I had to remind him he'd seen me 3 mths before privately.

My lovely (now long retired) lady G.P had sent me to him after declaring I think you have fibromyalgia but we'll get you checked over by the 'Rheumaticky man' (her words bless) I had gone to her because I had had a terrible scare ...I had knelt down to my pan cupboard only to find I COULD NOT GET UP OFF THE FLOOR my muscles did not have the power in them... This Rheumy at initial appt PROMISED ME he would get to the bottom of why I could not get up off the floor and at that time I was around 46 I am trying to 'draw' a picture of my path through this awful, dreadful insidious illness so please bear with me ..don't get bored ! ....by the way I am still not diagnosed at this present moment in time I am 'under investigation for PMR !!!

I have just come onto to the forum & your post on GCA caught my eye (no pun intended ! In answer to your questions I can only tell you my experience ..

I have been taking 20 mg prednisolone I'm now on day 13 & I can not believe how I no longer have the 'blurry vision' that I have had to contend with for the last 4-5 yrs it's like I've got 'a new pair of eyes' they are not mine ! I am so very, very happy but also so very scared because I have googled that pred is the 'devils drug' and can cause blurry eyes !!!

By the way within hours of taking the first dose I felt immediate improvement in mobility & pain. It had gotten where I could barely walk, turn over in bed, couldn't sleep because of being in so much pain. For the last 15 years I have just very very slowly got so very, very ill MORE RESEARCH INTO PMR & GCA NEEDS TO BE DONE it is NOT AN OLD LADY'S DISEASE I just feel so strongly about how this awful illness has robbed me of the past 15 years. In just 13 days my brain is back working, my legs work better I FEEL BETTER !!!! Sorry folks for the rant & hope I've not gone on too long, side affect of the pred I have only had 4 hours sleep last night but I don't care it's a lovely day here today the sun is shining the birds are singing & I feel alive for the first time in years !