SIXTEEN MONTHS IN

On April 5th 2011 at 5.30 I awoke with a really bad headache my right eye was watering and my face felt inflamed I went right away to A&E. They gave me drops told me to take parcetomol and to come back if it had not cleared in 48hours. I was back on the morning of the 7th April they put a pach over my eye and told me to come to clinic in the afternoon. I returned to the clinic, the nurse took my pad off and I had gone blind, they called my husband and the all started rushing around they injected into the eye right away, admitted me and gave me 5 lots of drops every two hours. Thankfully my eye sight started to return in the evening. They let me come home after two days, my husband took 2 weeks off work and did the drops every two hours. I attend the hospital every week and the diagnosed me with Uveitis/Iritis, the lens closes when inflamed, you can not stand bright lights, it only comes in one eye!

In late May went on a Cruise with my sisters & their hubbies, I continued with drops on lower dose, so felt quite rested. Returned to hospital on Tuesday 17th June to be told I had uveitis /Iritis in both eyes, drops were increased and they took a blood test. I was to return on Friday 19th when the specialist would see me. It was Whit Friday so we walked in the morning are plan was go to the hospital and return for the brass bands in evening. As soon as the Specailist saw me he said after examine my eyes my blood was wrong!! He said it was a medical matter so off I went to see the Medics. They told me my kidneys were only working 20 per cent & 79 per cent of infection in my body & they thought I had GCA & promised me a bi-op, they admitted me, shoved & 20mgs of steroids in my hand with a digestive biscuit & a drink. On Saturday morning I awoke to see better than I have every seen & no silent headache. (you know the kind I mean just under the scalp like a dull ache)

Went for my Bi-op on Thursday, you are all done out to go into theatre, they freezed the side of my left temple, as they went in my eye fized like a firework, they stopped then they carried on. When I was in recovery my whole left side went dead & was very cold. (don't every bother having one of these because the infection in the artery can occur say, every 10 inches and when they go in they may only take only the good bit out)

I went home & by Monday I crawled in the doctors surgery I began to shake, they thought I had had a stroke at first then the weeks and months followed. Could not walk properly, left side of body not functioning, suffling could not walk properly, stood up fell down, stammering, hair loss, put 3 stone on, hot sweats, moon face, swollen neck could not lift neck properly, skin gone all patche, facial down on face, drooping eye lids, de formed shoulder, aching limbs, swollen ankles, could not write, forgetfull, no confidence, worry about minor things, 22 tablets a day plus drops. Had to pay to see haematologist Specialist & Kidney Specialist as there was a 3 month wait & nobody was actually saying it GCA, Luptus, Polyartrito Nordosise, Brain Tumour & Behelf were all mentioned. I changed my Rheumatologist they all liaised with each other & my GP conclusion GCA.

In June I seemed to start feeling better, I have gone to Weight Watchers, I go on the Wi every day 12 mins of yoga & balance. Try a small walk up the village (no stick now) I increase my Amtriptyline & I dont seem to shake as much. Blood pressure tablets, Aspirin, Pantoprazole, Pain Patch, paracetamol & 4mg of steroids alll of these keep me going and most of all I can SEE!!

Hope this has not been to long and boring & apologise for any mistakes but it has been a great achievement for me to put this to-gether.

9 Replies

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  • NOOOOO, Not boring, but real scarey! Big time. I've thought, many times. This illness, which can attack many different parts of our bodies, is so misunderstood, it's hard to come to terms with what some of us might have to go through to recover. Some times I question advice that I get from my rheumy and my GP. Thankyou so much Mojo for your blow by blow account of your fight to hold on to your sight.

    There are times when PMR/GCA are misunderstood and undiagnosed. Lets face it. they are probabley the same condition.

    You are so brave, Pats.

  • Thanks Pats, You make me feel more confident. After reading lots of Bloggs etc no body said they had actually lost their sight, so I thought it was important to say!

    I also think PMA & GCA run hand in hand. Nite nite Mojo.

  • Oh my lord........................I don't know what to say but you poor poor woman. So glad they got there in the end with diagnosis but what you had to endure sounds horrendous.

    GCA scares the hell out of me, the PMR is bad enough.

    Keep gaining your strength and rest up and most of all keep smiling or we will cry.

    Take care Sue

  • Sadly Mojo people do go blind as a resut of GCA. It has been estimated 3000 people a year lose their sight in the UK because of it. The subject was raised in the House of Lords las year - here is the link for it.

    pmrgcauk.com/documents/PMRH...

    I would not wish PMR on anyone, but at least it makes us aware of the possibility of GCA & what to look for & to take ourselves to A & E pronto. Similarly with steroids, side effects for some are awful, but they can save our sight & in my case, means I am able to walk again & not reliant on husband to get me out of bed etc.

    Margaret

  • Poor you - you have had an awful time. So glad things seem to be improving.

    I just have PMR but GCA scares the hell out of me too - one thing I am a bit worried about regarding our trip to Italy is that if anything flares up, will I be able to make myself understood and will they appreciate the significance.

    Hope you continue to improve.

    And don't apologise for "going on" - it is interesting to read other people's stories, and I don't think you "went on" as long as I did on my first blog!

    Take care

    Helen

  • Scary story, mojo, and thanks for raising the subject. I am shocked by the ongoing misdiagnoses you were subjected to. My GP, when he diagnosed PMR, made me aware of GCA and checked my temples, asked about headaches, my eyesight etc. Whenever I have even a mild headache I get the heeby-jeebies!

    Helen, if you are worried about flare-ups on your trip to Italy, ask your GP if you can take a supply of pred with you. You should be experienced enough in handling your condition to be able to self-prescribe if things suddenly take a turn for the worse. I would.

  • Mojo

    Certainly not a "long and boring" post but such a shocking read, even for someone like me who has had both PMR and GCA, the first remaining undiagnosed for a year leading to months in bed and wheelchair, then GCA taking almost a month and 4 GPs on 4 separate occasions before diagnosis. My sole kidney function was also declining. Knowing how ill I felt during that month and really believing I had reached the end of my days, I really don't know how the h--l you coped with what you went through for so very many months. GCA must have been raging in your whole bdy. My heart goes out to you.

    I think your story should be displayed in every GP surgery and rheumatology department in the country!

    Well done to you for all that you have achieved and I hope you continue to get stronger day by day.

  • Mojo

    You need to read up on the Treatment & Diagnosis of GCA issued by the British Society of Rheumatologists. Read very carefully and then ask for an MRI. GCA is a vasculitis illnesses and can involve other large arteries. Well done that you are down to 4mg per day after less than two years. It took me three years to get down to 10mg. Keep a supply of 60mg in a special box for emergencies.

  • Wow you poor thing I am just starting on the road of potential PMR diagnosis as GP convinced and she has already made me aware of the GCA potential which is really scary I am trying to keep strong and having done lots of research decided not to start steroids till I see rheumatologist and get confirmation. You have been very brave and your story was not too long I hope you continue to gain strength and regain control of your life. Wishing you all the very best x

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