My GPA story

I've been rather along time getting round to posting my introduction. I was diagnosed in April 2018 and found this forum soon afterwards but didn't feel able to tell my story until now.
Reading other stories I definitely think I have been very fortunate to have been diagnosed very early.

I am a 58 year old married mum of two living in South Wales in the UK. I work for the local parks department and when I came down with a flu type bug in February 2018 and was off work for just over a week I thought nothing of it. After returning to work I seemed to have strange symptoms week after week. Aching muscles, stiff neck, blocked sinuses, confusing cough and constant headache.. I didn't go to the GP for a few weeks thinking I'd probably be told it was a virus. After 5 weeks, coincidentally a colleague and I , both suffering from similar symptoms, both went to our doctors on the same day. The following day we realised we had both been prescribed the same decongestant and told we were at the tail end of a nasty virus. My colleagues problems were resolved, but I started to get ear acne so went back to the doctor a week later and was given antibiotics. That's when I thought ' Great - things will get better from now' little realising that was the start of my new normal.

The next day I woke to find my right eye was bloodshot, half my face had swollen up and I had half a sore throat - all the on right hand side. I called the GP and by the end of the week, after blood tests and appointments, I was in the referral unit at our local A and E hospital being tested for possible sinus infection. They concluded it was viral, by this time I had swellings in my legs, wrists and two bloodshot eyes (diagnosed as viral conjunctivitis). I was given a really strong antibiotic (the fourth different one in the space of.a week) and sent home. The puzzle though to everyone was a CRP of 300 which they couldn't explain. After the weekend I contacted the GP again. I was waking up drenched in sweat at night and dosing up on paracetamol and ibuprofen just to get relief from my headache. I was sent for a further blood test which showed CRP at 320 and my GP then called at 9pm at night asking me to come into the surgery the following morning. By chance they had a trainee GP in the practice with an interest in Rheumatology. I saw her on the Friday morning and by the following Tuesday I was in the Rheumatology Department inthe University Hospital of Wales in Cardiff.

It was about 4 weeks from having gone to the GP to getting to see a consultant Rheumatologist and 5 weeks to diagnosis with GPA. It had affected my kidneys sinuses and the swelling showed it was quite widespread but thankfully nothing in my lungs or heart.

The rest of my story I suppose is more straightforward ( as far as this audience is concerned!). I was put straight on to 60 mg of prednisolone and started the long taper after 3 weeks. My symptoms went fairly quickly although the kidneys and sinuses took most of the summer to settle. I was given my first dose of Rituximab last summer,. It took about 12 weeks to really do anything but after 7 months off ( mostly high as a kite on Prednisolone) I returned to work on short hours last November. My second round of Rituximab was last January and I completed the third round in July, with Prednisolone down to 2 mg a day.

My work colleagues and employer have been really supportive. I seem to be having a bit of a reaction to the Rituximab this time round. Fatigue and insomnia ( strangely fatigue first then insomnia - not a good mix) but as for the GPA I'm symptom free at the present. My ENT consultant recommended the sinus rinsing every day and four times a day if I have a cold so I do that religiously. So far I've steered clear of cold seven though I work in an open plan office. I am so grateful that my GP was so on the ball right at the start of all of this.

I have a younger brother who has had Chrohns Disease since he was 15 so I've always been aware of autoimmune disorders but never thought it would be me! This forum has been so helpful over the past 14+ months and I wanted to thank you all for your openness and honesty in your posts.
Rosie

Hi @Rosie,

Welcome to the Forum.

You didn’t mention when you had your latest rituximab. If it’s been recently, you may be reacting to the drug cocktail that goes with it — a large dose of steroid (solumedrol) and benadryl). The evening after my infusion, I’m pretty wakeful and the next day, I’m a bit tired. Usually feel better by 48 hours post infusion.

Hi Pete, I had the last dose about a week and a half ago - last week in July. As you say the drug cocktail always seems to knock me out anyway for a couple of days - but this last one (the second infusion of the two) has completely wiped me out much longer. It's the first one they've speeded up (2 and a half hours instead of 5) so that may be why - but doesn't explain the insomnia. I had that most of last summer when I was on a much higher dose of Prednisolone, but it's not been a problem more recently so it's come as a bit of a shock! However its also the first time I've had the infusions when I've been working full time so that may also be an issue.

Best wishes

Rosie

Welcome Rosie,
So glad you found us. Keep checking in. It is the best way to stay informed.
It took me over a year of having been diagnosed to find this site. Only three years ago the things you read on the internet were terrifying. We are coming right along.
I use a machine called Sinu Pulse for nasal rinses. It is wonderful and so much easier.
I also wear clear plastic gloves when shopping, avoids every germ that touched the cart. Another thing I stay away from are buffets, not just the food but imagine how many people have touched those serving utensils. Your doctor is right when he said to avoid colds. In my case that is where all the trouble starts. Some people use a gel inside their nose when they feel they will be exposed.
I was never a germafobe, but now I am learning a few tricks. You will figure out what works for you.
Be well.
Masha

Hi Masha, Thank you so much for your helpful advice. I've never been a germaphobe either so I'm finding that part quite hard. My employers have been really good and supplied me with hand gel and wipes for the office and all my work colleagues are ware motto come near me if they have colds. It's also mean nearly everyone went for a flu jab last autumn too! Strangely after the flu in 2017/18 when many of us caught the bug I had, two of in the office ended up with an auto immune condition ( out of about 30 in the office). Possibly no connection ( my colleague has chronic fatigue syndrome) but quite a wake up call for our employer!
Best wishes, Rosie

Welcome to the family, Rosie. Thank you for sharing your journey. Thank God they diagnosed you on time.

As for rtx, there is a protocol of how it should be delievered, first and second time. 2 hours and half is way too fast. The protocol was made in order to minimize side effects and reactions.

Please insist next time that they will give it to you exactly according to the protocol.

How are you feeling so far ?

Hi AlysiaThank you for your reply. I am feeling a bit better after 3 weeks of insomnia. I have let the clinic know about the side effects. This was my third round and ive not had side effects before but hopefully next time ( in March) they will slow it down. I know I' ve been very fortunate to have had diagnosis and treatment so promptly so in the bigger picture 3 weeks of insomnia seems a fairly small thing to cope with! I'll let you know how things go next time in 6 months!
Best wishes
Rosie

Hi Rosie,
I’m sad that you were diagnosed & sick but so very happy you found this forum. I have found the wonderful people here open, honest & full of information. I have had this disease for a long time & have been able to have a wonderful life and I hope you do too!
Natty


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