I have posted here before but for those who have not seen the posts, I was diagnosed with GCA in Apr. 2021 &was on prednisone until end of this Nov. when I had tapered off. Successfully so I thought!
On day 4 flare started, had blood test & CPR up to almost 30! Rheumy put me back on pred! Said to go to 5mg, then 2.5, then to 1mg & see him in March.Felt the flare the whole month of Dec., not happy & googled endlessly to get some answers, then came across the video below.
I strongly recommend it! First doctor I have across who has done a study on lowering the CRP effectively. It is a smoothie you can make easily & tastes nice! I did this for 9 days, had a blood test last week & my CRP is 1.8 (down from 30)
I do have to point out that the CRP referred to in the study is hs-CRP which is the CRP related to cardiac events and not the ordinary CRP monitored in PMR etc.
Thank you for pointing that out to me. I didn't know about the hs-CPR & am wondering why the doc didn't schedule me for that test. GCA is a vasculitis & can lead to heart problems, right?
I did the math on converting it & if it is correct, I would clock in at 17.48 (high risk).
I will continue drinking my smoothie! & when I talk to my doc, have some questions for him.
As far as I know, the hs-CRP is only of value in a patient with a normal range CRP. If the CRP is raised because of other inflammation it swamps the increase in hs-CRP so you can't see this indicator of potential cardiovascular disease.
I take my steroids with a variation of this smoothie (spinach, cucumber, half an avocado, Greek yogurt, teaspoon of ground flaxseeds, mint, almond milk). It tastes delicious and I feel better for having it. After lunch I have a different one (banana, kefir, ginger, almond milk - yesterday I added cherries). I have also added VSL3 to this one over the last couple of months. Delicious. Whether these are helping is debatable but my CRP has been 1 for the last three blood tests over three months.
It's great that your blood tests are in the normal range & I hope it continues!
The first yr of my GCA, I had a blood test only every 3 months & after the initial high CRP upon diagnosis, it was always in the normal range.
I followed a very strict anti-inflammatory diet & took a variety of supplements suggested by my naturopath. So it was similar to what you are doing, the only exception, no milk products, instead of Gr. yogourt I would have coconut-based yogourt. I do believe that it helped because I never had weight gain like many people complain of. Of course, I had a slew of other side effects.
I desperately want to get off the prednisone & will go back to total anti-inflammatory diet, plus the LIFE smoothie.
I have followed mostly an anti inflammatory diet but still have the odd treat. I’ve not been too anal about it and have only gained half a stone out of the full stone lost prior to diagnosis. Happy with my current weight. I do feel better on the change of diet. I have had other side effects from the prednisolone which have been awful, at times actually unbearable. I have had good care from our NHS. The system is under such strain but the staff within it are amazing and I wouldn’t be in this position of steadily moving forward without the wonderful people supporting me, from regular review of my health and medication with my GP, six monthly checks with my optometrist (I do pay £9 pcm for all eye checks, scans, photos, a sort of Denplan) and regular reviews with the rheumatologist or a member of her team. After the first two face to face appointments, they have been via telephone call following blood tests but it’s all worked smoothly and I have been treated well. I know it’s patchy across the country but God ❤️ our NHS. What an amazing altruistic post war gift to the country. I know changes probably need to be made for the 21st century but I had a narrow escape from blindness, started treatment immediately and not had to pay a penny. So grateful
Here in Canada, even though we have free healthcare, our system is barely working. Hospitals overcrowded, long wait for appointments, lacking hospital staff, nurses overworked etc. I'm just grateful that the ER doctor who diagnosed me, was on the ball & so prevented vision loss. She did mention that very few doctors know how to diagnose GCA & I can see that from the many people who have posted on fb & were not properly cared for.
It’s been horrific this winter, especially in A & E. I really don’t know how staff have managed. It is still there but I fear for the future. Even the evening when I was diagnosed last summer I saw the busyness and commented to my husband that staff looked on their knees. The doctor who diagnosed me should have been on leave but came in that day to cover for staff sickness. I was lucky. I had a query a week later and he took 15 mins out of a busy eye casualty department to speak to me on the phone. The patience, focus on the patient in hand, so impressive.
One daughter is an ACP in the ED (effectively a junior doctor) and the other is a nurse in endoscopy. The nurse works a 3 or 4 day week in the NHS (10+ hour shifts)and works supply at weekends for clinics set up to deal with the backlog since Covid when they all were sent to Covid ICU so is regularly working 50 hour weeks. A cousin in the UK said to me the other day that I shouldn't believe what I see in the media as they are exaggerating since her son's partner's mum fell in M&S and hit her head just before xmas and her experience was fine - seen, MRI'd patched up and discharged with minimal wait. I told the ED one - her response was unprintable! She is absolutely knackered. She had a u/s on Tuesday, has a 6cm ovarian cyst but if she is referred to gynae - it will be a 2 year wait. Unless it gets to be an emergency and her life is at risk.
It is - but here isn't anything like as bad as the UK and our regional government realises (now at least) that recruitment and retention is crucial. We have BIG problems - they are supposed to be bilingual, speaking both German and Italian so the pool for recruitment is greatly reduced.
As for them both being in the healthcare field - was always likely, dad was an HCP at consultant level and I worked in the field for years too. The ED one has a stepson who has also just qualified as a nurse and the other grandson is training as a pharmacist. His father is a paramedic! Sometimes I ask myself what we did to them ...
I saw news footage last night of a hospital that was under so much pressure that overspill from its clogged up A and E was so great that patients in wheelchairs were put among nurses’ 💕work stations until they could be seen 😩.
You must be so proud of your daughters. In the case of the one with the cyst- no perks of the job for her!
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Light at the end of tunnel
Something to look forward to. Light at the end of the tunnel
GCA little light at the end of the tunnel !
Light at the end of a long tunnel
GCA flare, tongue claudication
