Saw the Rheumatologist last week and my confusion abounds. It didn’t help that the original one in April 2014 told me that in 2 years I would be confused followed by the beginning of the year that at the end of this year I would no longer require a Rheumatologist.
My CRP leaped to 38 with minimal side effects, vague headache, a bit of stiffness so this newish one says d go up to 20 mgms followed by I could go up the 40 mgms, so I did. After 4 days CRP is 4 and ESR 7 He said I could now taper down until I get to 10 then 7.5 and then check to see if my adrenals kick in.
I was also told at the start that it burned itself out, he is now saying it doesn’t. I foolishly thought that the greatest risk of blindness/ stroke was at the beginning but apparently not. I asked about how we would know that these raised blood levels were due to GCA and not any other infection and he said we didn’t. It does seem to me and also my GP husband that it’s all a bit hit and miss. We think we know what’s going on then the information changes. The first Roomy I had was over optimistic and the latest, laid back and almost horizontal, has made me confused. In the meantime, i suspect he looks at me and thinks almost 77 year old woman, lucky to be here and he is probably right.
I am on 30 from 4.5 which is depressing enough but I will be reducing to 25 on Thursday
Ymlean, ( Forward )
Written by
EdithWales
To view profiles and participate in discussions please or .
Oh Edith Wales! I think confused was the right word after all! Never let anyone try to make you feel less valuable because of age and gender!!😡 You don't seem to be supported as robustly as one would wish. I am glad your GP husband can roll his eyes with you!
GCA does go away/ burn itself out eventually or I am under a complete misapprehension about these diseases. I do know that flares are still dangerous for GCA and the inflammation must be kept down. Perhaps your Rheumie is not used to such a knowledgeable patient.
I am sorry you've had such a set back. We certainly learn the virtue of patience during this disease. I would be inclined to follow one of the tapering programmed pinned on this website, especially at 15/10 mgs.
Please let us know how you get on. Don't be down about it. There is nothing "Old fool" about you, more the wise woman. 🌹
Like PMR, an episode of GCA does usually burn out and go into remission. The Mayo clinic does actually use the word "cure" for GCA though not for PMR. There is no way to tell - just like there is no way to diagnose them with total certainty unless you have a postive TAB. But, like PMR, the potential remains for the autoimmune cause to reawaken and set off again. Even if not as GCA, then possibly as PMR. I have a friend who had GCA in her late 40s/early 50s, she was off pred in 2 years or so and 4 years later developed all the symptoms of PMR.
You know - I think I like the sound of this new chappie! AND he tells the truth. And to a small extent - you are pretty lucky, you've just been off on a jolly haven't you? Despite GCA. There are a lot of older patients who remain very ill with GCA for years - the first person I ever knew with it, some 30 years ago, had a really hard time with it.
But yes - you are both quite right, it is all a bit hit or miss - and that starts with whether you get a better or worse rheumy!
But you are a wonderful lady who happens to have reached 77 this year - and that is not old, that is mature
You are right. He is totally honest, based in South Wales. You are also right, my life is a constant jolly, Tenerife, South Africa, the US and Majorca on the yacht again and Portugal next year. Other than being covered in bruises and skin like a snake, I have no other symptoms. Just a moaning Minnie. I am always saying the anti dote to self pity is gratitude, time to practice what I preach. Thank you for getting me out of my Pred soaked senseless.
Like you I thought that the greatest risk of blindness has to be at the beginning. My CRP was 189 and ESR 120, I was so ill with an intractable headache, neck and shoulder pain with arms so weak I couldn’t move myself up the bed.
The flares I have had subsequently occurred when my CRP was 38 and ESR 35 Logically the risk has to diminish when there is less inflammation although I appreciate there is nothing logical about this. disease.
I am now on 30 mgms with a delightful puffy face but other than that I am fine .
Off to Birmingham for lunch with friends , just need to get on with it
Are you in New Zealand yet?
Despite my passion for Rugby, I don’t think I could face traveling there, Australia two years ago wiped us both out.
Flights are long, but as I said I do spoil myself and fly Business - don’t think I could do it otherwise! Still takes a few days to get into feeling right though.
Good. Business Class is like the difference between BUPA and the NHS. I had a life time of traveling with my knees under my neck, if you can afford it, its the only way.
I hope you are enjoying being with your family and the weather is better.🥂🍾
Good. Business Class is like the difference between BUPA and the NHS. I had a life time of traveling with my knees under my neck, if you can afford it, its the only way.
I hope you are enjoying being with your family and the weather is better.🥂🍾
Hi Edith...just re bruising; I am very fair skinned ( flame redhead once upon a time tho you wouldn’t know it these days!) and I’ve have always bruised really easily. My rheumy recommended vitamin C for skin. I’ve been taking 2 capsules a day of 100% natural vit C since GCA diagnosis in March. I seem to have had less bruising than ever before and I’m always bumping into things...I rush around rather carelessly! Might be worth a try? Best wishes Judy
Unfortunately not all doctors, whether GPs or Rheumies seem to read the same information, or even if they do they don’t all interpret it the same way.
The greatest risk of sight loss is obviously at the beginning, especially if the GCA has been in your system for some time. From my personal experience my shoulders were very painful for a long time before the head problems kicked in (at least 14-15months), so I assumed (maybe completely wrong, and if I am someone will advise I’m sure) that it was your bigger blood vessels that were affected first, and then if not treated the inflammation moved to your smaller vessels (in GCA in the head).
In GCA once sufficient Pred has been taken then in theory provided you remain at a level that controls your inflammation your sight should be protected. I think the problem may arise if someone has PMR and is on a lower dose, then if GCA joins in obviously the Pred is not at a high enough level to protect sight.
FYI my GCA went into remission after 5 &half years, that was about 20 months ago.- and still looking good I’m pleased to say. Celtic and jinasc are even longer “survivors” so hang on in there!
I've been told my GCA is over. Diagnosed last December, not sure at which point it went into remission. It may return, who knows, but I will know if it does.
Are you still on pred? If so - no-one can know. The only true test is getting off pred without a return of symptoms. You may be able to do an ultrasound of the accessible arteries and them be apparently clear - but you can't look everywhere.
Me too. I only use I Pad or phone so I don’t know if it’s better on the main computer. I suppose it’s a relatively new site which is evolving I just wish I knew more about computers
Yes, still on prednisone, reducing 1mg per month. Now on 5mg. Doctor and rheumatologist still keep beady eyes on the situation, ready to pounce if anything hasn't gone to their predictions of the whole thing lasting up to 2 years - that includes the tapering which is the worst part. Both are thrilled that my system has shown such positive response. It's all magic and mystery to me, but like what they say, believing it too helps.
That’s sounds good. I too was a model patient, down to 3 mgms at 1 year 10 months and then flared. The most important thing is that you are symptom free and your blood levels are normal.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
GCA?
Recently diagnosed with GCA
Is it GCA or not that is the question 
