An OMG moment with GCA!
I have suffered from PMA and then GCA for seven years now. I recently
moved and had an urgent referral from my new doctor, as I had had a relapse
due to coming off my meds before having a PET scan. The referral took
9 weeks as it was lost twice! However when I did see my new, and very
experienced consultant, I found it was well worth the wait! He was
streets, highways and byways better than any other consultant I have
met to date - and I have met a few during my seven years of illness.
He just exuded knowledge, confidence in his subject matter and very
importantly offered common sense! He spoke my language and it led to a
OMG (oh my god) moment. At one point I leapt up and grabbed his hand
to shake it firmly in appreciation. He must have wondered quite why I
was being so emotional but it's been a difficult journey!
Anyway I thought I would share some of the important points he made me
aware of. Please, at this point, may I stress that his advice was
purely for my individual case as a patient but I am sure that some of
what he offered might be of interest to others.
1. He mentioned that, at times, there was too much reliance on blood
tests and scans rather than concentration on the person's symptoms. I
have had loads of blood tests over the years and in the last five
years they have basically all been the same - which has been fine -
but I have still been very poorly!
2. If having a PET scan there is no need to come off medication - as I
was told to do - as there is a danger that you will flare - as I did -
and again that obviously leads to eyesight problems and munching
masses of prednisolone!
3. The consultant then explained that any scan would only show
inflammation below the neck as it could only measure vessels down to
the size of 4mm and above the neck vessels are at a size of 2mm.
4. Then I was surprised when we got onto the subject of drug sparing
medicine and he informed me, in his opinion, that most of these drugs
such as methotrexate didn't really make much of a difference. However
he did say that he would recommend one drug and that was leflunomide -
which I have never heard of as it had never been mentioned by any
other consultant. I have been on three drug sparing drugs and have not
been able to tolerate any of them.
5. He then further discussed the side effects of high dose
prednisolone and GCA and that the symptons could be very similar -
headaches, dizziness, tiredness - so it made it very difficult to be
aware of which is causing the problems at any given point. This I had
been saying for years particularly when I was diagnosed with GCA and the muscle pain of PMR left me and the headaches, dizziness and fatigue set in - similar side effects that pred. offer!!!
6. He did throw in the concept that there had been a study some years ago that suggested that in many cases GCA could be treated with doses no more than 20mgs. This does stimulate thought. His opinion based on his 30 years experience plus his predecessor's experience led them to belief in this fact. He felt that many consultants/doctors jump to 40/60mgs and above because of the fear of severe eye sight problems and perhaps there is an exaggeration in the amount required. Not sure what other studies there are out there on this topic?
7.Advice to me as regards my flares was, initially, just to go back
to the last level of prednisolone I had been on that made me well. Basically to avoid taking too much pred. with its side effects. If that didn't work to go 5mgs up. He informed me of the dangers of pred. particularly as regards my bones. His advice with a new patient is start at 15mg but make sure that you taper down very slowly from there. Studies apparently have shown that those who started higher but taper quicker will have more flare ups!
8. Advice as regards alendronic acid - taken to help bone strength - was that after 5 years I should have had a break from it for a year. It does have its side-effects!
9. He was unconvinced as regards the usage of aspirin due to possibilities stomach ulcers.
The visit was finished off with an injection of prednisolone which he
said would facilitate a quicker oral reduction - I was having
difficulty getting below 17 mgs. I had been at 3.5mgs before having
the scan and been told to come off my medication!
So while it was an OMG moment for myself then perhaps there might be an OIC(oh I see) one for some of you out there. I repeat again that everything above was based on my personal situation and obviously doesn't apply to everyone but there is certainly much to consider!!