nnuh.nhs.uk/news/chetan-muk...
You may be surprised at this. This is something we as patients have suspected for a long time so it is only fair to acknowledge his work confirming it!!!
The presentation of GCA can change over time. Just because a patient doesn't fit the image they have doesn't mean it isn't GCA or PMR that is resurfacing. I can only hope that patients get a better deal.
I'm glad that doctors are finally starting to actually listen to us and learn from patients. This was the rheumatologist who was absolutely adamant that GCA went away in 100 weeks, I'm sure he has learned a lot since then.
Yes…… glad he can help GCA patients though, finally.
That sounds heartfelt, Longtimer 🥺
Is it ok to DM you?
I have tried the tapering, up and down, finally a few years ago I quit trying! I’ve been on Prednisone for maybe 15 years, now at 75 , I am on 5 milligrams and that’s where I’m staying! Thankfully Prednisone hasn’t affected my bones to get any worse than they have been. My Dr. is fine with me staying on 5 milligrams indefinitely!
If I could get to 5mg, that's where I'd stay too! Currently 7mg but with Actemra - the thought of losing that is not encouraging me to return to the UK!!
Why is 5mg seemingly regarded as such a benchmark? It’s not so far from 7mg…..Is there a specific reason why 5mg is better thought of than 7mg, if you see what I mean?
It's lower. The lower the better. That is all they say. For years it has been thought at 5mg there are next to no adverse effects - more recent studies suggest it isn't that simple but if they are happy, so are we!!
Okay thanks 😊
And below that you might hit the dreaded adrenal zone - I did
I do - it starts at 6mg and 5mg isn't worth it! The PMR is still there, 7mg is fine, biceps start to protest any lower.
Sounds somewhat similar to me - albeit I don’t have the actemra. I have a GP appointment (phone of course) on Friday, I do so hope she’ll support me staying on 7mg for the time being at least 🤞
Good for you! After five years with GCA....I got to zero...big deal....I crashed one month later and I've not been the same since. I wound up with infusions on Pred for three days and 60mg a day since, just starting taper. IF I get to five...that is where I'll stay. At 84, I may stop at 10...or who knows, I may not reach it. Good for you to stick to your guns!💞
So pleased to hear there is someone the same as me. Keep struggling to get below 5. Following all the guide lines on here from our brilliant Ambassadors. Think I’ll stay on 5mg too. Just had a bad flare. All the usual pain in neck arms etc. Hope my doctor will agree. Alll the best
It’s been nice the last few years since I’ve been on 5 milligrams! I couldn’t handle what the up and down did to me, mentally and physically! At our age, why create more problems 🥰
You are so right. I keep worrying what is the right thing to do. I’m 78 should just be happy to be pain free on 5mg. PMR pro has great advice on this🥰
I've just been saying to Prof Mackie - it makes such a difference once you allow the patient to stop yoyoing. You just end up with them taking more pred but poorer QOL.
Also mentioned in latest Vasculitis newsletter -
vasculitis.org.uk/wp-conten...
As you say, he needs to think about PMR as well.
In consultancy I learnt from day 1 that all the answers to improved productivity resided in the existing staff if you knew what questions to ask and listened to their experience. The same applies to medics. You may have expert skills and knowledge but listening and observation get to the root quicker
It’s both satisfying and frustrating to read this for obvious reasons.
Definitely!
Precisely.
How was Lake Garda was it still busy with tourists?
At the weekend it was almost as busy as in summer! Friday was an Italian and Austrian public holiday - and a lot weren't using it to visit family graves which is the traditional duty! As I drove back the motorway was chocca from Bozen to Verona as the Italians headed home. Coming north seemed OK but I used the ordinary road anyway. It was lovely - quite a lot of hotels and restaurants had already closed, others were about to close on Monday after the long weekend, but on Saturday night I sat outside to eat as the restaurant was full. They had radiant heaters and it was OK.
Wow, all sounds lovely.....if that's what 7 mg, and Actemra allows you to do, keep doing it!!
And a camper van!!!!
Of course!
Think I'm getting the hang of it!!
Automatic if I remember right, have had automatic car for 15 years now, can understand why people say they would never go back!......so much easier!....
It is lovely to drive, but I meant the camping aspect and how to make that easy peasy!! The site was perfectly placed - I parked the van, just put the bed down to sleep and up for the day - wasn't warm enough to live outside until bedtime in November! Just a short walk to the nearest restaurant. Walked into town every late morning and again in the evening to eat.
So perfect.....nice to get it all right....How many miles to get there?
125 miles
Not too bad then….
I wonder how many cases of GCA he's actually seen. East Anglia is a small place. Although I remember him saying it was good to study that area because people don't generally move to and from it so you have an interesting gene pool.
I also remember in his presentation him saying "The first step in becoming an expert is to declare yourself one" which I thought was very witty. He was obviously ambitious to make his mark on something even then
I've always been suspicious of "experts". Especially if they are self declared. I hate the term. It usually indicates a narrow discipline knowledge. I was known to my peer group within the top 100 designer makers in the UK. There was always someone who could design and make something that amazed us and on a few occasions I was that person. We all continually learnt from each other and sought to stretch that further at every opportunity. Despite my ability I never would have called myself an expert although now looking back I clearly was. It just never occurred to me. No matter our level of competence we only ever sought to stretch that with new challenges. The fun was in what lay ahead, not what we had done. To be a competent physician this man should only be concerned with improving his ability to understand his speciality and improve his delivery of care.
In Yorkshire we'd bring people down to size for blowing their own trumpet 🤣 or as the Leeds fans chant if some expensive celebrity footballer is on the pitch "who are ya ooh are ya?"
Great....I can say for sure, my bad flare in early August has resulted in a different pattern of pain now and then in my head. They aren't too bad except for the left occipital nerve right up the back of my head...it takes me to my knees, aches a few seconds and goes. Never had that one before. He speaks the truth....now if they will listen.💞
nicely on point Grammy80. We've been commenting on the individual. However one feels about him it has to be a good thing that he and hopefully others take note of this.
Since I'm across the pond....I'll never meet him. He made a point and scratched the surface...it is different...why? is iit consequential? Does it increase chance of stroke or further sight loss.....will it alter treatment ? There is always so much more to know....but each step appreciated.💞 (I don't have glasses on)
so interesting reading all the comments! Now I need some help please. I have GCA (3.5 yrs) I'm adrenal insufficient and just had my 3rd Synacthen test last week. The results show that adrenals are slowly improving but not where they need to be. Been taking 2.5mg pred for a couple of months. However my CRP and ESR which have been normal for months are now raised, CRP 16 and esr 26. Not too high but my neurologist thinks it signifies heading for a flare. Increased to 3.5 for the last week and definitely feel better. He now thinks I should add an immunosuppressant drug to help me. I've always been nervous to do so but if it can help me get into remission maybe I should?? Then it's a question of what to take and he's said we should consider the biological, one which I know is widely used or methotrexate and he mentioned another. All thoughts welcome please!! Thank you
An immunosuppressant drug will only do the same as a little bit more pred appears to be doing - possibly. It will only work as long as you are taking it, the same as taking enough pred. And apart from Actemra nothing is likely to entirely replace pred. In fact, even Actemra won't: it works 100% for about half of GCA patients. There are at least 3 mechanisms that create the inflammation and Actemra only works for one of them. You would still require pred for the others if YOUR GCA is due to them.
You obviously need slightly more than 2.5mg, it is likely I think that 3mg would be enough and I personally think it is crazy to add in another heavy duty drug that isn't guaranteed to work at that low a dose. I know that Prof Sarah Mackie wouldn't, That would rule out methotrexate and leflunomide (probably the other he mentioned). And arguably the longer term adverse effects of that low a dose of pred are far preferable to introducing the biologic, Actemra.
You will get into full remission with GCA, i.e. no symptoms with no drugs, when the underlying autoimmune disorder burns out and stops. There is no drug available that will achieve that. They are all only potential steroid sparers. If you were stuck at 13mg it would be a different matter, but you aren't.
If you want more answers from others besides DorsetLady and me, you need to post this question as a new thread since only she and I are likely to see it here in an existing thread.
Oh, and a PS - there is a way to go before they can say you have adrenal insufficiency since it is hardly surprising that your synacthen test is suboptimal when you are still on 2,5mg pred, it can be loads to suppress corticol production. They are wasting time and money repeating them yet.
I spotted this. Dr Mukhtyar is the consultant I was referred to at Norfolk and Norwich University Hospital. I am glad he has an award and that the research reflects what patients have been saying.
However, I don't see effective communication between consultants and GPs. Dr Mukhtyar told me that NNUH Rheumatology Dept had communicated with local GPs about not putting suspected PMR patients onto steroids until they had had an ultrasound scan. This avoids misdiagnosis.
I did convey this to my GP ((after months on Prednisolone and a flare and an eventual referral to NNUH but too late for ultrasound) and my GP reported that they had not received any such communication and that they would take this to the practice meeting. That was months ago and I have not heard anything more.
The pathway should be, I assume: patient consults GP; symptoms are considered and blood tests are done showing high inflammation markers; patient is referred to fast-track Rheumatology ultrasound scan for final diagnosis based on evidence. Then the patient returns to the supervision of the GP if PMR is confirmed.
Pitfalls of this include: monitoring doesn't happen; length of time on initial 15mg of Prednisolone (advice could be anything from two weeks to six months); speed of tapering; no nutrition advice; no exercise advice (other than "do some").
I'm convinced that this is not an uncommon disease, there are many of us "muddling along" feeling a bit isolated, and that we deserve a bit more joined up support. It's easy to blame the parlous state of the NHS but I think there are some strategies that could help patients and NHS. Is PMRGCAuk in a position to make a difference or am I oversimplifying things?
As you can guess, I'm disappointed, to put it mildly.
I think you are quite right it isn't an uncommon disease - it IS uncommon taken over the entire population but not that uncommon amongst over-50s and PMR is much more common, encompassing a risk of progression to GCA where it exists, but is dismissed as being a concern when it shouldn't be.
The trouble is with CM's baseline is that not all GCA patients demonstrate high inflammatory markers at the outset and a lot never do plus the ultrasound has similar problems to the TAB - the accessible arteries don't always show the presence of GCA that may be somewhere else.
And above all - you are right about poor communication within the NHS. Then there is poor communication between doctors and patients - how did you do at the N&N?
Dr Sarah Mackie and The Target Consortium paper:
Tocilizumab is not approved by NHS England for GCA on cost grounds
New girl on the block
Tozilizumab/Actemra
