I had the privilege to hear Professor Dasgupta speak at Needham Market community centre this morning. What an interesting and clever man! He spoke for an hour, which flew by, about GCA and PMR, focusing more on GCA, which suited me as that's what I have. Much of what he said affirmed my understanding of the condition but one particular piece of information amended my current knowledge base.
I had understood that the giant cells were produced in the bone marrow; apparently not! They are produced in the arteries and position themselves between the inner and middle layer (3 layers in total) of the outside of the artery vessel. They are made up of several cells which have joined together, therefore having several nuclei and being far larger that the average cell size; hence the term giant cell!
Another interesting consideration is around steroid doses. At his clinic in Southend, he now asks patients to calculate the total number of grams of steroid they have taken since commencing treatment. The critical amount for him was those patients who totalled in excess of 10gs (bearing in mind we are taking our doses in mgs)
There was so much more but too much to write here. If you have the opportunity to hear him speak, do it!
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JMM17
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Oh sorry, I didn't clarify that. Yes, before worrying about cumulative problems and looking at alternative drugs like Tocilizumab. If I understood correctly, the clinical trials have been completed and we are very close to having this drug licensed in the uk. However, it costs £10K per annum per patient and will only be prescribed under strict criteria. He suggested that one of these criteria might be the cumulative steroid dose in excess of 10grams. Hope that clarifies this.
How interesting and difficult sums are my thing, not!
My Rheumatologist maybe able to get it for me with another criteria - damage done by the disease and the presence of inflammation in my Aortic Valve, but this is another criteria I might meet.
All the drugs are horrible though, so it's not like I'm jumping up and down. Pred is the devil I know and we knock along together ok.
Yes, I agree about the devil we know but, if I understood correctly, he suggested that once the 10 gram amount is reached the negative impact may begin to outweigh the positive. Worth exploring anyway. He did say that most drugs will have some negative side effects. It's a question of balance I suppose.
This has been so useful to me thanks. Just getting my head round yesterday's diagnosis. Oddly now the pain of PMR has subsided I had begun to feel unwell in a kind of poisoned way, as well as the fatigue. So Pred and I are probably at the end of our intense relationship anyway and I need something else for this newly discovered complication.
Do you mean 10 gram total over the whole period of illness?
That must have been an interesting talk. You mention that patients at Prof. Dasgupta's clinic are asked to calculate their total steroid dose from the start of treatment. I wasn't asked to do this, but out of personal interest I calculated that I had taken 6.16 gm of prednisolone for GCA over a period of 85 weeks. What was said about the group of patients that had taken a cumulative dose in excess of 10 gm?
This was a recent development at his clinic. As stated in reply to SheffieldJane; once the cumulative 10g dose is reached it may begin to have negative impacts which outweigh the benefits and therefore alternative treatment (drugs) may be sought.
So you and I have taken double!......if this was put to my arrogant rheumie he would ignore it.....would you take the alternative if still on pred and it was offered?
No probably not. Apart from the initial first year to 18 months when I obviously did get some side effects- raised eye pressures, cataract and about 6 weeks of sleeplessness I didn’t do too badly on Pred. Never had any flares and tapered relatively easily.
Any damage was done early days when my doses were high, lower doses didn’t seem to bother me, so unless you start TCZ right at the beginning don’t see the point.
I believe where we are in our illness continuum has bearing. Having battled PMR for 6 years then to get GCA I am faced with a minimum 2 more years of higher steroids. My life accumulation is 18gm so far and I am back on 40mg a day. TCZ has become a more viable alternative to consider for me.
Like DL, I also don't see the point of taking something new, if not from the start. I am in remission after 12 years GCA...can't do maths..Currently, and for 5 days, am on 40mg Pred, for chest infection. Was in hospital, last year, COPD, and not going that route again. I remember, years ago, my Cons. wanted me to try something other than Pred. May have been Methotrexate, and I told him, too, I would stick with what I had and knew, rather than a new set of side-effects.
As I refused Hydrocortisone, after being on it for 3 months, for Addison's Disease, when my 5 days are up, I will revert to 4 mg Pred.
I wonder what is so significant about 10g total dose? Since I have probably got to somewhere well over 20g total dose after 8 years on pred and a lot of that at well above 7mg, I've only had perhaps 1 year at 5mg or less!
But I have none of the apparent side effects of pred - no diabetes, no cataracts, my BP problems are due to atrial fibrillation which, in turn, is due to the autoimmune component of PMR. My bone density was fine last year after 7 years of pred.
And to be honest - I feel pretty good on 7mg pred at present ...
I think his talk was primarily about GCA, so maybe it’s the affects of high doses in a short time making up the 10g rather than lower doses over a much longer period as in your case?
Would it make sense that higher doses in a short time frame are likely to do more damage to vital organs?
I believe that the suggestion was that the incremental burden of steroids may have negative impacts on vital organs, which may outweigh the intended benefits. Some patients who are experiencing deterioration or impairment of other body parts, due to steroid burden, may benefit from an alternative treatment/medication. He did concede that Pred was still likely to be the first/main treatment for GCA/PMR; it's cheap and well understood. I hope that's a fair representation of his wise words. I'd hate to misquote him!
I was told that this Aortic Valve Stenosis was caused by inflammation and I would need something " stronger" than Pred which confused me and TCZ was something that my Rheumatologist could possibly make a case for.
Did she mean an alternative rather than upping my Pred dose?
Tocilizumab works on the cause of the inflammation, the production of the IL-6 cytokine. They add it to your pred dose and then reduce the pred dose. It is not fully approved in the UK yet - it seems to be being used on an individual case basis if there is a strong justification for the £10K+ annual cost.
The lawsuit is not because of the side effects, It is because in omitting to list the side effects it made the drug sound better than other biologics for RA. They are all much the same.
If you really read the adverse events in any data sheet you wouldn't take anything! Aspirin, ibuprofen and paracetamol included...
They so often don't think about how their throwaway remarks come over. What they mean by stronger and what we understand are often not quite the same...
Plus, you must remember, the USA is a very litigious country....not to say all lawsuits are frivolous...but Some law firms are always waiting in the wings to sue.
No, this is to treat the inflammation that is effecting my heart Inger, not the actual physiological changes in it. I am wondering if I can argue for Pred. Because only TCZ and Methotrexate have been mentioned as being a stronger alternative. This was not my understanding until Wednesday of this week - i.e. Stronger?
I don't like the sound of either to be honest. The potential side effects of TCZ are much more alarming than Pred. To me.
Sorry, I simply do not have enough information and am unlikely to get any more for some weeks. The state of ignorance is hard for me. Not sure what NHS class as an emergency these days. Young people?
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