Prof. Dasgupta talk, very interesting

[JMM17]

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!

[SheffieldJane]

Lucky you JMM17. Did he talk about Actemra at all? Do you recall what he said?

[JMM17 in reply to SheffieldJane]

Hi SheffieldJane, no, I don't recall him mentioning Actemra. Sorry

[JMM17 in reply to JMM17]

Hi Again,

I realise now that Actemra is a brand name for Tocilizumab, which he did mention. See my response below to SnazzyD.

[SnazzyD]

Interesting! When you say critical amount, what do you mean? To treat it effectively? Before worrying about cumulative problems?

[JMM17 in reply to SnazzyD]

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.

[jinasc in reply to JMM17]

healthunlocked.com/pmrgcauk...

You might want to take a look at this thread.

Class action in USA.

[SheffieldJane in reply to jinasc]

Good God I don't think I'll be fighting to take that. But what on earth else is there stronger than Pred. ?

[SheffieldJane]

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.

[JMM17 in reply to SheffieldJane]

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.

[SheffieldJane]

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?

[JMM17 in reply to SheffieldJane]

Yes, that's right. Will need a pencil and paper methinks! 😁

[SheffieldJane in reply to JMM17]

Or a nerdy husband. I am well short, having only been on PMR doses.🤓

[Labradorite]

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?

[JMM17 in reply to Labradorite]

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.

[DorsetLady PMRGCAuk volunteer]

Hi,

Worked out mine -over 4.5years I took almost double his 10gs - 19676mg.

[Labradorite in reply to DorsetLady]

That's a lot!

[JMM17 in reply to DorsetLady]

Are you off steroids now DL?

[DorsetLady PMRGCAuk volunteer in reply to JMM17]

Yes thankfully - just over a year now, and still here to tell the tale. 🤔

[JMM17 in reply to DorsetLady]

Well done indeed, inspirational! 👍💐

[SheffieldJane]

What a Boffin you are DL. 👏

[DorsetLady PMRGCAuk volunteer in reply to SheffieldJane]

Just another day when I was bored🤦🏻‍♀️!

[Longtimer in reply to DorsetLady]

I have averaged between 8 to 10 mg for the last 6 years......goodness knows what that would total........any ideas?

[DorsetLady PMRGCAuk volunteer in reply to Longtimer]

Very roughly - if you say 9 per day as average x 365 days equal 3285 x 6 yrs gives 19710.

[Longtimer in reply to DorsetLady]

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?

[DorsetLady PMRGCAuk volunteer in reply to Longtimer]

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.

[Longtimer in reply to DorsetLady]

OK thank you for that and for doing the maths!

[jinasc in reply to DorsetLady]

Me neither.................TCZ to new.

Pred all the side effects know

Will be an article on pred and side effects in winter newsletter out early Dec.

[DorsetLady PMRGCAuk volunteer in reply to jinasc]

Sometimes better the devil you know!

[PMR2011 in reply to DorsetLady]

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.

[karools16 in reply to DorsetLady]

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.

[PMRpro Ambassador]

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 ...

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

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?

Answers on a postcard!

[JMM17]

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!

[SheffieldJane]

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?

Does anyone know?

[Inger62 in reply to SheffieldJane]

Beta-blockers, to slow down pulse A little?

[PMRpro Ambassador in reply to SheffieldJane]

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.

[SheffieldJane in reply to PMRpro]

Thank you for the information. The adverse effects in the Lawsuit sound frightening.

[PMRpro Ambassador in reply to SheffieldJane]

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...

[SheffieldJane in reply to PMRpro]

Thank you for taking the trouble to peel me off the ceiling PMRPro. I just want to have made an informed decision for when the time comes.

As ever I trust your informed opinion and judgement. It was the " something stronger" remark that the doctor made that confused me.

[PMRpro Ambassador in reply to SheffieldJane]

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...

[Klah in reply to PMRpro]

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.

[SheffieldJane in reply to Klah]

Good point Klah.

[SheffieldJane]

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?

Just let me wail away in a corner pointlessly.

[Lambethwalker]

Thanks to all for this invaluable discussion, and to Prof. Dasgupta...