Can I quote you?

[LemonZest11]

Hey experts … PMRpro, DorsetLady et al, My local Member of Parliament has just visited me to get information to put to our Federal Health Minister in an attempt to get an exemption so that I can have my allocation of tocilizumab extended, or indeed get the drug made available as it is for RA. Among questions, he asked me about the other two drugs, methotrexate and leflunamide, that my Rheumatologist wants to try me on. I told him that I had been advised on here that there were no guarantees with those drugs, and each came with their own set of side-effects. He asked me if I could quote you on this. Can I do that, and what are your credentials? He’s just looking for more ammunition for my argument. Is this group an official group of experts? 🤞. Well you’ve been expert to me, anyway.

[SheffieldJane]

Hi, Totally impressed! PMRPro and DorsetLady have back up sources for all their advice. Only useless me is awake at 2am. Essentially those 2 drugs are arthritis drugs. Take a look at FAQs. Good luck miss LemonZest11! 👏👏👏

[LemonZest11 in reply to SheffieldJane]

Oh sorry that you are awake Jane. I must admit, I had a sleepless night, again, last night. This time I put it down to nerves about having the conversation with my MP this morning. I thought it was going to be on the phone but he came knocking at my door at 8.30am!!! He is so on our sides but then he can’t make the decision, he can only put the case forward. Thanks Jane, I hope you have nodded off, or will do so soon. xx

[LemonZest11]

Thank you Dad2Cue. As Jane said, the advice here is supported with research and sources so I think it is more than opinion. I am just wanting to avoid another drug that has no guarantee of efficacy when TCZ is proving effective for me at the moment, and I know there are others out there who feel similarly. Thanks for the paper, I will forward it to my advocate.

[PMRpro Ambassador]

jinasc has quoted Prof Dasgupta on the use of methotrexate in GCA - he's not impressed. I'm fairly sure that she replied to you with the exerpt from his comments. That is what I base my comments on and that can be quoted. That is in contrast to this small study with his name on which called for further studies - obviously in the years since it was published his experiences have persuaded him it is not particularly useful.

pubmed.ncbi.nlm.nih.gov/300...

Both of them are more likely to be used in PMR and to my knowledge there are only very few, very small, non-randomised studies to support their use. This

ncbi.nlm.nih.gov/pmc/articl....

is one that suggests it may have a role in GCA - but the randomised study they say is needed has never happened and the sample size here is small.

This is another small study

pubmed.ncbi.nlm.nih.gov/300...

where they also claim a steroid-aparing effect - but one in four patients discontinued lef because of adverse effects. It is all very well saying patients didn't need to he hospitalised but perhaps the most common effect is diarrhoea which may not require hospital treatment but can place a lot of restriction on patients lives because of needing to be close to a bathroom and I know quite a few patients who found it a real problem.

This might be helpful - it is the start of the longer term follow-up process for tocilizumab in GCA.

rheumatologyadvisor.com/hom...

What I don't understand is why RA patients aren't subject to the restrictions on duration of use but GCA patients are. The evidence is that tocilizumab/Actemra has a much better effect than adding leflunomide or methotrexate and usually it takes some months to achieve a significant effect with the DMARDs whereas pred dose can be reduced considerably more with the DMARD.

However - I'm far from sure the opinion of a selection of patients would carry much weight - and I don't know if the charity itself has a view or policy on comment. You would have to ask them.

[LemonZest11 in reply to PMRpro]

Oh thank you so much pro. This is all so helpful. My mp, when I told him about methotrexate side effects said "oh f@#k that!", he's keen to help but we'll aware of the obstacles. We can only try. I have written a submission and he has asked for the kind of source material such as this and Dad's research docs. This will take a while, needs to move from state to federal, but we do have an election coming, I will keep you posted.

[LemonZest11]

Me again, I can’t find where jinasc offered Prof Dasgupta’s quote on use of Methotrexate in GCA … would you mind pointing me in the right direction? Thanks again 😘

[PMRpro Ambassador in reply to LemonZest11]

You could look at here recent replies maybe? They are on her profile.

Or message her and ask.

[LemonZest11 in reply to PMRpro]

Thanks PMRpro, you’re the best!

[jinasc]

Hope this helps.

As PMRpro has said, here is the link for Dasgupta's Tips and I have added some others that maybe of help.

There is a wealth of information on the web, the easiest way is to put Giacta Trials in your search engine and/or Roche Trials for Tocilzumab.

healthunlocked.com/pmrgcauk...

These links may help you so that your MP has back-up on Dasgupta.

thelondonclinic.co.uk/consu...

profbdasgupta.co.uk/

I was involved in setting up the trials for Tocilzumab - there is a load of information on the web about the trials. One thing the trials were limited and originally the trial was called the Giacta study.

vasculitis.org.uk/wp-conten...

This, I found was the most with readable information,

researchgate.net/publicatio...

[LemonZest11 in reply to jinasc]

Oh thank you so much. There is a wealth here. I will compile a dossier for my advocate and we'll see what happens. I'm grateful for all of these links and I know that, at the very least, we have the very best evidence/studies results/opinion available. Thanks again, will keep you posted.

[Fran_Benson Partner]

Hi LemonZest11, good luck in preparation of your case and I hope it goes well. It looks like you have been provided with a lot of resources from PMRPro, Jinasc and Dad2Cue and I'm sure they will be helpful.

In answer to your question about qualifications, no-one here is medically qualifed ie a doctor or a rheumatologist. There are a lot of informed patients on here and certainly our volunteers are particularly well-read and have had PMR or GCA for a long while and also bring a wealth of personal experience to the discussions, but as a charity, we cannot be quoted from this site ie you can't attribute to PMRGCAuk. (We do have rheumtatologists among our trustees and patrons, but they are not involved in the site. It is a patient support forum - a place to support each other, share the latest research, help each other out etc.)

I hope that helps to clarify things for you and best of luck reading through all the research and making your case. Do let us know how you get on as well and wishing you success.

Fran

[LemonZest11 in reply to Fran_Benson]

Thank you Fran, for taking the time to explain the position of the charity. I understand completely and I assure you, I haven’t quoted or attributed information to anyone on this forum. I have, however, used the wonderful resources that, through the generosity of those you mentioned, I have been able to access. By way of an update, my local Member of Parliament (State), has progressed my submission to the Federal Member who contacted me today. She has advised that she will reach out to the Federal Health Minister on my behalf. To be honest, I am not optimistic, but at least we are having a go (as we say in Australia), and hopefully attention may be brought to the situation. This is a marvellous group of people who share resources, experience and ideas so generously. I am very fortunate to have found you. As I have said, I will keep the group posted.