New drug treatment for Lupus?: Hello everyone Just... - LUPUS UK

LUPUS UK

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New drug treatment for Lupus?

misty14
misty14

Hello everyone

Just thought I'd share an article there's been in the 'Times' about a drug company Immupharma being able to resurrect it's lupus drug Lupuzor.

It's been working on it for ten years and it suddenly failed in a late stage trial!. It's tested more patients on it since the trial and found it does help certain ones. Immupharma has now announced its joined up with Avion pharmaceuticals a U. S drugs company who will fund another end stage trial to see the effects and fund its licence agreement!.

I wondered if Paul or Kevin knows anything about it?. Hopefully it gives us hope of another future new treatment for this awful disease. MistyX

P.s, for those who've kindly asked about my cards and krazykat, sorry I missed your lovely craft post here's an example of one I've made earlier!. Keep as well as possible everyoneX

42 Replies
oldestnewest

Love your card, Misty! I can see you and your spirit behind the colors and design. XK

misty14
misty14 in reply to KayHimm

Thanks so much Kay, do you know anything about this drug Lupuzor as your in the U. S?. X

KayHimm
KayHimm in reply to misty14

I don’t, Misty, but will see if I can find anything out. So discouraging when these drugs don’t work out. 😍k

misty14
misty14 in reply to KayHimm

Thanks Kay, will be good what you find out as they're giving it a second chance which gives us hope. X😍

Interesting, I didn’t know of this drug, it would be really good if they can get it trialled again, more options are always good news for us.

I’ve just been reading about it.

Love the card Helen, you are so clever😍

Hugs

Diane 🌸xxx

Thanks so much Diane for your compliments!. New treatments are always welcome for us as there have been so few!.

Do hope your Rheumy appt today went well. Thought about you. Xx🌺😍

Thanks Helen, all went ok, he suggested increasing my Candesartan to help my Raynauds and take Arcoxia for two or three weeks with a weeks break and see how that goes, if I’m not doing well with this regime then he said a very low dose of mycophenalate might help, just 250mg to start due to my intolerance to so many meds. We decided not to go back to Hydroxy for now because of the constant headaches I was getting inbetween the migraines with it...

I hope you’re having some nice sunny days in your neck of the woods🙏🌞❄️Xxx

Hi Diane, I'm glad your Rheumy appt went well. Your Rheumy Consuktant sounds much more open minded than mine!. It sounds like a good plan for Low dose Myco if the NSAIDS don't help too much. Myco is better tolerated and I got on well with it for years!. Hopefully it would be ok for you.

I've spoken to my Rheumy nurses( they're worth their weight in gold) as still got flu jab flare and she did say it's ok to stay on 5 mg for longer now!. Talked about my toe and she said she'd talk to the Consuktants and ring me back which she has. They won't budge on treatment and say toe being treated by right Consuktant and keep reducing the steroids!. I just feel so let down by them I wanted a change of treatment to try, they're so tough!. I've asked for an earlier appt.

it's bitterly cold but lovely in the sun. Hope you had a lovely weekend. Xx

I’ll pm you 😘 xxx

Can I kindly say that it did not ‘fail’ to help. Here’s another instance where they can word things to get the results they want.

The point of this set of trials was to beat the placebo effect. Americans in particular (that’s what the study says but I’m putting it in my American vocabulary), love to swallow their pills. So much so that even pretending during meditation can ease symptoms. So the last set of trials endpoint was to have a standard that’s been set that surpasses this placebo effect. It did not do that. It did help over 50% of the patient along with standard protocols.

So now the issue is do they go forward looking at the cost/benefit analysis bearing in mind there are only 202 people in the study. (Or 220 sorry I’m foggy on numbers today.)

They have reached out to other drug companies to get opinions and possibly join forces for more cash, workers, and repeat studies to put this on the market.

It’s a game played again and again. You can join the study. There is a link so if they can go forward you can help.

Doaty

Thanks doaty for your reply and helpful explanation of it all!. As your American would you take part in the trial?. Xx

I would but they won’t let me. I have a previous history of cerebrovascular accidents. Chemically it appears to be safe. The rat trials were very safe.

And later patients with double stranded anti - DNA antibodies improved, right? It looks like it has been fast-tracked by the FDA. Wouldn’t that mean there is potential for success at this point?

Xk

Oh no. The FDA is owned by the drug companies now. They take their info from the drug companies. They do no independent studies. You can’t trust that.

I look at trials and reactions to previous modules. I look at biochemical reactions prior to testing on live subjects (rats, cats).

I’m such a nerd I actually read the research word for word. I know, boring right.

KayHimm meds are fast tracked when pressure is placed on the FDA or it’s a redundant medication.

I still see it as being hopeful. As a research scientist was not known for the word ‘hope’ in my repertoire. Facts. Yes I would try it if I could. What do I have to lose if it helps others?

This is the first one I’d try if I could.

I like reading research papers too! It helps me understand what is happening to my body and really helps me with my appointments. Consultants really don’t like you mentioning mice studies though!!!

misty14
misty14 in reply to KayHimm

That is good news Kay and the article says it's being funded again for a stage three trial repeat so they're not giving up on it yet!. We'll keep our fingers crossed that it gets good resukts. Xx

Hidden
Hidden in reply to NeuronerdDoaty

Neuronerd, this American for one, hates pills! Even swallowing supplements is a chore as my esophagus tires quickly and doesn’t want to keep moving. I end up too often with pills stuck in my throat and have to wait until they’ve dissolved enough to finish swallowing. If they are big and this happens, I end up chocking on them.

But I get what you are saying.😉

Hi misty14,

Re.: LUPUZOR

Thanks for sharing.

Seems promising but still not at the final UK license phase/stage.

Just checked a paper from it’s own website:

immupharma.co.uk/analysis-p...

There’s also a radio/sound only interview of one of the directors talking about the potential of LUPUZOR:

directorstalkinterviews.com...

Personally as a lupus sufferer I’m not hopeful about so called “wonder drugs” because they all have side

/adverse effects which most/some will experience?!

Thanks again.

Regards

misty14
misty14 in reply to Sue_petal

Thanks sue_petal for sharing this additional info. Very helpful. I agree with you about the drugs and side effects!. Interesting that it looks like we have to have these antibodies to benefit from it so it won't help everyone!.

I personally like to feel there's always something else I could try if needed!.

Hope your as well as possible. X

KayHimm
KayHimm in reply to misty14

I wonder if that means that the study only targeted those patients with anti-DNA antibodies, not that others may not benefit. Aren’t most drugs used in lupus not actually approved specifically for use? As you said, there is something you could “try” if needed. Lupus patients get Rituxan and Cyclophosphamide off label if it could help.

So I think any new drug could still be a good sign, Misty! 😘

Hi Misty!

Always good to see that studies are being done. Thanks for sharing.

Especially thanks for sharing your special card! It's lovely and I can imagine you making these with such care and love. So personal.

Panda xx

misty14
misty14 in reply to panda2

Thanks so much panda for your very kind words. Hope your still feeling better cold wise. Xx

Haha .. no, not boring. Glad you read these studies word for word. Thanks!

Xk

It would be good if there was a foolproof way of knowing who this drug will or won’t suit

Paul_Howard
Paul_HowardAdministrator in reply to Oshgosh

Hi Oshgosh,

A lot of research is going on in this area now to develop precision treatment for people with lupus. It will allow doctors to do a tissue or DNA test at the point of diagnosis and pinpoint which treatment is most likely to be successful. There is a massive project called MASTERPLANS which has been looking at this in lupus in the UK for the past few years. Hopefully they'll publish some helpful findings when the study is complete.

Hi misty 😀, its good to know there are new drug being developed, hopefully this will get on the market and be successful. Love the butterfly on the card , im a sucker for butterfly images, you have a talent!!! Take care and keep well xxxx

misty14
misty14 in reply to weathervane

Thanks so much weathervane for your kind words. I do enjoy losing myself in making them and getting colours right!. It's always good for us to know of other treatments coming along!. How did today go at the dentist?. Hope helpfulXx

weathervane
weathervane in reply to misty14

I will do an update post later , but ive made a decision, for better or worse xxx

Hi misty

Ah...another talented lupie!!! Yayyy!! 👏👏👏Love this card..as a bit of a hippie this one appeals with the colourful flowers..peace n love people peace n love!! ✌️ ☮️🕉️☯️

Thank u for sharing this info too..there's always hope 🤞🤞xx

misty14
misty14 in reply to Krazykat26

Thanks so much krazykat for your lovely reply!. Hope your keeping as well as possible and warm and cosy!.

We, Lupies are a lovely, supportive, talented bunch!. Xx

Hi misty14, thank you for the info, unfortunately they stills work on the new drugs.

Last week, I had turned down my doctor to do research for the new drugs due to my current situation given me so much stress: my house under construction and my husband passed away. For those reasons, my Lupus symptoms are getting worse. My doctor suggested me to take L-Theanine 200mg per day. Even a nurse show me what a capsules looks alike. After couple of days, it seems to be help the mood swing that I can relax and sleep good at night. My doctor says, when we stress out so much, it prevent the cortisol in your body to release to heal your body.

This is some kinda herbal and it sales over the counter, it about $5 for 100 capsules. I take 100mg in the morning and 1 after dinner.

Just wanted to telling you about it. My suggestion that always consult your doctor for whatever you take.

Look luck!

misty14
misty14 in reply to kimc

Thanks Kimc for your reply. I'm sorry your going thru a very stressful time which will bring on the lupus symptoms!. Hope you have family to help you.

I just want to say that we Lupies need to be careful of herbal preparations because they can boost our immune systems and make our symptoms worse!. Again it's going carefully as we're all different and we react differently to any preparations or drugs!.

I'm glad it's helping you but just be careful. Take careXx

kimc
kimc in reply to misty14

Yes, I agreed with you on take any medication or herbal and watch for reaction of anything you eat or drink. But, I forgot to tell you she's my rheumatologist and she is very good doctor and I am glad that it is working out for me.

Paul_Howard
Paul_HowardAdministrator

Hi misty14,

This is one of quite a few different lupus treatments that are in the pipeline and could hopefully begin to reach markets in the next few years. The trials for these medications are very difficult for loads of reasons and so it is quite common that they don't meet their primary end-point. This doesn't mean that they can't be really helpful for some people. Rituximab is a great example of this - the trials for rituximab in lupus didn't meet their primary endpoints but we know it works really well for some people and it has been used to treat hundreds or maybe even thousands of lupus patients in the UK now.

When we learn of any treatment that is going to be entering the market you can be sure we'll tell you all about it!

misty14
misty14 in reply to Paul_Howard

Thanks Paul for your helpful, heartening reply!. We certainly know we can rely on Lupus uk to keep us posted about new drug treatments!. It does give us heart to think there will always be something we can try!. X😊

Hidden
Hidden

PS to my previous comment. Beautiful card!

misty14
misty14 in reply to Hidden

Thanks so much brooksidecourt, very kind of you. Hope your wellXx

Hidden
Hidden in reply to misty14

Well? Ugh, yeah, not as bad as a lot of people in here, but would love to get back to my old self. How are you?

misty14
misty14 in reply to Hidden

Similar to you brooksidecourt but hope to make progress on Tuesday with emergency Rheumy appt. Xx

Hidden
Hidden in reply to misty14

🙏please let us know how it turns out. I will be hoping the best for you!

misty14
misty14 in reply to Hidden

Thanks so much brooksidecourt I will. Have a good weekendXx

Hidden
Hidden in reply to misty14

You as well!

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