Hello I am new here. New trial | Arthritis Information

 

Hello, I found this forum around 12 months ago, after I was diagnosed with RA, but this is the first time i have posted. I am in Australia, & am 62 years old.My specialist has tried so many things with me, but unfortuntely I cant tolerate sulfasalazine Leflunomide. I am on 20mg MTX a week & 200mg of Plaquinal a day, plus Mobic.At my last appointment 2 weeks ago I was asked to go in a new trial, which hasnt been done on humans before, but very successful with rats & mice. Yesterday I had my first screening to see if I was suitable, so now I have to wait a few weeks to see what happens.It is my specialist who is developing this new injection.So am hoping fianlly something is going to work for me. If anyone is interested in reading about it.The new drug will be called Rheumavax. My specialist is Professor Ranjeny Thomas. You may like to read a little bit about her & the drug she is working on.I hope I havent rambled on too much. Just hoping there is a breakthrough :)
http://www.google.com/search?client=opera&rls=en&q=ranjeny+t homas&sourceid=opera&ie=utf-8&oe=utf-8 eilly39190.645462963hmmm you are very brave. Let us know how it goes. Is it a vaccine or what? Interesting.good luck with the trialYes it will be a vaccine, in the thigh over a period of 6 months. I am feeling both nervous & excited. I have all the paper work & have read thru it thoroughly. Any way I can answer questions I will. I had to have a thorough screening yesterday, am having more blood tests next week, ( they are in adition to my normal ones) have to fast 18 hours for these.

Do you have to go off all your other meds for 6 months? Do you currently have any bone erosions , nodules or damage? Is this supposed to stop all damage and pain of RA?

I am very curious sorry for questions.

As far as I know I will stay on my meds. I have nodules & erosoin. With the mice, it has stopped the pain, & there has been improvement in the damage. The only side affects they have found, has been a slight rash, & a slight drop in blood sugar. But they have only been temporarily. They are going to give me a machine to test my blood sugars. Apparently the only thing that may disqualify me from the trial, is if I am allergic to grass seeds etc. The blood tests will show that.Other than the RA I am a very healthy,fit & young 62 female :)I will still be having my normal monthly checkups while the trial is going on.So they are going to keep a very close watch.eilly39190.6721759259

Well good luck and let me know how it goes, if it goes.

take care

CinDee

How do they know if a mouse is feeling pain or not, I wonder?

Anyway, you are really brave and I thank you, because I'd love there to be a retroactive vaccine for this affliction. Especially if one comes before I suffer a lot more joint erosions. I've heard there's one coming down the pipe and I've read it will be widely available in as little as 3 years (but there's been talk about it for the last 8 so who knows?). So good luck and please keep us posted!
Gimpy-a-gogo39190.6898611111I will definitely keep you up todate. I was told it will probably be 6 weeks to 2 months before it starts. Where would you like me to post information as it comes about. I havent posted before, because you people know a lot more than I do.I have had so much helpful information in this forum. I thank you all. Shall I just keep this post updated as things happen?Sure, or start a new post. There is no right or wrong way. I would just really appreciate the updates!

Dear Eilly, I'm new to the board and want to thank you for your contribution to testing future medications. My gosh, you are brave. I hope it works for you and you will know you have helped us and so many other people (maybe even children with this horrible disease) discover new treatments.

Maybe some day I will try something like that, but right now I just need to get my methotrexate and remicade to get me off of prednisone.....

I was offered free meds about 10 years ago (probably enbrel ),but I was scared to take it and refused, and in fact changed doctors. I was taking plaquinel, but got terrible migranes from it and then switched to 'liguid methotrexate'.

Good luck with this and please keep us posted, Sarah

Wow Eilly - you have a lot of courage - I wish you well, and yes, keep us posted.  As you will see, I'm just across the ditch from you - Go Oz!!
My daughter and grand-daughter live in Oz too - so I have to be nice to Aussies  Hi Eilly - sent you a private message but you haven't replied so will try here. Have you been approved to start trial yet. If so when do you start.Hi friends
Just an update, the trial hasnt started yet, may find out more next week when I have to see my specialist. I was told it would be a couple of months or so. Will keep you all updated when something happens. I do hope it works, as the Plaquenil & MTX are really upsetting me, I have abdominal pains 24 hours a day, & for 2 days after the MTX I am completely doubled up. am going to ask if I can go on MTX injections when I next see her.
Also read about Rheumatoid Arthritis Vaccine, Rheumavax here. http://www.cicr.uq.edu.au/immunology/dendriticCell.html#Thom asResearch
Hope everyone is keeping as well as its possible.
Bye Eillyeilly39223.8756018519Wow! I am so excited and hopeful for you, and for the fact that you will be sharing this journey with us, if indeed you are selected.  How wonderful, also, to have a doctor on the leading edge of things.  Thank you, and we all are looking forward to hearing more about it!   Pat

Eilly,

Good luck with the trial...I know it must be exciting and a little scary as well.  I'm sure interested as we are about the same age (I'm 64).  I've  had RA since I was 25!  Luckily, I didn't really have visable damage until the last 10-15 years.  I'm still able to exercise and do most things that don't require a solid grip.  Anyway I just want to wish you luck and keep us posted.  The boards can offer a great deal of support...they sure helped me when trying to  make a decision of whether or not to start Enbrel nearly seven years ago!

Eilly. I too want to thank you for doing this for us. You are very brave and
generous. I hope this shows promise for so many who suffer with this
horrible disease. Maybe we will see a cure. I'm also thankful that there are
wonderful doctors out there inventing these valuable medicines for us. What
would we do without them. Please give us updates as you go along this
journey.

Gimpy posted logically "How do they know if a mouse is feeling pain or not, I wonder?"

Medical specialists have privilage to use patients(at their risks) as trials. Patients have been thru bumpy roads that provide no solution and they bang their hopes on any new finding to such trail.

I had been thru my own human trail on herbs and natural foods and I knew there wasn't any pain not like the mouse.

The tendency is patients rely too much on meds without knowing/have not found the reality, the power of own body, herbs and natural foods to overcome the disease.

Don't get upset and critical as it was my true experiences. I dumped meds 2 decades ago yet deformities of toes have shrunk to sizes that I can move without difficulty. Back to normal, I eat correct natural foods and drink nutritional herbal tea often.

I believe if medical science has to cure arthritis it has to incorporate herbs and natural foods in the search for cure. 

I think you are extremely brave to do this and as an RA sufferer i want to thank you, its people like you who give us hope.Keep us posted and take care

Good for you to have all that near you.Good doctor, future treatment!Best of luck and keep us posted..very excited to see the outcome!

 

I saw my Specialist yesterday, there is a slight delay, one more test to complete, as they want to be as sure as can be nothing will go wrong,but it is going ahead shortly.
Apparently there will be 54 ppl in the trial. First set of 9, then another set of 9. The rest will be in a control group.I have been told it is pretty certain I am in the first set of 9. Will keep you updated as things proceed.
The last couple of weeks I have felt a little better, I am upping the MTX to 20mg a week, but pretty sure it is the MTX that is upsetting me. I was on 20mg but had to drop it to 10mg, because of a little liver damage, but that has rectified itself, (thank goodness)If it upsets me again, I am to contact Specialist & she is going to change MTX to injections. I have read here on the board the injections dont seem to cause the same upsets, so maybe everything will sort itself out.
Thanks for all the support. Bye Eillyeilly, thank you so much for keeping us posted on this exciting new drug trial. I, for one, am waiting with baited breath! Well, I sure wish eilly would come back and tell us how her drug trial went!
I'm turning blue from holding my breath---people think I'm on minocycline
or something!Yes, I would love to hear from her too. Perhaps she is so well that she is out running a marathon.  Hope so!

eilly:

I have read of this before and thought it was very exciting.  I do hope that you are chosen and it gives you immediate relief of your symptoms.  Best of luck and please, please, keep us posted.

Janis

I hope this works out for you. Please let us know how it all goes.

Hi there. sorry I havent been around much, I have been checking the forum regulary, but havent had anything to post. I have just popped in to let you all know the trial for Rheumavax starts next week, it has been so long in coming. Will let you know what happens. Hope everyone is keeping as well as possible.

 

Wow! It has been looooong in coming! How are you doing? How is your RA? How have you been treating it? Why the delay? And it's Thanksgiving here in the states so happy Thanksgiving!

They had to get the ok from the Govt. was supposed to start 6 months ago, but kept getting held up. The RA is really playing up lately, specially in arms, hands, knees & feet. Have tried many different meds, but a lot really upset me, so at moment just on plaquenil, MTX injections & Mobic.

I have had to give so much blood lately (must be vampires there :) ) some of the blood was in special containers. Monday I have to give another 250mills, then Tuesday I get the injection (made from my own blood that I give on Monday). apparently they keep me in the hospital for 3 hours afterwards to keep a check on things. back to hospital on Thursday for more checkups, then I have to monitor sugar levels for a week, as apparently suger level can drop dramatically.One of the things they are hoping is there is a big drop of inflamation, which would be great. Thats about all I know for the moment. Will let you all know how it goes.

eilly, This will be an interesting thread to keep an eye on.

Hope all goes well for you and relief is just around the corner.
Best wishes to you and I look forward to reading about your journey on the trial.  I was signed up to start a trial of a JAK-7 inhibitor from Pfizer, but am in too bad of shape to consider going off my meds and possibly end up with a placebo. 


Eilly,

Had my blood taken this morning. Thursday for Injection. There is no one going on Placebos. There is only 9 people in the trial to begin with, if everything goes well, they will have a lot more in next session. If it works, it means it will get rid of all inflamation, as its the inflamation that gives the pain. Also if it works it will stop the condition getting any worse, it cant fix the damage that has already been done.I will be monitored closely over the next 6 months. I will still be on all my meds for the time being,but hopefully I will be weaned off them. Only time will tell.

Will let you know how the injection goes, apparently it is only the one injection. They nearly had to call the trial off for me, as they were having big problems getting enough blood, but luckily they eventually got enough. They always have problems finding a vein, & this was a very large needle YUK.

One injection? WOW!  Good luck and I sure hope it works for you!
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