Re: New Meds or Trials???

[Guest guest]

Hello,

Not sure what you’ve already tried. I’m also finding out that your drugs

have different names than what they call them in the U.S. Makes it confusing.

A lot of people talk about Kineret. Have you tried that?

~~~ ~~~

From: Sue

Sent: Monday, April 16, 2012 1:50 PM

To: Stillsdisease

Subject: New Meds or Trials???

Hi all,

I'm looking for some help on any new or trial meds that might be available to

try, or even a new idea of something else I could add to the mix??

I've tried pretty much everything and I'm now on the new one Tocilizumab at 2

weekly doses mixed with 1000mg IV steroids every 4 weeks. But unfortunatley, I'm

getting used to the Tocilizumab after having it for 3 years now, and even the

high steroid IV's are only lasting just over a week. Then I'm back feeling

dreadful, you know the score so I don't need to explain about the fevers etc and

I hurt so much I'm having to use my wheelchair constantly, that's when I feel

well enough to get out of bed!

My rheumatology professor has mentioned a few times about a stem cell transplant

- here in the UK they use them when nothing else is working with some success -

they only use them as a last resort as the disease isn't controlled so has very

serious potential (as you all know) but I'd really like to see if there is

anything at all I can try before having to do this.

Any suggestions will be greatly received. I've tried all the usual meds but

maybe there's something?

Much thanks for your time and help

Suex

[Guest guest]

Thanks and ,

I have tried Kineret and a whole host of other stuff . But the older one's

he hasn't tried so worth an ask, thanks .

I've just found a new one in trial - phase iii - called Tofacitinib. If anyone

has heard of this or any others do keep the info coming. It's all really

helpful. I'm hoping to arrive on Thursday with some ideas my prof will think

might be worth a shot at.

Thanks again

Suex

[Guest guest]

Thanks and ,

I have tried Kineret and a whole host of other stuff . But the older one's

he hasn't tried so worth an ask, thanks .

I've just found a new one in trial - phase iii - called Tofacitinib. If anyone

has heard of this or any others do keep the info coming. It's all really

helpful. I'm hoping to arrive on Thursday with some ideas my prof will think

might be worth a shot at.

Thanks again

Suex

[Guest guest]

Thanks and ,

I have tried Kineret and a whole host of other stuff . But the older one's

he hasn't tried so worth an ask, thanks .

I've just found a new one in trial - phase iii - called Tofacitinib. If anyone

has heard of this or any others do keep the info coming. It's all really

helpful. I'm hoping to arrive on Thursday with some ideas my prof will think

might be worth a shot at.

Thanks again

Suex

[Guest guest]

Sue,

I've just read at About.Com after using Google to look up Tofacitinib that it is

considered to be comparable to Humira in effectivness.

There is information about the incidences of side affects though. Always

interesting to read the new information.

>

> I've just found a new one in trial - phase iii - called Tofacitinib. If

anyone has heard of this or any others do keep the info coming. > Suex

>

[Guest guest]

My news... I saw my Prof today and told him I really didn't like the stem cell

transplant plan with odds of 7% fatality it was just too scary! He totally

understood and has suggested we look towards experimental meds now and see if i

can get on a trial. Tofacitinib was mentioned as his first choice! So our

research Was right! He's also contacting the consultants at the main

children's hospital in the country to ask for advice from the field of childhood

still's in case they have an idea. For now I'm carrying on with the Tocilizumab

whilst it's still helping the steroids to work for a little while, and adding

40mg oral pred to the 1000mg IV 4 weekly dose - so the daily equivalent of 85mg

to try to helpmwhilst he investigates. I'm back in 6 weeks to see what he's

found out... Thanks so much for all your help so far, and I'll continue to keep

you updated. New Meds are great news for all of us.

Suex

[Guest guest]

My news... I saw my Prof today and told him I really didn't like the stem cell

transplant plan with odds of 7% fatality it was just too scary! He totally

understood and has suggested we look towards experimental meds now and see if i

can get on a trial. Tofacitinib was mentioned as his first choice! So our

research Was right! He's also contacting the consultants at the main

children's hospital in the country to ask for advice from the field of childhood

still's in case they have an idea. For now I'm carrying on with the Tocilizumab

whilst it's still helping the steroids to work for a little while, and adding

40mg oral pred to the 1000mg IV 4 weekly dose - so the daily equivalent of 85mg

to try to helpmwhilst he investigates. I'm back in 6 weeks to see what he's

found out... Thanks so much for all your help so far, and I'll continue to keep

you updated. New Meds are great news for all of us.

Suex

[Guest guest]

My news... I saw my Prof today and told him I really didn't like the stem cell

transplant plan with odds of 7% fatality it was just too scary! He totally

understood and has suggested we look towards experimental meds now and see if i

can get on a trial. Tofacitinib was mentioned as his first choice! So our

research Was right! He's also contacting the consultants at the main

children's hospital in the country to ask for advice from the field of childhood

still's in case they have an idea. For now I'm carrying on with the Tocilizumab

whilst it's still helping the steroids to work for a little while, and adding

40mg oral pred to the 1000mg IV 4 weekly dose - so the daily equivalent of 85mg

to try to helpmwhilst he investigates. I'm back in 6 weeks to see what he's

found out... Thanks so much for all your help so far, and I'll continue to keep

you updated. New Meds are great news for all of us.

Suex

[Guest guest]

Hello,

Here is some information on the new medication you mention. I don’t see where

it might related to treating Still’s and how it works myself because it all

sounds so confusing. Maybe someone can help explain to me what benefit it has

and on what mechanism it works. The link to this information is:

http://en.wikipedia.org/wiki/Tofacitinib

Tofacitinib

From Wikipedia, the free encyclopedia

Jump to: navigation, search

Tofacitinib

Systematic (IUPAC) name

3-[(3R,4R)-4-methyl-3-[methyl(7H-pyrrolo[2,3-d]pyrimidin-4-yl)amino]piperidin-1-\

yl]-3-oxopropanenitrile

Clinical data

Pregnancy cat. ?

Legal status Investigational

Routes Oral, topical

Pharmacokinetic data

Half-life 2–5 hours

Identifiers

ATC code None

PubChem CID 9926791

DrugBank DB08183

ChemSpider 8102425

UNII 87LA6FU830

Synonyms CP-690550

Chemical data

Formula C16H20N6O

Mol. mass 312.369 g/mol

SMILES eMolecules & PubChem

InChI[show]

Tofacitinib (formerly tasocitinib,[1] CP-690550[2]) is a drug being investigated

by Pfizer for the treatment of rheumatoid arthritis (RA), psoriasis,

inflammatory bowel disease, and other immunological diseases, as well as for the

prevention of organ transplant rejection. It is an inhibitor of the enzyme Janus

kinase 3 (JAK3), which means that it interferes with the JAK-STAT signaling

pathway, which transmits extracellular information into the cell nucleus,

influencing DNA transcription.[3]

Recently it has been shown in a murine model of established arthritis,

tofacitinib rapidly improved disease by inhibiting the production of

inflammatory mediators and suppressing STAT1-dependent genes in joint tissue.

This efficacy in this disease model correlated with the inhibition of both JAK1

and 3 signaling pathways, suggesting that tofacitinib may exert therapeutic

benefit via pathways that are not exclusive to inhibition of JAK3.[4]

Rheumatoid arthritis

Phase II clinical trials tested the drug in RA patients that had not responded

to DMARD therapy. In a tofacitinib monotherapy study, the ACR score improved by

at least 20% (ACR-20) in 67% of patients versus 25% who received placebo; and a

study that combined the drug with methotrexate achieved ACR-20 in 59% of

patients versus 35% who received methotrexate alone. In a psoriasis study, the

PASI score improved by at at least 75% in between 25 and 67% of patients,

depending on the dose, versus 2% in the placebo group.[5]

The most important side effects in Phase II studies were increased blood

cholesterol levels (12 to 25 mg/dl LDL and 8 to 10 mg/dl HDL at medium dosage

levels) and neutropenia.[5] Phase III trials testing the drug in rheumatoid

arthritis have started in 2007 and are scheduled to run until January 2015.[6]

In April 2011, four patients died after beginning clinical trials with

Tofacitinib. According to Pfizer, the company that developed the drug, only one

of the four deaths was related to Tofacitinib.[7]

By April 2011 three phase III trials for RA had reported positive results.[8]

[edit] Psoriasis

As of April 2011 a phase III trial for psoriasis is under way.[8]

[edit] References

1.. ^ Herper, (2 March 2011). " Why Pfizer’s Biggest Experimental

Drug Got A Name Change " . Forbes. Retrieved 3 March 2011.

2.. ^ Kremer, J. M.; Bloom, B. J.; Breedveld, F. C.; Coombs, J. H.; Fletcher,

M. P.; Gruben, D.; Krishnaswami, S.; Burgos-Vargas, R. N. et al (2009). " The

safety and efficacy of a JAK inhibitor in patients with active rheumatoid

arthritis: Results of a double-blind, placebo-controlled phase IIa trial of

three dosage levels of CP-690,550 versus placebo " . Arthritis & Rheumatism 60

(7): 1895–1905. doi:10.1002/art.24567. PMID 19565475. edit

3.. ^ " Tasocitinib " . Drugs in R & D 10 (4): 271–284. 2010.

doi:10.2165/11588080-000000000-00000. PMID 21171673. edit

4.. ^ Ghoreschi, K.; Jesson, M. I.; Li, X.; Lee, J. L.; Ghosh, S.; Alsup, J.

W.; Warner, J. D.; Tanaka, M. et al (2011). " Modulation of Innate and Adaptive

Immune Responses by Tofacitinib (CP-690,550). " . J Immunol. 186 (7): 4234–4243.

doi:10.4049/jimmunol.1003668. PMID 21383241. edit

5.. ^ a b " EULAR: JAK Inhibitor Effective in RA But Safety Worries Remain " .

MedPage Today. June 2009. Retrieved 9 February 2011.

6.. ^ ClinicalTrials.gov NCT00413699 Long-Term Effectiveness And Safety Of

CP-690,550 For The Treatment Of Rheumatoid Arthritis

7.. ^ Herper. " Pfizer’s Key Drug Walks A Tightrope " . Forbes.

8.. ^ a b " Two Phase III Studies Confirm Benefits of Pfizer’s Tofacitinib

Against Active RA " . 28 Apr 2011.

~~~ ~~~

From: Sue

Sent: Thursday, April 19, 2012 9:25 AM

To: Stillsdisease

Subject: Re: New Meds or Trials???

My news... I saw my Prof today and told him I really didn't like the stem cell

transplant plan with odds of 7% fatality it was just too scary! He totally

understood and has suggested we look towards experimental meds now and see if i

can get on a trial. Tofacitinib was mentioned as his first choice! So our

research Was right! He's also contacting the consultants at the main

children's hospital in the country to ask for advice from the field of childhood

still's in case they have an idea. For now I'm carrying on with the Tocilizumab

whilst it's still helping the steroids to work for a little while, and adding

40mg oral pred to the 1000mg IV 4 weekly dose - so the daily equivalent of 85mg

to try to helpmwhilst he investigates. I'm back in 6 weeks to see what he's

found out... Thanks so much for all your help so far, and I'll continue to keep

you updated. New Meds are great news for all of us.

Suex

[Guest guest]

Hi ,

Unless we find something out from the children's hospital regarding treatment

for childhood still's ideas we can try, the next medication is highly likely not

to be specifically for still's - hence why you can't find still's specific info

about that with the first choice of med I mentioned. But there's some good info

on the net about the drug, and others in trial too, to explore if you're

interested.

Any medication is worth a try at this stage. I'm sure many of us have tried

other meds that aren't specifically for still's - licensed one's for RA for

example, it might just work?? So worth a go!

Please keep your hopes there for me that I get some good news regarding a new

med idea at my next visit. I'll try anything at this stage to get me off this

85mg daily equivalent of pred and to get some life quality back.

Suex

[Guest guest]

Hi ,

Unless we find something out from the children's hospital regarding treatment

for childhood still's ideas we can try, the next medication is highly likely not

to be specifically for still's - hence why you can't find still's specific info

about that with the first choice of med I mentioned. But there's some good info

on the net about the drug, and others in trial too, to explore if you're

interested.

Any medication is worth a try at this stage. I'm sure many of us have tried

other meds that aren't specifically for still's - licensed one's for RA for

example, it might just work?? So worth a go!

Please keep your hopes there for me that I get some good news regarding a new

med idea at my next visit. I'll try anything at this stage to get me off this

85mg daily equivalent of pred and to get some life quality back.

Suex

[Guest guest]

Hi ,

Unless we find something out from the children's hospital regarding treatment

for childhood still's ideas we can try, the next medication is highly likely not

to be specifically for still's - hence why you can't find still's specific info

about that with the first choice of med I mentioned. But there's some good info

on the net about the drug, and others in trial too, to explore if you're

interested.

Any medication is worth a try at this stage. I'm sure many of us have tried

other meds that aren't specifically for still's - licensed one's for RA for

example, it might just work?? So worth a go!

Please keep your hopes there for me that I get some good news regarding a new

med idea at my next visit. I'll try anything at this stage to get me off this

85mg daily equivalent of pred and to get some life quality back.

Suex

[Guest guest]

Hi Suex,

I was just responding to your post requesting any information people have heard

about this medication and hoping it may help.

“> I've just found a new one in trial - phase iii - called Tofacitinib. If

anyone has heard of this or any others do keep the info coming. > Suexâ€

~~~ ~~~

From: Sue

Sent: Thursday, April 19, 2012 11:27 PM

To: Stillsdisease

Subject: Re: New Meds or Trials???

Hi ,

Unless we find something out from the children's hospital regarding treatment

for childhood still's ideas we can try, the next medication is highly likely not

to be specifically for still's - hence why you can't find still's specific info

about that with the first choice of med I mentioned. But there's some good info

on the net about the drug, and others in trial too, to explore if you're

interested.

Any medication is worth a try at this stage. I'm sure many of us have tried

other meds that aren't specifically for still's - licensed one's for RA for

example, it might just work?? So worth a go!

Please keep your hopes there for me that I get some good news regarding a new

med idea at my next visit. I'll try anything at this stage to get me off this

85mg daily equivalent of pred and to get some life quality back.

Suex

[Guest guest]

Hi Suex,

I was just responding to your post requesting any information people have heard

about this medication and hoping it may help.

“> I've just found a new one in trial - phase iii - called Tofacitinib. If

anyone has heard of this or any others do keep the info coming. > Suexâ€

~~~ ~~~

From: Sue

Sent: Thursday, April 19, 2012 11:27 PM

To: Stillsdisease

Subject: Re: New Meds or Trials???

Hi ,

Unless we find something out from the children's hospital regarding treatment

for childhood still's ideas we can try, the next medication is highly likely not

to be specifically for still's - hence why you can't find still's specific info

about that with the first choice of med I mentioned. But there's some good info

on the net about the drug, and others in trial too, to explore if you're

interested.

Any medication is worth a try at this stage. I'm sure many of us have tried

other meds that aren't specifically for still's - licensed one's for RA for

example, it might just work?? So worth a go!

Please keep your hopes there for me that I get some good news regarding a new

med idea at my next visit. I'll try anything at this stage to get me off this

85mg daily equivalent of pred and to get some life quality back.

Suex

[Guest guest]

Hi Suex,

I was just responding to your post requesting any information people have heard

about this medication and hoping it may help.

“> I've just found a new one in trial - phase iii - called Tofacitinib. If

anyone has heard of this or any others do keep the info coming. > Suexâ€

~~~ ~~~

From: Sue

Sent: Thursday, April 19, 2012 11:27 PM

To: Stillsdisease

Subject: Re: New Meds or Trials???

Hi ,

Unless we find something out from the children's hospital regarding treatment

for childhood still's ideas we can try, the next medication is highly likely not

to be specifically for still's - hence why you can't find still's specific info

about that with the first choice of med I mentioned. But there's some good info

on the net about the drug, and others in trial too, to explore if you're

interested.

Any medication is worth a try at this stage. I'm sure many of us have tried

other meds that aren't specifically for still's - licensed one's for RA for

example, it might just work?? So worth a go!

Please keep your hopes there for me that I get some good news regarding a new

med idea at my next visit. I'll try anything at this stage to get me off this

85mg daily equivalent of pred and to get some life quality back.

Suex