Re: what med to try next?

[Guest guest]

Dear Ewelina,

I don’t know the expected range of time for Kineret to start working. You’re

doctor should really discuss this with you. I know that when I was on Remicade

and MTX I was told it would be months before I may see if it would help and my

doctor gave it 9 months before he stopped my treatments.

None of us can suggest what you try next dear because of our by-laws. We are not

doctors and cannot give advise. We can only share our experiences with you and

always suggest you ask/speak to your doctor(s)

I am also allergic to a pain medication but would hope there would be something

they could prescribe for your pain. Pain management is such an important part of

managing this disease.

I so hope that your results are able to give you some answers and whatever form

of treatments and medications are next that it works. Please tell your doctor

all your concerns financially about the medication co-pays as well as the other

questions you many have.

Please keep us up to date. Hugs,

From: ewelinasandulescu

Subject: what med to try next?

so its been 5 months since i started the treatments. i still have all my

symptoms, now that ive been off kineret (ive been on it for 5 weeks, n i didnt

feel any difference while taking it), now the pain got worse, turns out im

allergic to vicodin n ultram, so i cant take those, ive been using judoderm

patches but its a waste of money ;-

on Tuesday im finally seeing the u of m rheumatologist again, hopefully my dna

tests r back and i can prove to him that he was wrong, cuz this is not

Mediterranean fever.

i have 3 weeks supply of kineret left, and turns out the specialty pharmacy wont

take it back, and i dont know if its worth to go back on it for those three

weeks, because theres no way that im paying another 347$ for another month

supply, when humira is 5$.

and my next question is what should i try next? humira? cimzia? or just go

straight for actemra? what would you try ? i honestly need help and definitely

something that has copay assistance

and if theres anyone needing kineret, msg me please

-Ewelina

[Guest guest]

Kineret has been a difference maker for me, but it sounds to me like you

need a Dr that will work within " your " limits. I remember initially when

my insurance was fighting me getting Enbrel my RD was getting me samples.

Same goes for Kineret, Relistor, etc.....

Finding the " RIGHT " Dr took me close to 2 years, and that was just on the

Rheumatologist end of the deal. Pain Management took me nearly as long and

I went through 7 Neuro-Surgeons before I found one that " fits " . The only

times I have been lucky is that my original PCP was my Dr since I was a kid

and my new one was a man I knew prior to needing him as a Dr. Now I can

honestly say I'd sign away my life to the Dr's that I have now...I like

them and I trust them 100%.

Too bad it can be such a damn nightmare to get to this stage. I know many

on this list have Dr's that wouldn't care if they stayed or left but that

is life. It is up to each and every one of us to make sure we have what we

need in a situation such as this.

If you aren't thrilled with your Dr, ask those around your area who they

like. I've recommended 4 to my current RD, and 3 still see him..the 4th was

just too far away. Each of us wants and needs a certain type of Dr. I want

a tough, smart, " No Frills " type personally, while there are some who need

a Dr who is very careful with how he speaks to one. I'm about as rough on

the edges as one can get and I respect that attitude in others, although I

am not saying all of my Dr's are rough as such, just that they tolerate me

and treat me, which is what is the most important thing to me regarding

this illness from hell!

best of luck, sorry if I wandered a bit but i CAN NOT CONCENTRATE AT THE

MOMENT.

Kirk

> **

>

>

> Dear Ewelina,

>

> I don’t know the expected range of time for Kineret to start working.

> You’re doctor should really discuss this with you. I know that when I was

> on Remicade and MTX I was told it would be months before I may see if it

> would help and my doctor gave it 9 months before he stopped my treatments.

>

> None of us can suggest what you try next dear because of our by-laws. We

> are not doctors and cannot give advise. We can only share our experiences

> with you and always suggest you ask/speak to your doctor(s)

>

> I am also allergic to a pain medication but would hope there would be

> something they could prescribe for your pain. Pain management is such an

> important part of managing this disease.

>

> I so hope that your results are able to give you some answers and whatever

> form of treatments and medications are next that it works. Please tell your

> doctor all your concerns financially about the medication co-pays as well

> as the other questions you many have.

>

> Please keep us up to date. Hugs,

>

> From: ewelinasandulescu

> Subject: what med to try next?

>

> so its been 5 months since i started the treatments. i still have all my

> symptoms, now that ive been off kineret (ive been on it for 5 weeks, n i

> didnt feel any difference while taking it), now the pain got worse, turns

> out im allergic to vicodin n ultram, so i cant take those, ive been using

> judoderm patches but its a waste of money ;-

>

> on Tuesday im finally seeing the u of m rheumatologist again, hopefully my

> dna tests r back and i can prove to him that he was wrong, cuz this is not

> Mediterranean fever.

> i have 3 weeks supply of kineret left, and turns out the specialty

> pharmacy wont take it back, and i dont know if its worth to go back on it

> for those three weeks, because theres no way that im paying another 347$

> for another month supply, when humira is 5$.

> and my next question is what should i try next? humira? cimzia? or just go

> straight for actemra? what would you try ? i honestly need help and

> definitely something that has copay assistance

> and if theres anyone needing kineret, msg me please

>

> -Ewelina

>

>