Medical Forum / Diseases and Disorders / Arthritis / July 2005
Enbrel Bulletin Board?
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mdrawson - 13 May 2005 00:26 GMT Does nayone know of an Enbrel Bulletin Board, chat room or NG, other than what the manufacturer has?
Harvey R. Stone - 13 May 2005 00:34 GMT > Does nayone know of an Enbrel Bulletin Board, chat room or NG, other than > what the manufacturer has? Hi M,,,, Yes, there are so many people here taking Enbrel that you might say this newsgroup was but the truth of it would be there are many DMARDs taken and talked about here. Do you or yours take Enbrel? I do for several years. Harv
mdrawson - 13 May 2005 15:22 GMT I was on Remicaid for about 8 months before we discovered it was making the RA worse --- counteracting any benefits --- so we quit and I switched to Enbrel. After 4 doses of that, I got some significant site reaction as well as a body rash, and the doc is now doing some lab work to see what, if anything, is happening re that. I anticipate being back on Enbrel shortly, however, and was looking for an Enbrel-specific bulletin board to follow what experience others are having with Enbrel. I see very little on this NG re Enbrel, and so was inquiring about other sites.
>> Does nayone know of an Enbrel Bulletin Board, chat room or NG, other than >> what the manufacturer has? [quoted text clipped - 4 lines] > Do you or yours take Enbrel? I do for several years. > Harv diclidophora@yahoo.co.uk - 13 May 2005 19:09 GMT Hi there.
Personally I think that an anti-TNF bulletin board/NG would be a very good thing. Not just enbrel, but for anybody taking these biological drugs. There might be quite a lot going on that we patients don't get to hear about and it could be very informative to know something about the experiences of other people.
Peter
> I was on Remicaid for about 8 months before we discovered it was making the > RA worse --- counteracting any benefits --- so we quit and I switched to [quoted text clipped - 13 lines] > > Do you or yours take Enbrel? I do for several years. > > Harv RoseB - 14 May 2005 00:06 GMT >I was on Remicaid for about 8 months before we discovered it was making the >RA worse --- counteracting any benefits --- so we quit and I switched to >Enbrel. What were your symptoms? Was it just an exascerbation of joint pain, stiffness, and etc. I have recently had to stop remicade as well because after almost 5 years the Rd felt that my RA was becoming recalcitranrt. I get severe pain, redness, and swelling in the lower extremeties. The skin becomes too tender to even touch or run water on as in a shower. The Rd said he had never seen such a thing in all his years as an Rd.
Now I am on arava and mtx, and am not doing well at all. I don't want to go into my symptoms, but just will say that I feel as badly as I did when I first had RA and was treated only with NSAIDs thirty plus years ago. I have now been on arava for 6 weeks. I want to switch to enbrel badly as I have things to do and places to go. I know that it can take up to three months in some cases for arava to take effect. I don't want to wait that long as I can tell that my hands and etc are changing.
I am just not sure I can continue doing what I am doing like this. R ( a wilted weary rose) Rose @}>->-- Being educated means that rather than fearing the unknown, one seeks to understand it. RB
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Gwen Love - 14 May 2005 00:35 GMT Rose, sorry to hear that bad news. Terrible that even a shower hurts. Do hope you can get on something that will work quickly. Gwen
> >I was on Remicaid for about 8 months before we discovered it was making the > >RA worse --- counteracting any benefits --- so we quit and I switched to [quoted text clipped - 22 lines] > > Please remove "Ima" to reply. d'huit - 14 May 2005 01:01 GMT >>I was on Remicaid for about 8 months before we discovered it was making >>the [quoted text clipped - 7 lines] > as in a shower. The Rd said he had never seen such a thing in all his > years as an Rd.
> Now I am on arava and mtx, and am not doing well at all. I don't want > to go into my symptoms, but just will say that I feel as badly as I [quoted text clipped - 8 lines] > R ( a wilted weary rose) > Rose @}>->-- (((((((((((((((((((((major rose hugs))))))))))))))))))))))))))) i'm so sorry it's been so bad for you, sweetie. geesh, after 30 years of RA, i'd think your doctor would just go to the newer biologics for you. i can't believe he didn't. has he told you why he didn't?
kate (wishing something would work for you quickly, rose, or that your doctor changes his mind, suddenly, and puts you on one of the newer drugs.)
> Being educated means that rather than fearing the unknown, one seeks > to understand it. RB > > Please remove "Ima" to reply. Duckie - 14 May 2005 01:11 GMT Is it because of the way Canada manages their approvals. I am guessing that Humira and Abbacept [sp] and a few more my brain is not letting me access are not available there yet. Just guessing. Duckie
> (((((((((((((((((((((major rose hugs))))))))))))))))))))))))))) i'm so > sorry it's been so bad for you, sweetie. geesh, after 30 years of RA, i'd [quoted text clipped - 9 lines] >> >> Please remove "Ima" to reply.
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RoseB - 14 May 2005 01:24 GMT >Is it because of the way Canada manages their >approvals. I am guessing that Humira and Abbacept [sp] >and a few more my brain is not letting me access are >not available there yet. Just guessing. >Duckie It is. I have to have failed everything else first before I can go on the biologics. I got to go on remicade in 2000 as part of a special program so I bypassed the system. My doctor was hoping that I would not have to try arava, but he had to do things by the book.
Rose @}>->-- Being educated means that rather than fearing the unknown, one seeks to understand it. RB
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d'huit - 14 May 2005 13:06 GMT >>Is it because of the way Canada manages their >>approvals. I am guessing that Humira and Abbacept [sp] [quoted text clipped - 8 lines] > > Rose @}>->-- bummer, hon. when you are through with arava, then will you be able to try something newer?
kate
> Being educated means that rather than fearing the unknown, one seeks > to understand it. RB > > Please remove "Ima" to reply. Smokie Darling (Annie) - 14 May 2005 19:13 GMT > >Is it because of the way Canada manages their > >approvals. I am guessing that Humira and Abbacept [sp] [quoted text clipped - 11 lines] > > Please remove "Ima" to reply. Hi Rose, sorry to hear about the troubles with Remicade... I was on Arava (twice). I'd have said both times that it wasn't working, until I was taken off of it. I hated what it did to my liver, even using Milk Thistle (150 mg twice a day).
I've been on Enbrel for 5 weeks (6th week shot is this coming Wednesday). I noticed a difference right away (the next day). So far, so good. I hope, pray, sing, that you can be put on to it quickly. So far, touch wood, I have had no negative effect.
Humira hit me "off stride" almost imeediately (started with injection site reactions and butterfly rash on the face then moved upward and onward to neurologic problems with vision, balance, taste).
I believe my insurance wanted me on Arava for a minimum of 6 months (so long as liver levels were alright). I think I lasted about 5. I hope with your coverage that you can be switched within a couple of months if the Arava doesn't work.
You have my utmost sympathy with the pain. I've been there, almost exactly like yours (except mine is the bottom of my feet feeling like I'm walking on broken glass... isn't that a line from a song?). Yes, I've been tested for diabetes (negative and a bunch of other stuff as well).
Smokie Darling (Annie)
nikki - 01 Jul 2005 23:18 GMT {{{rose}}}
well, then now there's a reason to come of the Arava and start on Enbrel I would think? Before the RA gets any worse and will do even more damage to your joints? I am sorry you have to go through all this
Nikki
>>Is it because of the way Canada manages their >>approvals. I am guessing that Humira and Abbacept [sp] [quoted text clipped - 11 lines] > > Please remove "Ima" to reply. RoseB - 02 Jul 2005 01:51 GMT >{{{rose}}} > [quoted text clipped - 3 lines] > >Nikki I have been off arava for all of June. I was getting a reboud effect, or refractive effect where the arava made my RA worse. Within a short period of time after stopping, I improved. But now over time things are starting to change again, and me esr and crp are still high. I will be starting enbrel as soon as I watch the dvt and do the injection. I have the enbrel and everything now, just waiting for me to do it.
Rose @}>->-- Being educated means that rather than fearing the unknown, one seeks to understand it. RB
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Duckie - 14 May 2005 01:05 GMT {{{{{{{{{{{{{{Rose}}}}}}}}}}}}}}} Duckie
> What were your symptoms? Was it just an exascerbation of joint pain, > stiffness, and etc. I have recently had to stop remicade as well [quoted text clipped - 19 lines] > > Please remove "Ima" to reply.
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diclidophora@yahoo.co.uk - 14 May 2005 11:15 GMT Rose.
I am sorry to hear about the failure of remicade and hope you will find something else which is effective. Can I ask how your ESR/CRP and platelets are ?
Peter
> >I was on Remicaid for about 8 months before we discovered it was making the > >RA worse --- counteracting any benefits --- so we quit and I switched to [quoted text clipped - 22 lines] > > Please remove "Ima" to reply. RoseB - 14 May 2005 16:39 GMT >Rose. > [quoted text clipped - 3 lines] > >Peter Last labs ESR was 68 CRP 33
I don't know about platelets.
I am not that concerned about ESR as the time before it was 88.
But the CRP is a concern, because, according to my doc, that is very high and puts me at increased risk for heart attack and stroke. Anything above 15 for a CRP is in category 5 which is the highest risk. I am going for labs today. Rose @}>->-- Being educated means that rather than fearing the unknown, one seeks to understand it. RB
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diclidophora@yahoo.co.uk - 14 May 2005 18:33 GMT Rose.
Thanks for the figures. Interesting. Looking back I note that my CRP was 100 in Augusr 03 and before that it hit 99 in January 02. Nobody here worried about it (except me and mine) - But that's the UK for you !
Usually the platelet count also goes up with increased inflammation.
I do hope you find something else that is effective. Can you get on to a humira trial, or maybe one of the newer biologics which are supposed to be effective when the existing drugs fail.
Peter
> >Rose. > > [quoted text clipped - 19 lines] > > Please remove "Ima" to reply. RoseB - 14 May 2005 21:57 GMT >Rose. > >Thanks for the figures. >Interesting. Looking back I note that my CRP was 100 in Augusr 03 and >before that it hit 99 in January 02. Nobody here worried about it >(except me and mine) - But that's the UK for you !
>Peter Wow! The biggest concern of course is for MI or stroke. Read the following:
In studies involving large numbers of patients, CRP levels seem to be correlated with levels of cardiovascular risk. In fact, CRP seems to predict cardiovascular risk at least as well as cholesterol levels do. Data from the Physicians Health Study, a clinical trial involving 18,000 apparently healthy physicians, found that elevated levels of CRP were associated with a threefold increase in the risk of heart attack.
In the Harvard Women's Health Study, results of the CRP test were more accurate than cholesterol levels in predicting coronary problems. Twelve different markers of inflammation were studied in healthy, postmenopausal women. After three years, CRP was the strongest predictor of risk. Women in the group with the highest CRP levels were more than four times as likely to have died from coronary disease, or to have suffered a nonfatal heart attack or stroke. This group was also more likely to have required a cardiac procedure such as angioplasty (a procedure that opens clogged arteries with the use of a flexible tube) or bypass surgery than women in the group with the lowest levels.
CRP Risk for Cardiovascular Disease Less than 1.0 mg/L Low 1.0-2.9 mg/L Intermediate Greater than 3.0 mg/L High
from: http://my.webmd.com/content/article/101/106045.htm
So a reading of 100 would be very significant. I have looked for more information regarding these numbers, but there is none that is really specific. I have seen info regarding CPRs at or above 100 in cases of severe trauma such as following thr, where there is a period of very high crp, with a peak of about that level, followed by a sharp decline. Therefore in those cases it would be relatively normal to have a CRP that is that high.
The danger for coronary problems increases when there are also high cholesterol readings. According to
:http://jama.ama-assn.org/cgi/content/abstract/290/22/2945 CRP is also indicated in the development of hypertension.
C-reactive protein was significantly associated with an increased risk of developing hypertension in all prespecified subgroups evaluated, including those with very low levels of baseline BP, as well as those with no traditional coronary risk factors. Similar results were found when treating C-reactive protein as a continuous variable and controlling for baseline BP.
Rose @}>->-- Being educated means that rather than fearing the unknown, one seeks to understand it. RB
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mdrawson - 16 May 2005 00:42 GMT With Remicaid, I started with infusions every 8 weeks, but after a while it had to be every 6 weeks as well as a dosage increase. But the flare ups then came after just 2 weeks, and after considering another dosage increase taken every 4 weeks, the doc did some labs and discovered the Remicaid was worsening the RA, not improving it.
We switched to Enbrel after a hiatus to get the Remicaid out of the system, but I'm off that after just 4 injections to figure out the site reactions and rash. I've been on Arava as well since before the Remicaid, and that alone seems to control things fairly well but doesn't reduce the inflamation. Doc is considering switching me to Methatrexate (instead of Arava, I think), if I can't take Enbrel.
Are you taking both Aravada and Methatrexate? I thought it was one or the other but not both....
>>I was on Remicaid for about 8 months before we discovered it was making >>the [quoted text clipped - 24 lines] > > Please remove "Ima" to reply. RoseB - 16 May 2005 02:05 GMT >Are you taking both Aravada and Methatrexate? I thought it was one or the >other but not both.... No I am taking both. 25 mgs of mtx and the arava. Things have changed since arava was first approved and now they use different combinations than were in use before.
Rose @}>->-- Being educated means that rather than fearing the unknown, one seeks to understand it. RB
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Harvey R. Stone - 16 May 2005 04:24 GMT >>Are you taking both Aravada and Methatrexate? I thought it was one or the >>other but not both.... [quoted text clipped - 4 lines] > > Rose I think there are two sizes of Arava. Which one do you take Rose? Harv
RoseB - 16 May 2005 05:03 GMT >I think there are two sizes of Arava. Which one do you take Rose? >Harv 30 mgs i think it is. Rose @}>->-- Being educated means that rather than fearing the unknown, one seeks to understand it. RB
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Nann Bell - 16 May 2005 14:22 GMT > Are you taking both Aravada and Methatrexate? I thought it was one or the > other but not both.... I also was on Arava and mtx (20 mgs of each) for a while as I couldn't afford the biologics without Rx insurance. We've changed that now, as I have coverage for Enbrel, but I was on the other combo for 3 years. I was diligent about not drinking (except Gimpfests, LOL) and took milk thistle religiously to keep my liver happy. But I'm glad to have dropped the Arava for Enbrel so I can eat more fruit and veggies without the digestive side effects and so I can drink something more like once a month again!
 Signature Nann remove the Gator cheer to email me Simply the thing I am shall make me live --- William Shakespeare
Squirrely - 17 May 2005 01:56 GMT Rose I hope something works for you soon. You are in my heart and prayers
 Signature Love and hugs to all Good thoughts coming your way too.
Squirrely Jo
>>I was on Remicaid for about 8 months before we discovered it was making >>the [quoted text clipped - 24 lines] > > Please remove "Ima" to reply.
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