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Medical Forum / Diseases and Disorders / Arthritis / June 2005switching biologics and question re: new RD
Hi all... it's been a while since I've posted. Life just passes by sometimes! But I'm having some trouble and hoping everyone can help. I am on enbrel and mtx. Doing pretty well. Just weaned off of pred. I moved to NC so I have a new RD now and she is very aggessive with treatment. She feels that any inflammation should be dealt with. I have mild swelling in my hands and one ankle consistently. No medications to date have been able to resolve these two problem areas. MY previous RD felt this was an ok trade off as I am very happy with my ability to do what I can and satisfied with my treatment. But the new RD feels that I'm settling for less than I should be. She feels that with the new drugs out there, most folks can be free of inflammation. Now, I have had JRA for more than 30 years and I threw away those rose colored glasses a long time ago. I've increased my mtx from 15 to 17.5, which helped me get off the pred. She just upped it to 20, which is causing more of the side effects (nausea, mouth sores, and fatigue - I'm on the injectable already and she has me on leucovorin. had been on 5mg folic acid). I see her again in 2 mths and if those two problem areas aren't better, she wants to switch the enbrel to either remicade or humira. My previous RD felt that the humira wouldn't have offered much of a difference for me and we didn't go the remicade route b/c I have three young children (dh and I split child care time) and a demanding work schedule - basically meaning that it will be very hard to schedule the 3+ hour infusion appts, even if they are 8 weeks apart. SO - my two questions are: 1. Am I settling? Are there really people out there who are absolutely inflammation free? with the new biologics? - I want to stress that I'm doing pretty well. Yes, I have a bit of pain but I can do most things in my daily life, including taking care of 4.5yr old twins and a 2 yr old. 2. for those who have switched between biologics, have you noticed marked improvement? was the switch worth it? ok, one last one: for those on remicade - has it been hard scheduling or dealing with the long infusions? thanks!!! alison In article <_c%re.2293$td.916526@twister.southeast.rr.com>, I am inflammation free with Enbrel...the down side is I can't stay infection free. I have a almost 3 year old daughter I can keep up with pretty well when I'm not flaring. If mtx is holding you well and you don't want to add a med then I would stick with mtx. For me enbrel was a lifesaver I felt immediately well (as well as a person with RA can feel). And boy do I know what you mean about scheduling remicade with small children...I'm trying to figure that out myself and I only have one. As for switching biologicals well I'll be able to tell you that at the end of the month when I start remicade.. melissa alisonamsb@nc.rr.com says... >>SO - my two questions are: >1. Am I settling? Are there really people out there who are absolutely [quoted text clipped - 9 lines] > >thanks!!! alison > Hi all... it's been a while since I've posted. Life just passes by > sometimes! But I'm having some trouble and hoping everyone can help. I am on [quoted text clipped - 24 lines] > pretty well. Yes, I have a bit of pain but I can do most things in my daily > life, including taking care of 4.5yr old twins and a 2 yr old. That's hard to say. Could be that this is as good as it gets for you, or there "may" be something better. Only you know for certain, and maybe you won't until you try something else. > 2. for those who have switched between biologics, have you noticed marked > improvement? was the switch worth it? When I switched from Arava to Remicade (2000), the improvement was shocking. I went from barely being able to walk to being able to run across a parking lot. However, after 2.5 years I "reacted" to Remicade. Doesn't happen to everyone, but seems that it is more common with Remicade than other drugs (usually if you don't react the first couple of time you won't ever react). You may need to take an anti-histamine (i.e., Claritin, I was on Atarax). > ok, one last one: for those on remicade - has it been hard scheduling or > dealing with the long infusions? I enjoyed the 2.5 to 3 hours for the infusion. It was very relaxing to me, of course at the time I worked for Human Services (food benefit and medical eligibility), so any "down" time was greatly appreciated. > thanks!!! alison Smokie Darling (Annie) >>>When I switched from Arava to Remicade (2000), the improvement was shocking. <<< Thanks for the reply... I would think this would be natural to have a big improvement since the biologics are much better than the simple dmards like arava. But since I'm already on a biologic (enbrel), I wasn't sure if I'd see much more of an improvement. From what I've read and heard in the past, the biologics are so specifically made that they basically mirror each other in terms of how they work. The traditional dmards have a wide variance of effectiveness person to person... alison > >>>When I switched from Arava to Remicade (2000), the improvement was > shocking. <<< [quoted text clipped - 8 lines] > > alison Well, Remicade worked wonders and Enbrel (touch wood) seems to be doing equally as well. Humira never helped me. In fact Humira seemed to make my RA worse, including quite possibly the worst RA flares I have ever experienced. I was on it for about 4 months before I started manifesting neurological problems and was taken off of it. Found out later that the phone calls to the doctor's office had never been given to him, only a nurse. I should have been taken off after I started showing a second side effect. I still have some balance and cognitive issues that are almost directly attributable to my adverse reaction to Humira. Here's hoping that you do well on Humira. So far as I know, I am the only person I know of who had the reactions I've had to Humira. Smokie Darling (Annie)< <allergic to the weirdest stuff hi alison, i'm with you, girlfriend. i'm on arava and a large dose of remicade and still have lots of infalmmation. yet i'm very happy about all i can do i could not do before. my doc pushes for a better and better response, but i've come to believe it's just not going to happen for me. on the other hand, if you haven't tried the biologics, i think you owe it to yourself to do so. you might be one of the people who get complete relief with them. . .and you won't know until you try it. good luck, diane That's where I am right now... I just don't like messing with a good thing and I do think I'm doing well now... I am always afraid I'm going to go from one drug to the next looking for something better and not getting it. what happens if the drugs no longer work for me? What do I do then? Right now, at least I'd have two other meds to try out... BTW, I'm already on enbrel. And I think I'm doing fine but the dr thinks it could be better, hence the talk about the other two biologics. been on enbrel since 2001, with a 9month break durng pregnancy. - alison >>>my doc pushes for a better and better response, but i've come to believe it's just not going to happen for me. on the other hand, if you haven't tried the biologics, <<< My RD just added a dose of Rituxan to the Remicade and Arava and pred I take. So far I have not noticed a difference but he says it can take 3-4 months. The rituxan is 4 doses delivered once a week for a month and then not again for a year. Maybe that is the thing to do -- to add one more rather than stop the one you know is working for you. You might email your doctor to look into the Rituxan as an addition to your present mix. I am heading out of town for the moment [Portland Gimpfest] but I am sure my RD would be happy to talk with yours. Duckie > Hi all... it's been a while since I've posted. Life just passes by > sometimes! But I'm having some trouble and hoping everyone can help. I am on [quoted text clipped - 32 lines] > > thanks!!! alison  Signature_('> (_<_) _ _('< -quack (_<_) _ __('< *QUACK!* <_{__) _('< "|,,|_" (_<_) _('< "AFLAC!" (_<_) I just read about this. I found it very interesting but didn't realize you could be taking other heavy hitters with it. I will definitely bring this up to my RD next visit. I found the research promising - I didn't think it was FDA approved yet though? Thanks for sharing your experiences. - alison >>>My RD just added a dose of Rituxan to the Remicade and Arava and pred I take. <<< |
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