Guest guest Posted April 25, 2010 Report Share Posted April 25, 2010 I know quite a few Stilligans are trying Actemra--what's the consensus so far? Is it helping anyone yet? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 26, 2010 Report Share Posted April 26, 2010 Hello Everyone, I have had three IV infusions of Actemra. The first infusion was at 4mg/kg body weight the second and third at 8mg/kg. So far this is the best I have been. Life is still not like before I was ill but sometimes I almost feel like my old self. The first couple of days following an infusion are really not bad. Afternoon and evenings start to feel achy and annoying but I can tolerate most of the symptoms better on Actemra than the other biologics I have had. As an IL-6 blocker expect a jump in cholesterol particularly LDL and VLDL. I went from total cholesterol of 185 to 235 on Actemra and now my primary care is thinking of a statin to control my cholesterol. My daily prednisone dose is 1mg/day with an occasional celebrex if I anticipate a busy day. In summary, the best med I have had to date and it has a co-pay plan. Harry S. To: Stillsdisease From: khall@... Date: Mon, 26 Apr 2010 05:25:54 +0000 Subject: Actemra Question I know quite a few Stilligans are trying Actemra--what's the consensus so far? Is it helping anyone yet? _________________________________________________________________ The New Busy think 9 to 5 is a cute idea. Combine multiple calendars with Hotmail. http://www.windowslive.com/campaign/thenewbusy?tile=multicalendar & ocid=PID28326:\ :T:WLMTAGL:ON:WL:en-US:WM_HMP:042010_5 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 26, 2010 Report Share Posted April 26, 2010 , I'll be getting my 3rd dose on Thursday. The first two were at 4mg/kg,this next one will be at 8mg/kg. It has been the best,and fastest working drug I've ever been on. And i've pretty much been on them all! I get achy/fluish feeling, but nothing major. It has caused me to have transient increases in my liver functions. My liver has enlarged,which I'm sure is due to the Actemra. I'm still on MTX. Unfortunately I now have another diagnosis of 'Auto-immune Neutropenia " ,and that has been pretty scary. I have to get weekly shots of Neupogen or Neulasta (which stimulate your bone marrow to kick out more neutrophils). The bone pain is horrible,but my heme/onc doctor has given me oral dilaudid to use for the days after I get the shot. I don't really have a choice,and dying of septic shock is not my idea of a good time. I've been in the hospital several times with Neutropenic Fever,to get IV antibiotics. I go to the Oncology floor in the hospital I work at. Its been a very difficult adjustment,not that Still's is any walk in the park. I have run out of FMLA,and have applied for a special accomodation through Human Resources,so I can work fewer hours,and less days. I just can't work 10 hour shifts anymore. I thought I might apply for partial disability to make up what I'm losing,not working full time. We'll see. My partner is having a VERY hard time with everything having gotten worse,and life threatening. She needs to find her own path to peace,with these shitty diseases. I wish everyone well,and am sorry I've been off the radar. Love, Nissa To: Stillsdisease From: khall@... Date: Mon, 26 Apr 2010 05:25:54 +0000 Subject: Actemra Question I know quite a few Stilligans are trying Actemra--what's the consensus so far? Is it helping anyone yet? _________________________________________________________________ The New Busy think 9 to 5 is a cute idea. Combine multiple calendars with Hotmail. http://www.windowslive.com/campaign/thenewbusy?tile=multicalendar & ocid=PID28326:\ :T:WLMTAGL:ON:WL:en-US:WM_HMP:042010_5 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 27, 2010 Report Share Posted April 27, 2010 Nissa, I'm so glad Actemra is helping but very, very sorry to hear about your relationships problems and the neutropenia. Egads, I had to look the latter up--never heard of it before and it sounds awful. So let me get this straight... you have to deplete your immune system to control the still's but you have to beef it up to control the neutropenia??? Isn't that the classic caught between a rock and a hard place? I finally applied for LT disability this year (it's still pending) to cover a nine month leave of absence from work. My plan was to return to work in September, but I'm four months into my leave and still feeling like crap and getting no relief, so I really can't say what the future will hold. Maybe a remission on Actemra? I'm glad you checked in Nissa--you and I are both infrequent visitors here, but I do think of you and always wish you well. in Maine > > > , > I'll be getting my 3rd dose on Thursday. The first two were at 4mg/kg,this next one will be at 8mg/kg. It has been the best,and fastest working drug I've ever been on. And i've pretty much been on them all! I get achy/fluish feeling, but nothing major. It has caused me to have transient increases in my liver functions. My liver has enlarged,which I'm sure is due to the Actemra. I'm still on MTX. > Unfortunately I now have another diagnosis of 'Auto-immune Neutropenia " ,and that has been pretty scary. I have to get weekly shots of Neupogen or Neulasta (which stimulate your bone marrow to kick out more neutrophils). The bone pain is horrible,but my heme/onc doctor has given me oral dilaudid to use for the days after I get the shot. I don't really have a choice,and dying of septic shock is not my idea of a good time. I've been in the hospital several times with Neutropenic Fever,to get IV antibiotics. I go to the Oncology floor in the hospital I work at. Its been a very difficult adjustment,not that Still's is any walk in the park. I have run out of FMLA,and have applied for a special accomodation through Human Resources,so I can work fewer hours,and less days. I just can't work 10 hour shifts anymore. I thought I might apply for partial disability to make up what I'm losing,not working full time. We'll see. > My partner is having a VERY hard time with everything having gotten worse,and life threatening. She needs to find her own path to peace,with these shitty diseases. > I wish everyone well,and am sorry I've been off the radar. > > Love, > Nissa > > To: Stillsdisease > From: khall@... > Date: Mon, 26 Apr 2010 05:25:54 +0000 > Subject: Actemra Question > > > > > > > > > > > > > > > > > > > > > > > > > > > > > I know quite a few Stilligans are trying Actemra--what's the consensus so far? Is it helping anyone yet? > > > > > > > > > > > > > > > > > > > > > _________________________________________________________________ > The New Busy think 9 to 5 is a cute idea. Combine multiple calendars with Hotmail. > http://www.windowslive.com/campaign/thenewbusy?tile=multicalendar & ocid=PID28326:\ :T:WLMTAGL:ON:WL:en-US:WM_HMP:042010_5 > > Quote Link to comment Share on other sites More sharing options...
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