Guest guest Posted November 5, 2011 Report Share Posted November 5, 2011 Hi All- Haven't posted in a while. Wanted to give you an update and get some feedback. 1) I stopped MTX back in Aug- my liver enzymes were way up and I was anemic and feeling sick all the time. 2) Finally got approved for Enbrel in September; 3) I've made it through 6 weekly doses; but after conferring with my pharmacist and then my Rheumy- we agreed to stop 4) I noticed a severe change in my mental outlook (depression/mood changes/sadness)- I've been going through a really tough time with finances/travel for work/mother-in-law passing away.......but still the changes I felt were affecting more than my normal easygoing manner.....my suspicions were confirmed by a therapist who did an initial evaluation........I also lost about 7lbs this past month which I know is not the normal reaction to enbrel as well. 5) So the Rheumy says to stop the enbrel and we'll talk about it next week when I go for my blood work. 6) We started down the MTX/Enbrel path because of Iritis; which even after 6 doses of enbrel is now back and being treated with pred. drops. 7) My local pharmacist who is also trained in homeopathy says that alot of his patients on biologics experience similar affects. 8) He has provided me with some pretty good natural remedies and they are helping. Just wanted to see if any of you experienced similar effects from the biologics........ Best Regards -Larry Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 5, 2011 Report Share Posted November 5, 2011 Larry,It sounds to me as if quite a few of your symptoms may be Still's related a possibly not from the biologics? Of course your doctors will and should be the best to determine this. I too was very anemic, had the insomnia, depression, anxiety and many other symptoms that relate to a flare with Still's. I wasn't on the newer biologics at the time. It was in the late 70's and early 80's when the Penacillamine came out and weaned me off the steroids.I hope they can find the medication that works best for you my friend. Please keep us posted on what they/you choose in the end and how it works for you.Hoping you the best, melly To: Stillsdisease From: lg2207@... Date: Sat, 5 Nov 2011 14:26:48 +0000 Subject: Question About Enbrel (or similar) & Depression/Mood Changes Hi All- Haven't posted in a while. Wanted to give you an update and get some feedback. 1) I stopped MTX back in Aug- my liver enzymes were way up and I was anemic and feeling sick all the time. 3) I've made it through 6 weekly doses; but after conferring with my pharmacist and then my Rheumy- we agreed to stop 4) I noticed a severe change in my mental outlook (depression/mood changes/sadness)- I've been going through a really tough time with finances/travel for work/mother-in-law passing away.......but still the changes I felt were affecting more than my normal easygoing manner.....my suspicions were confirmed by a therapist who did an initial evaluation........I also lost about 7lbs this past month which I know is not the normal reaction to enbrel as well. Just wanted to see if any of you experienced similar effects from the biologics........ Best Regards -Larry Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 5, 2011 Report Share Posted November 5, 2011 Hi Larry, Sounds like you have had a rough time. So sorry to hear about all the changes and the problems with the medicines. I have had problems with biologics also. To the point where I have sworn them off for now. For as long as I can. It seems like every time I am given a new medicine, I have some weird reaction to it, sometimes one that isn't even reported, so I can relate to how you are feeling. Have you tried Sam-E for depression? I am guessing it might have been one of the first things your friend suggested. Anyway, hugs and prayers are coming your way. Hang in there, Alli Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 6, 2011 Report Share Posted November 6, 2011 Hi... I have been using Enbrel since June. When I started it, my Rheumy stated she would have me use it for at least 4 months before making any changes in my meds because it can take that long to start feeling the effects. I have noticed a change in my mood - I have always tended to pick my " battles " wisely and have been finding that I don't have the motivation/drive for many battles. What I used to think was important really isn't - I focus on items involving my health. An somewhat unusual side effect of Enbrel that I've experienced is a change in the hair. I have had straight, fine hair all my life. Over the course of the past 4 months, my hair has become wavy (people have asked if I got a perm). I'm just thankful that Enbrel seems to be helping. Hoping that your appointment with your Rheumy brings some relief:) Leanne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 7, 2011 Report Share Posted November 7, 2011 Hello Larry, I have been on various biologic medications for over four years (diagnosed in 2006). Currently I am on Rituxan every 4 months and it so far has worked the best in reducing the vast array of symptoms related to Stills. I have had some reduction in my total WBC count but otherwise no noted symptomatic reactions. I had difficulty previously with Methotrexate both oral and IM and cellsept. I had no improvement with Arava. I am off prednisone but I still require Celebrex and oral analgesics particularly as the day progresses into evening and night. My weight has been stable and my activity level better than the previous biologics which included; Kinaret, Humira, Orencia, and Actemra. The most frequent complication so far has been loss of effectiveness of the medication over time. Harry S. To: Stillsdisease From: lg2207@... Date: Sat, 5 Nov 2011 14:26:48 +0000 Subject: Question About Enbrel (or similar) & Depression/Mood Changes Hi All- Haven't posted in a while. Wanted to give you an update and get some feedback. 1) I stopped MTX back in Aug- my liver enzymes were way up and I was anemic and feeling sick all the time. 2) Finally got approved for Enbrel in September; 3) I've made it through 6 weekly doses; but after conferring with my pharmacist and then my Rheumy- we agreed to stop 4) I noticed a severe change in my mental outlook (depression/mood changes/sadness)- I've been going through a really tough time with finances/travel for work/mother-in-law passing away.......but still the changes I felt were affecting more than my normal easygoing manner.....my suspicions were confirmed by a therapist who did an initial evaluation........I also lost about 7lbs this past month which I know is not the normal reaction to enbrel as well. 5) So the Rheumy says to stop the enbrel and we'll talk about it next week when I go for my blood work. 6) We started down the MTX/Enbrel path because of Iritis; which even after 6 doses of enbrel is now back and being treated with pred. drops. 7) My local pharmacist who is also trained in homeopathy says that alot of his patients on biologics experience similar affects. 8) He has provided me with some pretty good natural remedies and they are helping. Just wanted to see if any of you experienced similar effects from the biologics........ Best Regards -Larry Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 7, 2011 Report Share Posted November 7, 2011 Hello Larry, I have been on various biologic medications for over four years (diagnosed in 2006). Currently I am on Rituxan every 4 months and it so far has worked the best in reducing the vast array of symptoms related to Stills. I have had some reduction in my total WBC count but otherwise no noted symptomatic reactions. I had difficulty previously with Methotrexate both oral and IM and cellsept. I had no improvement with Arava. I am off prednisone but I still require Celebrex and oral analgesics particularly as the day progresses into evening and night. My weight has been stable and my activity level better than the previous biologics which included; Kinaret, Humira, Orencia, and Actemra. The most frequent complication so far has been loss of effectiveness of the medication over time. Harry S. To: Stillsdisease From: lg2207@... Date: Sat, 5 Nov 2011 14:26:48 +0000 Subject: Question About Enbrel (or similar) & Depression/Mood Changes Hi All- Haven't posted in a while. Wanted to give you an update and get some feedback. 1) I stopped MTX back in Aug- my liver enzymes were way up and I was anemic and feeling sick all the time. 2) Finally got approved for Enbrel in September; 3) I've made it through 6 weekly doses; but after conferring with my pharmacist and then my Rheumy- we agreed to stop 4) I noticed a severe change in my mental outlook (depression/mood changes/sadness)- I've been going through a really tough time with finances/travel for work/mother-in-law passing away.......but still the changes I felt were affecting more than my normal easygoing manner.....my suspicions were confirmed by a therapist who did an initial evaluation........I also lost about 7lbs this past month which I know is not the normal reaction to enbrel as well. 5) So the Rheumy says to stop the enbrel and we'll talk about it next week when I go for my blood work. 6) We started down the MTX/Enbrel path because of Iritis; which even after 6 doses of enbrel is now back and being treated with pred. drops. 7) My local pharmacist who is also trained in homeopathy says that alot of his patients on biologics experience similar affects. 8) He has provided me with some pretty good natural remedies and they are helping. Just wanted to see if any of you experienced similar effects from the biologics........ Best Regards -Larry Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 7, 2011 Report Share Posted November 7, 2011 Hello Larry, I have been on various biologic medications for over four years (diagnosed in 2006). Currently I am on Rituxan every 4 months and it so far has worked the best in reducing the vast array of symptoms related to Stills. I have had some reduction in my total WBC count but otherwise no noted symptomatic reactions. I had difficulty previously with Methotrexate both oral and IM and cellsept. I had no improvement with Arava. I am off prednisone but I still require Celebrex and oral analgesics particularly as the day progresses into evening and night. My weight has been stable and my activity level better than the previous biologics which included; Kinaret, Humira, Orencia, and Actemra. The most frequent complication so far has been loss of effectiveness of the medication over time. Harry S. To: Stillsdisease From: lg2207@... Date: Sat, 5 Nov 2011 14:26:48 +0000 Subject: Question About Enbrel (or similar) & Depression/Mood Changes Hi All- Haven't posted in a while. Wanted to give you an update and get some feedback. 1) I stopped MTX back in Aug- my liver enzymes were way up and I was anemic and feeling sick all the time. 2) Finally got approved for Enbrel in September; 3) I've made it through 6 weekly doses; but after conferring with my pharmacist and then my Rheumy- we agreed to stop 4) I noticed a severe change in my mental outlook (depression/mood changes/sadness)- I've been going through a really tough time with finances/travel for work/mother-in-law passing away.......but still the changes I felt were affecting more than my normal easygoing manner.....my suspicions were confirmed by a therapist who did an initial evaluation........I also lost about 7lbs this past month which I know is not the normal reaction to enbrel as well. 5) So the Rheumy says to stop the enbrel and we'll talk about it next week when I go for my blood work. 6) We started down the MTX/Enbrel path because of Iritis; which even after 6 doses of enbrel is now back and being treated with pred. drops. 7) My local pharmacist who is also trained in homeopathy says that alot of his patients on biologics experience similar affects. 8) He has provided me with some pretty good natural remedies and they are helping. Just wanted to see if any of you experienced similar effects from the biologics........ Best Regards -Larry Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 9, 2011 Report Share Posted November 9, 2011 Thank you for the feedback......Alas, I must tell you of my experience with Kineret......it tried very hard to literally KILL me...yes...that one too...back in the late Spring/Summer of 2008 when I was undergoing my time in ICU in Comas mechanically ventilated.....turns out Kineret was the major culprit...at least the second bout anyway..found out later that when I went to the ER, was immediately transferred to ICU and put on the vent (actually the vent was put IN me), I had a White Blood Cell count of TWO....yep: TWO.....and i am sure they killed them with the count!! LOL When it was all over some eight weeks later or so, i returned to the RD who had placed me on Kineret.....he just couldn't believe it.....he wanted me to continue on the Kineret and taper my Prednisone just as quickly as possible! Uh Huh....Fired him on the spot!! My new RD at least follows my logic that Enbrel is the root cause this time.....at any rate, my body just will not tolerate ANYTHING beyond prednisone and Imuran (thank God i can take those!)...i truly believe my Alpha-1 Pulmonary condition is responsible. So now my approach with doctors and my own research is from this angle! Thanks for your input though! God Bless! Larry Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 11, 2011 Report Share Posted November 11, 2011 Dearest Val! Hey! I appreciate your exchange of information, kind words and prayers! I am also very thankful that you genuinely care! You are a good soul! God Bless! Larry B. ________________________________  Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 11, 2011 Report Share Posted November 11, 2011 Dearest Val! Hey! I appreciate your exchange of information, kind words and prayers! I am also very thankful that you genuinely care! You are a good soul! God Bless! Larry B. ________________________________  Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 11, 2011 Report Share Posted November 11, 2011 Dearest Val! Hey! I appreciate your exchange of information, kind words and prayers! I am also very thankful that you genuinely care! You are a good soul! God Bless! Larry B. ________________________________  Quote Link to comment Share on other sites More sharing options...
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