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cc^
New Member


Date Joined Dec 2005
Total Posts : 18
   Posted 1/11/2006 1:14 PM (GMT -7)   
Hi everyone:
I have been reading the posts for several days now, but decided it was time to introduce myself. I am a 29 yr old female........ (and have been holding that age for 26 yrs lol yeah )

I was diagnosed with RA in 1968 at age 18 and was told that, by the amount of joint damage I already had, I had probably had it at least 6 yrs by then. I had synovectomies on both hands in 1971 and a bone spur removed from left thumb in 1972.

I went on gold injections in 1969-70 until 1977. I have also been on METHOTREXATE, ARAVA and REMICADE and am going to try HUMIRA starting today or tomorrow. I have heard some wonderful (and some scary) things about all of the aforementioned medications. I am willing to take some risks, providing I get some benefits. I got none from the METHOTREXATE alone, nor the ARAVA, and the positive results with the REMICADE were short lived.

I fully realize that no medication is going to help my joint damage (I have full body affectation..neck, shoulders, elbows, wrists, hands, spine (spondylolisthesis), knees, ankles and feet. *Touch wood*, no problem with hips. Since May of last year, when I told my rheumatologist I wasn't willing to take risks with no benefit....I have been only taking aspirin to take the edge off, so I am being guardedly optimistic about the HUMIRA, and hoping it will level out my 'discomfort' if nothing else. I would love to be able to sleep through the night...it's been so long, I have forgotten what it was like.

My heart goes out to all of you and the support I have seen here is wonderful. As someone mentioned, family is not always understanding, and who can blame them...they have no comprehension of what we actually go through. The only ones who truly know, are those who have been afflicted with the same condition(s). After reading many of the posts, I feel fortunate to be in the shape I am in.

OK I am off to the pharmacy to pick up my first delivery of HUMIRA, and will keep you posted.

Take care
hugggggs to all
=^.,.^= Cindy


curley
Veteran Member


Date Joined Mar 2005
Total Posts : 4305
   Posted 1/11/2006 1:35 PM (GMT -7)   
Cindy Hi and welcome to HW,I'am sorry that you are having all these problems.I take Humira and have been for almost two year's and I gotta tell you it is worth every penny.I have crohm's,RA,OA and sjerense disease as well.In 03 I was in a wheel-chair and I give full credit to Humira it gott me out of that wheel-chaire.It does burn some what when you give your self a shot but it only last for a few minutes.I wish you lot's of luck.Please let us know how it goes for you.
Thanks
Curley......
a.k.a.Mela...........


cc^
New Member


Date Joined Dec 2005
Total Posts : 18
   Posted 1/11/2006 10:15 PM (GMT -7)   
Thanks Curley, for the welcome.

So many of you have so many problems, so I feel fortunate to only have to deal with RA. Thanks for the encouraging words of how HUMIRA helped you. An infusion buddy from my REMICADE group had very positive results, and I have heard of others too from my support person at Progress.

I made it to the pharmacy, collected my HUMIRA and headed back to a neighbor's who is a registered nurse. She watched me give myself my injection and then invited me to stay for steak dinner...her son and his wife had just returned from two months in Europe. It was a pleasant evening but I left early because I knew I was very tired and should get to bed at a decent time.

By the way, I am in Canada, so I know the FDA is a lot slower here approving medications, but as I said I am guardedly optimistic on the Humira. It took me a little while to get the courage to poke that needle in my tummy, but having injected METHOTREXATE in the past, I knew I could do it, and the neighbor was great at encouraging me and helping me relax.

Thanks again
=^.,.^= Cindy


straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 13451
   Posted 1/12/2006 7:18 PM (GMT -7)   
Hey Cindy, Here is to Humira helping you. You have done the other gambit-so Humira will help help you I hope. I too have read good responses to Humira. I am only Remicade for CD, if it stops working maybe Humira will be next. I have oa in all my major joints. Had a pain pump implanted 6-29-05 due to the pain being so severe. Let us know about the Humira. I do not know how long it takes before you can tell if its helping. Hugs, Susie


cc^
New Member


Date Joined Dec 2005
Total Posts : 18
   Posted 1/12/2006 11:48 PM (GMT -7)   
Hi Susie:

I am going to stay optimistic on the HUMIRA......mind over matter and all that yeah

I am so sorry that you are in so much pain. I hope the REMICADE keeps working for you for your CD..I know it has worked for a lot of people but unfortunately I wasn't one of them, other than a brief reprieve from the pain in my shoulders early in my treatments, but sadly that didn't last long.

The thing with me, compared to most of the others I met during my infusions, is the length of time I have been battling this disease. Most of them were 10 yrs or less while I have been a veteran for 43 years or so. Perhaps each of the meds I have been on has done some small bit to delay the advancement, so I can't help but be grateful for the shape I am in. I know that no med will help with the joint damage I have, but that is a secondary thing...I am just hoping to have the pain eased.

I will certainly keep in touch and hopefully will hear from others about their experiences with HUMIRA. One of my REMICADE infusion buddies started on it in September and she said it was so wonderful to walk without pain, she had forgotten what that was like. Her response was very rapid, and according to my support specialist with the HUMIRA program, it can be rapid or it can apparently take 3 months or more. If it will work for me....I am more than willing to wait :-)

Take care and keep smiling
hugggggs,
=^.,.^= Cindy


cc^
New Member


Date Joined Dec 2005
Total Posts : 18
   Posted 1/30/2006 11:11 AM (GMT -7)   
Hi

I have now had my second injection of HUMIRA (Jan 25th) and although I don't notice any major changes, and didn't really expect to this soon, I feel as if the pain in my right shoulder has eased somewhat.
I believe my shoulders were probably the last joints to be affected so that is maybe why I seemed to feel improvement in them early in my REMICADE infusions, but sadly that didn't last.

I am going to remain cautiously optimistic of the HUMIRA and give it a good chance. yeah

I hope that anyone/everyone else starting out on new meds will feel improvement, and to those who have been feeling improvement already, I hope it continues.

Best wishes to all
hugggggs,
=^.,.^= Cindy


Ducky
Veteran Member


Date Joined Mar 2005
Total Posts : 3199
   Posted 1/30/2006 5:49 PM (GMT -7)   
Hey Cindy, way to keep a positive attitude! Good luck, and let us know how it goes! - Duck
Diagnosed January 2005 - Psoriatic Arthritis/Spondylitis
-Currently taking 50mg shot weekly of Enbrel
Diagnosed May 1998 - Graves Disease
-Complete Thyroidectomy September 1998 - While 11 weeks pregnant
Other Complications - GERD/Scoliosis/Hiatal Hernia/Graves Disease of the Eyes
Current Meds -  Enbrel/Prevacid/Synthroid
Past Meds - Inderal/PTU/Prednisone/Voltaren/Feldene/Mobic/Cortisone and Steroid Shots


cc^
New Member


Date Joined Dec 2005
Total Posts : 18
   Posted 1/30/2006 10:39 PM (GMT -7)   
Thanks Duck, will definitely keep you posted and remain optimistic :-)
hugggggs,
=^.,.^= Cindy


erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 1/31/2006 1:24 PM (GMT -7)   
hey there cc,
i've bee taking Humira since august & i am now on it weekly.  it is true that for some, results are early and noticeable.
i will keep this post on the positive side and mention that for myself...the Humira since being on it, has improved RA related fatigue by i would say 80%!!!  i cannot really say much more about it than that...but everyone is different and i pray it delivers the whole package for ya!
stay positive!  i'm happy for you.
sincerely,
erin
Active, Severe RA. Crohns Disease. Chiari Malformation & Right Brain venous anomoly. Emphysema. Rheumatic Lung. MVP and Tricuspid prolapse. Had Lymes disease for 10 years.
Meds: Humira 40mg every 4 days; pred; Pentasa; Imuran; dilaudid; diazepam & too many others.


cc^
New Member


Date Joined Dec 2005
Total Posts : 18
   Posted 1/31/2006 2:58 PM (GMT -7)   
Hi erin:

Thanks for the info. I was on REMICADE for 18 months (with mtx, which I had started on in '01) and altho the REMICADE gave me reason to be optimistic after about 4 infusions, by easiing the pain in my shoulders, it didn't last. I pulled myself off both mtx and REMICADE last May because I wasn't willing to risk the possible side effects with no benefits.

I also pulled myself 'off the rheumy' because she insisted that I was doing well on the meds. She doesn't live in my body, and having battled this disease for about 43 yrs I am well aware of when I feel improvement. She had also insisted that I had been on PREDNISONE, which I never have been and if I can possibly help it, never will be. The last straw came when she told me that my pain had nothing to do with RA, but that I had fibromyalgia. I walked out the door and found a new rheumy and I am quite impressed with her (she actually knows how to smile...and listen) LOL.

Even if the HUMIRA assists with the fatigue I will be VERY happy erin, and of course any pain relief will be wonderful and welcome. I know that each med works differently for each individual, and I know too, not to be too optimistic about any major results because I realize a lot of my pain is from joint damage. The surgeon who did my synovectomies in 1971 told me I should have at least 3-4 of my finger joints replaced but that I was far too young. I know that I have damage in my wrists (they are almost completely 'seized'...virtually no flex/movement in either one), elbows and feet.

I have run the gamut with meds in the past 35-40 yrs and have also tried numerous 'home remedies'. I feel like a guinea pig or walking pharmacy tongue but I am game to give most anything a try if it will help.

Thanks again for your response erin
hugggggs,
=^.,.^= Cindy


curley
Veteran Member


Date Joined Mar 2005
Total Posts : 4305
   Posted 2/5/2006 5:46 PM (GMT -7)   
Hi,Just stay posative it will start working and some times it may take a month are maybe a little longer.A lot of times it depend's on the person.I was on it about six week's before I started notice and change.But one thing is for sure it is well worth the money.Keep us posted on how you are doing....................................................................................................
Thanks
Curley......
a.k.a.Mela...........


cc^
New Member


Date Joined Dec 2005
Total Posts : 18
   Posted 2/6/2006 9:14 AM (GMT -7)   
Hi curley:

Thanks for the note. I truly am positive about the HUMIRA, but I also have enough med experience and sense not to expect any miracles. Any improvement is always welcomed :-)

I'm so glad the HUMIRA has been good for you and all the others it has helped and I feel badly for those who have reacted to it, or any other med that might have eased their symptoms. I saw a long-term REMICADE infusion buddy react after having been on it for 3 yrs or more...and that has to be very frightening, not to mention frustrating. Thank goodness we took the infusions under the care of well-trained nurses who responded instantly when he had his reaction, and he had no lasting effects.

Thank goodness for medical coverage for these meds....here in Canada the costs would be crippling without our healthcare insurance. sad REMICADE was $2800 every 8 weeks and HUMIRA is $1340 every month. I don't know how they compare in the USA. I have read varying figures but haven't had any direct info from a user of either.

I am currently awaiting word on my next shipment. It was scheduled to arrive Feb 3, but as of this writing, I still have had no word on it, but the Progress Program Staff are on the case and I am sure it will arrive in time for my injection on Wednesday.
~wishing you HEALTH and HAPPINESS~

hugggggs,
=^.,.^= Cindy


gail878
New Member


Date Joined Dec 2005
Total Posts : 14
   Posted 2/7/2006 6:03 AM (GMT -7)   

hi- this is gail - haven't been on in a while..daughter (27) sick since she was 8  with CD - but since I can't many people on humira for cd, decided to ask RA patients for advice - she started taking humira early december (nothing else has been working - had colon removed 6 years ago and was all better until last April when relapsed - now in small intestine and esp bad around stoma site - still on 6 mp though doesn't seem to do any good & had disastrous reaction to Remicade) - took 80 mg first dose 12/8, then switched to 40 mg every other week - had immediate fantastic positive respone to the 80mg - wore off after 12 days - then mixed response to the 40 - doc upped it to 40 every week - now he wants to up it to 80 mg every week - is anyone out there on that high a dose - if so, what's been the reaction?  any concerns?

thanks so much for any advice/support you can offer? 


erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 2/7/2006 9:01 AM (GMT -7)   

Hi Gail,

Good to hear from you, but of course not under the circumstances!  So the Crohns is really bad in the small intestine?  That's where mine is @ the worst as well.

From personal experience: I'm taking Humira 40mg every 3 to 4 days now and Imuran 50mg daily plus Pentasa 500mg X4 and prednisone 30mg daily.  This is what my GI wants to do to get a grip on the small intestine.

Being on the higher dosage of Humira I do believe is helping. In fact, I think it is benefitting the Crohns more than the RA!  Although I still get terrible bouts of diarrhea and horrific cramps.  But they do seem to be spreading out and not every single day.

I think 80mg every week is OK.  I basically do that.  For example 40mg on Monday and then another 40mg injection Thursday.  Or pretty much if I can go the whole 4 days I will without it...but when I feel the joints getting unruly I shorten the intervel. 

He's also hoping this will further help the RA flare and joint problems along with the CD.

Does your daughter have to take the 80mg on the same day? Or can she take one shot one day and the other say 3 days later?

Best wishes.  I know this is difficult and so frustrating.

Erin



Active, Severe RA. Crohns Disease. Chiari Malformation & Right Brain venous anomoly. AS. Emphysema. Rheumatic Lung. MVP and Tricuspid prolapse. Had Lymes disease for 10 years.
Meds: Humira 40mg every 4 days; pred; Pentasa; Imuran; dilaudid; diazepam; Avanza 30mg & too many others.


missie1227
Veteran Member


Date Joined Nov 2005
Total Posts : 751
   Posted 2/7/2006 4:52 PM (GMT -7)   
saw rhuemy doc today. told me taht i was hlab27 NEGATIVE. but i obviuosly have psoriaris on my skin and my mom had and i have sometihng foing on with my spine.
he just stood there and said to me you have fibro
he didnt suggest prednosine or immuran.
he sadi if you want to give it  a shot try the humaira.
gave me a script for it and sadi he would test me for celiac sprue and sed rate again.
so now i am even more confused that ever.
he says he needs to ge tthe go ahead form the insruacne co for the humaira as it is 1500 a month for two shots. i got a caard from abbott that says i can get a 300 month off the bill if i activate it.
HUH? 1500 a month for 2 shots?
and then a 'card' from abbott for 300 off the first 6 months?
HLAB27 negative?
then what in the hell is wrong with me?
i know this is not in my head.
i know the pain i have is real in my spine.
i have negative xray for sacroillitis.
my mom had PA and celiac sprue by brudder has it also.
can you still have PA without the test coming out positive?
 
9-02 crash w/ C-5-6-7 anterior/posterior fusion in neck w/11 screws and 4 metal plates. multilevel HNP at T & L section. FMS, PA in dec 05. SSI approved after 2.5 yr wait. sezuires, CTS, etc. on norco, xanax etc. i dont know what else is wrong with me and neither does anyone else!!!


Ducky
Veteran Member


Date Joined Mar 2005
Total Posts : 3199
   Posted 2/7/2006 6:15 PM (GMT -7)   
Hey Missie - yes you can have PA without the test coming out positive... I am HLA-B27 negative... I have PA and spondylitis... Did your rheumy even suggest Enbrel? It has made a world of difference for me... PA also affects the spine and can mimick the feelings of Ankylosing Spondylitis... If I were you, I'd see if I could get a 2nd opinion and see what that rheumy says... I take Enbrel and it is $1200.00 a month for 4 shots... Take one 50 mg shot a week... it has done wonders for me... good luck to you, let us know what you decide... - Duck
Diagnosed January 2005 - Psoriatic Arthritis/Spondylitis
-Currently taking 50mg shot weekly of Enbrel
Diagnosed May 1998 - Graves Disease
-Complete Thyroidectomy September 1998 - While 11 weeks pregnant
Other Complications - GERD/Scoliosis/Hiatal Hernia/Graves Disease of the Eyes
Current Meds -  Enbrel/Prevacid/Synthroid
Past Meds - Inderal/PTU/Prednisone/Voltaren/Feldene/Mobic/Cortisone and Steroid Shots


gail878
New Member


Date Joined Dec 2005
Total Posts : 14
   Posted 2/7/2006 6:44 PM (GMT 0)   
erin - thanks so much for your info and understanding..it is hard to watch her suffer and of course I worry about long term effects of all these drugs...can't understand why doc wants to keep her on 6mp (since last April) even though it doesn't seem to be doing anything - he says it might be and if we took her off, CD might get even worse??
 
anyway, I really appreciate being able to communicate on this website..thanks again

erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 2/7/2006 7:04 PM (GMT -7)   
missie,
i thought Enbrel was used for PA?  but the doc Rx Humira?  i could be wrong, but i thought Enbrel was approved for psoriatic arthritis.  i'm going to look it up, maybe this is new.  but i thought Humira was for RA, Crohns and colitis only.
Imuran and prednisone wouldn't benefit fibromyalgia from what i know.
don't get too upset with the blood tests.  many times diagnoses are made on objective physical findings and the labs are all negative! and then there are people with all the positive labs and minimal physical findings.  not a nice thing to go through...not at all.
i would definitely question why Humira and not Enbrel for the PA.
 
hang in there! 
Active, Severe RA. Crohns Disease. Chiari Malformation & Right Brain venous anomoly. AS. Emphysema. Rheumatic Lung. MVP and Tricuspid prolapse. Had Lymes disease for 10 years.
Meds: Humira 40mg every 4 days; pred; Pentasa; Imuran; dilaudid; diazepam; Avanza 30mg & too many others.


erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 2/7/2006 7:09 PM (GMT -7)   

hey Gail,

sounds like the doc doesn't want to find out what will happen if he pulls her off the 6MP!  i can't blame em either!  perhaps the 6MP isn't making things better...but perhaps it's keeping things from getting absolutely horrific!  like me & the Humira...i've been on 2 TNFs over 2 years and they do not seem to be making anything BETTER...but the docs are thinking that by being off of them...it would be worse.

i was off enbrel for a month and it did get worse...so i know i definitely do better on a TNF than off.

gee wiz!


Active, Severe RA. Crohns Disease. Chiari Malformation & Right Brain venous anomoly. AS. Emphysema. Rheumatic Lung. MVP and Tricuspid prolapse. Had Lymes disease for 10 years.
Meds: Humira 40mg every 4 days; pred; Pentasa; Imuran; dilaudid; diazepam; Avanza 30mg & too many others.


missie1227
Veteran Member


Date Joined Nov 2005
Total Posts : 751
   Posted 2/7/2006 7:21 PM (GMT -7)   
erin- the doc says now PA can be treated with humiara shots now and it says so on the literature about humiera/ he have me a CD rom to look and a VCR tape to watch and hand bag for the refrigerator and all the inserts for the side effects. I dont know what to do. he says how is he going to justify the humiera with the insurance company if i am neg for the HLAB27?
he says i only tried you on the mobic and that you cant take that because of stomach effects....he got defensive to me and said he was a good rhuemy and was from the mayo clinic, i said i dont question your ability, but am concerned about not being properly dx. he never brought up the fact that you can be neg and have PA also


9-02 crash w/ C-5-6-7 anterior/posterior fusion in neck w/11 screws and 4 metal plates. multilevel HNP at T & L section. FMS, PA in dec 05. SSI approved after 2.5 yr wait. sezuires, CTS, etc. on norco, xanax etc. i dont know what else is wrong with me and neither does anyone else!!!

Post Edited (missie1227) : 2/7/2006 7:33:08 PM (GMT-7)


erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 2/7/2006 7:48 PM (GMT -7)   

a-hah!  very cool.  so this is new!  having a diagnoses of PA should be enough for the processing of Humira.  you should have no problem....let him worry about the coding!

let your weary head lay down for the night!  this is enough to stress a person out to the max.

good things will come your way.  once everything gets settled with the injections...we hope for the best.

take good care.


Active, Severe RA. Crohns Disease. Chiari Malformation & Right Brain venous anomoly. AS. Emphysema. Rheumatic Lung. MVP and Tricuspid prolapse. Had Lymes disease for 10 years.
Meds: Humira 40mg every 4 days; pred; Pentasa; Imuran; dilaudid; diazepam; Avanza 30mg & too many others.


Ducky
Veteran Member


Date Joined Mar 2005
Total Posts : 3199
   Posted 2/8/2006 6:25 AM (GMT -7)   
Yeah my rheumy said that Humira can be prescribed for PA, however, Enbrel is better... He said that if I couldn't tolerate the Enbrel, then we would go to Humira... I to am curious as to why your rheumy would prescribe Humira first... the Enbrel is cheaper (somewhat) and you get 4 shots a month versus 2... see if you can see a different rheumy... Everyone is entitled to a second opinion... regardless of where he came from, he may not have much experience with patients similar to you and PA... good luck
Diagnosed January 2005 - Psoriatic Arthritis/Spondylitis
-Currently taking 50mg shot weekly of Enbrel
Diagnosed May 1998 - Graves Disease
-Complete Thyroidectomy September 1998 - While 11 weeks pregnant
Other Complications - GERD/Scoliosis/Hiatal Hernia/Graves Disease of the Eyes
Current Meds -  Enbrel/Prevacid/Synthroid
Past Meds - Inderal/PTU/Prednisone/Voltaren/Feldene/Mobic/Cortisone and Steroid Shots

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