I need any advice you have on going on Remicade medication

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peggy baggins
Regular Member


Date Joined Jul 2009
Total Posts : 153
   Posted 7/7/2009 7:00 PM (GMT -7)   
Hi there,
 
I'm a 53 year woman who was diagnosed with AS last August, I have suffered with lower back pain for years and thought nothing of it, only after 9 months of seeing various doctors for severe pain in my ankle was it discovered that I have had AS for at least 7 years and now quite progressive. During my time with my specialist we have tried everything and 6 months ago went on Humira injections (which helped the back issues alot). Unfortunately the right ankle/foot is still very painful and I've been unable to put a fully enclosed shoe on for 15 months! (still I'm used to wearing thongs type shoes through the winter now). 3 months ago I was put on Methotrexate along with Humira to see if this would help, still nothing. On my last visit to the specialist last week it was discussed that I need to start Remicade infusions as soon as I return from an overseas trip. Does anyone have any advice on it's effects on AS, side effects etc. All I know at the moment is that it involves a 3hour stint in the day surgery of my local hopsital to have it put in via the vein rather than injecting myself with humira in the stomach.  I would welcome any comments you have.
 
I am suffering from sickness and some hair thining with the methotrexate and humira, will Remicade have the same effect?
Peggy Baggins.

Alicat
Regular Member


Date Joined Aug 2008
Total Posts : 226
   Posted 7/8/2009 3:33 PM (GMT -7)   
My best friend's daughter has AS and was on Enbrel for some time but her doctor had to take her off of that and she has been having the Remicade transfusions with great success.   She exercises daily now and hasn't had any symptoms that I know of she's started the Remicade.   I think Remicade has the same warnings as most of the other TNF drugs.     I guess with these diseases eventually the risk of the drugs is less scary than the prognosis w/o them.
 
I myself have psoriatic arthritis and am on Humira.   My doctor is trying to get the insurance to approve shots for every week instead of every other as it's not working as well as it did before.   I was put on Methotrexate years ago with diclofenac and had to stop because of liver count.
 
Good luck and I  hope the Remicade helps.
 
Alica
psoriatic arthritis, peripheal artery disease


jujub
Forum Moderator


Date Joined Mar 2003
Total Posts : 10391
   Posted 7/8/2009 4:07 PM (GMT -7)   
I've been on Remicade for over three years, but for inflammatory bowel disease. Yes, there is an increase in the risk of lymphomas, but since the risk is tiny to begin with, the increase still doesn't make it at all likely that you will get it. The most common problems are allergic reactions. I've had no side effects other than mild tiredness the day of the infusion.

Hope it works well for you.
Judy
 
Ulcerative colitis forum co-moderator
 
Moderate to severe left-sided UC diagnosed 2001.
Flared for 5 years, finally in remission with Remicade since March 2006.
Avascular necrosis in both shoulders is my "forever" gift from steroids.
Colazal,  Remicade, Nature's Way Primadophilus Reuteri. 
"My life is an ongoing medical adventure"
 


peggy baggins
Regular Member


Date Joined Jul 2009
Total Posts : 153
   Posted 7/9/2009 12:51 AM (GMT -7)   

Thank you so much to the both of you for your replies.  It makes things easier to cope with knowing your not the only one going through these things.  I've not had a negitive response from anyone I've spoken to about this medication and treatment so I'm hopeful that I'm going to start feeling alot more normal than I have of late.  As my doctor said yesterday 'what other choice do I have"?  the good results from this treatment out way the side effects.  My life is seriously affected by AS and now have a permnant disabled sticker for the car. I just want to be able to wear a normal pair of shoes and be able to walk without pain  sad    I'll keep you posted.

Thank you once again.

Peggy Baggins :-)


Shanno
Regular Member


Date Joined Aug 2009
Total Posts : 64
   Posted 8/9/2009 5:49 PM (GMT -7)   
I was on Remicade for AS for quite a while - the hospital infusions worked quite well, with the exception of a few episodes where I would get intense stabbing pains in my back (around the kidneys) I moved onto Enbrel and they stopped, but Remicade worked really well to control the spinal pain of AS, though I have noticed that biologics really don't do anything at all for the fusion process and the pain related to it. I am now in Humira - it still works great for my spine, but my SIJ's and lower spine are now fusing, and it doesn't give me any relief from that at all

peggy baggins
Regular Member


Date Joined Jul 2009
Total Posts : 153
   Posted 8/9/2009 9:24 PM (GMT -7)   

Thank you for that, I'm so sorry your still suffering though sad    I do believe that I will never be pain free, but boy would it be nice to have just a little time every month where I would feel normal and be able to wear my Oh so pretty shoes and not feel so sick all the time along with the pain in my ankle/foot!!

AS certainly gives you a run for your money, the Remicade is the last thing that can be offered to me unfortunately as we have tried everything else.  I'm slowly coming round to the fact that I will just be like this for the rest of my life now and I'm adapting well.  My family have helped by trying to see the funny side of things, which helps sometimes but only family can get away with that..

I do hope that the Humira injections help you and should kick in if they are going to work after about 3 months. I'm on Humira and Methotrexate at the moment along with all the other drugs for various things. 

Here's to a good week for everyone... :-)


Shanno
Regular Member


Date Joined Aug 2009
Total Posts : 64
   Posted 8/13/2009 8:51 PM (GMT -7)   
I was put on Methotrexate for a while, though they made me very ill, like a zombie really...In Aust with the PBS if you 'fail' on a biologic they don't let you re apply for it for 3 years or something. When I changed from Remicade to Enbrel, I later found the the PBS had listed me as failed in my records, even though I had not. I was really hoping to leave it open in case I wanted to jump back on it, but no luck. I just made sure that when I switched from Enbrel to Humira that they confirmed that i had not 'failed' Enbrel as well.

How incredibly, stupidly bureaucratic it all is.

gonuts
Regular Member


Date Joined Jan 2008
Total Posts : 159
   Posted 8/14/2009 9:04 AM (GMT -7)   
cry I believe i have been dx with RA. But a new doc to the rhuemy practice said he wasn't convinced... I do have Fibromyalgia but that is mucle and tendons and fibrous tissue(exuse the spelling) I do have some form of arthritis in my spine which now is giving me some screaming now.

I was put on mtx and did awful on it. I was sick and my legs and arms felt like rubber and weak!! They took me off it right away!! Then they for some stupid reason Lyrica and Plaqunil at the same time...I unfortunately broke out in a rash!!! I am starting to get bumbed out... My sister in law has RA, Lupus and dip a lung disease and watching her really scares me knowing what she is going through,, I really hope the RA dx is wrong for me.!! I am really having a weak moment today, I am usually the strong one, but I guess I am just getting scared for my future.

I have one question: Does anyone before they even started meds... have the feeling of getting the stomach flu or getting a head flu from these diseases? I always feel nausaus of like i have a fever, especially when i was working.. I never knew why. confused

Well, thanks for listening. I know i will get back up eventually, just having a bad day i guess.


Laura sad
Cervical spine surgery 2004, C-section 1986, Cholecystectomy 1999, Thoracic and Lumbar injury 2000. Anxiety/depression 2008. Fibromyalgia 2009, Thyroidectomy 2008. Degenerative disc disease. IBS. Asthma, Rheumitoid Arthritis


Shanno
Regular Member


Date Joined Aug 2009
Total Posts : 64
   Posted 8/16/2009 11:19 PM (GMT -7)   
Laura

I to was nailed when I started on Methotrexate.....Absolutely munted!! Though I know people who swear by it, I got so sick, just thinking about it makes me want to hurl.

you say you feel fluey - what other meds are you on?? are you on TNF blockers?? Ive been on quite a few of NSAIDS and biologics and did feel a bit crappy when I started on them...have you started any new meds lately?

Otherwise, there are many, many times during the week when I just feel completely bombed out. Pain rides you like a mad baboon sometimes

Keep me posted and take care

ladywriter
Regular Member


Date Joined Jun 2009
Total Posts : 112
   Posted 8/17/2009 5:46 AM (GMT -7)   
Laura,
I have RA and I too had a terrible reaction to the Methotrexate (MTX) the first time I took it-basically felt like I had a very bad flu without the fever. Terrible joint and muscle pain, nausea, diarrhea, the works. I increased the Folic Acid I was prescribed from 1 mg to 3 mg (advice I got here) and it made all the difference in the world. I've been on MTX 8 weeks now, and it's just started to work. I went 4 days this week without significant pain in my joints, and I actually had energy for 4 and 5 hours at a time. I felt like I was in heaven!!! I took my weekly MTX Saturday night, and have the usual side effects, but they're getting to be much less as time goes by. Yesterday, I was just achy and tired, and for some reason the 2nd day after MTX is when I feel the worst, so I don't expect too much out of myself today. I'm just going to rest and catch up on daytime TV.

As far as flu symptoms before you were diagnosed, I had some symptoms before I was diagnosed with RA and put on meds, but I think I partly know why. I always felt worse on Monday mornings, and I think it was the shock of getting up so much earlier than I did over the weekend. My RA symptoms (pain and difficulty moving around) are much worse in the morning, especially if I haven't had enough sleep, and at that time I was sleeping 9 or 10 hrs a night and obviously that wasn't enough. I'm currently off work on short term disability and now sleep a minimum of 12 hrs a night, sometimes more. Before I got treatment, I was also in a lot of pain and had no appetite and nausea, but I think that the nausea was a direct result of the pain. It was bad enough that I lost 30 lbs in the 6-9 months before I started getting treatment. So those were my symptoms.

I have my weak moments too. I'm moving into a smaller, much cheaper apartment so I can save some money for a rainy day, because of the RA diagnosis. It's on the ground floor, because even though I haven't had trouble walking for several weeks, I figure I should be prepared in case I flare again. Also, I have some friends who live in the complex, so I can get help if I reach the point where I need it. Right now though, I'm slowly improving and will probably be well enough (according to my rheumy) by October to go back to work. It sometimes feel like 2 steps forward and 1 step back though. It can be really frustrating, and scary as h**l if I think about the future too much. So I just try to take it a day at a time.

Good Luck!!!
Ladywriter
Rheumatoid Arthritis, Chronic Pain, Chronic Major Depression, Generalized Anxiety Disorder, Schizoaffective Disorder, Recovered Alcoholic w/15 years Continuous Sobriety


ladywriter
Regular Member


Date Joined Jun 2009
Total Posts : 112
   Posted 8/17/2009 6:02 AM (GMT -7)   
Peggy,
I'm 49 and diagnosed with RA 3 months ago. I started IV Remicade a week and a half ago, and was tired to begin with, so I ended up sleeping through most of it. They checked my blood pressure several times, and I got to where I just stuck my arm out half asleep when they came in. It really wasn't that big of a deal. I brought a book and a blank notebook to write, and a little cooler with drinks, but mainly I just slept. I know it's early in my treatment with Remicade, but last week I started feeling significantly better. It could be that the Methotrexate (MTX) I've been on for 8 weeks is finally kicking in, or it could be the Remicade, or a combination of them both, but for whatever reason I'm feeling better and I love it!!!

It's too soon, I think, to know if there will be any hair loss, but so far I haven't noticed any. Someone who's been on Remicade can give you more information, but they told me at my rheumy's office that some people notice feeling better after the first dose of Remicade, but that most take 2-3 treatments before they notice a difference. I hope this helps. Good luck!!!

Ladywriter
Rheumatoid Arthritis, Chronic Pain, Chronic Major Depression, Generalized Anxiety Disorder, Schizoaffective Disorder, Recovered Alcoholic w/15 years Continuous Sobriety


peggy baggins
Regular Member


Date Joined Jul 2009
Total Posts : 153
   Posted 8/18/2009 4:16 AM (GMT -7)   

Dear Ladywriter

You've been most helpful and informative with a rough idea on what to expect.  I planned to take a good book to read with me and the idea of taking a note book to keep a record of how I'm feeling would help too. I've had nothing but positive responses to my questions both here and at the specialists, so I'm very hopeful, even if it's a relieve for a couple of weeks a month that would be good.  Your news of feeling better is wonderful and I'm really happy for you knowing what it's like with this disease.  I told my specialist yesterday about this site and how it's helped so much to know that I'm not alone with this, he agreed that anything that makes you feel better is a positive one.  After listening to him record his usual letters to various doctors etc after my visit I was shocked...it hadn't dawned on me until then just how many things I have wrong and how serious things are.  I don't mean that they will kill me but along with AS I have problems with my sight, heart, High Chloresterol, high blood pressure and insulin rest.disease... shakehead all genetic unfortunately.  The only thing (god forbid) that I don't have that my mother has is COPD!!!!!  but I've not been a smoker so that helps. :-)

Have a good day.

Peggy


ffluffygramma
New Member


Date Joined Aug 2009
Total Posts : 5
   Posted 8/23/2009 5:08 PM (GMT -7)   
I was on the Remicade for 3 1/2 years and I felt great after the first infusion. Had to stop taking it because it became inaffective for me. When I was getting them they would start the IV with Benadryl -to stop any side affects, so I always slept thru most of it. Just make sure you have someone drive you to & from until you know how it makes you feel. I'd go home and sleep for 4-5 hours until the groginess, from the Benadryl, went away. I wish you luck with the Remicade, for me it gave me a pain free 3 1/2 years.

Fluffygramma

peggy baggins
Regular Member


Date Joined Jul 2009
Total Posts : 153
   Posted 8/23/2009 8:55 PM (GMT -7)   

Thank you so much for your comments, they all help to make a bigger picture and let me know what I may expect.

Have a wonderful pain free day

 

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