update on my flare

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

golitho
Veteran Member


Date Joined Sep 2008
Total Posts : 1670
   Posted 11/23/2009 8:36 PM (GMT -7)   
Hi everyone,
 
I haven't been around much lately, my RA flare has been getting progressively worse and its taking all my energy to cope with it plus all my end of academic year requirements...
 
But... my rheumy finally listened to my GP. I'd told her (My rheumy) a month ago I was getting worse but its like she couldn't hear me until I went to my GP last Friday and showed her my swollen joints and said help. She rang the rheumy and now its all action! I saw her today and shes going to apply to change my meds from humira to inflixamab. Shes put me back on steroids in the meantime and then she flippantly says about my wrists " oh you'll probably have to get them fused!"
 
I love my rheumy usually, shes sympathetic and caring but I was so taken aback! Anyway, I'll just deal with all the rigmorole of changing meds. I had to go get swabs done and bloodwork done, had to go get my humira scripts from the chemist and post them back to the rheumy, now she can apply for the change.
 
Inflixamab is an infusion you have in hospital so its a pretty concentrated dose and shes hoping it will give me the relief I had originally with humira.
 
I'm in so much bone gnawing pain in so many of my joints I feel like I'm a walking zombie. I hate taking all these toxic meds at the best of times, I just want them to work like they're suppose to. Whats the point of putting up with all these toxins with no relief!
 
As you can tell I'm feeling like an Aussie battler. Battling along trying to cope with it all.
I'm sorry I'm completely out of touch with whats happening to you all in the last couple of weeks, but I do think of you all and hope you're doing ok. golitho

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 13479
   Posted 11/23/2009 9:45 PM (GMT -7)   
Aw Golitho, I am so sorry your RA is giving you such a hard time. I ran in to a lady I know today and sh is has RA and she said she has been having such a difficult time with it lately and just plain miserable.
 
I sure hope the Remicade helps you out. I did Remicade every infusions every 4 weeks for 3 1/2 years due to crohns. I went off of it and ended back on it because of a fistula. Then I ended up with Lupus induced by the Remicade. I do hope it works for you. I called it my liquid gold for a long time. Now, I am on Humira.
 
Take care and let us know how you do.


[color=blue>

<FONT>crohns disease dx 2002 & small bowel resection, still looking for remission whatever that is, chronic pain 22 yrs, added ulcerative colitis 6-05 to the mix, high blood pressure 28 yrs, aortic heart valve insuffiency, depression, osteoarthritis, osteoporosis lumbar spine, scoliosis lumbar spine, peripheral neuropathy hands & feet, COPD & on oxygen therapy, lupus & psoriasis and psoratic arthritis. Several other health issues just not enough room to list it all. Too many surgeries to list and too many medications to list. Currently on 17 different daily medications. Intrathecal pain pump implanted June 05.


White Beard
Forum Moderator


Date Joined Feb 2009
Total Posts : 3611
   Posted 11/23/2009 10:08 PM (GMT -7)   
Golitho
I really hope those infusions work for you, RA can be such a difficult disease to treat! I do hope you will get some relief soon! I am glad to see you back posting! I sure do wish you well with this!!! Please Be good to yourself and I will say a prayer that you start feeling better soon!



I certainly wish you all the BEST!!!



White Beard

babycakes-
Regular Member


Date Joined Nov 2009
Total Posts : 94
   Posted 11/24/2009 2:45 AM (GMT -7)   
 
 
 
Golitho - Hope Your Feeling Better
Take Care
Erin
XOXO
~ Love Always; Erinxo

Loin Pain Haematuria Syndrome  - A Painful & Rare Kidney Disease .
 
 ^-^
Finish Each Day & Be Done With It. You Have Done What You Could. You've Tried Your Best. 
Tomorrows A New Day; Begin It With A Smile
 


bsjaguar
Veteran Member


Date Joined Jun 2009
Total Posts : 974
   Posted 11/24/2009 5:10 AM (GMT -7)   
Golitho, I don't have RA but I know enough about it to understand your situation & pain levels.  I hope the new med helps bring you some relief.  Typing is probably very difficult for you now but please keep us posted when you can and remember we're here for you when you need us.

---Jag---
 
DDD, osteoarthritis, fusion surgeries C-5/7 & L-4/5 both in 2006, torn meniscus left knee 2000 & 2002, buldging disc L-2/3


Chartreux
Veteran Member


Date Joined Aug 2006
Total Posts : 9622
   Posted 11/24/2009 1:04 PM (GMT -7)   
Golitho.
Lots of soft healing "meowy" hugz coming your ways...Hope the infusion will help...
Posts when you can....Prayers...
(((((((((((((((((((((((((((((((((((Golitho)))))))))))))))))))))))))))))))))))))))))))))))))))))
**********************************************
* Asthma, Allergies, Osteoarthritis, Spinal Stenosis, Degenative Disc (Lower Lumbar S1-L3 and Cervical C5,C6, C8 and T1), Fibromyalgia, Gerd,
Enlarged Pituitary Gland, Sjogren's, Ocular Migraines, mild carpel tunnel, ect.... "Would be nice if we could use the edit button in real life"...

********>^..^<********>^..^<********>^..^<********


golitho
Veteran Member


Date Joined Sep 2008
Total Posts : 1670
   Posted 11/24/2009 4:27 PM (GMT -7)   
Thank you guys for your support. Hey Susie, doesn't the humira affect the lupus? I thought that it could also induce lupus? Seems amazing that remicade can cause those side effects while humira doesn't.
 
I'm a bit worried about the infusions, the time it takes to have them and plus you have to be well to have them not just so that I don't get sicker with my low immunity levels but also so that I don't give a bug to others being infused. I'm worried because I catch so many chest infections. Every time I've missed humira I've ended up in a worse state. I know I can hear you all" don't worry until it happens" Right?
 
Thanks Char for the meowy hugs, my cat nearly devoured my arm this morning in his impatience at how slow I am to feed him with my wrists!
 
Thanks, Praying, Jag, Erin and WB, its just been such a long downhill run for me, I'm hoping my rheumy can get the approval before Christmas. I'm really tired.
 
Being an artist (although I haven't made any art for months) I'm so worried I won't get my wrists back to some form of normalcy. I need to draw to destress. Ok I'll stop panicking, I'm sure the remicade will work miracles. I guess we all hate to get worse, shame the HRT didn't work.
 
It seemed too easy the surgery, I really thought I was going to just sail right through it all. Had my ovaries removed for those of you that don't know my history, bad ovarian cysts and endometriosis. Those symptoms are now wonderfully gone but no estrogen or the surgery or the loss of RA meds during the recovery or all three has plummetted me into this flare.
 
Seemingly if the rheumy fails me on humira then there is some other even more expensive med out there she can try. but first she'll try the remicade. Thanks again, everyone for your lovely replies, golitho

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 13479
   Posted 11/24/2009 8:58 PM (GMT -7)   
Hi Golitho,
 
Yes, Humira can cause Lupus too. So, my rheumy already had me on meds for Lupus by the time I started on Humira. Its one of those double edge sword things I guess. But, the flip side is I cannot be without the Humira.
 
Since you are new to Remicade infusions let me pass along a few pointers for you to consider. Take a book, or something to entertain yourself with. You might consider taking a snack if you are a snack type person because you will be at the facility awhile. I went to the hopsital for my infusions, they fed me breakfast and ordered lunch for me. I had to be there by 7:00am and I was usually done by 2 or 3. It was an all day affair since the hospital was 30 miles away. I had to get there early because I had to register each time I went, big pain in the butt when they were busy too. I would also suggest that you get a mask and wear it especially if you catch things easy. If you are going to be around other people you never know who may be sick.
 
I am sure you have read up on Remicade and as all biologics go there is a possibility of your immune system being lowered somewhat. But, that does not mean Remicade will do it with you. The weird thing for me was while on Remicade, I never got sick, even my horrible sinus infections went away. I did not have an increase in infections at all, just the opposite. I also took good care of myself and I did avoid being out in crowds especially during the flu season here. If I walked into a drs office and they were crowded I explained the drugs I was on and asked to either be put in a room by myself or I went outside and waited and told them to come get me when it was my turn.
 
I had a severe reaction to Remicade on my third infusion which is typical for one. What happened was when the nurse went to increase the rate of the IV drip I had the reaction. I became very short of breath and had chest and arm pain.  I had been laying in a bed which you should not ever do we learned that, lol. Always be sitting in a recliner but not flat, makes your BP drop too alot of times. The chest and arm pain was not fun, I will be honest. They stopped the infusion immediately, my dr was doing scopes next door so the nurse went and got him. He had them give me 50mg of IV Benadryl and 25mg of Soluable Medrol. We waited nearly two hours for everything to resolve and then resumed the infusion at a slow rate. I did just fine. From then on I received pre-meds in my IV before ever starting the infusion. I never had another reaction.  Alot of drs have their patients take an antihistamine an hour or so before the infusion to help ward off any potential reaction.
 
Reactions can come in many forms with Remicade.  A man was having an infusion one morning and had a sudden onset of severe back pain and this grown man started crying the pain was so bad. Some folks get joint pain, some get rashes and of course you know mine. I am not telling you any of this to scare you. I am  telling you this so if anything unusual happens to you tell your infusion nurse immediately. Like I said, once I started getting pre-meds I did fine. Now after the infusion I was always sleepy and slept thru it because of the Benadryl. I usually felt like I had the mild flu for a couple of days after each infusion. I usually spent those days in bed. After that I was back up and going.  I know people that did the infusions and went right to work afterwards. When I went back on it for the fistula I had other things happen and we finally put it together. I also developed antibodies to it. When I first started doing it, it was still pretty new and not a lot was known about side effects and such. I had two knee surgeries while on it and it did affect the healing process pretty bad, but it was an unknown thing for us at the time. Would I recommend it to anyone with crohns or RA, you bet I would. It can help many people get their life back. It's like any drug we take it's all trial and error, it may not work for some.
 
It is a drug given based on your weight also. Once they get the IV started the nurse will take your BP and temp every 30 minutes. They always start the IV drip out slow, then over time they increase the rate of the flow. They will constantly monitor your BP & temp during the infusion.
 
Its really no big deal, just time consuming. Just have something handy to do and take something to drink and something to snack on. In the event you have a fever or any kind of an inefction you will not be allowed to have the infusion because it could make it worse. I feel you will do just fine. I hope it get's your RA under control. But there are other meds available if this one does not work out. Good luck.
 
 
 


[color=blue>

<FONT>crohns disease dx 2002 & small bowel resection, still looking for remission whatever that is, chronic pain 22 yrs, added ulcerative colitis 6-05 to the mix, high blood pressure 28 yrs, aortic heart valve insuffiency, depression, osteoarthritis, osteoporosis lumbar spine, scoliosis lumbar spine, peripheral neuropathy hands & feet, COPD & on oxygen therapy, lupus & psoriasis and psoratic arthritis. Several other health issues just not enough room to list it all. Too many surgeries to list and too many medications to list. Currently on 17 different daily medications. Intrathecal pain pump implanted June 05.


golitho
Veteran Member


Date Joined Sep 2008
Total Posts : 1670
   Posted 11/24/2009 10:26 PM (GMT -7)   
Just lost my reply, trouble with splints, I keep knocking the mouse. Thank you so much Susie, I will be really prepared when I finally get the go ahead. It will be at least 3 weeks as I need to pass 3 swab tests for skin infections because of the recent surgery. One of those super bug ones you pick up in hospital I assume.

You've really given me hope. I'm trying to raise my focus above the pain so this is good.

Thanks so much, golitho
New Topic Post Reply Printable Version
Forum Information
Currently it is Saturday, December 10, 2016 11:41 AM (GMT -7)
There are a total of 2,735,965 posts in 301,341 threads.
View Active Threads


Who's Online
This forum has 151440 registered members. Please welcome our newest member, Ian88.
240 Guest(s), 15 Registered Member(s) are currently online.  Details
scottishlymielady, DotiW, Celeste15, Bololidat, blueberrymuffin, wthj53, Girlie, LG13, Ariel Smith, poohcheez, Traveler, Tim Tam, k07, Noni9, Tall Allen


Follow HealingWell.com on Facebook  Follow HealingWell.com on Twitter  Follow HealingWell.com on Pinterest
Advertisement
Advertisement

©1996-2016 HealingWell.com LLC  All rights reserved.

Advertise | Privacy Policy & Disclaimer