alternatives to Biologics

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

Oklahoma girl
New Member


Date Joined Jun 2006
Total Posts : 8
   Posted 7/11/2006 11:25 PM (GMT -7)   
Ok, here is my story. I describe it as having a hole in my immune system. I have common variable immune defiency or specific IGG2 deficiency. I don't make enough IGG2 and what I make doesn't work. My Immunologist had me take 3 pneumonia shots last year with no response from my immune system. For treatment I get infusions of gamma goblulins to make up for what I don't have.(3 hour IV once a month)
the only arthritis test I pass is the ASO titer. (it has been as high as 750 and as low as 350 when I started taking penicillin shot every month) The other possiblity is that my immune system started attacking me since it wasn't doing what it was supposed to.
I have only been on the immune therapy for a year, but I had to stop the methotrexate a year and a half ago. The doc needed to be sure that wasn't messing up my immune system. I had to quit working after about 6 months of no mxt.
I was a teacher in high school so that was a bad carreer choice anyway. So now I have stopped having a sinus infection every month, but I'm on antibiotics anyway because that is the only thing that helps with the arthritis.
erin - thanks for the list of alternate meds. this web site has helped a lot. Just to know I'm not the only one out here in pain and not knowing what to do next.

elcamino
Veteran Member


Date Joined Sep 2005
Total Posts : 1744
   Posted 7/12/2006 6:28 AM (GMT -7)   

Hi Oklahoma Girl,

I understand now about your situation.  I must admit, I was a bit confused when I read your post on Yalinda's thread about biologics.  Erin has already listed alternative medications--it sounds like antibiotics may work for you.  A bit of caution regarding sulfasalazine.  It also has the potential to drop your blood counts, like methotrexate.  I took sulfasalazine for 6 weeks before my blood counts plummeted, and I developed a severe allergic reaction (stephens-johnson reaction) to the stupid drug.  If you have a choice, you might consider the antiobiotics first.  Also, I don't know about side effects of this treatment, but it also used to be a very common treatment for RA--gold injections.  I think this also has blood issues, though.

Best of luck in your quest for an acceptable treatment.

Elcamino


Current dx: Rheumatoid Arthritis
Suspected dx: UCTD/Early Lupus
Current Meds: Enbrel, Plaquenil, Aciphex, Ultracet, Zyrtec, Allavert-D, Zantac, Tylenol PM
Past Meds: Relafen, Vioxx, Mobic, Voltaren, Sulfasalazine, Entocort, Prednisone, Humira, Reglan


erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 7/12/2006 8:28 AM (GMT -7)   

confused  holey cow El you got SJS from it???????  wow that's serious.  thank God you're alive.

Oklahoma girl,

i agree.  perhaps antibiotics are best.  speaking of long term antibiotics, i was on strong antibiotic cocktails from 2001 till 2004...and i mean grams per day.  despite nausea i did alright without getting any superinfections.  taking a probiotic like yogurt or acidophilus tablets help a lot with that.

you are in my prayers.

erin


Active, Severe Rheumatory Arthritis. Crohns. AS. Chiari Malformation & Right Brain venous anomoly. Partial complex seizures. Emphysema. Rheumatic Lung & Heart. MVP and Tricuspid prolapse. Had Lymes disease for 10 years.
Meds: Humira 40mg Q 4 days; Pred 20mg prn; Pentasa 4G daily; Imuran 50mg; Dilaudid 4mg; Diazepam 5mg; Avinza 30mg; Reglan; Meclizine; LidoDerm; MiraLax & too many others.


elcamino
Veteran Member


Date Joined Sep 2005
Total Posts : 1744
   Posted 7/12/2006 11:11 AM (GMT -7)   

Perhaps SJS is stretching it a bit.  I was not dx by a doctor.  What happened is I had been feeling very poorly all week, high fever, increased joint pains, etc...  Called rheumy, and he told me to go see my PCP.  Went to see PCP, and he gave me a toradol injection and sent me on my way.  The next night (around 3am), I went to the ER in extreme pain.  Got two more toradol injections and a scrip for prednisone and was told to see my rheumy.  Next morning, I took my sulfasalzine and went to see another PCP in my primary practice because the first guy was useless.  Second doctor ordered some blood labs, which showed extremely low WBCs, low platelets, low lymphs.  Later that night (it was Friday), I broke out in a rash that literally covered me from head to toe, including in my mouth, nose, ears, etc...  Husband (who affectionately referred to me as lobster girl) tried to get me to go to ER again, and I refused.  Saturday morning, I started taking prednisone (80 mg/day).  By Monday, the rash was mostly gone, only left on my stomach.  I went in to see PCP, and show him what was left of the rash (because it was pretty scary).  He didn't really comment on it (he was an idiot).  When I finally got in to see the rheumy (a week later after I had finished the prednisone regimen), I described the rash to him, and he said that was quite a severe allergic reaction to the sulfasalazine and it was a good thing I had decided to take the prednisone.  In my own research, I believe it was a mild SJS reaction--but I have no proof.  I had the fever, mucosal involvement, rash all over face, trunk, and proximal extremities.  I was too stupid at the time to recognize that I was experiencing a very severe reaction.  In retrospect, I should have gone to the hospital. 

The only other reaction to a drug I've seen was my younger brother.  He had taken tegretol and developed SJS in reaction to that drug.  He was in children's hospital at the time, and they treated him with high dose steroids.  Perhaps I did experience SJS, perhaps not.  I know that I'll never take sulfasalzine again regardless.

Elcamino


Current dx: Rheumatoid Arthritis
Suspected dx: UCTD/Early Lupus
Current Meds: Enbrel, Plaquenil, Aciphex, Ultracet, Zyrtec, Allavert-D, Zantac, Tylenol PM
Past Meds: Relafen, Vioxx, Mobic, Voltaren, Sulfasalazine, Entocort, Prednisone, Humira, Reglan

New Topic Post Reply Printable Version
Forum Information
Currently it is Saturday, December 10, 2016 7:51 AM (GMT -7)
There are a total of 2,735,832 posts in 301,337 threads.
View Active Threads


Who's Online
This forum has 151437 registered members. Please welcome our newest member, stevclemon.
265 Guest(s), 12 Registered Member(s) are currently online.  Details
TOOTY, Michael_T, tickcheckguy, Bucko, getting by, magoo2, NiceCupOfTea, pmm73, fibrocushie, houseboy, Not-there-yet, LanieG


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