Forums33
Topics44,166
Posts519,787
Members14,015
|
Most Online1,931 Jan 16th, 2023
|
|
Administrator/owner:
John (Dragonslayer)
Administrator:
Melinda (mig)
WebAdmin:
Timo (Timo)
Administrator:
Brad (wolverinefan)
Moderators:
· Tim (Dotyisle)
· Chelsea (Kiwi)
· Megan (Megan)
· Wendy (WendyR)
· John (Cheerful)
· Chris (fyrfytr187)
|
|
If you want to use this QR code (Quick Response code) just save the image and paste it where you want. You can even print it and use it that way. Coffee cups, T-Shirts etc would all be good for the QR code.
|
|
|
Joined: Apr 2002
Posts: 12,465
|
Joined: Apr 2002
Posts: 12,465 |
Hi Shari, I am really sorry to hear you are feeling so horrid. Serum sickness is a known possible adverse reaction to Remicade. It is listed on the product prescribing information. 5.7 Hypersensitivity REMICADE has been associated with hypersensitivity reactions that vary in their time of onset and required hospitalization in some cases. Most hypersensitivity reactions, which include urticaria, dyspnea, and/or hypotension, have occurred during or within 2 hours of REMICADE infusion. However, in some cases, serum sickness-like reactions have been observed in patients after initial REMICADE therapy (i.e., as early as after the second dose), and when REMICADE therapy was reinstituted following an extended period without REMICADE treatment. Symptoms associated with these reactions include fever, rash, headache, sore throat, myalgias, polyarthralgias, hand and facial edema and/or dysphagia. These reactions were associated with a marked increase in antibodies to infliximab, loss of detectable serum concentrations of infliximab, and possible loss of drug efficacy. REMICADE should be discontinued for severe hypersensitivity reactions. Medications for the treatment of hypersensitivity reactions (e.g., acetaminophen, antihistamines, corticosteroids and/or epinephrine) should be available for immediate use in the event of a reaction [see Adverse Reactions (6.1)]. Reference: remicade.com Click to download PDF file - Highlights of Prescribing Information While an antibiotic may be suspect as well, even a delayed reaction a week after your infusion wouldn't rule out Remicade. That your rheumatologist hasn't heard of this possibility in relation to Remicade would not inspire my confidence. You should tell the prescribing doctor to report this as a suspected adverse reaction. The report will include the combination of medications, which may help others in future. I think there is a good chance you won't continue to feel this poorly for the 12 weeks. The medication will fade and the steroid should start to help soon! Has any doctor suggested that you try an over the counter antihistamine? If you are still feeling terrible, I would ask your doctor if that might be a good idea. Really really hoping you will be feeling better soon, Shari. mig
|
|
|
|
Joined: Dec 2010
Posts: 456
Warrior_AS_Kicker
|
OP
Warrior_AS_Kicker
Joined: Dec 2010
Posts: 456 |
I really appreciate all the support here.
Hope too, by sharing my story, others can learn what to look out for. I am doing better today on the 60 mg of Prednisone. Jaw and hand symptoms are gone but the utrica is still all over but way down. I am shocked, when this all started, I went to the ER- could barely move my mouth, couldn't chew, it was swollen, excruciating painful (could tell it was nerve pain), could barely move my hands and my right hand was not functional at all. They were going to discharge me with nothing and I spoke up and said "you guys have to do something, I can't function and I'm in a lot of pain. I have a kid to take care of". So the ER doc asked what do you want and I asked "will steroids help?" He then prescribed Methylprednisone. I still got the rash like a vengeance 4 days later after starting the steroids. Who knows how much worse I would have been with no steroids if I wouldn't have spoken up. They must judge me as a drug addict because I take drugs to help my quality of life. To be honest, I am not a pill popper and hate taking drugs. Just need what I need to get by.
The day of infusion, I did take the Benadryl and a Tramadol. I had a headache I could not get rid of it for 5 days after the infusion but didn't call the doc because it was more of an irritating headache and not migraine.
It sucks that I know I am hypersensitive to Remicade and it will be in me for 12 weeks. I was on Remicade years ago (just a few infusions) and just didn't feel it was doing much and I was feeling ill so I stopped. My Rheumy says he doesn't think it is from the Remicade but he has not seen all the notes yet fom the other doctors or heard all the details. From what I read, I am textbook serum sickness - hypersensitive to Remicade.The dermatologist said I am not in the clear yet of it stopping my breathing so I have to continue the steroids. The ER doc should have caught all this. He said the Remicade and antibiotics are poison but that was it. Hope I taught the doctors what to do with the next patient.
Feeling a little depressed, anxious and mad I am pumping more drugs into me now. My goal for being on Remicade was to decrease other drugs (cut out daily low dose steroids) and improve my quality of life. I am thankful though I am still living. My Mom told me not to go on the Remicade and I should have listened. It will be a story I can tell my daughter when she is older to help her learn that Mother's just know.
Shari
Meds -Hizentra, leflunomide, Prednisone
|
|
|
|
Joined: Feb 2006
Posts: 1,483
Silver_AS_Kicker
|
Silver_AS_Kicker
Joined: Feb 2006
Posts: 1,483 |
remember Shari a sensitivity to Remicade does not rule out the other TNF drugs that may also help you achieve that goal of drug reduction
There is still Simponi, enbrel, and Humira
Simponi in particular had a very low allergy or drug reaction percentage in the trials.
best of luck
No families take so little medicine as those of doctors, except those of apothecaries.
Oliver Wendell Holmes
|
|
|
|
Joined: Dec 2010
Posts: 456
Warrior_AS_Kicker
|
OP
Warrior_AS_Kicker
Joined: Dec 2010
Posts: 456 |
I don't know if I can risk it again but won't rule it out for good. My Rheumy did warn me before going on another biologic, that my body can't handle them. I was begging him to try a biologic again, due to the fact high steroids were not kicking out my AS flares. I was having a hard time just walking and getting comfortable in bed. Maybe, I should have asked for higher steroids or should have done the steroid injections in the SI. I have osteopenia so I know these steroids are putting me even more at risk for osteporosis. Lord knows what my bones will be like now from the high steroids before starting the biologics and now having to take them for the serum sickness. Should I be taking a medication to strengthen my bones besides calcium? I heard the bone drugs have a ton of side-effects and are not well tolerated.
Should I see a Neurologist? I am a little suspicious I could have some neurological issues due to years of migraines but know this could very well be AS related too from inflammation.
I have learned through this all to trust my Rheumy.
Shari
Meds -Hizentra, leflunomide, Prednisone
|
|
|
|
Joined: Nov 2002
Posts: 6,928 Likes: 3
Addicted_to_AS_Kickin
|
Addicted_to_AS_Kickin
Joined: Nov 2002
Posts: 6,928 Likes: 3 |
((Shari)) I am one of those who can't take the other meds. My rheumatologist told me that he thinks he about killed me trying to help me and that he won't give me any more. I also can't take any more steroids because my intestines have gotten so thin from them. I also have healing problems from a lifetime of steroids. My sternum didn't heal from heart surgery. I have both feet with fractures and one wrist.
Bottom line is that we have to do what we have to do to stay alive. I know the steroids saved my life at times. I have such a love/hate relationship with them.
It is a little un-nerving to know I can't take any of the meds any more especially right now when I am in such a Lupus flare. They kept me going for a lot of years though.
I am thinking of you. I know how it feels to be in your shoes and they cramp your style don't they?
Hugs and Blessings. Possi
Possi ********************************************************* RUN WHEN YOU CAN, WALK IF YOU HAVE TO, CRAWL IF YOU MUST, JUST NEVER EVER GIVE UP! "A FRIEND HEARS THE SONG IN YOUR HEART AND SINGS IT TO YOU WHEN YOU CAN'T REMEMBER THE WORDS." "A FRIEND LOOKS THROUGH YOUR BROKEN FENCE TO ADMIRE YOUR FLOWERS."
|
|
|
|
Joined: Jul 2010
Posts: 1,191
Steel_AS_Kicker
|
Steel_AS_Kicker
Joined: Jul 2010
Posts: 1,191 |
Oh Shari, what a difficult time you must be having, wish I could give you a hug. I am wondering what another rheumatologist would say about your situation. The last thing you would want is to go to another appt at this point, but maybe in the future consider trying a new rheumy. I hope you feel better and get over this serum sickness real soon, I will say a pray for you, take care.
Diet change has improved my RA. I feel best eating raw veggies and some fruits and avoiding grains, sugars, nightshades, beans and dairy. Sed rate dropped from 65 to 19, but it took over a year. www.fatsickandnearlydead.com excess fat/oils = pain for me recipes for raw food on Youtube "raw food romance" and "healing josephine" Josephine is in remission from RA after two years by change diet/exercise
|
|
|
|
Joined: Feb 2010
Posts: 2,190
Major_AS_Kicker
|
Major_AS_Kicker
Joined: Feb 2010
Posts: 2,190 |
Shari, I am praying that you get better soon. I hate taking steroids,but sometimes we just don't have a choice.
Donna Cherish your yesterdays, Dream your tomorrows, But live your todays. Do the very best you can leave the rest to God. God Bless,
|
|
|
|
Joined: Jan 2009
Posts: 4,501 Likes: 1
Supreme_AS_Kicker
|
Supreme_AS_Kicker
Joined: Jan 2009
Posts: 4,501 Likes: 1 |
You should tell the prescribing doctor to report this as a suspected adverse reaction. The report will include the combination of medications, which may help others in future.
Really really hoping you will be feeling better soon, Shari. mig The patient can report to FDA themselves. I did that on behalf of my husband, who suffered a bad reaction to the antidepressant Viibryd.
DX: Psoriatic Arthritis, Osteoporosis, Psoriasis Meds: MTX since Oct 2009, 15mg/week. Cimzia-restarted after 2 yrs away. Epidural Steroid Injections x8; Lumbar Radiofreq Ablation x2 SIJ Steroid Injection x3; Bilateral Radiofreq Ablation SIJ x9
|
|
|
|
Joined: Feb 2010
Posts: 1,046
Iron_AS_Kicker
|
Iron_AS_Kicker
Joined: Feb 2010
Posts: 1,046 |
Should I be taking a medication to strengthen my bones besides calcium? I heard the bone drugs have a ton of side-effects and are not well tolerated. Remember not to take calcium alone; need to take D3 and especially magnesium to utilize it properly. However it is best to take calcium and magnesium as separate supplements at different times of day, so they can each be better absorbed. If you add strontium[2] into the mix, that also needs to be taken separately. Timing doesn't matter for the D3. My mom is thankfully off the bone drugs because they stopped even appearing to work after 4 years (meaning, it is questionable that they prevent fractures because the extra density is accompanied by extra brittleness). For the last year she has added prunes[1] and strontium[2] supplements to the calcium/magnesium/D3 regimen and the last bone scan showed improvement! [1] http://www.whfoods.com/genpage.php?tname=news&dbid=31[2] http://www.innvista.com/health/nutrition/minerals/stronti.htm Also search for posts here by mollyc1 on strontium -- it was thanks to Molly's posts that I advised my mom to try these alternate methods
|
|
|
|
Joined: Apr 2002
Posts: 12,465
|
Joined: Apr 2002
Posts: 12,465 |
Hi Shari,
I'm relieved to hear that the Prednisone is showing such clear signs of helping and that you are beginning to feel better finally. I am shocked too that the ER was going to discharge you without any form of treatment! That is scary. You should be very proud of yourself for self-advocating as strongly as you did. That is hard to do when right in the middle of feeling so brutal.
I'm not sure which antibiotic you were given but have read that the most common cause of serum sickness is penicillin. Given that you had taken Remicade in the past and were "re-instituting remicade therapy following and extended period without"... I think I'd proceed under the assumption that you may be highly allergic to either or both, unless they can determine which is the danger to you through a blood test.
Can appreciate why you'd be feeling depressed, anxious and mad. Remicade has allowed me to cut out and reduce my other meds and I always wish this for others. I hope you and your doc will be able to find a safe and effective solution or combination that works to manage and control your AS. Sharing your story here may very well help someone else to seek treatment early by identifying signs of trouble.
Really hope you continue to improve quickly, Shari! mig
|
|
|
0 members (),
46
guests, and
86
robots. |
Key:
Admin,
Global Mod,
Mod
|
|
|
|