Posted , 5 users are following.
Hi everyone my names Kelly I'm from Edinburgh UK I was diagnosed with ankylosing spondilitis and psoriasis arthritis along with uvevitis of the eyes and possible crohns disease I'm now starting humira biological injection on the 12 th December 2016 I was just wondering if anyone has experience with these and if you can explain what to expect ect thanks
0 likes, 10 replies
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janis06023 kellymotion
Posted
Hi Kelly, I am so sorry to hear about your many diagnosis. You will find that everyone responds to medications differently, what works for one does not work for someone else. I have RA and have been on Humira for 11 years, it works great for me. I hope it will do the same for you! The only side effect I have encountered is fever blisters, I had them constantly, they would not go away even with Acyclovir. I read that a gluten free diet might help my RA, so I tried it, I saw no difference in my RA but noticed that the fever blisters went away! I have not had one since, I just watch what I eat and don't worry about contamination so probably not totally gluten free but it is so worth it! I hope someone with your conditions responds but wanted you to know that Humira has worked wonders for me. Good luck!!
kellymotion janis06023
Posted
Hi Janis thank you for your reply. It's nice to hear about someone else's trials with humira I guess I have the first time jitters I'm nervous of the side affects but open minded to the prospect of the drug helping I've been on so many other drugs before going on humira arcoxia amitriptiline tramadol cocodamol lots of pain killers I'm having a flare up at the moment my inflammation levels are over 63 feel run down I'm taking metatone to help with immune system my eyes are really bad keep flaring up with uvevitis blood shot constantly watery can't look at the lights I just want to be able to function day to day be normal again so I hope that humira eases some of the inflammation that causes so much flare up I know it won't cure what I have but I hope it just makes it easier to manage I'm 29 have three wonderful girls and a son who's 5 with autism my kids need me so its imperative I try and manage my conditions sometimes the future looks scary unknown ? So fingers crossed I'm now on the road to better management . I'm so pleased that the blisters went down since being on humira for you it must be such a relief that other elements of your conditions have settled down a little how long did this take? Since starting humira? And do you think you will be on it for life?
janis06023 kellymotion
Posted
Gloria814 kellymotion
Posted
HI Kelly
Sorry to hear that you were hit with that news. It can be overwhelming but we are lucky today to have so many newer drugs to deal with these illnesses. I have 3 autoimmune but they didn't get diagnosed all at once. I will be starting on Humira on 12/02 myself and am quite anxious over side effects but I know it is something I must try. I could not tolerate methotrexate at high doses so this is the next drug. Many people do very well on humira from what I read but it is all individual--may not be the drug that is the right fit. From what I hear the main problem with humira is lots of infectiions. This drug works for both Crohns and RA which I have so it will be the first biologic they try. I wish you the very best of luck as you start the drug--we will be doing this almost at the same time so we can share our stories. Try and stay positive but it is easier said then done/ I have my bad days where is all seems overwhelming but always hopeful the next day will be better
Gloria
kellymotion Gloria814
Posted
Hi Gloria thanks for your reply .
Sorry to hear that you have 3 autoimmunes and like yourself all my diagnoses werent diagnosed at same time for four years I had pain in abdomen ect at first they thought irritable bowel syndrome but later found it was crohns along with this my eyes were constantly watery when near lights and became very painful I had to stop wearing contacts ect then was diagnosed with uvevitis then two years ago was diagnosed with ankylosing spondilitis and the other one plus two days ago I just found out I have polycystic kidney disease! Falling apart lol.
I know humira can't cure what I have but I just want to manage day to day things and I'm hoping that humira for me will slow down the inflammation levels produced by tnf cells and make day to day more managable I'd love to hear more about your journey and I hope with all my heart that humira works for you also x
ihavenonickname kellymotion
Posted
Scotland, near and dear to my heart...I am 2nd generation USA...
Humira is a biologic that modifies diseases that are TNF driven
Humira must be kept refrigerated even when traveling. Here in the USA we are given a special case with a removable pack ro be frozen prior to travel.
The nurse will teach you how to inject yourself....it is quite simple. You find a private, quiet place.
You lay out the Humira dose pack.
You thoroughly cleanse your hands.
You decide on an injection site...typically the abdomen or the outside of a thigh
You open the alcohol wipe and thoroughly sanitize the injection site you choose.
Hold the syringe straight up and look for the top of the liquid.
Carefully remove the protective cap that guards the needle.
Very gently depress the plunger until a wee bit of the medication drips out.
Loosely, big pinch the site you choose.
Firmly put the needle in without depressing the plunger.
The needle is so sharp that most people do not feel the needle
Gently pull back on the plunger
If you do not see blood, inject the medication, remove the needle, gently hold the alcohol wipe on the injection site for 15 seconds.
OR
If you pull back and see blood, you are in a blood vessel ..remove the needle, move a smidge over and try again....this rarely happens.
So, way back in the dark ages, we were sent a powder, a small vial of sterile water, a needle. a syringe, and alcohol wipes ..we had to mix out own medication first!
Humira is a DMARD, disease modifying anti rheumatic drug.. it changes the way disease progresses. That means that it may take afew months before you feel and see the result in your body.
Work closely with your rheumatologist who can prescribe other medication during this interim period.
kind regards
janis06023 ihavenonickname
Posted
kellymotion ihavenonickname
Posted
Thank you ihavenonickname for your reply I found it very helpful thank you. When you start biologicals is it trus that you'll then be on them for life? I know humira can't cure the conditions but it will stop tnf cells and reduce inflammation but I wonder is it a life long commitment or can some people ween of it if conditions improve? Is there side effects if you come off it? I'm so nervous about starting humira but yet I'm rather excited also ? I'll update you with more feedback once I k ow more thanks again x
ihavenonickname janis06023
Posted
kind regards
ihavenonickname kellymotion
Posted
Hi
You can stop Humira without a weening process.
As long as your disease is TNF driven, Humira or Enbrel will help you.
Rheumatoid is a dynamic disease that morphs....this is why a medication that helps today may not help tomorrow.
By observing a person's reaction to a drug, we can learn a lot about the rheumatoid in that person's body...Both Enbrel and Humira are TNF, tumor necrosis factor. Individuals whose rheumatoid responds well to either Enbrel or Humira are said to have TNF driven rheumatoid. Rituximab is a monoclonal antibody against the protein CD20. For those who respond favorably to Rituximab, we say their rheumatoid is CD20 driven.
Sometimes rheumatoid arthritis can be successfully treated with an NSAID...non steriodal anti inflammatory drug...such as Orudis, Feldene, Naprosin, Naproxin, Motrin, Indomethacin, Butazolidin to name just a few.
Steriods...not to be confused with anabolic steroids...prednisone, budesonide, methylprednisolone are three of many. Many decades of study have taught us to use steroids judiciously because steroids cause unwanted side effects such as bone density loss. Today, steroids are prescribed using a burst approach...high dose fast start, immediate graduated decrease, off.
DMARDs & Biologics... disease modifying anti rheumatic drug...
This class of medications modify, literally change the way rheumatoid behaves... Methotrexate (now the gold standard), hydroxychloroquine, sulfasalazine, Orencia, Remicade are all typically oral.
Rituximab is delivered by infusion.
Enbrel in the mid nineties was the first DMARD. I still remember watching the television news that night with tears running down my face. Those of you who face rheumatoid today should never face the full fury of this disease. Nevertheless, matching a sufferer with the best medication to defeat their rheumatoid continues to take time. As the class of medication used increases, so too do the possible adverse side effects. Be patient and work with your rheumatologist, only a board certified rheumatologist, to fine tune a treatment effective against your rheumatoid.
54 years of severe juvenile rheumatoid has left my body permanently damaged and deformed because medicine did not have the wealth of knowledge it has today.
I am grateful for all of the analgesics, NSAIDs, and steroids that made it possible for DMARDs & biologics to modify even my severe juvenile rheumatoid. Today my JRA relatively quiet. And once my rheumatoid quieted down, I forgot about the really tough times it raged.
Excluding steroids, the medications can be stopped anytime. Some rheumatoid will regress very slowly at first an gradually pick up speed as time progresses. A fellow rheumy of my rheumatologist has been in remission pushing 1.5 years without having taken any medication!!!! This is hugh!!! Because she is female like me, both of us are laster sixties, both of us have suffered with decades of rheumatoid ravaging our bodies. Neither one of us could envision what a day without rheumatoid would be like. This is how phenomenal today's rheumatoid medication is. My body has not yet gone into remission...my many physicians must balance immunosuppression repercussions and rheumatoid disease. We know we can push my rheumatoid back at the cost of my immune system...put that would not be the win win we are looking for.
hugs