Hi all, after a 6 week break from meds due to bloods am back on the wagon i had 1st Humira injection fri, within 3 hours i was violently sneezing runny nose by the evening i was in bed vomiting diahorea, high temp body aches, feeling hot one min then cold the next, stomach cramps, muscle cramps/spasams its taken me 4 days to even begin to feel alittle better !! i say never never again !!!
Rang the rheumy help line four times now just get a answer phone , ended up going to the doctors this morning who then sent me hosp for bloods, still no word from the nurse, i feel i was injected fri and abandoned.
so what happens now ? more days off sick from work already in there bad books for time off.
Would be interested if other peoples reactions to this drug and what was next for you ??
Sarah
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I have no problems at all with this drug on redness at injection site. I had MXT injections and I suffered dizziness, sickness could not get out of bed for 3 days and just kept fainting. Rang the hospital and they told me to stop and have blood test for infection, which was fine so back on the mxt injections two weeks later and the same thing happened. Rang hospital told not to take it for 4 weeks and then try again. Same as before so they stopped it altogether, but now I have a new doctor who keeps trying to convenice me to try again on a low dose, I was only on a low dose! Keep ringing the help line line they normally do get back to you but not straight away or sometimes even the same day. After Humira I was put onto the infusions of Rixtumb,
Hi Sarah, Sorry you have had a bad reaction to Humira and the nil response from Rheumy
nurse. I had sinusitis, crazy itching legs and cold sores but have worked through it all because Humira has really made a massive improvement re what was severe R.A. Keep soldiering on, you will find the right treatment. Good Luck.
Sarah, when I was put on humira I was so glad to be getting anything after 9 months of nothing working! Anyhow I was on it for about 8 injections and was on top of the world.....I was really back to my old self again, it is a great drug if you can take it. Then one day I felt a bit 'funny'.....was in a neighbours kitchen and just had to get outside......made my way to my own house round the corner.....got into my house and just waited to see what happened next....I knew something was wrong but didn't know what it was.....I stood in the front hall and then without any real warning I had a series of projectile vomiting.....I've never experienced anything like it in my life. I didn't feel sick, no nausea just this eruption is all I can call it.
When I settled down I foned ward 23 (my rheumy ward) and was told to stop the injections immediately. I was off all drugs again and after 6 weeks was put on another diabologicial as I call them!!
I would say this is more than likely what will happen to you. Once the drug is out of your system you should be put on another. We all know it is a bit of a journey finding the right drug for us. Don't get too downhearted Sarah.....chin up and batter on..........XXXX
Hi, thanks for your comments how awful for you, i've already tried enbrel, now humira still waiting for hosp to get back to me 5 days now!! i have left umteen messages on answer phone haven't been able to go into work ,my children have had to look after themselves at the age of 7 and 15 yrs well the 15 looking after the 7 yr old and me as am on my own it makes it so much harder.
Sarah, my heart goes out to you and in fact to anyone who is battling this disease with dependant children and working as well.....i simply don't know how you manage. Your 15 year old will benefit from having a bit of responsibility i think and will secretly enjoy being the adult in the house when mum isn't well. Giving them a secret reward when you are feeling better might be a nice idea.
I am on my own and certinally in the nine month waiting to get on biologicals I was in a terrible mess but I survived as you will too. I am very lucky too to have a great rheumy team including my consultant, first class, it is a huge help believe me.
Like you the Enbrel didn't work for me either, well it worked i simply took a reaction to it, a rash over my face, arms, hands. Iam now on Abatacept since last Thursday. Too soon to say how it's working but I am optimistic, sure we have to be don't we? These are great drugs and work for tens of thousands of people.....my rheumy specialist reassures me that if I am unable to tolerate Abatacept that there are other alternatives.....he has been right so far......
You are having an awful time and I hope you have more luck with the next one. Thinking of you.....XXXX
I'm so sorry you are having such a bad time with the Humira. Just a thought - if your GP is helpful, I wonder if you might be able to explain that you are having no luck getting a reply from rheumatology and ask if your GP might try to contact the rheumatologist directly for you and explain the situation. My GP did that for me once when I was having what appeared to be an allergic reaction to one of the meds and the response came back from rheumatology quite quickly if I remember rightly.
You ask about other peoples experiences with Humira and "what next". I had problems with Humira (not the same as you are having though) and eventually had to stop it, but I am now on Rituximab (my third biologic) and have had no adverse side effects from it to date. When I did eventually stop the Humira, I had to wait about 3 months for it to get out of my system completely and to see if the side effects went (they did) and then I was offered the chance to start another biologic. I was given the choice of Enbrel, or Rituximab and I chose the Rituximab because it works in a different way to my previous biologics (Infliximab, Humira) and, having become allergic to both those over time, I thought I might do better on the Rituximab. It's not quick to work (if it's going to) by any means but it is now working well for me and I have had no adverse effects from it so far. Really hope you get some help soon Sarah, and are able to find a drug which works for you, without the nasty side effects
Thanks for your kind words, was thinking third time may be my luck !! Never give up eh !! i just feel bad for my daughter who has to take care of me from time to time even though i know she doesn't mind but i do she's so young 15 yrs. Tomorrow is another day and i do have an apiontment with my GP so i will ask them and see if they have better luck than i did. Thanks again
Hello again Sarah - you are very welcome. I'm sorry it's so hard for you - but really good luck with your GP. Really, they ought to be the "lynch pin" of our medical care I think, but so often (in my experience anyway) we find ourselves falling between rheumatology (please leave a message and go to your GP if it's urgent) and the GP (you need to speak to the rheumatologist, cos it's not my area of expertise). Hey ho.
Anyhow, really hope you can sort something soon Sarah.
Hi Tilly, i got a double whamy of G.P and consultant today, both agreed with me to stop the humira, then get better not sure i agree with this part of it, then think about next biologic. that's all very well but it takes so long to get funding then get homecare, then the nurse . i'd rather they start applying for the funding now, but hay hum it's all about a waiting game !!! still i have 3 weeks 3 days till school's out as i teach in a primary school nursery and reception which i really enjoy but may have to think about giving up if i don't get sorted soon.My hope would be to try something during the hols then it doesn't matter if am ill.But i guess i was never good at waiting for things !!
do you know what the 6 biologic drugs are ? i've tried Enbrel and Humira so there are 3 ? 4? more not sure what they are or how they work as to which would suit me best. hope you are contiuing to be well have a great weekend.
Sorry you do have to stop the Humira, but I am glad you finally have an answer on that. I really do understand the frustration of waiting to find out "what next" though and why it would be easier to be able to try something new in the hols. In terms of what the biologics are, I will see if I can think of them all...
The anti-tnfs are Enbrel and Humira as you know, and Infliximab (infusion every 8 weeks). Rituximab, which is an anti-B cell drug is given by infusion - at my hospital it's a set of two infusions, then a second set of two infusions 6 months later, than on an "as and when" basis. I'm going about a year between infusions at the moment. Then there are Cimzia, and Abatacept, about which I know absolutely nothing and I think there may be at least one more newer one. In terms of what's best, well I guess like with everything else to do with RA you never know until you try. I was told though that Rituximab is thought to work better for those people with seropositive RA. And the reason I went for that one after having to stop Humira and Infliximab was because it works in a different way from the anti-tnfs. Another consideration of course is the method of taking the meds in terms of convenience. Personally I prefer the infusions because I feel as if I have more support - when things went wrong for me with Humira I felt very alone with it and trying to get any help was really difficult. But then I'm not working so I don't have to worry about taking time off for infusions and the after effects.
I don't know if any of this is helpful Sarah and I do hope that the Humira side effects subside very soon for you and you don't have too long a wait to get started on another biologic.
Hi Tilly, am still feeling the after effects of the Humira sadly just spent a few more days in bed ! still i was able to sit in the garden today relaxing reading my book, thanks for all your comments which of course were very helpful as always.
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