BIO'S AND FLARE UPS

[Jeanabelle60]

just a quick question......does anyone still have flare up's while on bio's. my bio seems to have stopped working in the past fortnight. it was suggested to me that maybe it is a flare up.......any ideas. would be great full for any information......running out of bio's and really frighten i might have used up all my options......

[francherry]

Hello Jeanabelle60, sorry to hear this, yes, I still have flare ups while on biologics. Currently on Enbrel (started end of Jan) and I seemed to be getting a bit better but have had two flares, one of which is ongoing for over a week. I'd like to stay on Enbrel if possible ('failed' on Humira and 3 DMARDS) but wondering if the anti-histamine I take as 'cover' to prevent side-effects could be affecting the effectiveness (if that makes sense!) of this drug? (I had the option of either anti-histamine or steroids as 'cover'). Do you take either steroids or anti-histamine as 'cover' to prevent side-effects too? Have you spoken to your rheumy nurse about your concerns? I was told to wait and keep doing the twice-weekly injections til I see the rheumy on 7th May and have an ultrasound on my wrists to see if the damage has stabilised/got worse/improved. It's upsetting having flare ups but I want to continue with the drug for as long as possible and hope the flare-up will calm down. I don't want to start another bio either as I'd rather have more options for the next 50 years (hopefully new drugs will be available soon too!). Hope your flare eases up soon and that you have a chance to speak to your rheumy nurse/rheumy. Take care, Fran x

[Jeanabelle60 in reply to francherry]

hello Fran, i have talked to my rheumy nurse in the last half hour and she did say that it could be a flare up and for me not to worry. i have to go on anti inflamatories again and she told me if the pain gets worse to come over to the rheumy ward and she would give me a steroid. she did say however that if it continues for another week or two to contact her again. i aam seeing my consultant on the 27 of may so there is plenty of help and support there for me which is very reassuring.

you said your flar up is on going for a week.....how long do they normally last. i've had one or two in the past and they were a day or two at the most but the pain was unbarable as opposed to bad pain. this is running into its second week.... so when does a flare up become a drug failure?

never heard of anti-histamines being used as a cover.....thats a new one to me.....but listen i'll take anything that will help. thanks for getting back to me. hope the Enbrel works as well for you as Abatacept has for me....it has transformed my life, it really has. thanks again. XX

[francherry in reply to Jeanabelle60]

Hello again, that sounds reassuring and it's good you don't have long to wait before seeing your rheumy again. I'm afraid I can't really answer when a flare up becomes a failure in your situation - definitely another question for your rheumy team. For me, the 'failures' for another 4 drugs were due to side effects like neutropenia, rashes, migraines, palpitations & numbness, as well as a more serious reaction (I mean my rheumy took other factors into account, not just the flares). My flares normally last one or two days but I have been particularly stressed the past week. I should have explained the reason I take anti-histamines as a cover is because I'm so sensitive to all meds that's the only way I can take them - I do the same thing with my osteoporosis medication. Thanks for your good wishes with the Enbrel and hope things improve for you soon. xx

[allanah]

Yes I think the occasional flare for me is par for the course. They o make you feel as though you have taken a step back. But you do need to talk to Rheumy to check your inflammation maybe ? To see if the drugs as is in your mind maybe aren't so effective? Have you had any triggers recently, stress, surgery, virus that might have set off a flare?

Hope it settles quickly and sending gentle hugs x

[Jeanabelle60 in reply to allanah]

hello Allanah, i have been thinking about any stress as a trigger....to be honest i don't think there was. i think i've have just been doing so well on Abatacept that i thought all this pain was behind me! chance would be a fine thing....anyhow i was booked for my first of six hydrotherapy sessions today and it was wonderful. it was only for half an hour but it was brilliant....the pool is at bath temp and i had almost instant relief....i could have stayed in the pool for hours it was so nice. i did the exercises as best i could and as i'm in a flare up the nurse stayed close to me during the session. if you ever get the chance to take part in one of theses session i would advise you to take it......really wonderful. looking forward to friday for more of the same. thanks for your reply and hope you are feeling well. XX

[allanah in reply to Jeanabelle60]

I did them too , wonderful xxx

[Louganis]

I have the occasional flare up but I find that once I start to flare regular it's time to up the dose or change the bio defo talk to rheumy! Good look.

[Jeanabelle60 in reply to Louganis]

thanks louganis, this is what i'm afraid of. the thing is i think i'm running out of bio's as i have been through them all. abatacept is what i'm on now and i have done some research and there doesn't seem to be any others available now! even when the doc put me on abatacept he told me that it was the latest and was so new that it hadn't even been approved in some countries yet.....there doesn't seem to be another, from my research anyhow. its good to know however that flare up's can happen while on bio's......thanks a lot for your reply.

[Louganis in reply to Jeanabelle60]

Nightmare I am on my 2nd bio had etanercept and now on weekly humira told I probably need a different one unless my flare ups settle I am just worried about having to go in to have a drip on a monthly basis cos that must be so inconvenient! Hope your flare ups settle could just be the change in weather or the rise and fall of the sap and my great grandma used to say!

[Chatham]

Having a flare now. Not due Simponi until next Sunday 4th (have it same day each month) doesn't seem to last over the 3rd week

[Jeanabelle60 in reply to Chatham]

i was like that with some of the other bio's was was on but eventually taken off....might be time to try another.....all the best and thanks for the reply.

[stbernhard]

Sorry you still get flare ups, but they will come and go. I have been on CIMZIA for over two years and it still happens from time to time, like right now. Just think of how much worse you were before you started the bios and the good times when you don't have a flare up. That's what keeps me going all the time. We are lucky to have these medications. My heartfelt wishes and all the very best. It WILL get better!

[Jeanabelle60 in reply to stbernhard]

thanks, you are 100% right. i just talked to my rheumy nurse and she wanted me to come over for a steroid but i refused as i know i'm not as bad i as i was at my worst. she said that if it lasts another week or two i have to call her again. i can't praise Abatacept enough.....it has been a wonder drug for me. i have been reassured too with the responses i got on this site. because i have been just about pain free for the last 10 months i assumed that this is the way it would always be, silly me. now i know that flare up can happen while on bio's and that i may be worrying too much. thanks, stbernhard......XX

[benjijen]

I'm on humira and for the last few months have been up and down like a yo yo. Going to see rheumy on 1st July. Hope to get it sorted again. So, yes, you can have flare ups on bios.

[Jeanabelle60 in reply to benjijen]

luckly i'm seeing mine on may 27.....he is a great fella and he always manages to put my mind at ease. humira was great for me but one day out of the blue and with no warning i had projectile vomiting.....!! having said all that they are great drugs its just this disease is so different with every patient its had to know what to expect. thanks for your rely and all the best with the Himira. XX

[lisalockit]

Hi Jeanabelle sorry to hear ur suffering i was on Embrel and worked very well for 2/3 years then started having little flares which turned into longer ones and consultant decided it had stopped working, maybe ur body just gets used to them after a while that's my theory anyway lol am now on rituximab infusion had my second round of treatment last month previously had a year ago, not kicked in yet so still suffering :((( i would see how u go and if flare not improving contact ur consultant or nurse.

[Dogrose]

I have Infliximab infusions and they only last three weeks,then it is like a door closes and the pain and exhaustion come back. I have to make sure I do all I need to do in those three weeks! xx

[Jeanabelle60 in reply to Dogrose]

i know.....its just the way of this disease isn't it. my flare seems to be easing off today and the weather here is gorgeous but i'm just still not up to doing much. when i was on infusions i was the same.....my body was telling me 'give me my drugs'........