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Humira & Infections Options
KathyC
#1 Posted : Sunday, February 05, 2012 12:59:00 PM Quote
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Hi everyone,

The last time I posted here which was some months ago, when I was taking Cimzia which did not prove suitable for me.
Having swopped to 'Humira' at the end of November, and have been taking this for almost three months now, I have felt around 80% better and hopefully was looking forward to this continuing.

However, having caught a very bad cold recently (the first cold since having R.A. for the past four years )and have been suffering from this virus for the past two weeks, I now find some of my R.A. symtoms have returned once again, mostly in my knees and arms, which I find very depressing and of course this is making life quite difficult to move around without pain and stiffness.

Can anyone therefore please advise me if this can be the case even when taking a anti-T.N.F. drug, that getting an infection etc, can result in the drug not working fully during these times? or is there any evidence that Humira does not work so well on it's own, without the addition of Methotrexate ?

I find this to be yet another obstacle if this is the case, as any infection I may get, in the future, may result in a return of a 'Flare-up' of my R.A. symtoms also.

Your advice will be much appreciated.

Many Thanks,
Kathy C
Anne-P
#2 Posted : Sunday, February 05, 2012 4:19:44 PM Quote
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Hi Kathy

Sorry to hear you've not been feeling so well.

I take Humira on its own (couldn't tolerate any of the other drugs) and I've been continuing to take it when I've been ill and on antibiotics (which interestingly, like you - this year is the first year for about 5 years!). I don't think the Humira has slowed down me from getting any better - when I compare myself with the others in the family. I seem to get the odd minor flare now and then... but haven't worked out a pattern!! Maybe it is when I'm not well. My hands are a bit sore this week - and I've just finished another course of antibiotics. I'll have to start noticing more.

I agree it is very frustrating. I feel so tired all the time, which is so annoying.

There is evidence the Humira works best with an additional drug. I had a look at the research a little while ago - but it does work on its own as well. I think the percentages were only about 10% better combined with another drug. I'll have to see if I can find where I read that.

Are you just stopping the MTX when you are ill, but carrying on with the Humira?

Take care
Anne xxx
jenni_b
#3 Posted : Sunday, February 05, 2012 6:36:33 PM Quote
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Hi
With any virus or infection the immune response is going to be triggered
It has a good sabre rattle at the bugs and of course this triggers inflammatory response which in you, because you have ra your immune response is WONKY it makes your joints swell and hurt

The humira dampens your immune system down
So although the sabre rattling is happenin
You arent fighting the bugs off the same as normal
So it hangs around for ages

And causes the inflammatory response to continue
It can of course trigger a full blown flare

As with all things that could be infection or that have lasted ages please get to a gp and be checked properly. Immuno surpression is not something to be messed with

After all this, the humira will almost certainly go back to workin
I'm so so pleased it's been good after the cimzia debarcle

how to be a velvet bulldoser
Rose-B
#4 Posted : Sunday, February 05, 2012 9:09:03 PM Quote
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Hello Kathy.


Sorry to hear that you are on anti biotics at the moment. I hope the bug goes away quickly.

I have read Jenni post and I don't think I can add anything to it, otherthan to say pleased
that the Humira is working for you (it didn't for me)

Rose
Kathleen_C
#5 Posted : Monday, February 06, 2012 5:02:47 PM Quote
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Hi Kathy,

I take humira on its own - for over 4 years now, after bad things happened on other drugs, especially MTX. My consultant has been quite happy with this so far.

I do still get an occasional flare, and my shoulders are not often entirely pain-free, but re infections, I haven`t noticed the humira not working if I have a cold, or whatever. Neither do I get any more infections than I did in pre-humira days.

Hope it continues to work for you,

Kathleen x

jeanb
#6 Posted : Monday, February 06, 2012 7:01:59 PM Quote
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Hi Kathy

I haven't had this problem but really hope you soon feel better.

Love Jeanxxx
johnr
#7 Posted : Wednesday, February 08, 2012 5:11:12 PM Quote
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Hi Cathy

Sorry about your problem. I have been on Humira for a couple of years now (plus Methotrexate) after two other anti tnf draugs had no effect on me. I am at present in remission. My nurse specialist and consultant advise that if I have a chest infection or whatever and have anti biotics, I should stop taking the metho. The Humira which is every two weeks I keep going as the 7 day anti biotics do not interfere. I know I am going to regret saying this but this combination and advice is working for me and I have had RA for over 20 years
Keep being positive and talk to your nurse.Smile
Kindest regards
Johnr
Sue10
#8 Posted : Wednesday, February 08, 2012 7:11:37 PM Quote
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Hi Kathy

So sorry about the problems you have been having. It does seem that we all get different advice and it is a bit of a minefield to sort it out.

I have been on Enbrel and Methotrexate for a year which has worked well for me but I have had a couple of infections and on both occasions have been advised to stop the Enbrel and keep on the Methotrexate. On one occasion I was told to stop both but then it becomes a balancing act of stopping for too long and making the treatment less effective. I have had an occasional flare while still on the Enbrel but it has not lasted for long.

Hope that you soon feel better

Best Wishes

Sue
David_R
#9 Posted : Saturday, February 11, 2012 3:01:18 PM Quote
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Location: GRIMSBY
Cool
hello, concerning humira pen, i was taking the humira pen 3 years ago and ended up with 'broncial pneumonia' i was in hospital 5 weeks and lost 3 stone and was told i was losing the fight, i had lost that much weight the canulas would not go in the veins they collapsed. they tried me on retuxamab first two sets of infusions did nothing so asked for another go, the third set wow my life took off, i have had the best year ever so, seven years of a living hell and since last march brilliant, i am gettingnear to having my next set of infusions but i am trying to hold on till i really need it
take care everyone
dave raven
KathyC
#10 Posted : Sunday, February 12, 2012 2:03:34 PM Quote
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Hi everyone once again,

Just a general up-date and to thank everyone who has posted a reply to me, I really appreciate this and it has helped me a great deal. The same as it did when I was taking Cimzia and felt so dreadful and really at my wits end to obtain any positive advice. I really value having this Forum to be able to ask these type of questions connected with R.A. as I know really that mainly people who have R.A. and find themselves in the same situations can offer the best advice about drugs etc which they have tried or still taking themselves.

During the four years of having R.A. the control which I took was 25mg of MTX and had the occasional depo steroid injection which gave me some relief. The MTX became unbearable and therefore my Consultant decided to try me with the latest anti-T.N.F. Cimzia which had only just become available, and was then being offered for a free 12 week period. I was not given too much information about Cimzia and I understand from what I now have discovered was the first to try this out in W'ton.

I looked forward to getting a good result from Cimzia, like you see in the accompanying DVD which they give to you, unfortunately the side-effects for me proved that it was not going to be suitable and I stuck this out for the 12 week period, at times feeling quite dreadul which included the worst 'flare-up' of symtoms thatI had ever encountered in 4 yrs, which I stopped taking at the end of Sep[tember.

Understandably, I was apprehensive to start on another drug, this time I was given Humira, but luckily from November, it has been working very well for me and I have not needed any painkillers throughout this time. I would say my R.A. stiffness and pain have been 80% better taking Humira, with no significant side-effects really.
I was advised to take just 10mg. of MTX with the Humria, as it was felt the drug worked better, although, still not feeling so good on this does of MTX was last advised to just take 5mg.

I just therefore could not understand the reason when I managed to catch some kind of Virus/Cold some two weeks ago, that gradually the R.A. acute symptoms have now returned once again, which I would add, have been far worse to try and deal with than the cold symtoms. The stiffness and pain have now lasted for almost a week, making life very difficult once again, as many will know who contribute to this Forum.

I did ring the Nurse at the Rheumatology Hospital Dept, who did remember me and just gave the advice to take the Naproxen Pain killers for the next few days and hopefully things would return to normal once again. She added that sometimes a Virus or Cold could trigger a 'Big Flare-up- of R.A. also.

I have not been taking any antibiotics during having the cold virus and have continued with my Humira injections, but are still very sceptical if this is going to start working for me once again, as the experience with Cimzia, has not given me any confidence.
I have now began to realise that some Rheumatology depts. are better than others, when trying to get any help, the same with some G.P.s who appear to know very little about R.A. as a disease.
When I was suffering from the Cimzia side-effects I tried ringing three differenct Hospital depts in my area and was met with different advice from each of them. I also have tried to get as much information as possible from the difference sources on the internet, even my Consultant was telling me only a few weeks ago that he still could not understand why Cimzia had not worked for me, he contributed to this, by adding that perhaps it was not so good a drug after all ! He has also advised me that his choice would to give everyone an anti-T.N.F. drug as his first choice to control R.A. symtoms but the cost stops him doing this.

At the present time therefore, still feeling the acute stiffness, pain and being somewhat depressed once again, sometimes I do not feel that I have the energy, enthusiam to feel positive that my life will return to normal again for a considerable length of time anyway, I now seem to be fighting to get over one health problem or the other in addition to the R.A. I was encouraged once again by watching the Humira DVD and hoped that I would be able to be free of symtoms once again, walk miles and function normally once again. Before discovering that I was suffering from R.A. I was very healthy and had been lucky enough to hardly ever consult a G.P. even. Now I have boxes of different tablets for one thing or another which has gone wrong and I wonder if this is the path which my life may run from now on.
I also understand from reading some of the messages on this Forum, that many suffer worsening symtoms which I most likely do and I do feel so much for everyone when I read about their current troubles also.

Many thanks to everyone once again for all their nice messages and advice.
Kathy C
Rose-B
#11 Posted : Monday, February 13, 2012 3:55:37 PM Quote
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Hello Kathy


You certainly are not alone. I understand exactly how you feel. The hopeful drug = the after effects,
another hopeful drug = the after effects. The disappointment is over whelming . I know as I
am similar to you.

The hopelessness, will I ever feel better, will I ever be normal again? The stiffness and pain is
all to consuming. I? am with you.


RoseThumpUp
KathyC
#12 Posted : Thursday, February 16, 2012 12:22:14 PM Quote
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Hi everyone,

Thanks Rose for the last reply, sorry to say but still suffering greatly, as the stiffness and pain has once again returned in arms and knees, making it difficult to do much.

I cannot get any further help from the 'only anti-T.N.F. Nurse at the Hospital' as she happens to be absent for the whole week (half term holiday) so is my Consultant, so the advice is just to keep taking the 'painkillers' for the time being !

The 'Humira' still has not kicked in and this 'Flare-up' has now lasted for more than two weeks, which I am wondering if this is the length of time to expect for it still to be a 'Flare' or simply the Humira not working.

I think the only relief which I can get will be another 'Depo Steroid' Injection, but have to be sure that I have no infection to be able to have this.

Can anyone please tell me if a 'Flare' can last for longer than two weeks and when is the correct time to ask for further relief from the unbearable pain ? as I cannot imagine the Humira will start to work efficiently once again, simply on it's own, from experiencing the acute symtoms of R.A. for the past few weeks, which I thought would never happen to me once I started on Humira in November.
My next injection is due next Friday.

Thanks again,
KathyC
Rose-B
#13 Posted : Friday, February 17, 2012 9:30:02 PM Quote
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Kathy,

I seem to be in pain, stiffness more than NOT in the past 3 years as I am not controlled yet.
When I have a good day I almost want to celebrate it and then I suffer again from over doing it. You
can't win can you.

I had RTX November, and also take amytriptline, ceelcoxib, tramadol and paracetamol for
pain.

Take care
Rose-B
#14 Posted : Friday, February 17, 2012 9:30:04 PM Quote
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Kathy,

I seem to be in pain, stiffness more than NOT in the past 3 years as I am not controlled yet.
When I have a good day I almost want to celebrate it and then I suffer again from over doing it. You
can't win can you.

I had RTX November, and also take amytriptline, ceelcoxib, tramadol and paracetamol for
pain.

Take care
LynW
#15 Posted : Saturday, February 18, 2012 1:31:30 AM Quote
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Posts: 2,127
Location: Thornton Cleveleys
Hi kathy

Sorry to hear you are suffering but unfortunately unpredictability is key where RA ia concerned. Flares can last from days to months and RA can remain uncontrolled for years even after many years of adequate control. The general advice would be to maintain your drug regime with adequate pain relief (obtainable from GP) until symptoms settle.

RA is symptomatic of an overactive immune system so any infection will kick it in to further overdrive as it tries to deal with various bugs. This can often result in the RA becoming worse as more white cells become active in combating the virus. There is no answer because each of us is very different in our disease patterns and our immune responses.

I have had severe RA for 24 years but this has, at times, been well controlled. That said it has been uncontrolled for the last two years despite various medications. I'm now on anti-inflammatories (Naproxen - these need to be taken regularly to be effective!), pain killers, steroids, methotrexate and waiting on Rituximab to work magic (like Rose!).

It is very much trial and error where RA drugs are concerned but trying to remain positive can have a beneficial effect. Do try to sort out the pain relief though, Naproxen is not a pain killer!

Lyn x
My son, Ian, completed the BUPA Great North Run on 15th September running for the National Rheumatoid Arthritis Society (NRAS). You can read his story at http://www.justgiving.com/ianlukewilson

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