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Side effects of RA treatment - can anyone help?! Options
Kim
#1 Posted : Wednesday, May 12, 2010 1:52:56 PM Quote
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Hi there,

I am 62 and was diagnosed in June 2008 with rheumatoid arthritis. I am currently taking Methrotrixate 25mg, (started in April 2009) Hydroxychloroquine 400mg, Prednisolone 5mg.

I started Humaira treatment in Jan 2010, as my condition was not improving and am feeling much better. However, Im really worried that taking 5mg Steroids every day and Methrotrixate once a week will lead to some really bad long-term side effects.

I would just like to ask anyone who is taking Humaira, if they have reduced their Steroid and methrotrixate intake/dose (ie to 10mg)? I also have osteoporosis and have been taking Alendronic acid tablets since January 2010. All the medication I am on, is making me really worried about my bones, especially the steroids.

Would be grateful if anyone could help! I have a Consultant appointment coming up next week and want to be armed with all the important information.

Thanks.
jeanb
#2 Posted : Wednesday, May 12, 2010 2:39:11 PM Quote
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Hi Kim

First of all, welcome to the forum but, obviously, sorry you have RA.

I can't really advise on the Humira issue - I'm very fortunate in that my RA is controlled with MTX and Hydroxychloriquine. Steroids, however, are a different matter and something you should discuss with your team. I think long term, steroids CAN adversely affect us, but if you are recommended to come off them, this has to be done very carefully and very slowly.

I'm Jean, 66 and have had RA for about 10 years.

I look forward to getting to know you.

Love Jeanxx
jenni_b
#3 Posted : Wednesday, May 12, 2010 4:43:34 PM Quote
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hello and welcome kim

i think mtx can have long term effects but you are right the long term effects of steroids can be nasty. i have adrenal problems triggered by long term steroids and also the diabetes came from this. however! ra is a serious condition, it causes serious and long term damage to your body systems- if the mtx works for you it is so well known, tried and tested it is a risk (IMO) worth taking.

no one knows the longer term effects with humira as it hasnt been out that long here, longer in america- you might like to look on the humira website or the mayo clinic site for details.

as for bone density, i have been luckier- my hand and feet bones are very thin, this is to do with the constant swelling. but the hip dexa scan was really good. the dexa scan is painless and no tubes to go in! definatley get on the calcium tablets and ask for a dexa scan.

i am jenni, btw, 34 yrs married with 3 children severe ra and some other bits!

love

jenni x
how to be a velvet bulldoser
jenni_b
#4 Posted : Wednesday, May 12, 2010 4:45:50 PM Quote
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ps there is something in the mtx and humira combination that rheummies like- there is evidence that it makes the humira work better but if there is a prblem on the mtx. they can stop it. my guess is that they will want to reduce the prednisolone over time with the RA more controlled.
how to be a velvet bulldoser
Kathleen_C
#5 Posted : Wednesday, May 12, 2010 4:51:44 PM Quote
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Hello Kim and welcome, though sorry, of course, that you have RA.

I was diagnosed in Jan 2006, and spent 18 months trying various drugs & combinations of drugs.In August 2007 I was put on a combo of MTX and Humira. To cut a long story short I was hospitalised with chest problems in March 2008, and taken off MTX.

Since then I have been taking humira on its own, apart from painkillers and the occasional anti-inflammatory. For me, the humira has been just as effective without the MTX, and my consultant says as long as it is she is happy with that, though I know it is preferable to take MTX with it, and at some time in the future I may have to try MTX again. For now though, humira seems to be doing its job, and I`m not taking steroids either.

Take care,

Kathleen x

dorat
#6 Posted : Wednesday, May 12, 2010 6:13:25 PM Quote
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Hi Kim,

Welcome to the forum.
I have been on humira for 12 months now and I take 15 mtx. No-one has mentioned reducing the mtx but if you really want to I'm sure they would let you try.
I can't help with the steroids I'm afraid as I have never taken them orally but you are right about the long term side effects of these and should ask your consultant about cutting them down slowly.
Looking forward to getting to know you.

Doreen xx
lizziemouse
#7 Posted : Wednesday, May 12, 2010 6:48:57 PM Quote
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Welcome to the forum Kim, sorry you have RA too,

Sorry I cant advise on your combination but think you are wise getting some questions ready for your appointment.

I was really anxious about meds issues when I first was diagnosed, i found it helped me to also weigh up the effects of not taking them - weighing up the pros and cons and talking to my gp as well as my rheumy consultant,

Have you seen the info on the NRAS website? It's full of all sorts of useful topics

Do keep posting & let us know how you get on at your appointment xx Take care love Liz xxx
JulieM
#8 Posted : Thursday, May 13, 2010 1:18:57 PM Quote
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Hi Kim,
I take Humara and 5mg mtx.
I'm sure that if you ask they may be willing to let you try to lower the mtx dose.
I know that steroids are a poblem but you may find that if the mtx and Humira work then you may be allowed to stop the steroids in time?
YES I'VE CHANGED, PAIN DOES THAT TO PEOPLE.
lyn2
#9 Posted : Friday, May 14, 2010 4:15:34 PM Quote
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Hi KIm

I was taking 25mg MTX Ebrel and prednisolone 15mg, slowly reduced to 5mg. Now I'm taking Enbrel and pred 3mg. I think what you have to remember is - would you rather be totally disabled by RA, or feeling much better with drugs that can control it? For me, it's quality of life compared to longevity. I'm sure most people on the forum would say the same.

Lyn
LynW
#10 Posted : Saturday, May 15, 2010 2:44:54 PM Quote
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Hi Kim

Welcome to the forum! A great place to be for friendly folk and helpful information.

I am Lyn, married to Mike, have four kids and live in Lancashire. I was diagnosed 22 years ago and am currently on Enbrel, Mtx, Prednisolone, Naproxen and a bucket load of bits and pieces. If it keeps the body working that's what matters at the end of the day!

Usually one of the key issues in using the biologics is the possibility of steroid reduction. As others have said steroids do have long term side effects (I've had both lenses in my eyes replaced due to damage caused by high dose steroids) and your doctors will want to reduce these, very slowly, once the disease is otherwise controlled. As you do already have osteoporosis this, I would think, will be their main priority. 5mg is generally regarded as a 'safe' maintenance dose (I'm on 3mg) but with your existing condition I would certainly ask about this as steroids are known to cause bone thinning. Having been on the dammed stuff almost all the time RollEyes I have regular dexa scans to check for early signs of osteoporosis. Methotrexate, whilst toxic, does not impact on the bones in the same way but can be known to cause liver/kidney damage and hence regular blood tests are taken to check for this.

As Lyn says it is a balance of life quality and longevity. It may be necessary to continue the 25mg of Mtx if the steroids are reduced. Your doctors will know what is best in your situation. Always good to be prepared for appointments so worth doing the homework!
Hope it goes well for you Kim; let us know how you go on :)

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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