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Rank: Member
Groups: Registered
Joined: 5/13/2011
Posts: 13
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Not really having much luck at the moment  reacted to mtrx then 2 others and now seem to be reacting to sulf. I must admit that I am now on anti depressants and am wondering if there will ever be a way over this? Dont want to feel so dramatic but I constantly feel ill. I am considering trying stopping all the drugs to see where it takes me? Wondered if anyone else had tried this? Steph
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 2,237 Location: nr Southampton
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Hi
Totally understand where you are coming from but sadly, the liklihood is that you stop the meds and you will put yourself into a flair and then beg the rheummy for anything he/she will give you!
iMPORTANTLY some drugs- steroids (prednisolone/ hydrocortisone) if stopped suddenly can and do KILL PEOPLE. You cant stop suddenly have have to reduce the dose over time with monitoring.
If tried more than 2 DMARDS you can be put forward for anti-tnf and other biologic drugs.
Sadly, its trial and error and you were unlucky not to do ok on the MTX.
I have been through over 30 meds...
Just on steroids now.
Jenni xxhow to be a velvet bulldoser
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Rank: Advanced Member  Groups: Registered
Joined: 2/14/2011 Posts: 301 Location: South Hampshire
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Hi Steph I know exactly where you are coming from. I tried MTX, leflunomide and then sulphasalazine - all of which I reacted to badly on the full dose. I had to stop them all, but am now about to start a very low dose of Leflunomide along with the Humira that does work for me!! I asked my consultant this very question - she said she'd had quite a few patients who stop everything.. and they all come back after about 6 months.... my GP said he's had patients do this and said 'don't' because they all come back eventually with massive damage to their joints and deformities! This put me off trying... so I went forward for Humira an anti-tnf. If you have 3 failed Dmards, you can be put forward for anti-tnfs so ring your rhemmy nurse and talk to her. For a while I tolerated a low dose of sulfasalazine but it made me feel so ill. Amazingly enough the Humira (which has the worst list of side effect I've ever seen - apart form the Yellow fever jab!) - it suited me well, and I've had no side effects from it at all. My consultant also said that depression often comes with active RA, and she was confident that the Humira would lift my depression too --- which it has.  The aim of the drugs (Dmards and anti-tnfs) is to prevent the inflammation in the first place - so you don't get the joint damage. The steriods and anti-inflammatory drugs just help in the present situation to reduce the inflammation; but they don't prevent it. Don't feel too despondent. There are other drugs to try... but I wouldn't recommend taking nothing! Chat to the nurse and see if you can see the consultant sooner to try the anti-tnfs. For the first time I am now feeling a lot better the majority of the time. It's even my 50th birthday today.. was hoping to get out on a boat in the Solent.. but the weather is too bad! Take care Anne x
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 3,157 Location: Huddersfield
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Hi Steph,
Yes, I've tried it, and lasted 8 months. My first 5 years after diagnosis were spent trying and failing on many different DMARDs and combination of DMARDs. None of them helped me and all I had were horrendous side effects.
I asked if I could have a rest from the drugs and although my consultant said I would need multiple joint replacements within 3 years he agreed to give it a try with 3 monthly depo steroid injections.
After 8 months I agreed to go back on the mtx, and it did actually help me, where it hadn't before, although not enough and for the last 3 years I have been on Humira, still with the mtx.
Humira has been the best drug for me and has givem me a much better quality of life.
None of us like taking these toxic drugs but the simple answer is, if we don't take them we suffer and get joint damage.
The length of time it can take to find a drug that works for us is so frustrating and soul destroying, but hang in there...you will find something to help you in the end!
Love Doreen xx
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Rank: Advanced Member  Groups: Registered
Joined: 8/25/2010 Posts: 1,289 Location: Buckinghamshire
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hi Steph,
i hate taking my Meds but to be honest as much as i'm scared about starting a new one i am more scared of not being under control and seizing up !! although i'm not under control 18 months on i do think the Methotrexate and Hydroxy are helping in some way.
i have just started on Humira ( two injections in ) actually thought i wouldn't go to the Hospital for my first injection from my Rheumy Nurse but with her fantastic support and knowledge i did.
my confidence has now grown and i am trying to be positive that my new regime will work for me.
i definately wouldn't stop taking meds, would Anti-TNF be the next step for you.
speak to your Consultant or Rheumy Nurse things are progressing drug wise, and they have to be tested thoroughly.
Suzanne x
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Rank: Advanced Member
Groups: Registered
Joined: 2/26/2010
Posts: 271
Location: hampshire
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Hi Steph, just wanted to say I totally sympathise with you, Its a horrible disease and the frustration of now knowing what each day will bring is mind boggling. I was taken off meds for just over 3 weeks this summer due to high ast levels. I was desperate to get back onto something. At the moment Im just taking mx and anti inflams and cant wait to see the consultant and talk about the next round of treatment which I suspect will be anti tnf's, as I am surviving each day on painkillers and optimism!!!
Hope things improve for you soon,
love Heather xxx
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Rank: Advanced Member  Groups: Registered
Joined: 3/28/2011 Posts: 956 Location: North Preston
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Hi Steph
I can't add anything to what has already been said but I wish you luck in finding the right treatment for you
Sheila x
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Rank: Advanced Member
Groups: Registered
Joined: 12/4/2009
Posts: 2,127
Location: Thornton Cleveleys
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Hi Steph Please, whatever you do consider the full implications. Joint damage doesn't happen overnight but several months without adequate RA medication can start a downward slope. I have spoken with several newly diagnosed patients in denial who firmly believe they can get by on pain relief and will get better. If only... I won't repeat what others have already said but you do need something to slow the progression of the disease. There are now many drugs out there and almost certainly there will be something that suits you. Good luck Steph  Lyn
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Rank: Advanced Member Groups: Registered
Joined: 3/28/2011 Posts: 956 Location: North Preston
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Hi Anne
I know it is a bit late but a very happy birthday from me and I hope you enjoyed your day.
Sheila x
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Rank: Advanced Member Groups: Registered
Joined: 2/14/2011 Posts: 301 Location: South Hampshire
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Thanks for the birthday wishes. Kids made me a rainbow cake... I was very impressed!!
Anne xx
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 3,006 Location: Timperley
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Hi Steph Only just picked up on your post, so I apologise for the late response. It's a case of "been there, done that and worn the T-shirt out" I'm afraid I'm one of the idiots who decided to ditch all the drugs, despite having fairly severe joint damage and having replaced knees and hip. I must have had a brain storm, because I woke up one morning and just decided I wasn't going to take any more of the damned stuff! Some 3 months later, when I was in absolute agony and almost crawling on all fours, common sense prevailed!! My rheummy was none too pleased when he saw my blood results (all the levels hadf gone sky high) and there was more joint damage. Please DON'T DO IT!!!!! Love Jeanxxxx
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Rank: Member
Groups: Registered
Joined: 5/13/2011
Posts: 13
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Hi All
Thanks for your replys - cant describe how good it is to know you are all out there!
Consultant has now suggested that I stop everything as my side effects are so bad and we wait to start again!! My inflamation levels are low (still have loads of pain in my hands) having thyroid test for my exhastion??
Feeling quite scared but willing to try anything! Will keep you posted!
Steph
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Rank: Advanced Member Groups: Registered
Joined: 2/14/2011 Posts: 301 Location: South Hampshire
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Hi Steph
Thyroid is well worth doing. I had mine checked about 2 years ago and found it was very low, so I now have thyroxine. I have a lot more energy now than I did... and it entitles you to free prescriptions.. so not all bad!!! (Does increase travel insurance more than RA does - but never mind!!!)
Hope you get some relief soon.
Anne
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Rank: Advanced Member Groups: Registered
Joined: 3/28/2011 Posts: 956 Location: North Preston
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Hi Steph
I hope you are feeling better now and that you have decided to continue on meds. Anne - you said that having thyroid problems affects travel insurance more than RA. I didn't know that. I have had underactive thyroid for 20 years and have been abroad several times but not noticed any increase. Is this a recent thing and do you know why?
Sheila x
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