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Rank: Advanced Member  Groups: Registered
Joined: 3/28/2011 Posts: 956 Location: North Preston
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Hi all
I have a follow up appointment with my Rheumatologist in July and I need to go armed with as much info as I can. At my last appointment she said that my disease was very active and she thought it was time for me to change my drug regime. She mentioned anti thfs and Leflunomide. I said I didn't want to yet. I wanted to give my body time to get over a very bad time around Christmas so she agreed. I am now getting nervous because, like the rest of us, I really don't want to start new drugs but I know it is probably inevitable. Now, I know that they are the professionals and they know what is best for us, hopefully, and that I have some fantastic information about all the drugs from NRAS but you are the people who take the drugs and I want to hear from you, if you don't mind, how you are on certain drugs. How you reacted when you first started anti tnfs or biologics. I don't know what my disease level will be in July, obviously, so she might want to put me on something other than leflunomide so info on any of these drugs would be great. I believe that some people are given a choice of drugs. That will just freak me out. I hope I am not asking too much.
Sheila x
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Rank: Advanced Member  Groups: Registered
Joined: 2/14/2011 Posts: 301 Location: South Hampshire
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Hi Sheila
Difficult decision I know. I am very susceptible to side effects on medications - far more than most people I think. These are my experiences, but I know other people have no problems with these drugs.
Sulfasazline - I tried this after MTX (which made me so ill I had to stop it). I was ok on the low dose but when it was raised I got massive headaches (which only morphine dealt with - not a long term solution). I now just take the low dose. I couldn't swallow the tablets as they are massive, so have the liquid version (laced with yellow colouring!). The low dose didn't help the RA on its own! But combined with the humira things are much better (although I can't say whether or not it makes the humira more effective!) - but I keep taking 10ml a day anyway. A friend of mine takes this on the full dose and has no side effects at all.
Leflunomide - I took this but, for me it had loads of side effects - so I had to stop after a few months. It wasn't working either. The worst problem was massive ringing in the ears, which reduced on the lower dose. Now I've stopped taking it I still have some ringing but nothing like it was (only stopped for a month so far.. and it takes 3 months to get out the system, so I'm hoping). I also had to take anti-sickness tablets as it made me feel so sick. So all in all my consultant and me decided to stop it as soon as the Humira started working. It seemed silly taking tablets for the side effects!!
Humira - anti-TNF - so far this has been brilliant. Now in my 4th month. Amazingly I haven't had a single side effect!!! Although my hairdresser had noticed that my hair is a little different - and going slightly curly!!! She said the drug must be affecting the hair follicles - an irritating curl, I decided, was nothing much to worry about!! At first, as I had no side effects, I had been wondering if it was doing any good - but if it's affecting my hair, then it must be doing something.... hopefully good! The choice of anti-TNF was based on whether I wanted to come into hospital for infusions or whether I wanted to do it at home. I chose Home. She then decided that Humira would be my best option - bearing in mind my history. I was happy with that.
I am also still on Prednisolne 5 mg a day for the time being. The Humira is keeping all joints except 2 at bay. (left knee still has fluid on it - no worse than before I started the humira and my right shoulder.) Due to have a double dose of steroid injection in it next week - and the fluid drained off again! The prednisolne has started making my skin thinner - so I hope to get off them eventually!
I've been really helped by others experiences of the different drugs on here. It does help to know what they are like and I now feel like I know quite a lot, and feel much happier deciding things along with my consultant. We now discuss things in more detail, as I understand where she is coming from.
Hope it all goes well. Have a list of questions on a bit of paper when you go in, so you don't forget anything.
Best wishes
Anne x
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Rank: Advanced Member  Groups: Registered
Joined: 8/25/2010 Posts: 1,289 Location: Buckinghamshire
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hi Sheila,
i have only been on Methotrexate and after 6 months added Hydroxycholoquine, so in total a year now.
i didn't have any side affects with either but as you know i have failed on them both,
so the next course of action was to go onto Anti-TNF.
now my Rheumy Nurse has been brilliant in helping me decide, firstly i was told it might have to be Cimzia as there was a 3 month free trial on at the time ... but when i went for my first session to meet the critertia for the Anti-TNF she told me i could choose. we discussed it and decided to go for Humira, it's their preffered chosen one and since joining the Forum it seems so many are on that one and i believe it has been around longer.
i was given all the info on it as well as a DVD, and have had a few discussions with my GP as well. he is very well clued up on the drugs and RA. he told me that Humira has a good record and that he know's people on it doing well and are carrying on in their profession. i trust him implicity as he's been my GP for a good 25 years. he know's i'm not good at starting a new drug but has given me more confidence.
when i was first diagnosed and had to go onto Methotrexate i lost over half a stone in a week with the stress of both being diagnosed and having to take such a powerful drug as Methotrexate and i was eating well, so that weight loss was due to nervous energy. now i have this next hurdle to face but in general i do feel calmer, my GP said Anti-TNF are kinder on the body. i know i haven't started on it yet but this is my feelings with it.
i'm sure between yourself, Consultant, Rheumy Nurse and the Forum you will come to the right decision,
good luck,
Suzanne x
P.S. if you go through the Drug Section and scroll back you can find a lot of information on there.
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Rank: Advanced Member Groups: Registered
Joined: 3/28/2011 Posts: 956 Location: North Preston
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Hi Anne and Suzanne.
Thank you so much for your candid and in depth replies. I am going to make a note of all anyone tells me and take it with me to help them and myself to decide. Suzanne - I am scared of taking anything else too. I really feel for you right now.
Anne - I appreciate your frankness about how the drugs upset you so much. There is no point in saying otherwise. I want to know the facts, bad or good. Thanks again both of you and good luck
Sheila x
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,689 Location: Durham
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Hi Sheila, I`ve tried various drugs/combinations of drugs, so I`ll try to answer your question : The first drug I was given was sulphasalazine, which didn`t really give me any side effects apart from orange urine. I took it for 6 months, and it did absolutely nothing to control my RA. Next up was methotrexate, which again I tolerated quite well, but the good old RA was still rampaging, and ESR & CRP were up in the hundreds. Along with the MTX I was then given cyclosporin, but this sent my BP rocketing so it was stopped after a couple of months. At this point my rheumy decided to stop the MTX and put me on leflunomide - this proved to be disastrous, as I had terrible sweats, headaches, both of which I put up with, but then the drug began playing havoc with my liver, and after a few months I had to stop taking it, and went back onto MTX. I had to stop this after ending up in hospital with respiratory problems. My rheumy finally put me on the anti-TNF therapy. She decided humira would suit me best, and I take it all by itself, one jab every two weeks. I`ve had so side effects, and have been on it almost 4 years now, and the benefits have been considerable. Gradually my CRP reduced, and has been as low as 5, which for me is fantastic. It is supposed to be taken alongside another DMARD, usually MTX, but I`m lucky in that my rheumy says if it`s doing the trick, she`s happy for me to "go solo." I was scared stiff at the thought of a biologic, but being stuck in a wheelchair wasn`t great, nor was being unable to pick up my grandsons, so for me it was Hobson`s choice. I know it will stop working eventually, but I`ve had such a good spell, and tried to make the most of it. Good luck with your appointment. Kathleen C x
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Rank: Advanced Member  Groups: Registered
Joined: 9/5/2010 Posts: 364 Location: mid glamorgan
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Hi Sheila
I understand how you feel about trying a new drug they all have so many side effects really need to weigh it all up... I have been on mtx for 2 years increasing up to 20mg but I was getting worse and my DAS score very high, so I was given a choice of anti tnf. This panicked me because I didnt have a clue! I opted for infliximab as I friend of mine is on it for Chrones disease and its been brilliant for her, unfortunately nearly 3 months on it hasnt helped me at all.
I dont know what the protocol is for me to try another one or how long I have to give the infliximab before they will say it has failed (nothings simple). Make sure you get as much info and advice as you can. Good luck!! Love Ceri xx
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Rank: Advanced Member Groups: Registered
Joined: 3/28/2011 Posts: 956 Location: North Preston
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Kathleen and Ceri. Thanks so much for giving me a run down of your own drug regimes. This is exactly what I want, although it scares the living daylights out of me, it is what I need to know if I have to make a choice. It is a minefield. I am sure I won't be any the wiser when I get there. I would rather stay on mxt and have some pain than try a new drug because I am scared of side effects. I know that sounds ridiculous and I am obviously not as bad as a lot of people and some of you will be saying "you would take anything if it is bad enough." I also know that we are all different, so really this exercise is pointless, but it makes me feel better.
Sheila x
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 3,157 Location: Huddersfield
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Hi Sheila,
Don't dismiss a drug just because someone else has had a bad reaction to it. We each react differently to the drugs so no-one can say what will happen if you take them.
It's all just trial and error I'm afraid. You will get used to taking the drugs, I don't think there will be any of us who can say the drugs don't frighten us, but in time we get used to taking them and don't really think about it. You certainly are not being ridiculous by being scared of side effects.
Listen to what your consultant suggests, he is the one who has all your blood test results and has seen you from the start of RA so will have some idea which drugs will help you.
Good luck, I hope you find the right "cocktail" to help you very soon.
Love, Doreen xx
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Rank: Advanced Member Groups: Registered
Joined: 3/28/2011 Posts: 956 Location: North Preston
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Hi Doreen.
Thanks for that advice. I know that what you say is right, in fact, I knew that before I even asked the question but just wanted to try and get an overall picture. Your advice is very welcome. Thanks for replying.
Sheila x
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Rank: Advanced Member  Groups: Registered
Joined: 4/20/2010 Posts: 1,749 Location: Somerset
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Hello Shiela,
There have been some interesting posts here and all of them different. Just shows that
drugs do effect people in so many diff ways.
I was diagnosed in late 2008. Was put on mtx, then sulpha added but then my liver
played up. Came off both eventually after a stop and start period for about a year . Then
had a brief spell on Hydro with mtx but there again liver got upset. Then came
leflun last year and had 4 months on that but had severe headaches and ringing in the
ears.
Had my first Humira on Wed tea time and everything crossed this time. I was so nervous though. You will see under
Drugs my post of this which I will update regularly for anyone interested in reading how
I am doing.
To sum up listen to your Specialist and RA nurse and as you can see it does appear to be
trial and error.
Rose x
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 2,237 Location: nr Southampton
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hi
I haven't done at all well on the drugs I'm afraid but the RA itself is so aggressive and active i have little choice.
Basically speaking the DMARDS have had no effect on the RA at all. steroids have nobbled the RA into submission at times but have caused life long complications.
The Biologic drugs (anti-tnfs, b-cell, t-cell treatments) have all ultimately given me serious complications but have, in general made an impact on the RA. With me, I feel different very quickly on the anti- tnfs and my disease is calmer within a very short time- sometimes a day after taking the drug.
If you do a search on my author name you will find out what has happened to me on all the drugs. I dont know how helpful it is to go through it all again on this thread for the purposes of informed choice. I will make a list- sulphazalazine, mtx, prednisolone, hydroxycloroquine, enbrel, triple therapy, leflunomide, humira, retuximab, gold, azothyaprin, tocilizumab, cimzia, abatacept.
Suffice it to say- serious infection is the most clear worries on the biologics and then there are various degrees of allergic reaction. There are hundreds of people on them now who have no negative effect whatsoever but even they must be careful of serious infection risk.
Sometimes I get all brave and decide that I can manage without the drugs and within a short period I would tearfully grovel for anything that that rheumatologist can give me.
life isnt always easy is it?
At least you have a very long way to go choices wise. I have run out!
Jenni xx
how to be a velvet bulldoser
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Rank: Advanced Member
Groups: Registered
Joined: 12/5/2009
Posts: 51
Location: Blackburn, Lancashire
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Hi Shiela
I have had RA for 10 years and was put on mtx and steroids from the beginning.
Every time consultant tried me on some different drug to try and get steroids down the worse I got. Tried 3 or 4 drgs with no effect. Got to the point they had to do something as I was in pain all over my body and could not turn a door knob with two hands as they were so swollen.
I was then given a chance to go on the trials for Enbrel and it saved me! Over 18 months was able to gradually come off a high dosage of steroids entirely. Been on Embrel 8 years now.
I still get flare ups of course, that is life, but I am virtually without pain and the swellng is at a manageable level. I have never had any side effects from embrel and that along with mtx seems to work for me, fingers crossed.
It is very difficult, I know, when you have to make decisons about drugs, but I am afraid it is right what they say, what works for some does not for all, but is is worth persevering until you find the right combination for you personally, as it can make such a difference to your every day life.
With best wishes
Lisa
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Rank: Advanced Member Groups: Registered
Joined: 3/28/2011 Posts: 956 Location: North Preston
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Hi Rose
Thank you for your reply. I think it is so difficult right now because, strangely, I feel so well, presumably because of the steroid inj in my shoulder last week. When I feel relatively well I think "I'm coping I don't need anything else, then when it hits me full on I would take anything. What confuses me is the fact that if I was seeing the consultant today she would say I could continue on mxt but last time I saw her, which was 4 months ago, I wasn't well at all and she said my das level was high. It seems like a lottery to me. It all depends how you are when you are seen. Anyway enough about me. I have everything crossed for you with the humira. Hoping to hear from you soon with good news.
Sheila x
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Rank: Advanced Member Groups: Registered
Joined: 3/28/2011 Posts: 956 Location: North Preston
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Hi Jenni and Lisa
Thank you for your replies. Jenni, I know you have been on many of the drugs and I know there is only one way to find out how I am with them but I am building quite a good idea about the different drugs now. Thanks for tour help.
Lisa. I hear what you say and I have had some very bad times unable to walk or even pull the duvet over me but then I have some times when I feel really well. It's these times that are the problem. I know this sounds awful and I don't want to offend anyone who is bad all the time but it would be easier for me in that respect because there wouldn't be a choice. I hope everyone understands what I am saying because in reality I am obviously grateful for the good times. I think I will just shut up now. I can't describe how I feel really. It's like sending a text. It never sounds how you want it to.
Sheila x
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