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Rank: Advanced Member
Groups: Registered
Joined: 4/12/2011
Posts: 79
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Hello. Feeling a bit down today..so seeking some support from you lovely people suffering this curse of RA. I am on triple therapy with MTX built up to 17.5 mg over 4 months now, Hydroxychloroquine for about 3 months and Sulfasalazine about 1.5 months now..nearly 50 tablets a week! Feel that there is some improvement in hands in the morning and have gone almost 7 weeks without needing a depo-medrone jab but still so easily tired, unable to do much if any exercise, periods of huge lethargy and heaviness in hips, feet, knees and bad shoulder pain at nighttime. Taking Naproxen and paracetamol as needed. Wondering when a major improvement will be noted. Thinking that at three months I should see big improvements..but only minor so far..OH TO HAVE 1 normal day like before..! Mostly working from home, using my annual leave allowance to have long weekends, not commuting much. My employer thank god has been good to me..I even got a pay rise recently. However my first thought was can I give it to a doctor to cure me of this most horrible illness..... - Darshin feeling low... 
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Rank: Advanced Member
Groups: Registered
Joined: 12/7/2009
Posts: 176
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I do feel for you Darshin, I remember those first few months well. Hang on in there! The drugs do take a time to get into your system, and as you said there has been some improvement. Major Improvement? Some do get it, some get don't get enough. We are all unique. You are obviously trying really hard to keep your own 'normality'. If your employer is being good to you, why not follow their example and be good to yourself?
Watch your mood though. Getting and learning about RA is a big deal, and some of us need help avoiding becoming depressed - talk to your doctor about it. I am always being told to look at my day, and celebrate what I HAVE achieved, not dwell on what I didn't manage - very hard to do, but worth trying.
Keep in touch!
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Rank: Advanced Member  Groups: Registered
Joined: 11/20/2010 Posts: 244 Location: Cornwall
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Hi Darshin,
I remember the 3 month moment very well, I feel for you. I think my post at that time in February was 'So this is it then?' Followed up swiftly by 'Reality setting in' I'm still on 15mg MTX and max paracetamol and naproxen to get me through, have about 3 hours a day of anything like activity but its something I'm starting to get a bit more used to and as Mandy says starting to be a bit kinder to myself. We're off on holiday tomorrow so I had a huge list of things which MUST be done before we go. Felt really rough yesterday morning after the MTX tore up the list and treated myself to coffee and cake with a friend instead. This is a major break though, I am a very driven person and lists are there to be done not torn up.
My GP has told me I'm depressed, hmm, of course I am I say, my whole life has been turned upside down, anybody would be feeling depressed, you would be depressed. Its not something you can just shrug off and say oh well never mind about. But even though its a really difficult acceptance process, period of adjustment, as well as trying to get used to a new routine of sorts I've declined the anti-depressants. Even though they may help, I need to know what I'm feeling however bad that is.
So many people have said before that this time is like a period of grief, and having lost close family I can relate to that most wholeheartedly. But grief gets easier with time, acceptance will come and we all still have so much to look forward to and be grateful for. I know this isn't readily apparent on bad days when you're feeling down but I'm afraid its pretty darned true and on better days you can see these things.
Hold on in there Darshin, my consultant told me that generally men don't suffer as much as women, so things could get better for you yet, but if not there are still a lot of positives in your life I'm sure. An understanding employer is a god send for a start!
Take care
Sara
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 714
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Darshin
I am so sorry that you are feeling low. I do sympathise as when we get the diagnosis we think hurray they can sort me out now. Unfortunately with RA it is not always the case that it is sorted quickly. Everyone is different and they have to find the right combination of drugs for you and there is still time for the drugs you are on to start working.
Your whole life has been turned upside down since your diagnosis and you are also in pain. Twelve weeks is not a long time for you to come to terms with this. It is a grieving process for your old life and trying to work out how you are going to cope in your new life. I know it is a worry when you are working but at least your employers are being sympathetic. If you have not already done so give them a copy of the NRAS booklet for employers. It tells them what you are going through and how you may be for the rest of your working life.
Darshin I am sorry but there is no miracle cure for RA and all you can do in the meantime is make sure you get good pain relief, rest as much as possible outside of work and have patience.
I was diagnosed in January 2009, I am still working, I have failed on all medication so far but I am still here and yes some days are absolutely awful but you have to think that your right combination of medication is just around the corner.
Keep positive and take care
Jackie
x
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Rank: Advanced Member  Groups: Registered
Joined: 12/4/2009 Posts: 1,524 Location: W. Yorkshire
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Darshin, it is still very early days for you and the fact that you do feel some improvement already is a good sign. We all go on this emotional roller coaster ride. You are being normal! In the meantime here's a hug for you  YES I'VE CHANGED, PAIN DOES THAT TO PEOPLE.
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Rank: Advanced Member  Groups: Registered
Joined: 4/20/2010 Posts: 1,749 Location: Somerset
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Hello Darshin,
Sorry you feel cheesed off at the moment/ 3 months is still very early doors (as we say in Somerset). This wretched
RA effects us all and stops us from doing the normal, whatever that is. It is difficult to pcik yourself up sometimes,
however I do like Mandy comments below. That is a great motto.
I am going through rough time as well. So I am going to use your motto Mandy. Thanks
Rose
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Rank: Advanced Member
Groups: Registered
Joined: 12/4/2009
Posts: 2,127
Location: Thornton Cleveleys
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Hi Darshin You are making progress which is great! Try not to feel down, things will get better ... really :) Paracetamol probably isn't the answer for you especially if taken as and when needed! Sounds like you need something stronger to clear some of the ongoing aches and pains. The thing about effective pain relief is that it must be taken regularly and often something stronger at night to help you get a pain free rest. Similarly Naproxen is a drug that must be taken everyday. It's not enough to take it when the inflammation gets bad ... it's a process of continual control. I think if you can get on top of the pain control you will start to feel emotionally better which will help you all round. When you are popping your near 50 pills a week spare a thought for me ... 24/26 a day plus two injections a week!! I've had RA 23 years so that's a lot of pills!!  Never mind I'm still around to the tell the tale! Take care Darshin, Lyn x
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Rank: Advanced Member
Groups: Registered
Joined: 4/12/2011
Posts: 79
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Thank you all for getting back to me. Its such a struggle when normal things aren't possible anymore. The pain is at the centre of my loss of mood and then anxiety about what will happen..it all seems grim when so many joints have difficulty. However I would like to hope that triple therapy will work for me....
I do appreciate all your comments about it being early days, celebrating what I have achieved and comparing my medication with someone like Lyn's for example. All of you must be taking similar doses to mine.
Taking pain killers all the time is something my GP doesn't encourage me to do. Take it as needed is his common statement. Also I worry about tummy problems.
- Darshin
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Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 714
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Darshin
I find it very bizarre that your GP does not encourage you to take painkillers, when you have such a painful disease. No wonder you are down. If you take painkillers irregularly then you never get enough in your system to take away the pain. If you take eight paracetemol over a 24 hour period continuously each day you will be amazed at how the pain will lessen. This will not happen if you dip in and out. Your GP should also be prescribing you a stomach protector like Omeprazole or Lansoprazole. I was diagnosed two and half years ago and I do take paracetemol as I have described and then Tramadol if the pain is really bad. It has made an amazing difference in my pain levels.
RA pain is like gnawing toothache when it gets hold and it will make your life very miserable. I would definitely go back and talk to your GP or even another GP as you are obviously not coping. Please don't put up with this.
Take care
Jackie
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 Darshin Jackie is absolutely right. You have a chronic painful condition not the odd headache here and there! Some GPs do seem to have something of a block when it comes to pain relief and often don't really understand how much pain we may be in. Alongside DMARDS to control the RA you MUST have adequate pain relief. It needs to be kept topped up regularly throughout the day to achieve the full benefit. Likewise with the Naproxen; it does not work if taken only now and again! I take Co-dydramol during the day and Cocodamol 30/500 at night. Naproxen I take 500mg twice daily along with Omeprazole. I rarely experience joint pain, except of course from the damaged joints which is to be expected. Once your pain relief is sorted you should start to feel better psychologically which in turn will help your physical well being. Stay positive, try to take something from the experience that will help you in the future. You have RA, that doesn't change, but how you see yourself can make a big difference to the progress and outcome of the disease. It's good to have hope but accepting the hand you have been dealt and playing those cards will help you move on. Life does change, it becomes different but when it rains remember to look for the rainbows :) Things will get better but start of with your GP! Lyn x
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Rank: Advanced Member  Groups: Registered
Joined: 3/8/2010 Posts: 914
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Hi Darshin, Hope this reply finds you much better now. I have had my share of lows but not due to RA, hence I have not been on much. Keep in there things will improve soon. I too was on bucket loads of drugs per week to start with, that was my biggest hangup, but now I take 1 per day plus a multivitamin and 6 on a Saturday and a Folic acid on a Sunday. I no longer need pain killers but I do take Mangosteen antioxidant which I have taken for the last 4 years this keeps inflammation at bay. Do believe things will improve, I am sure they will, I too remember thinking was I always to be like this from now on, but I never gave up hope and I have got on top of things now. I wish you lots of good wishes for improvement soon. Keep positive. Thinking about you Lorna 
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Rank: Advanced Member  Groups: Registered
Joined: 3/28/2011 Posts: 956 Location: North Preston
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Hi Darshin
I hope you are feeling better by now. These 'down' moods do come and go but try and be positive and know that you will come out of it. Good Luck
Sheila x
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Rank: Advanced Member
Groups: Registered
Joined: 4/12/2011
Posts: 79
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Hey everyone - it is possible that I have some better news to share.. I had further depo-medrone jab on 12th Aug and this helped quite a lot. But since around 25th Aug I have felt even more noticeably better. The puffiness around wrists and ankles has reduced considerable and the morning stiffness and fatigue are very reduced. My theory is that the Sulfasalazine, the 3rd drug I was put on has kicked in..at around 10 weeks. I am so obviously hoping this is a long term trend as this is the best I have felt since the horrendous symptoms started back in February. God I hope so! - Darshin
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Rank: Advanced Member Groups: Registered
Joined: 4/20/2010 Posts: 1,749 Location: Somerset
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Well done Brilliant news long may it continue
Rose
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Rank: Advanced Member
Groups: Registered
Joined: 12/4/2009
Posts: 2,127
Location: Thornton Cleveleys
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Hi Darshin That's really good news  Let's hope the trend continues. Lyn x
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Rank: Advanced Member Groups: Registered
Joined: 3/8/2010 Posts: 914
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Hi Darshin, I really hope this is the turning point for you, remember to keep pacing yourself now that you're starting to feel better. It is so easy to get carried away then pay for it later. Great news though, keep being positive. Take care Lorna
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 3,157 Location: Huddersfield
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Great news Darshin! Long may it continue 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 Darshin, good news hope you continue to improve, Suzanne x
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Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 714
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Darshin
Brilliant news. I am so pleased something has kicked in for you and long may it continue.
Jackie
x
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Rank: Advanced Member  Groups: Registered
Joined: 6/18/2010 Posts: 351 Location: Herne Bay Kent
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Hi Darshin
Great news, do hope it continues.
Best Wishes
Sue
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