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Rank: Newbie
Groups: Registered
Joined: 8/28/2013
Posts: 3
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Hello, my name is Amanda and I was diagnosed with RA last October and since then I have been prescribed Hydroxychloroquine (which I had horrendous side effects), then Sulfasalazine (bad side effects), steriod jabs and now they have put me on 5mg of Methotrexate as a start for 3 months. I just feel so,so tired - it comes over me in waves, I feel dizzy and nauseous, although the latter is wearing off more. The pains in my hands and wrists get so bad, it really gets me down. Saw my doctor and she won't change any medication, says my inflammation levels are ok - I have to wait for appointment with Rheumatologist end of October. Will anything work or do I have to live with the pain all the time? I feel so useless a lot of the time, I have trouble peeling potatoes, lifting the kettle, cleaning my teeth etc... simple things you just take for granted - I can do them but I pay for it later with the pain. Is this 'normal'?
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Rank: Advanced Member  Groups: Registered
Joined: 3/8/2013 Posts: 144 Location: Dumfries
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Hi Nellie
Pleased to meet you albeit due to RA. I am on hydroxy + a weekly dose of metho which is 20mg. I was diagnosed at the start of March and took quite a high dose of steroids until July. I am surprised that you have to wait so long to see your Rheumatologist when you are suffering like you this. In my experience the steroids really kicked in quickly and alleviated my symptoms as I was like you and very much struggled with getting dressed, lifting the kettle and walking up and down the stairs.
If you have access to your Rheumatologist Team you need to call them and get some help/advice. As for the nausea I know the metho can cause this so the day I take mine I drink lots of water before I take it, have a very light dinner and then more water afterwards. Yes the fatigue is a bloody nuisance symptom of RA and the only advice I can give is if you feel tired try and rest up but if you feel you can do more don't overdo it. It's a learning curve the whole time.
Please keep in touch and let us know how you are getting on.
Lisa x
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Rank: Advanced Member
Groups: Registered
Joined: 8/1/2010
Posts: 255
Location: hampshire
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Hi Amanda I'm sorry you are struggling with the dreaded RA but don't give up because the drugs do work although unfortunately they can take their time. I was diagnosed in 2009 and back then struggled to hold a pen ( bit of a problem as I am a teacher!) found stairs very painful and was just so tired. I am on hydroxy and 7.5 mg of mtx. Now, I live a relatively normal life. I'm careful to pace myself and get the occasional aches and twinges but mostly I feel OK. I have always kept a diary of my symptoms and have found this a help when I see my rheumy. It also is good to look back in when I feel a bit fed up with it all as it reminds me how much I have improved. The drugs do take time to kick in and sometimes it can be difficult to find the right drugs to suit you. Keep posting here because you will always find someone to help/ sympathise. The forum was a lifesaver to me at the start. Hugs Sue 
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Rank: Advanced Member  Groups: Registered
Joined: 4/24/2013 Posts: 703 Location: Hexham
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Sue B recommended a symptoms diary to show the Rheumy Team. I'd say you need it for your GP too who, from what you say, may not be too RA aware. It's horrible to say, but diagnosing and finding the correct treatment for RA is a lengthy process. Each drug can take a minimum of 3 - 6 months to take effect. I was diagnosed just over a year ago and we are still struggling to find what's right for me. So you do need to persevere. What pain relief are you using? The NSAID family (which includes aspirin and ibuorifen, diclofenac etc) is normally best, unless you have a history of stomach / bowel disorders. You don't say what form the methotrexate (MTX) is - tablet or injectable. 5mg is a low dose for tablet. For me MTX was no use. No benefit from the tablets and the injectable form caused a reaction; but others on here have had very good experiences with it. As to the fatigue, it's true that the RA will cause it, as it fights the diease. But the meds will also do it. That was one of the severe side effects I had with MTX Finally - your GP's reation that your inflammatory markers are OK needs to be challenged. These markers are only indicators and it is perfectly possible for someone to have active disease, feel awful, but have low CSR. My GP takes the view that what the patient says they feel like is the most important diagnostic. This is where the symptoms diary comes in and will help get your GP more on your side. Paul Barrett
Hexham - Northumberland - Loads of spectacular walks - all I need now are the joints to go with them! :)
Enthesitis (2012)
Ulcerative Colitis (1990)
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Rank: Advanced Member  Groups: Registered
Joined: 8/25/2010 Posts: 1,289 Location: Buckinghamshire
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hi Amanda,
sorry to hear life's a struggle for you, unfortunately the drugs do take time to work and each drug you have to give a fair chance too.
i started on Methotrexate building up to 20mg where that really affected my sleep, and then Hydroxy was added about 6 months later and had a waiting game to see if this combination worked. unfortunately it didn't for me, so again i had a good 6 months wait while i was waiting for funding approval from my PCT for Anti-TNF ( Humira ) which i have now been on exactly two years now and has done wonders for me.
i know take 10mg Methotrexate along with a reduced Hydroxy as well.
so really it is such a long drawn out process, but hopefully you will get the right drugs that will work for you eventually.
do you have a Rheumy Nurse you can contact, perhaps a depo steroid injection could get you through this time. in the early days i had about 3 or 4 and two worked well and two didn't, i now don't take them as i came out in hives but that's just me, but that would be a question to ask your Rheumy Nurse.
as for the fatigue well that one get's me big time, but then again i'm not a good sleeper, i could cry with the fatigue this morning but i don't have to go out and face a job so somehow i cope. i have to sort out hanging new curtains this afternoon but fortunately my hubby has retired and i know he will help, i really don't know the answer to the fatigue because even under control it's my biggest bug bear, but then again as i say i don't sleep well so i have to take that into account.
do you have help at home in the way of family, i had to give up peeling veg and other limiations in the kitchen a long time ago as i am left handed and my left wrist is my worst joint. i think if you can't clean your teeth then a visit to the GP at least to start with and as i say Rheumy Nurse is a must.
i have never taken steroids but they could be another option perhaps, but i have no experience of this so wouldn't like to guide you in that direction but it would be well worth a talk with your GP. i always run to mine as he's such a support, and does have good knowledge RA wise.
i really feel for you, perhaps phoning the NRAS Helpline might help, they are a good support in knowing you are not alone .. i used them a lot in the early days at each stage of my process.
sorry i can't give more specific help but hope you feel you are not so alone,
RA is a very individual disease and each of us need different meds to get us to a reasonable level.
do come back and let us know how you are,
Suzanne
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Rank: Newbie
Groups: Registered
Joined: 8/28/2013
Posts: 3
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Thank you all so much for your advice, support and understanding. There is certainly quite a lot to take in but so informative. Thank you. Sorry I sounded so negative it was a really bad day when I wrote that post. I will certainly keep you informed how I get on. :-)
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Rank: Advanced Member Groups: Registered
Joined: 4/24/2013 Posts: 703 Location: Hexham
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You never have to apologise for being grumpy. We've all been there - that's what so good about this forum - we really do sympathise Paul Barrett
Hexham - Northumberland - Loads of spectacular walks - all I need now are the joints to go with them! :)
Enthesitis (2012)
Ulcerative Colitis (1990)
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,689 Location: Durham
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Hi Nellie, One of the worst and most frustrating things about RA is waiting for the various drugs/combinations of drugs to work, and ultimately bring some benefits for you - it`s a long process, and very morale-sapping, especially when even the most simple tasks are beyond you. There are also the side-effects that the different drugs bring with them, so you can end up feeling quite low. You aren`t alone, though, as we have all been where you are now. October is still a way off, so if you have access to a rheumy nurse, now is the time to phone her, so that you can hopefully be seen sooner. I`m surprised your GP is happy with your inflammatory markers - they are a guide, and don`t necessarily mean everything is OK. My GP was my lifeline when I was first diagnosed, and waiting for meds to work - but he would always bow to my rheumy`s advice if there was a problem. I hope you can get something sorted soon - a depo jab is definitely worth considering. Take care, and there is light at the end of the tunnel, I promise you. Kathleen x
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Rank: Advanced Member
Groups: Registered
Joined: 8/1/2010
Posts: 255
Location: hampshire
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Hi Nellie Never worry about having a moan on here. Even when you feel you don't want to make a fuss to your friends and family you can come on here and really get everything off your chest because you know we really do understand where you are coming from. It can be very therapeutic to have a good rant on occasion. Hugs Sue 
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