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Recently diagnosed and looking for advice Options
MaryC
#1 Posted : Sunday, December 08, 2013 5:03:57 PM Quote
Rank: Newbie

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Joined: 12/8/2013
Posts: 2
I was diagnosed with RA in August (only one swollen finger joint and a bit of stiffness in my hands which had persisted for a year). Started on methotrexate in August and now suffer from nausea two days a week and headaches two days a week. Knees and ankles are now stiff as well. Is this typical? I feel the medication is causing most of my problems. I also had a stereiod injection into my finger joint - the areas has now turned purple - like a bruise and the skin seems to have thinned. Can anyone advise me?
Angiecha
#2 Posted : Monday, December 09, 2013 3:41:10 PM Quote
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Joined: 9/5/2010
Posts: 185
Location: Lowestoft, Suffolk
Hi Mary

Sorry to hear you're having worse troubles now diagnosed.

It is tricky getting the right medication. I'm not medically trained but had a similar start to you with regard to symptoms. Sounds to me like they're trying to crack a nut with a sledgehammer! Scared

I was given information about the drugs available and was started on Hydroxychloroquine - it is the least toxic of the DMARDS (Disease Modifying Drugs) and to be honest, it worked. I take Naproxen too which is an anti inflammatory. I have joint aches constantly but not to the level I had pre-diagnosis.

My advice would be to get back to your Dr/Rheumatologist and let them know the side effects of Methotrexate and try something else.

Wish you the best of luck!

Angie
Be yourself - everyone else is taken. XX
lisamcb
#3 Posted : Monday, December 09, 2013 8:46:15 PM Quote
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Joined: 3/8/2013
Posts: 144
Location: Dumfries
Hi Mary

Sorry to hear about your troubles, I was just diagnosed in March and used to suffer from terrible nausea with the metho but take Folic Acid 6 days out of 7 which seems to help. I do find I am more prone to sore heads too but they are usually when I am anxious or stressed out. I can't advise you on the injections I'm afraid but if you have a number for your Rheumatology Team I would ask their advice.

Please keep in touch and let us know how things are going.

Lisa x
gogs
#4 Posted : Wednesday, December 11, 2013 6:56:02 AM Quote
Rank: Advanced Member


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Joined: 10/20/2012
Posts: 304
Location: Cheshire
Hi Mary,

If you don't feel good, use the GP or hospital contacts. Don't just put up with it.
The early period is really difficult because you the patient don't know what you have to put up with or what can be changed.

My advice is start to learn as fast as you can, become your own advocate, if you don't like something keep talking about
it until someone listens

I speak from a lot of experience of very poor care in my first year. I put up with appalling pain and disability thinking I was
the problem. It was only a chance meeting on holiday of a really nice woman (who happened to be a consultant rheumatologist),
that finally helped me make the changes i needed to make.

I changed my consultant two months ago, admittedly I am at present supported my high dose IM steroids, but I feel a lot better
and very hopeful.

As someone said - it sounds as if they are going at you with a sledgehammer.

Good luck and keep us posted.

GogsThumpUp
Kathleen_C
#5 Posted : Wednesday, December 11, 2013 2:58:20 PM Quote
Rank: Advanced Member


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Joined: 12/3/2009
Posts: 1,689
Location: Durham
Hi Mary, and welcome to the forum - sorry you are having problems. It`s very hard in the days and weeks following diagnosis when you`re waiting and hoping for meds to work. You should have a contact number for your specialist nurse, who will be able to advise you about the MTX. Failing that, you could talk to your GP and he may be able to speak to your rheumy on your behalf.

The amount of folic acid you are prescribed seems to vary wildly, so you may need to take it more often, but again that would be up to your rheumy team.

The only time I bruised badly after a steroid injection was actually in the days before I had RA - I had an injection into my Achilles tendon, and the bruising was spectacular, though it did clear up.

Take care,

Kathleen x


julie_warwick
#6 Posted : Wednesday, December 11, 2013 3:49:23 PM Quote
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Joined: 10/25/2013
Posts: 83
Location: warwick
Hi Mary
I am pretty new to this too. diagnosed in September but I think had it for a while before and just ignored it putting it down to other things. I have been on methotrexate for 6weeks and get some mild nausea and heartburn and feel desperately tired , but it could be worse. also take prednisolone which I hate , can't sleep and have put on weight but at least it's helped the awful stiffness. symptom wise I actually think I'm worse but it's early days and it's horrible not knowing whether it's doing any good isn't it ? after being told I would be seen monthly I have just got an appointment to see consultant in jan. and nurse in april !! feel a little abandoned. what fun this is !
Paul Barrett
#7 Posted : Wednesday, December 11, 2013 5:19:15 PM Quote
Rank: Advanced Member


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Joined: 4/24/2013
Posts: 703
Location: Hexham
Hi Mary.

Sorry to hear of your difficulties. I too am relatively recently diagnosed (Aug 2012) and we are still searching for the right treatment for me.

Many people on here use anti-TNF drugs but they are expensive and NICE guidelines won't let you start on those until you have failed at least 2 DMARDs (Disease Modifying Anti-Rheumatic Drugs). MTX is a a DMARD. Another one that is a very old drug but is still very effective is Sulfazalazine,, so they may try you on that.

How bad is the nausea? Are you actually vomiting? Are you on any form of anti-emetic to compensate. It seems to me that your side effects and symptoms indicate that the treatment is ineffective. Now, we are told that MTX can take from 3 - 6 months to take effect so if you started in August it could be argued that you need to give it a little more time. However if it were me I would be kicking up a stink about the side effects and lack of relief for my symptoms.

Are you taking tablets or self injecting?
Paul Barrett

Hexham - Northumberland - Loads of spectacular walks - all I need now are the joints to go with them! :)

Enthesitis (2012)
Ulcerative Colitis (1990)
MaryC
#8 Posted : Wednesday, December 11, 2013 7:48:42 PM Quote
Rank: Newbie

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Joined: 12/8/2013
Posts: 2
Thank you all so much for replying. Smile I will take your good advice and go and talk to the RA nurse about the drugs. It's very re-assuring that I'm not the only one with meds problems.
Lorna-A
#9 Posted : Sunday, January 19, 2014 7:30:52 PM Quote
Rank: Advanced Member


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Joined: 3/8/2010
Posts: 914

Hi Mary,

I'm Lorna, I have had RA for 6 years, I was very ill to start with but I keep well now. I was put on the triple therapy straight away and it has made such a difference to my well being now. It took a while to settle down as you're taking so many different drugs to get it under control. It does settle down within 3 months usually.

Keep your chin up things will get easier. Be as positive as you can as the outcome does improve.

I really understand how you feel there is nothing like being in pain all the time, it's soul destroying.

Take care Lorna x
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