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zoan
#1 Posted : Sunday, June 16, 2013 10:31:22 PM Quote
Rank: Newbie

Groups: Registered

Joined: 6/11/2013
Posts: 2
hi, i saw a rheumatology consultant in march and started on sulfasalazine, i feel a bit like i don't really know what's going on, i also get so tired i just crash out which is hard with young children. i spoke to a nurse who arranged for me to have a steroid injection which i had on thursday (4 days ago) and i don't feel any better. i had steroid tablets in february for asthma and it was the best i'd felt for a long time so i was really hopeful the injection would make a big difference so now i question if this is really the right diagnosis. i really don't know what's going on. i was supposed to see a rheumatology nurse after 4 months but the appointment is cancelled so i have to wait for my 6 month consultant appointment in september. i just want to not feel this tired
Little Miss Sunshine73
#2 Posted : Sunday, June 16, 2013 11:16:11 PM Quote
Rank: Advanced Member


Groups: Registered

Joined: 3/29/2013
Posts: 106
Location: Surrey
Hi Zone BigGrin

Welcome to the forum.... I'm quite new too but didn't want to 'read & run'.

Have you got a secretarial team you can contact? My rheumy team consists of my specalist, nurse & 2 secretary's & I was given contact numbers & email addresses quite early on. I think the team structure depends on area though Sad & my doctor has now become part of this support group.

Are you only taking 1 lot of medication? I do to know much about the different medications but I take Methotrexate, Hydroxchlotoquine, Prednisone & folic acid.

Tiredness is part of medication & Rehumatoid Arthritis I've Ben told, I too have young children & work part time (just an extra bit of pressure RollEyes ) & it's so hard juggling everything when your tired Sad.

I hope you get some answers, Louise.
Little Miss Sunshine73
#3 Posted : Sunday, June 16, 2013 11:16:57 PM Quote
Rank: Advanced Member


Groups: Registered

Joined: 3/29/2013
Posts: 106
Location: Surrey
Sorry Zoan (silly auto correct)RollEyes
Jane.
#4 Posted : Sunday, June 16, 2013 11:55:03 PM Quote
Rank: Advanced Member


Groups: Registered

Joined: 5/2/2012
Posts: 670
Location: where the sun always shines :o
Hello Zoan

Don't forget the NRAs helpline to have a chat - they are a font of knowledgeBigGrin
I message more tomorrow, feeling stiff
Take care
Jane
Xxx
Rebecca D
#5 Posted : Monday, June 17, 2013 10:14:11 AM Quote
Rank: Advanced Member

Groups: Registered

Joined: 12/4/2009
Posts: 242
Hi Zoan

Fatigue can be really hard to cope with and unfortunately it plays a big part of this Rheumatoid Disease. Some days I find the fatigue more crippling than the pain. Try and break down tasks into smaller parts and take rests in between. I know that is really difficult if you have young children. Do you have any family that can help you out?

What is the relationship like with your GP? Have you tried talking through all your symptoms with your doctor? If they are understanding and supportive they should be able to work on your behalf and fast track an appointment with your Rheumatologist.

I hope you can find a way forward.
Best wishes
Rebecca
Kathleen_C
#6 Posted : Monday, June 17, 2013 1:11:58 PM Quote
Rank: Advanced Member


Groups: Registered

Joined: 12/3/2009
Posts: 1,689
Location: Durham
Hi Zoan, and welcome to the forum. Everyone here will know how you are feeling, and can empathise with your tiredness etc.

Sometimes the drugs take about 12 weeks to work, so it`s a shame if you have to wait until September for your next appointment - the treatment and frequency of consultations seems to vary enormously across the country. If you do not have access to a rheumy helpline, then I would try your GP. If the sulpha isn`t working, he can maybe press for an earlier appointment. A lot of new patients now are put on a combination of meds, rather than just one single med, to hit the RA hard, as it were.

Steroid injections are great when they help, but occasionally they don`t work. You don`t say whether or not you are taking NSAIDs - anti-inflammatory drugs, such as Naproxen, Diclofenac etc. They may help your stiffness. Sadly, fatigue plays a huge part in RA - no matter which drugs you take, you are likely to be hit by it, which will be tough if you have young children. As Rebecca says, you have to learn to pace yourself, and try to get some help from family and friends if you can.

From my own experience - I started on sulphasalazine, which didn`t work for me at all, then went on to methotrexate, then a few more drugs/combinations of drugs, until eventually I was put on humira ( anti-TNF ) which made a massive difference. The first 18 months were hard - I couldn`t pick up my grandsons, so life was very frustrating, and I was barely mobile. I`m very lucky with my GP, who was immensely supportive, and kept me sane while waiting for various meds to work.

Things do get better, but it is very much trial & error with these meds. Please try to get an earlier appointment, and let us know how you get on,

Kathleen x

SueB
#7 Posted : Monday, June 17, 2013 3:22:58 PM Quote
Rank: Advanced Member

Groups: Registered

Joined: 8/1/2010
Posts: 255
Location: hampshire
Hi Zoan
Welcome to the forum. We all know where you are coming from as fatigue plays a big part in RA. When I was first on the forum, Jenni posted a reference to 'spoon theory' It is really worth Googling as it explains how we need to think when the fatigue is bad. The important thing is to pace yourself. Decide what is really important and ignore the rest. I discovered that ironing is rarely necessary if you fold clothes carefully and dust can become invisibleLOL
The drugs can take a while to kick in but be prepared to nag your rheumy nurse if they aren't working. When I was diagnosed 4 years ago I couldn't hold a pen or walk down stairs. I take hydroxy, folic acid and mtx (only a low dose because I can't tolerate a higher one) Now no-one would know there was anything wrong with me most of the time. I have learnt to say 'no' when I am achy and I can ignore weeds in my flower beds.
Lood luck and keep posting
SueThumpUp
zoan
#8 Posted : Monday, June 17, 2013 8:59:35 PM Quote
Rank: Newbie

Groups: Registered

Joined: 6/11/2013
Posts: 2
thanks everyone, it's just nice to know you're not alone. today was a better one, my daughter said "mummy are you going to sleep today?" and i could actually say no and i didn't just crash out. maybe the steroids are starting to work. i take paracetamol and ibuprofen, naproxen made me wheezey, i hate having to take anything, i already take stuff for 2 other problems as well as the sulfasalazine, the list of drugs is quite daunting. anyway thanks for all your advice, i think i will contact my gp, i spoke to a rheumatology nurse about my cancelled appointment and feeling bad and she was quite short with me and arranged for my gp surgery to give me the injection. my gp surgery now decide over the phone if you need an appointment and if so whether you need to see a dr or nurse so i may not even get an appointment but i'll try. i'm just very new to all this and it's not easy is it?! thank you again
Jane.
#9 Posted : Monday, June 17, 2013 9:04:46 PM Quote
Rank: Advanced Member


Groups: Registered

Joined: 5/2/2012
Posts: 670
Location: where the sun always shines :o
Sorry for not typing a lot last nite.
I would echo other posts in contacting rheumatology department and explain how you are feeling.
I'm very lucky to receive good care from my hospital - the primary care trust (pct) excels. Sadly different pct do not reflect great care I am lucky to receive.
They offer a phone service where I call to speak with a nurse from rheumy or leave a message for call back, they get me in quickly for tweaking meds/steroid injection.

Please be aware that meds don't click in suddenly......normally 3 months ish.

My first meds was sulfzal then hydro added then methotrexate then something else that did not do my tummy any good! I'm now on anti tnf's as well but it's early days.

Hold in there....soon you will feel less stiff honestly!
When I was diagnosed in 2007 after having a baby I thought that I would be stiff forever....how wrong was I ThumpUp

My advice to you is if you speak with rheumatology and tell them how you are feeling because if you don't make contact, then they don't know.

Please ask the forum anytime because everyone has personal knowledge and experiences.

Take care
Gentle hug to you.💜
Jane
Xxx
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