10 months in and still trying to find a balance!

Bones, joints and muscles
1

Hi there, new to the forums and looking for advice, hints, coping strategies etc...

I'm 30 and have been struggling with joint pain since middle of last year diagnosed with RA, my cons (been through 3) and nurse are both trying to find a balance of meds to help ease my flares etc. currently on hydroxychloroquine and sulfasalzine. The plan was to gradually increase the Sul to 5-6 tabs a day, but after 3 weeks my liver wasn't playing ball and I became quite unwell. Back onto 1 tab for a few weeks to see if the same will happen again or if it was an isolated incident! Unfortunately it looks like my liver going to cope again, so will be onto Mxt next. 

I'm really really unhappy about trying this drug, I've yet to hear a story where it has worked. Has anyone here got a positive note/story?

I'm desperate to get back to work, I'm a midwife on the verge of losing my job as I'm not currently able to do what is required of me, and I've had to take a long period of time off.

I've tried a bunch of holistic remedies to ease my pains in addition to medication (pain meds included: co codmol 30/500 naproxen 500mg), but nothing seems to help. I'm exercising, losing weight, eating healthier, been taking apple cider vinegar, vitamins etc. in addition to hot/cold compresses, osteopathy, physio, acupuncture, meditation.. I'm willing to give anything a go especially if there is a study etc to back it up.  If anyone can recommend something that'll be great! 

Also are the following side affects normal with RA and the medication I'm taking? Or am I just falling apart??!

thinning hair,

nausea (I've had this over 18 months anyway but just checking)

headaches

mood swings (I'm generally a lovely person!) 

extreme fatigue (like needing a nap after climbing a flight of stairs) 

generall unwell feeling (like I'm about to get flu)

blurry vision (eyes checked regularly)

brain fog (that could just be me :o/) 

im im sure there's a few more.. But you guys have had enough of me!

thank you in advance.  

2

Probably should of added which joints are affected... Elbows/wrists/hands, hips/knees/ankles/feet. 

Bloods have aves always come back normal, part from when my liver had a small hiccup. Inflammation seen on scans etc. 

3

I'm at a loss. Don't they prescribe Methotrexate or biologics in the UK.

When you have this disease you need to be your advocate. That means:

1. Insisting on treatment by a board certified rheumatoloigst.

2. Insisting on changing drugs when what you're currently on does not work after a reasonable period.

4

You could try taking a natural supplement to help support your joints and hopefully ease the pain a bit - something like Gopo Rosehip capsules or glucosamine tablets. You could also try rubbing a natural gel into the joints - again glucosamine, or the new Flexiseq gel - something that is designed to lubricate and strengthen joints from the inside instead of just taking painkillers.

- Mistrys

5

Hi, I have fibromyalgia and now over the last year RA. I have been having flare ups over the last month or so and have almost driven myself crazy trying to figure up what causes them. I am taking Hydroxychloroquine along with various vitamins. I try to eat a low acid diet, avoid meat, dairy, wheat and gluten and refined sugar. I drink cider vinegar and take salt baths and exercise. I have recently increased my dose of Vitamin C 1000mg twice a day am and pm and I do think its helping. It helps to remember that there may not be a quick solution and when trying a new remedy you often feel worse before you feel better. Extreme fatigue and brain fog are symptoms of RA. Although there have been times when I haven't been able to walk or my wrist or ankles have been painful generally this only last 2 days so I think all the above is working it's just going to take time. Don't loose hope. Good Luck.

6

Methotrexate is the drug I'm not overly keen on trying. 

Never heard of biologics

And I've changed my rheumatology consultant the first time as I was unhappy with the level of care I've received. The second one is all about waiting and seeing, and I'm yet to see my 3rd one, appt due in the next few weeks. It's not like I'm letting the team do what they feel is necessary, it has to work for me.

7

I've been on methotrexate and as dose got higher I began to cope better until consultant put me on highest dose and that irritated my liver.I was taken off it and was told I wouldnt be able to go back on.my hair thinned too.I am now on the sulfasazine among steroids,nerve painkillers and just started on rituximab infusion.humira and embrel didnt work.All your side effects I too get apart from blurred vision and nausea.Nearly every day I am feeling fluey aching and tingling.It is a cruel disease that for me I just cant get control of.my consultant and specialist nurses told me not to take supplements of any kind.I asked about diet and was told nothing would help.

Hope methotrexate helps you but am surprised they offering you it if the sulfasazine irritated your liver.good luck.I am sure we all need some

8

Hi my story is much the same,  BUT.... I am on my third injection of enbrel and already much better! Still taking sulthasalazine but no naproxen. Have faith they will sort you out in the end......I hope this isn't placebo effect! But hey ho if it works without side effects that is good for me.