About treatments and diagnosis

I have been having joint pain for the last 5 years. Started after a very stressful period in my life. I was pregnant with my third baby and found out 4 weeks before he was due that I had a small skin cancer. We were also getting a new kitchen and our only running water was the upstairs bath, so I was pregnant and doing the dishes in the bath and working and looking after two young children.

My wrist and ankle pain started after he was born. Hand pain too. It was very on and off at first. I had long term back pain for many years. ( which weirdly went away when I was pregnant)

I had several episodes where I could not turn my neck for days.

The things that seemed to bring the pain on was stress, viruses and my period.

All my blood tests were negative so I ignored.

Last year I was taking painkillers most days and found I was unable to work without ibuprofen. I am a Physio ( the irony is not lost on me) my left shoulder was horribly sore and I had to go around with a T. rex arm, not lifting it, then one morning my right joined in too and I could not ignore the pattern of symptoms.

Again with a period of recent increased stress things have gone pear shaped. Now there is not many joints that haven't been sore at some point and I am so painful I am stopping work until I feel better. I have recently had swelling and intense burning. This is the first time there has been swelling.

I still have no official diagnosis,, they are querying sero negative rheumatoid. I have been started on sulphasalazine, and had two steroid injections.

I wanted to ask if this sounds like other people's experiences, and if they have had side effects. I am having hair loss. 😬

How long did a diagnosis take?

Do you find the sulphasalazine good?? I really hope it works as I feel this has really effected my life now, we are super skint as I can't bear working on my sore wrists. Children have such a tired mum and they often have to chop veg for me, drain pans etc. Exercise seems out of the question at the moment.

All in all one pretty darn depressed mum. Advise welcome🤞

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Not sure what you mean. Well that's me put off this site.

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Ignore him! A person who joined the site today and only comments are these biased and ignorant ones. I have reported him for abuse.

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Thanks!

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How rude- negative comments like these are not welcome on this helpful and friendly site!!

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Thanks !

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I don't think this was a helpful or relevant comment Kwil. We are supposed to be a support group.

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Thanks

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Hi Cindy and welcome to our merry and helpful band (well mainly where the heck Kwil is coming from with that reply I don't know!!!). My RA is sero-negative and I'm on methotrexate so sorry no experience of your med. I'm well enough controlled that at present I can still work full time.

A couple of things I have found helps is drinking loads of water and then some more throughout my day. Eating a bit cleaner than I was by reducing refined sugars, gluten and dairy. I have found that potatoes and omatoes make my RA grumble as does not getting enough rest/sleep. Play dough has been good for exercising and mobilising my hands - from the fridge and with s little lavender oil in it is very nice!

Finding some source of emotional support beyond family and friends has payed dividends - we have a service called 'Let's talk' which GPS or the patient themselves can refer to and I see one of their counsellors about once every 6 weeks to 'off load' my worries, fears, frustrations etc so I don't have to carry them around with me as well.

Ask for X-rays/scans of hands and feet as well as that left shoulder to see if anything is occurring re erosion or ligament inflammation. Ask to be referred to a podiatrist who will check your feet and my refer on to orthotics to have special insoles made for you. These may help with the back pain as your arches will be better supported - mine have a dip for my big toe joint as well and that's made a great difference in my comfort when walking.

Well that's a lot of info to be going on with for now.

All the best

Ali

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Thanks, lots of top tips.

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I tried sulphazalazine but it didn't work for me- I too was trying to cope as a single mum with 2 young kids.

I now take methotrexate injections.

My point is- this WILL get better!!

All of us have had to run the gauntlet of trying different meds to find the right one.

My bloods never showed either but I was fortunate to have an amazing consultant that took the fact my mother and sister has it as an indicator that I had it too.

It's been 5 years for me.

What I'm trying to say is Don't give up. It will improve.

Rest when you can, listen to your body and be kind to yourself.

I wish you lots of luck!!!!

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Thanks so much.

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Hi Cindy,

Welcome to the forum, we are a caring and helpful bunch I promise. I haven't used sulpha either but have been in methotrexate and leflunomide. Unfortunately a lot of the dmards have side effects and affect everyone differently. Some will stop once your body gets used to the medication but if you are still experiencing hair loss or it is getting worse then talk to your doctor. Please don't give in to this horrible disease as things will improve as you find the right treatment. I work full time as a Reception class teacher (probably the worst year group to lose my heart to lol) and go to the gym. You do need to listen to your body and if you need to sleep then sleep. There is a lot of debate about food and RA but I personally haven't found anything that makes a difference either way.

Sending you gentle hugs 🤗

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Thanks, much appreciated

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Sulpha is one of the drugs I take and it is effective for me. Beware the orange pee tho' - can be a bit of a surprise! But it is slow acting. When I started on drugs my hair thinned, but after about 3 months it stopped falling out and is now normal again. The first few months on Sulpha I also had a rather excitable stomach, but that slowly wore off too.

Getting a precise diagnosis can take time, and people can be treated under the general heading of inflammatory arthritis for years. But the important thing is to have a rheumatologist treating you and monitoring you, rather than a name. Did you have the anti-CCP blood test as well as the rheumatoid factor.

Was the steroid injection helpful? As how you respond to things also helps get to a diagnosis. I have always had low inflammation markers in my blood, but steroids are like magic for me - so no matter what blood test says my rheumy knows I do have inflammation.

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The steroids are magic alright. I think the sulpha does work too, I went off it for a week when my hair started falling out and it was a dreadful dreadful week.

I am so glad to hear that your hair loss settled down, as I am not sure if I could handle that too.

Thanks for sharing.

Not sure about my cc p. Will ask the dr. Thanks a million

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Hello and welcome. Sounds familiar and how I admire those of you who are coping with young children and RA. I'm on methotrexate injections which broadly keep my joints sedated. Haven't had sulphas, but had problems with oral M/X, so was reluctant to have other oral meds.

I'm much better than I was at the beginning of my 'RA journey' , though it took while, and have been able to return to most activities.

So don't despair - things will get better when you find the right meds

And it's good that your children are learning to cook and be safe in the kitchen!

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At the moment I can't seem to imagine this going away, so very relieved to hear that you can return to things. Thank you so much

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Sulphasalazine worked wonders for me for 3 years and taken with food and drinking lots of water I had no noticeable side effects. Have you looked a the NRAS site for lots of helpful information - or phoned their very helpful helpline including advice on pacing yourself to help cope with fatigue. While it might take a few weeks for any drugs to take effect most find that they do make a great improvement to life overall. Good Luck !

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Thanks so much

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Hi Cindy

Don't be put off by stupidity...there's always one!

Your symptoms sound very familiar. I too am sero negative (probable PsA). I don't know how you manage, with kids an all. You must be exhausted!

I was on sulfasalazine to begin with, but it didn't suit me. Lots of folks are fine with it though.

As far as getting a diagnosis...that has taken a long time, and is still up in the air. I'm seeing a prof soon, so hopefully I will know more.

Do you have family to help with the children, and chores. Be good for you to rest a wee bit. I find swimming the best exercise. Helps with the depression too.

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Thanks, they are wondering about psoriatic with me too as my dad has bad psoriasis, but I have none.

I wish I had more help with kids, but at the moment just being off work is helping.

Thanks for your advise

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I started on sulfasalazine, it helped me a little but not enough so they put me on methotraxate. Now I'm on both and doing well. I was in the same boat, I'm a small girl and when I told my doctor he dismissed it because I didn't look like I had inflammation. But little did he know. You should ask your doctor to do a CRP test. It's an inflammation marker. That was the only thing that piped up for me. Every other test was normal. Hope it helps.

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Thanks it's good to know some folk have had normal bloods too.

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Sulfasalazine is one of the milder drugs. So if it works for you and you don't ha e to add anything else that's fantastic. I was freaking out about potential aid effect but honestly don't read into them too much. Everyone is different and may react differently.

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My bloods are always normal Cindy 😊

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Hi Cindy--- please don't be put off by that horrid, uncalled for reply. We are usually a very helpful bunch of people. Maybe admin can contact you privately to confirm that? I was diagnosed after 4.5 years of pestering the medical profession . I joined the site after diagnosis 3 years ago and found it invaluable.

I do hope you haven't been put off love.

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Thanks it was a little depressing when I saw that this morning, made me feel very stupid. But very appreciative to all you good folk leaving kind and helpful advice. Thanks

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Thanks for staying around and glad that you haven't been put off. Any question however "" silly" you may feel it is-- will be answered by someone who probably asked it themselves when first diagnosed.

I'm sorry you've had to join this site but I hope you now feel more welcome 😊

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Hi Cindy,

Welcome to the site.

I'm fairly new here and have found many lovely helpful people here . Most people seem to be very tolerant and patient of even the simplest of questions. Don't let that ignorant person put you off.!!

I have two teenage sons , my hat off to you in admiration for being able to care for your young children , whilst battling RD.

take care , and a gentle hug or two !!

Karen

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Thanks so much. :-)

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Hello Cindymcloughlin, so very sorry about the first reply being so inappropriate. I have been using this site for over a year and it has been so benaficial. Do not let that rude person deter you.

I am Canadian and seropositive for RD. There is a great deal of data regarding the effect of pregnancy on RD. It seems most women with autoimmune conditions will experience remission in pregnancy.

There is a test called Jointstat., developed by a company named Augurex. It is based on a protein 14.3.3.3. They are now developing a Biologic using this protein however, it is far more sensitive than RFor CPP.

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The fact that both sides are affected (Bilateral) would suggest RD.

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Thanks. That's very very interesting. I wasn't ever sure if my back was part of it.or just a red herring. I am at least glad the Dr started treatment despite my blood tests but this new test sounds hopeful.

Thanks so much.

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HI and welcome! I'm certain you have figured out that most everyone here is kind and genuinely concerned for the well being of all. Ignore those less than kind. They are like landscaping. Always present, not worth your time or precious energy.

I have RD along with some other autoimmune issues and it took a long time to get the right diagnosis but truly everyone is different. Had I seen the rheumatologist I have now a decade ago, I probably would have been spared some joint damage and a whole lot of pain. I'm also seronegative. The main thing I've learned is diagnosis times and treatments vary greatly and there's no gold standard where you can perform a couple tests and say with absolute certainty what your diagnosis is. Autoimmune diseases also present very similarly making them even harder to figure out. The other main thing I've learned is to be good to myself. So often times we don't show ourselves the same grace we show others. That can leave one even more tired and depressed. The little things you can do for yourself will matter a lot. The little things loved ones can do to support you is priceless. Something as simple as someone else doing the dishes can be huge when joints aren't behaving and pain just won't stop. Everyone here has really been absolutely amazing. I truly wish you the best and hope you will continue with us along your journey.

Best ~

S

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Phew, I was worried this morning when reading that ignorant response that you would have been left high and dry regarding supportive and useful responses.... silly me I should have had more faith in this fab bunch of people - maybe RA secretly stands for Really Amazing!! 😎

All the best

Ali

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I like it. Let's do a re name. I am very greatful for this support. Thank you all.

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Hi, I was diagnosed at the end of March with psoriatic arthritis, like you my dad had it but I don't.

I started on sulfasalazine at end of April and can tell things have improved even with only being on it a couple of months-not totally back to normal but much improved. No side effects at all, so far it's working well for me.

I have 3 children too, the youngest is 16 months so I understand about trying to cope with pain with little ones around!

Xx

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Wow we sound like twins. Which joints does it affect for you?

Sorry to pester with questions, but can I please ask what your swelling is like? Mine would leave little dents in it if you pushed with your finger. ( pitting) but not big and red. Although very hot to touch. Does this sound similar to you?

Sorry to ask, my head is going round in circles and the rheumy consultant only does 6 monthly appointments, which feels a long time to wait when you have questions building up.

Three kids sure makes it hard to 'pace'!! ;-)

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I find it moves around a lot. Worst joints are in wrists and fingers but sometimes it was also knees, elbows and shoulders. Since I've been on the sulfasalazine I've had no pain in the big joints and less pain in the wrists/fingers although it is still there. I mainly get swelling in my fingers and it goes red- the description of sausage fingers is spot on for me when I do have swelling 😆

6 months apart is a long time to wait- my next appt is next week to see how things are on the meds, I'm hoping we can give the sulfasalazine a bit longer to work before introducing anything else!

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Sounds very similar to my own. Thanks for that.

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