Diagnosis issues

[VanK]

Hi, glad to have found this forum! I'm having issues gaining a diagnosis. Looking back, I've experienced recurrent joint problems, tendinitis, bursitis for the past ten years. Two years ago I experienced a debilitating few months of swollen, painful joints & extreme fatigue. My old GP suspected RA as my grandfather had had. I was referred to a rheum but by that time all symptoms gone. She diagnosed me with reactive arthritis.

Fast forward...have had several recurrent flares since the first, bloods always come back normal for inflammatory markers. Except last year the Ana was 1:640. This year has seen my complement c3 drop to 17 so low, c4 is borderline low.

My rheum has called me an enigma, which is great but not helping things. I've just had a bone scan this week - they also did a CT scan. Awaiting results. Will not see rheum till April but she mentioned starting me on hydroxychloride - I'm a little nervous about taking due to wide effects but when I'm in a flare my whole life stops. I've had to cut down my business & friends have dropped off.

Symptoms move symmetrically around my body, knees permanently inflamed (US revealed entethesis). Shoulders, ribs, jaw, knuckles, wrists range from achy to sharp, knife-like pain...only when I'm having a flare though.

Does this sound like Ra? I've been told it seems like something is "brewing". Would they have done a CT scan if they had/hadn't seen anything? Can you have Ra with no inflammatory markers? Should I take the meds if no definitive diagnosis??

Thanks for any advice!

[Ali_H]

Hi VanK,

Sorry to hear that you're suffering and getting no clear answers - that can often be the case for these tricky, variable conditions. I can't give you any advice re diagnosis or the med hydroxychloride - I've only ever had methotrexate but i can give some general tips for what they're worth.

As your condition appears to be predominantly reactive in nature it may be worth looking to see if any foods make your condition worse - too many potatoes and tomatoes bring on the aches and pains for me. I find keeping my dairy, sugar and gluten intake down also helps. I also know when I've forgotten to keep my water intake up- this tends to affect my fatigue levels.

Ask to have a blood test to check your iron, B12 and VitD levels as these are often found lacking.

I'm afraid that friends and, sometimes, family 'dropping off' is also common but hopefully the relationships still there will prove more genuine and real for all.

I hope some of that has helped.

All the best

Ali

[VanK in reply to Ali_H]

Hi Ali, thank for your reply. I believe in the food/inflammatory link so have been GF for a while now and very limited dairy/sugar. It may be time to cut out the nightshades (potatoes etc) like you suggested! My last bloods did check for B12 and vit D - both came back normal.

My rheum initially talked about Mx but since changed her mind to hydroxy - have you had success with Mx? Does it help?

[Lizzieuk1]

Hello! Certainly sounds like it could be ra though there are lots of diseases which can also cause these issues obv ur consultant is the best person to know! I strated on hydroxychloroquinine and I know it's said to be the mildest dmard, I had no issues with side effects but it had no effect on my ra either, the drugs we are offered are certainly very scary when u read about them but for me it's a case of little choice really, I either take them or suffer, personally I've not had any serious side effects from any of them- and I've had pretty much everything available! There's always a risk but it us very small so please don't let it stop u from trying, living in pain is awful so try to find a way of reducing that if you can.

Good luck! X

[VanK in reply to Lizzieuk1]

Hi Lizzie, thanks for your reply. Yep, have probably read too much on the internet about side effects, also not wanting to take something without evidence that I need it; however my flares becoming more regular with v little break in between (currently in one after a 3 week break).

Living in pain has been a huge learning curve - I'm not good at accepting help - but now have to.

Have you found something that is working for you at the moment?

[Mandalou]

Hi VanK

Are you based in the UK or the USA for example out of interest as the medical pathway for treatment in different countries has many anomalies

Mx

[VanK in reply to Mandalou]

I'm in the UK, used to live in US. How are treatment approaches different? Thanks

[Mandalou in reply to Mandalou]

Hi VanK

I just wondered if you were under the NHS or the insurance system in the US.

Often if Insurance in the states allows , people get fast tracked straight onto Biologics where in the UK criteria has to be met for these expensive drugs.

Having said that If diagnosed with RA for example they treat aggressively here these days it's not a wait and see approach.

Diagnosis is notoriously complicated and often people can live for years being told they have one disease only to have their diagnosis reversed further down the line.

It sounds in your case that you are suffering rampant inflammation in multiple joints.

At least April is not too long to wait before you see your Rheumatologist again.

Hydroxychloroquine is the DMARD that seems to be the most widely prescribed and is generally well tolerated which is why I imagine they want to start you on that to see if it offers you relief, almost like giving the drug , seeing its reaction, AIDS diagnosis. This is often an approach used with oral steroids , they monitor your reaction when titrating doses up and down.

I wish you all the very best and totally understand how frustrating not to mention upsetting and uncomfortable/ painful this is for you.

Don't be too put off by what you read about side effects as others have said.

Good luck

Mx

[VanK in reply to Mandalou]

Thanks for the clarification. Back in the day my grandfather was treated with gold injections into his hands... thankfully we've moved on a little in treatment options since those days!

I'm so sensitive to meds am wary of taking anything but its reached the point that I'm willing to try anything to feel better!

[TerrilouiseS]

Hey,

Sorry to hear life's not great atm. I would say it sounds like RA, blood tests don't always show things. Really hope you get some answers.

Tx

[Ali_H]

Hi,

Methotrexate is my one and only med (20mg) and it does the job for me for now. I have had little trouble with side effects - initially I took it with porridge and fresh ginger to ward off the nausea but now I just drop them in a pot of natural yoghurt and off I go.

I've tweeted it down for a few weeks in a row when I've had a sore throat or there's been a bug/virus doing the rounds in my class with little obvious effect at the time but I did have a short flare at the end of term so need to be wary of getting flippant with my tweaks!

I have added turmeric to my regular diet and add it to soups, yoghurt, hot milk drink etc and maybe it helps but I can't quantify that claim.

All the best

Ali

[VanK in reply to Ali_H]

That's great to hear that mx works - love the sound of the porridge and ginger with it. I've taken turmeric for several years due to chronic sinus infections; had read a recent article saying that taking it in food is a better source than as a supplement.