Don’t know what to think

[Lomo1964]

Hi all I was diagnosed with RA about three years ago and since I have been on 150mg azathioprine

400mg hydroxychloroquine and the odd steroid injection because of pain. My rhumy today said that my inflammation is normal and puzzled because I am still getting pain. So wants to take me off hydro for 6 months see what’s happened. I can’t take any other tabs because my liver reacts to them and can’t justify biological if blood readings are low. Making me feel like I am making my pains up. Anyone experienced this. Thank you x

[Hidden]

Yes. My bloods are often Ok, apart from anaemia from time to time. I'm in pain all the time and have joint swelling.

Just had a steroid shot today, and I'm about to start biological drugs. Bloods aren't everything. It depends on disease activity and how you feel.

[Lomo1964 in reply to Hidden]

Thank you for your reply. I am in pain and unwell most of the time but the dr is saying my inflammation in blood is normal. Oh well see what happens now I have to stop the hydro x

[Hidden in reply to Lomo1964]

I hear you 🤗 my X-rays show everything is normal, bloods up and down like a yo-yo. Yes the consultant could see along with the nurse that I had inflammation. The MRI however showed a very different story. Wishing in many ways I had not had the MRI but it was necessary.

[keeta]

Hi lovely .i had RD for years before it was diagnosed .for the very same reason .i was in so much pain couldn.t open my hands . And was very swollen.because my bloods.don.t allways show how much pain i.m in .it was only ultrasound .that showed the extent.and the doctors said how sorry they where that i went so long without proper medication.so you are not alone.i.m sure more of us have gone through this .i.m sure they don.t think you are making it up. Gentle hugs Kathy xx

[Lomo1964 in reply to keeta]

Thank you. That’s made me feel better x

[Lizzy-m in reply to keeta]

Exact same as me too. It did take longer to get a diagnosis and treatment and was very frustrating. Take care xx

[englishrose67]

Oh dear you poor thing. hope things settle down soon and your pain eases. I take hydroxychloroquine for lupus. I used to take azothioprim. Anyone like us who has joint pain knows you're not making it up so try not to worry.x

[Lomo1964 in reply to englishrose67]

Thank you x

[Caza]

My consultant has always treated my symptoms rather than my blood results. I take hydroxychoroquine. I’ve tried to stop taking them on a few occasions, too the shock & horror 😳 of my consultant, it didn’t end well!!

[Lomo1964 in reply to Caza]

That doesn’t sound good. I hope your ok now. Can I ask what happened when you stopped? X

[Caza in reply to Lomo1964]

I got it into my head that because my bloods are always borderline that my very knowledgeable & clever consultant had got it wrong 🤦‍♀️ So I stopped taking the meds gradually & finally not all, within a week I couldn’t walk or use my hands, one massive & painful 😖 flare. It didn’t take long for the meds to kick again. But that doesn’t mean to say that this will happen to you. Needless to say I do have RD despite what the bloods say 😩

[Nikki31uk]

Yes I have been taken off humira which ive been on for years, due to neuro symptoms. My bloods are normal however my bloods have always been normal. In in so much pain. Saw consultant yesterday who told me to rest more and practice mindfulness. I felt totally dismissed and unlistened to. Im now on nothing and am sure its the hospital trying to save money. Ive lost all faith in rheumatology since my old consultant retired. At least he listened and cared. I feel your pain and hope you get some relief soon x

[Lomo1964 in reply to Nikki31uk]

Oh no that is terrible. I could rest completely as I work full time. Have you got to see your rhumy again? X

[Nikki31uk in reply to Lomo1964]

In 6 months. Its a joke, I work too. Looks like I'll have to practice mindfulness at work. Once I find out what it is lol. Hope you start to feel much better soon x

[keeta in reply to Nikki31uk]

Thats awfull you poor love.

You need to be on something for the pain and inflamation.

Phone your rhuemy .today.

Rest and Mindfulness.??? Is that a new biologic ???🤣🤣

Ring today love.insist you talk to someone who will listen. I only got listened to when i couldn.t take any more and was in floods of tears.

Bless you .gentle hugs Kathy xx

[Nikki31uk in reply to keeta]

Have been phoning since I was taken off humira hence appt with consultant yesterday. Won't give steroids coz of Neuro symptoms. Seeing Neuro in Aug. Was told to reduce tramadol so I can take more when needed lol. Thanks for replying though xx

[keeta in reply to Nikki31uk]

Bless you .hope you get it sorted soon.take care .gentle hugs xx

[Gnarli in reply to Nikki31uk]

I can't " like " your post as you're in so much pain. Gentle virtual hugs

J

[Zip1 in reply to Nikki31uk]

I wonder if you have the same consultant as me! Mine also said exactly the same to me adding that he gets his wife to do his paperwork and I replied ‘I haven’t got one of those!!!’ My GP is very good though - have you talked to yours?

[Nikki31uk in reply to Zip1]

How funny I'm under Portsmouth

[Lomo1964 in reply to Zip1]

Yes my go is good at most things but he says rhumy needs to medicat ra x

[popsmith1874]

Hi Lomo my bloods are usually normal but I'm not I've had RA for 4 years and am on 20mgs Methetrexate 500mgs Sulfazalasine finished Benepali and waiting to start Humira, my hands and feet are the worse so hopefully you'll get the treatment you need xxx

[Lomo1964 in reply to popsmith1874]

They said I can’t get biological because my normal blood readings even though I am still in pain x

[popsmith1874 in reply to Lomo1964]

I would keep at them because if you've failed 3 dmards and your DAS 28 is high then you should be offered biologics, my bloods are always normal except if I have an infection but I'm swollen and in pain so don't let up keep at them and it's the same old thing comes down to funding, which shouldn't matter if your in pain and struggling xxx

[helenlw7]

I am in pain all the time in my affected joints, and my bloods are nearly always normal. My consultant goes on what say and how my joints feel when he touches them.

[Lomo1964 in reply to helenlw7]

I only have swelling in my knuckles of both hands although in pain in knee shoulders and hips x

[helenlw7]

I also have pain swelling in the knuckles of both hands, and pain in my shoulders, neck, ankles and various bits of my feet! I take dihydrocodeine, amitriptyline and ibruprofen for the pain, but it just dulls it rather than stops it. I have tried tramadol but get the most awful headaches.

[Lomo1964 in reply to helenlw7]

I know you take something to cure one thing and causes another. I hope you feel better soon. I will keep you updated on my progress x

[helenlw7 in reply to Lomo1964]

Thanks, good luck

[Hidden]

At first yes. I did feel as no one believed me. It was not until blood woes results can back with all sorts of faults. I do believe that GP are stretched to the limits. I know my GP writes a report when I see him and he is never pushing g for time