R a help

[Annemarie24]

Just seen the rheumo nurse abit confused they have started me on hydroxychloroquine , but my inflammation from blood test last week come back normal , i thought with r a that you swell then get the pain , but im in alot of pain and got a lil swelling on my hand, can anyone explain this ?

[Hidden]

RA acts in different ways with we poor patients. Which means that s much as we like to support, advise and help each other, it is logistically impossible. I sometimes get inflammation without pain, and other times pain without inflammation. Just listen to your Rheumy and take the meds. I've never had hydroxychloroquine, I hope it brings you relief.

[wishbone]

Most, but not all people with RA have painful swollen joints. I've had RA for 17 years during which time I've experienced plenty of pain and joint erosion but little in the way of swollen joints.

Hope the hydroxy begins to improve things for you.

[lily2003]

Poemsgalore1 and wishbone have excellent points. I’ll add that during my recent rheumy visit, though my inflammation markers were normal and I could see no swelling in any of my finger joints, the doc said she could feel some, very subtle swelling in two of them.

She increased my methotrexate dose because, she said, though visible inflammation may be low or not visible to the untrained eye and not ticking up blood tests, it can be present in a low level in unseen places like arteries and cause damage long term.

[wishbone in reply to lily2003]

Hiya lily, I remember having the occasional swollen joint back in the early days, probably before my RA was controlled with methotrexate. But not had any swelling to talk of for many years even when my CRP was close on 100 for a month or two around 6 months ago. Funny old disease innit!

[AgedCrone in reply to wishbone]

Yeah WB,,,,,a real laugh!

I have rarely had much swelling....these days my wrists swell telling me I’m heading for a flare...but thank goodness they only ache..not that eye watering, stinging pain I had in the early days.

So I guess all the drugs I have ingested over the years just might have some residual effect in controlling the disease....as well as the drug I am now on?

I reckon take whatever it takes!

[wishbone in reply to AgedCrone]

"Yeah WB,,,,,a real laugh!"

[wishbone in reply to lily2003]

Forgot to say...interesting what your rheumy said about low level inflammation in arteries etc damaging joints and possibly organs. If so that could explain how my joints continued to erode without any obvious swelling and resulted in deformed hands and feet. The only difference with me was for the 3 years that my RA was not properly controlled and when most of the damage was done, I had high inflammation markers and the pain to match.

[lily2003 in reply to wishbone]

My fingers have deformed since my diagnosis in September, all the while my ESR and CRP were normal and I showed little swelling to my eyes. If only I'd gotten diagnosed a year earlier when I first suspected it and not had the delayed start to the methotrexate. Ah well… I can still use them. Typing near normal speed right now. So… {{shrug}}.

[wishbone in reply to lily2003]

Hopefully the methotrexate will halt any further deformity.

Good luck lily.

[Hidden]

Although we share the same symptoms just not all at the same time sounds confusing. Generally I get a major swelling and terrible stiffness ( my brain works overtime just to tell my feet to move they never listen) I get achy joints sometimes and fatigue big time but if I have a big flare my tendons are the things that give me pain. My bloods generally show little or no inflammation 🤷‍♀️🤷‍♀️

[Annemarie24 in reply to Hidden]

Thank you , i thought the rheumo nurse would explain about all this, but she just went over meads and told me to contact gp for pain meds ,just made me feel like the pains all in my head with her saying my inflammation level is ok and the xrays where clear , i have had about 2 good days since i started a month ago with symtoms , just feel like Im in too much pain if this is early on , should it hurt this much

[Hidden in reply to Annemarie24]

Early on probably just means that your joints are not damaged but it sounds like your RD is not under control and you are having a flare which means there is inflammation in your joints I can have fatigue but joints ok still means the disease is active. Medication takes awhile to kick in and you will start having better days you also start to understand your symptoms and what may set you off.keeping a diary just a few notes so you and your consultant can have something to with. Patience is one thing I have learnt with this disease unfortunately the disease sets the pace. Lots of rest gentle exercise still you get through this flare . Best place for information this site people understand and explain so much better than the medics

[Annemarie24 in reply to Hidden]

Thank you really helped reading this

[JAnnT in reply to Annemarie24]

I feel for you, I know I have to walk slowly and small sliding,shuffle movement. Its not the pain so much as they just don't want to move and your afraid of falling. Hoping it will pass. It's just so obvious that I hate to be in public. I'm sure there are other problems out there that are bad, but this disease is awful, I spend most of my time in bed. The only thing I am hoping will help is the spinal cord simulator. Its expensive and I don't know if I quality yet, but if it helps me I'll let you know. Take care.

[stiff19 in reply to Hidden]

Wow that’s interesting my tendons are the things that give me real pain too and my bloods

[AgedCrone]

It’s a minefield Annemarie.....everyone experiences their pain differently .

What you feel is your pain....it might be worse than mine, or less than mine, but unfortunately there is no machine your rheumy nurse can check on the severity.

So don’t think you are fussing over nothing,

I don’t care what my blood results say..if I hurt..I hurt & I want something to relieve it,

So explain to your GP that you need something to compliment the Hydroxy...which is a first line Dmard, not an analgesic,

Newly Diagnosed Uncontrolled RA is really, really painful. We have all been there, but you will be thankful to know it will get better....so get off to your GP ASAP & get some painkillers.

[Annemarie24 in reply to AgedCrone]

Thank you

[nomoreheels]

AgedCrone has said exactly what I was about to say Annemarie. Common sense advice, make an appointment with your GP ASAP to work out the best pain relief for you. I take 3 different ones, different deliveries plus one I retain for when I’m struggling. I do also have OA so they & the doses I'm on help ease both conditions but I'm in the main pain free excepting during the rare flare or if I’m due a dose increase in DMARD dose because of a step up in disease activity.

GP's generally prescribe pain relief for us, plus things like muscle relaxing meds, neuropathic meds & sometimes NSAIDs, the meds which aren't specifically Specialist prescribed meds like DMARDs.

Don't worry, given time it will all become second nature to you as it has for us RD oldies. 🧐😊

[AgedCrone in reply to nomoreheels]

Who are you calling oldies nmh...I have just proved my bones don’t break,,,they just bounce....I can’t be that old!

Can 💀I? (Don’t all answer at once!)

[Hidden in reply to AgedCrone]

😂😂one of the Children in my class said to me today ( after I struggled very inelegantly to get up from the floor and she heard me say I’m getting old)but miss your not old enough to die.🙄I’m 53 in April

[nomoreheels in reply to AgedCrone]

Oldies as opposed to newbies dearie!

[AgedCrone in reply to nomoreheels]

Oh yes..I see now!

[nomoreheels in reply to AgedCrone]

🤗

[lamour123]

Just been diagnosed with same thing .lots of pain.... am in tears when I open my eyes in the morning ,hardly any swelling .have contacted the rhumatologist nurse for steroid injection in my hand actually both hands ,index finger and left thumb I am already on zoplicine for sleeping ,was wandering if it’s making it worst as this is two weeks ago that I started Methotrexate 0n 7.5 mg Once a week I was offered the injection at start of treatment ,but refused ,now I wished I had ..cause the pain is driving me mad ..hoping I see the specialist ASAP ,as I have asked to see him before my next visit due on the 23td March can’ t. take the pain anymore

[Hidden in reply to lamour123]

I’m so sorry you are suffering. You are on a very low dose of methotrexate. It is usually slowly increased and can take 12 weeks before you see any benefit. You maybe able to get some oral steroids to tide you over but this only short term and is often referred to as the devil drug as it’s hard to come off after long time use. It doesn’t cure you even though you feel better it doesn’t stop the disease being active it just masks it. Hope you get the help you need.

[nomoreheels in reply to lamour123]

Similar advice for you lamour123. You obviously aren't noticing any benefit from being on MTX only a fortnight, not surprising, but you have been prescribed a very low dose, has your Rheumy said it's intended to be increased gradually?

If your Rheumy Nurse is reticent to offer a steroid injection, localised or general, I’d make an appointment to see your GP, ask if an NSAID &/or pain relief will be of help. Sometimes a short taper dose of oral steroids are prescribed as a bridging med intended to help ease ease symptoms until the DMARD is working fully. Was that not mentioned at all? When I was diagnosed I was prescribed a DMARD, two NSAIDS (one to take daily & another to take if that wasn't helping enough) & a short course of steroids.

It is quite normal to have morning pain & stiffness but it usually eases after an hour or so. Please though if you have no joy from your Nurse do see your GP. Oh & welcome by the way! 😁

[CarolyneJA in reply to nomoreheels]

Oral steroids, short tapered course

[nomoreheels in reply to CarolyneJA]

I'm sorry Carolyne, not sure what you mean by just writing that. Is there something other that could help me understand?

[Shalf in reply to lamour123]

Hi lamour, I also experienced lots of pain throughout my body when RD first kicked off and was also put straight onto MTX. As J above has said, mtx (dmards) can takes weeks to do its job. Its usual that patients will be offered steroids in tablet or jag form to help with pain relief until hopefully the main medication takes effect. Its perhaps wise to contact your Rheumy nurse helpline or gp to explain the pain you are experiencing. They normally will get you in before your Consultant appointment and may offer steroid meds. If the pain subsides a bit then the gp can also offer nonsteroidal antiinflammatory drugs.

I used to take zopiclone too. It certainly puts you to sleep quickly but it's not long lasting and I found I was waking up at silly o clock in the morning in agony.

There ARE options for pain relief.

Wishing you and Annemarie to feel less pain soon. xx

[JFlay]

I've never had any visible swelling, I get pain, stiffness, fatigue and brain fog, but the inflammation (synovitis) shows up on my ultrasounds even though my bloods are in 'normal' range. It's all very odd 🙄

I'm also on hydroxy, couldn't tolerate methotrexate.

[Brushwork]

RA is different for all of us and it changes over time in each individual. There are no easy answers.

[Ms-D]

Im the same. Had terrible pain in my knee and elbows and when i saw my consultant she said no swelling there but i was in agony. She said i had a lot of swelling in my hands and left ankle. I thought thats weird as ankle not hurting. Im waiting on biologics but was given a steroid injection that im still dealing with the pain lol. Hope you feel better soon xx

Happy thoughts your way xxxxx

[stiff19]

I had symptoms and diagnosed palandromic rheumatism with symptoms but clear bloods, though since learnt had occasions of inflammation in bloods. Hydroxy helped my hands and the swelling. Next rheumy stopped said no it’s fibro and stopped medication. Since I’ve suffered numerous debilitating symptoms and reading some of your replies below from people who seem to have good rheumys and explanations, I’d take them and try them. I wish I had some now for sure and you will be helping yourself preventatively if you take them on the medical advice.

My bloods were and still mostly are normal which is why I’m fobbed off by rheumy but symptoms persist so if you have a rheumy not relying on tests alone you are in a good place . Good luck I hope they help 🙏

[colindgreen]

Hi, I am on the same course of treatment and have been for 5 months or so. Whilst on paper my results are moving in the right direction, my pain and symptoms have remained largely unchanged.

Supplements have helped me greatly, particularly tumeric; which has alleviated the brusing feeling I had in my hands.

[springcross in reply to colindgreen]

I was told by my Rheumy doctor that I could take Turmeric supplements alongside MTX as there is no known interactions. Then I found out that people on PPI's (I take Omeprazole because of the steroids) should not take Turmeric supplements. How much difference did the Turmeric make to you?

[colindgreen in reply to springcross]

it has helped alleviate the brusing feeling I had when touching things and the tenderness I had between my fingers.

[springcross in reply to colindgreen]

Thanks.