4 months since RA diagnosis and no difference in pain.

[Jules13]

I keep hoping that one day I will wake up and the pain and stiffness won’t be in my fingers, hands and wrists.

It’s been 4 months now and the only thing that eases the pain at all is steroids. But my rheumy wants me off the steroids and so I’m still in limbo waiting for something to work.

Thank goodness, the methotrexate added to my drug cocktail 3 weeks ago is not as bad as I thought. Yes I feel tired and nauseous and a bit breathless but it only lasts for 24 hours or so.

I don’t think my current diet is helping much. I don’t have a fridge or a cooker in my new cottage so am not eating as healthily as i usually do.

But I just want something to change. I want to be able to use my hands again. To be able to paint my house, hammer in a nail... just do something for myself. So frustrating being helpless.

[Neonkittie17]

I hoping the Mtx will start to work but as we've said on here it can take 8-12 weeks to fully take effect but I do hope that you will start to feel some benefit of RA being added in soon. I know how hard it is waiting. 😕

[Jules13 in reply to Neonkittie17]

I’m just fed up. Sitting in my new house and unable to do a single thing. Can’t unpack, can’t paint, can’t pick up a hammer or screwdriver. And have no money to get someone to help me. Camped out in one room just waiting to get better.

[nomoreheels]

Has your Rheumy or GP prescribed an NSAID or pain relief Jules? Many of us are prescribed either or both alongside our DMARDs, they can really be effective especially in the early weeks, it's only been 20 weeks since your diagnosis remember. You've time yet for your MTX to work as well, you're 4 weeks in so 8 more approx & then things should with a fair wind be a whole lot different. I realise patience must be wearing thin but we've all been there, it just takes a little more hanging in there & you'll think what was that all about? We're all wanting it to change for you, you've our support, wish I'd had this forum when I was diagnosed I tell you!

[Neonkittie17 in reply to nomoreheels]

Me too .. I nearly lost the plot and was ranting at my GP I was so frustrated I had RA. 😣

[Jules13 in reply to Neonkittie17]

Helpless.

[Jules13 in reply to nomoreheels]

I was on diclofenic but my rheumy said it doesn’t go with the methotrexate so I’m only taking paracetamol.

[Neonkittie17 in reply to Jules13]

Diclofenac did not suit me but was very effective for pain relief. I went onto a Fentanyl patch next but because I had severe osteo pain and that is the only thing that has kept it at bay really. Paracetamol has actually worked better for me then many other painkillers for tendon and soft tissue pains. Tramadol worked well but I was totally out of it on those and was doing my BA at the time so needed to be alert at college. It is a matter of perseverance and finding the pain medications that work and suit you until the RA gets under control. It is awful waiting for those RA meds to start to work.

Hoping each day is coming much closer to them working. If you try tell your rheumy it's not working at this stage they will certainly tell you that four weeks on Mtx is not sufficient for it to take good effect. A waiting game is so awful. 😐

[Jules13 in reply to Neonkittie17]

Tramadol is hideous. Was on it for 3 months after my knee surgery. Diclofenic was working really well for me but was told it wasn’t good to take with methotrexate.

[Neonkittie17 in reply to Jules13]

I was given Tramadol whilst on Mtx. I was totally zonked out .. On a trip .. Bonkers eyes/pupils but I didn't feel any pain but as I was doing a studio practice degree I needed to be alert/awake!

[nomoreheels in reply to Jules13]

Did he not prescribed another, unusual to just stop an NSAID & not replace it as they're not prescribed without reason. Did you ask for an alternative? There are others that those with compromised renal functions are prescribed, topical diclofenac to apply to specific joints, paracetamol taken at regular intervals can effective, or even people with diminished renal function are sometimes prescribed naproxen or celecoxib, if this was the reason for stopping diclofenac.

If you're in pain do ask, no point suffering for the cause. You'll fare better if you can get a handle on it, it won't make you feel quite so down about waiting for your other meds to work fully. Please don't just put up with it, if your Rheumy isn't aware he'll think everything's fine when it's clearly not. As I said before pain relief & NSAIDs are commonly prescribed, especially where you are at the start of treatment, I had two, one to take each night & another to take when needed when the pain was too much, both NSAIDs. x

[Jules13 in reply to nomoreheels]

I’ve asked again and again about my pain and you just cannot take nsaids with methotrexate. Doesn’t leave much.

[nomoreheels in reply to Jules13]

But you can! I bet if you asked everyone here they'd have had them at one time or another if not permanently like me. I've been prescribed NSAIDs from day one of diagnosis, in 9 years I've had celecoxib, nabumetone, naproxen, meloxicam & etoricoxib. I can only think your Rheumy subscribes to the thought they'll cause you trouble renally but this is why we have drug monitoring bloods, to keep a close eye on anything untoward happening with our blood, kidneys & liver from taking our meds. Have you asked specifically for an NSAID to replace the diclofenac? As you know I've been on MTX 8 years always with an NSAID so saying or telling you you cannot take NSAIDs with MTX just isn't true.

[Neonkittie17 in reply to nomoreheels]

Temporarily I would have thought the doc would prescribe you them and yes I've had anti inflams whilst on Mtx.

[Jules13 in reply to nomoreheels]

She said it creates toxicity in the kidneys.

[nomoreheels in reply to Jules13]

That is a possibility, she's being straight with you there but do you have any issues with your kidneys, how have your creatinine & urea levels been? The other option is prescribing a different NSAID, did she say all NSAIDs are out for you? Even if it's just to relieve you from your pain short term. Or, pain relief, paracetamol, codeine or co-codamol (a combination med of the two), something rather than leaving you as you are.

[Cherub198889 in reply to Jules13]

Nomoreheels is right. You can have nsaids with methotrexate.

You deserve to be as painfree as possible.... and I must confess if your doctor says "no nsaids for you while on mtx..." ....well, how do I say this?... your doctor is lying to you and it's time to find a new doctor. Your life has value, and you deserve to be painfree.

Lots of love to you,

Sue

[Simba1992 in reply to Jules13]

I think on this point you should listen to your doc! Taking nsaids with mtx is not recommended. Have noticed and many on the forum are using both, though. Have you tried codein with your paracytamol? Did I understand correctly that steroids were not an option?

[nomoreheels in reply to Simba1992]

I agree we should listen to our Rheumy's that's not being questioned. But when he wants her off steroids & offers nothing when diclofenac was withdrawn then gives info contrary to NICE guidelines that's not on. Is she supposed to just be in pain, you know how painful uncontrolled RD can be, it's just cruel to leave her like that whilst waiting for DMARDs to start working fully.

Methotrexate — NSAIDs may reduce the excretion of methotrexate and increase the risk of methotrexate toxicity. Where possible, avoid concurrent use. If concurrent treatment is necessary, perform a full blood count and kidney and liver function tests every 2 months. cks.nice.org.uk/nsaids-pres...

This does not say they're not recommended with MTX, rather that there may be cause not to be, & to have a blood test every 2 months, the majority of us have them every month. Where possible avoid concurrent use, this to me means prescribe them when necessary for the shortest time possible. This is a when necessary situation, of course if she didn't have pain then they wouldn't be necessary but she does. If there's cause not to he should be straight with her & say why.

I'm questioning why she was told you cannot take NSAIDs with MTX when clearly you can if there is just cause. I just don't understand why treatment was withheld when his patient who is under his care is in pain that's all.

[Jules13 in reply to nomoreheels]

Who knows. She just told me to stop and I’ve questioned her about it and she said if it gets really bad then take a lower dose. So I’m trying to do without as thought it was a better option. I am having blood tests every 2 weeks.

[nomoreheels in reply to Jules13]

Then if it's really bad I'd do as she recommends, reintroduce the pred at a lower dose. My normal treatment includes MTX, low dose steroid (2mg prednisolone nightly & 60mg etoricoxib, an NSAID, every other night). Being in pain could never be considered to be the better option & I don't think she'd want you to be in pain, do you?

That's good you're still having blood tests every 2 weeks, that will be be because you've only recently had MTX intoduced.

[Cherub198889 in reply to Simba1992]

I never ment to imply that Jules should not listen to her doctor. I'm sorry for my reply coming across that way, it wasn't my intention.

I just think Jules should find a second opinion. In my darkest days of exhaustion, pain, and increasing "snowballing RA" symptoms, I forced myself to get a 2nd opinion. I'm happy that I did. RA is a gruelling longterm disease and everyone should be able to speek freely with their doctor.

ncbi.nlm.nih.gov/pubmed/229...

[nomoreheels in reply to Cherub198889]

Thank you Sue for that link.

[Jules13 in reply to Cherub198889]

Well I have to move specialists soon anyway. Have moved house so should legally move doctors. Just wanted to stick with my current rheumy until something started working. Guess that’s not happening so I might as well change.

[Eiram50 in reply to Jules13]

Hi Jules

I have RA and AS and currently I’m in enbrel, leflunomide , MTX and I take arcoxia 90 mg daily . However, from before diagnosis until now, I’ve also had to take strong painkillers, either tramadol or dehydracodeine - you can get these from your gp. These may help ease your pain a bit

Marie

[Fruitandnutcase]

Not surprised your rheumatologist wants you off steroids. I was on a three month ever reducing course and I ended up with steroid induced T2 diabetes which was a bit of a shock. Fortunately it was discoveredstraight away as I was on a pre diabetes study at the time and two months after starting the steroids I went for my annual check up. Some people are f8ne - I was just unlucky but I wish it had been mentioned at the time I was offered steroids. They were great though - I was like Wonder Woman at the time. Totally pain free!

I’m now taking hydroxychloroquine which pretty much dampens down my inflammatory arthritis. When it doesn’t and I feel creaky I top up with paracetamol or ibuprofen. I’ve been known to alternate with both at t8mes. My rheumy seemed to prefer topping up with paracetamol to increasing the hydroxychloroquine.

I also bought splints for night time because I found I was waking up with pins and needles for some reason and if I splint my wrists I don’t. I recently bought an elbow splint because my elbow suddenly decided to hurt too.

Commiserations on your lack of kitchen. When our kitchen was installed it took a record breaking amount of time. No water, no cooking or washing facilities for months, total nightmare as you are finding. In the end I splashed out and bought a Remoska cooking pot from Lakeland. That was good it gave us ‘normal’ food. I took it upstairs to a bedroom and did the washing up in a washing up bowl in the bath.

I’ve also gone totally gluten free to try and reduce my thyroid antibodies ( it worked) so arthritis being an autoimmune condition might benefit from that too.

I find magnesium flake baths a help too and I’ve got a little ibuprofen spray I got from Boots for those hard to reach aching places.

This lousy cold, damp weather does nothing for creaky old me!

[Jules13 in reply to Fruitandnutcase]

How did you know you had diabtetes from the steroids? How much were you on?

[Fruitandnutcase in reply to Jules13]

I think I started on 60mcg then the dose startedreducing right away, unfortunately I threw my little card out but I started in October and by December I had tapered off to 5mcg a day then stopped. It was quite complicated so I wrote the doses out for each week and did it that way, could have had an injection but I don’t like injections - weird consider8ng I can give bloods with no problems and I used to be a blood donor.

I discovered because I was taking part in a big pre diabetes study and at my first annual review in November I was thrown off the study because I had T2 diabetes! I was so lucky it all happened when it did or I doubt I would have realised myself as I felt quite normal.

I always ate good food, well my helpings were too big , but I bought a blood sugar meter - T2s don’t get them on the nhs! But how else do you know if things are improving.

I discovered by testing my blood sugar before and after each meal and noting down what I ate that it was carbohydrates - wholemeal bread, jacket potatoes, parsnips soup were particularly bad - that spiked my blood sugar so I gradually cut everything that spiked my blood sugar out of my diet and I’m no longer T2 - well I bet I could be if I went back to my previous grain based carb heavy diet. I get my carbs from vegetables and other sources now.

I think I was unlucky as I know a lot of people who take steroids long term who say they aren’t diabetic.

[Cherub198889]

It is very frusterating counting down the weeks until the drugs are suppose to "kick in" . Mtx usually starts to work in & around the 3rd month. Just hold on a little longer and know everyone is cheering you on.

[Fruitandnutcase in reply to Cherub198889]

I agree, I didn’t realise until I got my copy of the endo’s letter to the doctor that I should have started the hydroxychloroquine as soon as the steroids worked which I didn’t do. That meant there was a gap where I had finished the steroids and had to wait for the hydroxychloroquine to kick in and the effect was quite gradual - unlike the fabulous and instant result I had with the steroids.

[MAHGS]

Hi there - so frustrating isn’t it .

I am very surprised that diclofenac was prescribed at all due to heart attack risks . RA for 20 years & used diclofenac for years alongside methotrexate, sulphasalazine & folic acid .

Taken off it immediately once research results came out . Replaced by Naproxen which is aspirin based I think 🤔 can still use that occasionally if needed . Ultimately you want the DMARDs to work without the use of anti inflammatories . That is the goal .

To my knowledge you can have a steroid injection up to twice a year ( which I have had in the bottom🙈) without ill effect . Giving me a 3 week window .

Long term use causes osteoporosis & other nasties .

Maybe make a case for a systemic steroid injection , explain your situation so that you can do a little bit in the house to make it more comfortable.

The only reason they might refuse is that when your hands are in flare - it is not recommended to use them as it can contribute to more joint erosion .

Like you my RA hands are my problem🖐.

Worth a shot tho.

Give it time 12 weeks is the minimum.

Upside ( I know bizarre)- 6 months like this on 2or 3 DMARDS & a High DAS score ( greater than5.1) you will be considered for a biologic/ biosimilar . Keep vocal to rheumatology as if you do not tell them how much pain you are in they cannot know . I struggled with that one as I am a bit stiff upper lip .

Have you had any hand x rays done ?