How much pain?

[GinnyE]

Diagnosed with early onset RA January 19 and put on 10mg methotrexate. Told target would be for me to be symptom and pain free. June 18 very painful flare in wrist, couldn't move hand, given steroid injection and methotrexate dose upped to 15mg. From November flare in one wrist and moving to other, pain in shoulder... given steroid injection in buttock and told by nurse that you have to accept flares even if disease controlled (didn't increase methotrexate). Since then had flare in other wrist/hand and for last three days horrible pain in shoulder, can't use my arm. How much pain do I have to live with then? To me it doesn't feel controlled. Should I press for increased meds? Or am I being an unaccepting baby?

[sylvi]

You and me alike darling as I think I am in a flare.xxxx

[GinnyE in reply to sylvi]

I've contacted the advice line... hope I don't get a black mark in my copy book for being a nuisance!

[sylvi in reply to GinnyE]

Ginny they are paid to look after you so your not being a nuisance.xxx

[Hidden in reply to GinnyE]

If your a nuisance then I’m a stalker/bunny boiler.. I’ve had a bad year with no break from symptoms . Seeing my clinic nurse Thursday 🤞🏻there is something they can do

[GinnyE in reply to Hidden]

Ta, hope the advice line comes back to me soon x

[Hidden in reply to Hidden]

Christ that made me laugh out loud think we are all bunny boilers on certain days!

[Hidden in reply to Hidden]

Your back from your break... how you feeling after your break ?

[Hidden in reply to Hidden]

the return to work chat soon started with a ' well a friend of mine broke her back and told she would never walk again but you know what Dee she is now running 48miles a week and life is good.

My reply ' and what does this have to do with RD'.

Anyway down to 4 days a week 6hour days till end of Feb and then reviewed.

[Hidden in reply to Hidden]

🙄🙄the usual understanding of RD then ... at least you didn’t get well at least it’s not cancer .... that’s my favourite... DO NOT FEEL GUILTY we don’t make this up .... nearly Christmas 🎄

[Hidden in reply to Hidden]

Still work over Xmas only shut Xmas day at our place!

[Mmrr in reply to GinnyE]

There should be no black mark, your RD is not well controlled, you are asking for help. That's just fine.

[GinnyE in reply to Mmrr]

Fingers crossed

[helixhelix]

Posts like yours make me so grumpy that you are being treated so badly! Of course you are not being an unaccepting baby, it’s totally reasonable to want to be better controlled. And completely ridiculous to say you have to accept flares when they have only tried you on a moderate dose of a single drug. This is sloppy old-fashioned thinking. Grrrr!

Do you keep track of your blood tests, and are they showing improvement? As sometimes nurses look at the bit of paper and not the person.

Push, nag and assert yourself! Politely of course, but just keep saying that you don’t think this is good enough.

[GinnyE in reply to helixhelix]

Thank you for your reply. You are of the same opinion as my big sister so... I have phoned the advice line and maybe they will look again at my meds. Thank you again, it helps to hear from others.

[Lolabridge]

Hi GinnyE

I agree with helixhelix so don't feel bad about wanting more help from the experts! From what you've written I don't think your RA is properly controlled and your consultant needs to know. As far as I'm concerned a flare can only happen if your RA has been controlled for a period of time. As yours does not seem to have been then you should ask for more/better medication until it is. Do as helixhelix suggests.....and good luck!

[GinnyE in reply to Lolabridge]

Thanks for your advice. I'm a bit confused about something you've written "flare can only happen if your RA has been controlled for a period of time". I did go five months without a flare and then five months again until now when I'm getting one after another?

[Lolabridge in reply to GinnyE]

Sorry if I misunderstood. I did not realise you were symptom free and not in pain for several periods of time.

[Jaxine]

I'm going through the same. On biologic but experiencing a flare in knees. You sound like you are being looked after by your nurses ref steroid injections when needed. I haven't seen a nurse for ages! I'm ringing up tomorrow to demand ( nicely) stamp foot! for an injection. Hope you feel better soon, the pain is horrible isn't it. There so many more experienced people on this forum more equipped to offer advice, but I would suggest you speak to your RN so she/he can talk to your consultant ref changing your drugs or combining them, it seems to me that even on 15mg of MTX it's not controlling your RA as surely they would not be offering you the steroid injections so frequantly. Good luck

[GinnyE in reply to Jaxine]

That's what I think really. Waiting for them to come back to me. Don't know when you get put onto biologics, are they better than methotrexate I wonder but maybe more expensive? Such a game trying to make sense of it all ... hope your knee and my shoulder behave soon!

[helixhelix in reply to GinnyE]

There are strict criteria for biologics, and all the research shows that they are not better than normals DMARDs like Methotrexate if you find the right mix and doses of them. I used to have “biologics envy”, but when I read up on the risks I was happy to wait until I really needed them. And yes they are very expensive!

There are lots more things they can do for you apart from biologics - 15mg of MTX is a pretty basic treatment.

[medway-lady]

I had 3 DMARDS before biologic and to be honest if I could have Lefludamide back I would ! It is not possible for me sadly ! If you look up NRAS website you'll so a lot of DMARDS and it can just be a case of trial and error as RA unlike a virus or infection doesn't lend itself to a take this 3 times a day for 7 days approach.

It is hard I don't think I really have flares as in hot joints as mine are cold, swollen and painful. But the fatigue, dry eyes and mouth are just as bad. We are all different but you do need to be politely assertive and patient too.

[lilyak]

Sounds like the medication was holding you very well for several months, but if the flares are coming more and more often, I would take that as being time for a medication review, either increase your mtx dose and/or add another medication in. Keep pressing, your rheum needs to know. Wishing you the best.

[GinnyE in reply to lilyak]

Yes I think this may be the case. So I'm waiting for the advice line to return my call. Although my shoulder has eased off this morning I'm left thinking which body part next? Thank you for your thoughtful reply.

[bear4ble]

Medication effects can vary widely since not everyone is exactly the same. Could I suggest that an approach could be to investigate complementary pain reduction ( marine/herbal ) and see if any of them help. Allied to that you could examine your diet ( can be difficult ) and try to record each daily intake referring that to your subjective measurement of amount of pain and location in your body after 24? hours. Wish I could be more helpful.

[StormySeas]

Just like the others above, it seems to be that your disease is not under control. I can say that now, after several years of treatment and being in a much better place.

The ideal is not to have flares like that. I had them for many years, and the pain was unbearable. I still have pain, but not anything like that.

You're not being a baby! I so wish I'd posted on here earlier and received some advice from other people. With the benefit of hindsight, if I was in your situation, I'd certainly call the helpline and request a medication review.

Secondly, I'd get some proper painkillers for emergencies. My pain was so bad I was struggling to cope, and the random nature of the flares made life very difficult. Looking back, it seems crazy that I was suffering such pain with nothing to control it.

Of course everyone's different and these painkillers might not be suitable for you. After begging, in tears, I was finally prescribed Oramorph and Tramadol for emergencies. I alternated the Tramadol with paracetamol. Together, although they zonked me out, they took the edge off the pain.

Getting the right combination of medication for your RD can take a long time, but you will get better, I'm sure. You might not need strong pain killers, but if you do, please don't be afraid to ask. I don't think all GPs understand the severity of the pain that comes with the disease. There's no need to suffer without help if it's really bad.

Wishing you all the best

[GinnyE]

What a lovely reply. Thank you so much and the advice I've received is going to encourage me to get sorted! Best wishes.

[Hidden]

The longer I have RA for (32 years and counting) and the more I read other people's posts, the less I understand about it. I'd better give up now.

[Hidden]

I don't think the nurse has any right to say you should accept flares. I guess she's never experienced one. I was diagnosed in March and was in a very bad way for 2 - 3 months. I was very soon put on the maximum dose of methotrexate (25 mg) as well as hydroxychloroquine and prednisolone. For a while I was on Sulfasalazine as well. Your 15mg of MTX plus occasional steroid injections is well below what could be tried on you. Ask your rheumatologist what else they have in the armoury, but take account of their opinion if it sounds reasonable.

I am now said to be in remission. I'm still taking MTX (20 mg), but not the other DMARDs, and I've reduced the prednisolone very, very slowly. (I should be off by Christmas Eve, fingers crossed.) I was very well over the summer, even did some hiking, and I've experienced relatively minor flares this autumn, but I think they were related to suspending the MTX briefly, one week for the flu jab and some time later for two weeks while on antibiotics. I've had a steroid injection in the bum to tide me over the latter.

Your flares sound much worse and should be taken seriously and treated aggressively (as they say). Keep pushing for this. Be the creaking gate that gets the oil. Maybe you could ask to see a different nurse? I hope they sort you out very soon. It is absolutely unacceptable to be left in so much pain.

[GinnyE in reply to Hidden]

I spoke to the nurse today. She asks questions from a protocol they have ie have I had a cold, done anything unusual, been under stress? I reported the increased occasions of flares and said I was having trouble coping, getting frightened. She said she would speak to my consultant and ring me back.......🤞

[Canadiangeese]

Hi Ginny: Hope you hear back from the nurse soon. From what I understand your RD is still not under control. I started off with plaquenil, then 25 mg of MTX was added 3 months later. My Rheumy then added Arava 3 mths after adding MTX. This was all done within a year. Accordingly, the gold standard is aggressive treatment to bring the RD under control in remission (i.e. no pain or flare whatsoever). I was on this triple therapy of medicines and was happy that I experienced no pain, flare or further joint damage. That was back in early 2017/2018. After stabilization, my medications have been slowly reduced since late 2018. Now, I am no longer on Arava, my MTX is down to 10 mg per week (compared to 25 mg when I first started). Just saw my Rheumy today, she is further reducing my Plaquenil (leflunomide) mediation, it is being reduced to 1 per day (when I started out, it was 2 pills every day). If you are still having a flare, that means RD is still active so you need to pursue it and advocate for your own health. Don't be afraid of trying medications at higher dosage to control your RD as you can see from my experience there is such a thing as "medicated remission" with no flares or pain whatsoever. Good Luck and hope you find the right combinations of DMARDS.

[GinnyE]

Thanks for your reply, it reinforces my belief that I need stronger medication. I've heard that early RD should be treated aggressively so don't understand the medics reluctance! Will keep at them!