Undifferentiated Inflammatory arthritis here to stay and methotrexate looming..very unsure...anybody have any experience?

Hello. I hope it‘s ok to post here. I feel a bit homeless with my diagnosis of persistent undifferentiated inflammatory arthritis for now. Initially the rheumatologist said he thought it would likely remit, now he says he thinks it is here to stay but sadly not enough evidence to give a firm diagnosis over the 9 months which have included losing a pregnancy, failing Hydroxychloroquine and being immediately repeatedly neutropaenic on sulfasalazine... I have now been offered methotrexate in an attempt to avoid repeatedly having steroids and feeling a bit lost and scared although some of that may also be saying goodbye to further baby plans. Does anyone have any experience of having undifferentiated arthritis and how do you deal with the uncertainty (I feel like I am making a big deal out of something that isn’t serious)....and with taking MTX for it? I was all up for ignoring it but after the last year and still being in pain in all the small joint of hands, feet, wrists ankles as well as recently elbows and knees starting with small children and a busy clinical job that is face to face) I am feeling more despondent and wishing I had a more definite label! Any advice would be hugely appreciated and I hope it is ok to post here! Thank you 😊

[Northernelf8]

I have "some sort of inflammatory arthritis" so I think I qualify here a little - I had psoriasis as a teen, am HLA B27 negative, and mostly clear blood work (some slightly high ANA tests). My symptoms are symmetrical, mostly limb joints but back & SI joints and lately my hands & wrists are terrible...real mixed bag. I'm on Plaquenil and can't tell if it's doing a darn thing. I have moved so I am in between rheumatologists - such a wait ! At this point I would welcome another drug - MTX or whatever for some relief. I have had one COVID shot and am awaiting the second so I guess I hold out until then. I have a lot of osteo in my family so I don't want to turn again to Prednisone but I love Prednisone because it really helps. Just remember when you have pain, stiffness, fatigue your body is in attack mode and the goal of many of these drugs is to reduce/prevent damage - so important for the long term. I want to still be able to do the things I want to in 20 years and more.

As far as uncertainty, the label of the diagnosis is important, I agree - I want to know what I'm dealing with exactly to wrap my head around it. However, the treatment is often pretty much the same. I almost feel that half the battle is getting a rheumie to take you seriously - it's almost comforting for them to actually acknowledge there is something going on !! And - from my experience - they are very careful to diagnose in case it's not right.

[Hidden in reply to Northernelf8]

Thank you. Yes, I guess I am lucky that they are taking it seriously and working their way through the medications with me. I hope you get seen soon.

[Marionfromhappydays]

I'm so sorry for your loss, that alone must be hard to handle along with the possibility of having more children being dictated by medications.

I haven’t had a formal diagnosis and have been told "inflammatory arthritis" is what i have. I'm 1 year into it and now it doesn't really bother me not having a specific label as alot of the drugs used for these conditions are the same.

Its a big thing to get your head around, I haven’t yet, also trying the different drugs is really really wearing , I send big hugs your way x

I find everyday life hard with the arthritis not being in control and having children that need taking to school etc. I just take 1 day at a time now and desperately try not to overthink things.

I've learnt you need alot of patience with arthritis, you need to be proactive in talking to the medical professions and being honest with what you want out of your treatments. If methotrexate is a no (ie from a pregnancy point of view) tell your team now and there maybe other medications for you to take.

X

[Hidden in reply to Marionfromhappydays]

Thank you so very much for your kind Message and for the more relaxed perspective on the murky diagnosis! It hunk I would just prefer to have a more legitimate feeling diagnosis for all of this mess - or at least something to rage against!!I am sorry you are still wading through things although your day by day approach sounds very sensible. It does seem much harder when you have to be present and functioning as mum regardless!

Ithaka you again for the lovely message xx

[Hidden in reply to Hidden]

Thank you even not Ithaka 🙈

[helixhelix]

You are between a rock and a hard place! Ouch.

Perhaps try not to think long term but take it step by step? Uncontrolled inflammation can increase risk of miscarriage, and methotrexate is a complete no-no as far as pregnancy is concerned. But the evidence that it affects long term fertility in adult women is very thin.

So perhaps think more of getting this disease (whoever it is) beaten into shape. Often if you then taper off slowly it can stay away for a long time. And if you are undifferentiated that suggests you might be at an early stage of whatever it is, so even better chance of sustained chemical free remission. Then wait the recommended 6 months and try for pregnancy again?

When we face the decision to start taking these drugs it’s also important to remember we can stop them whenever we want to as well!

[Hidden in reply to helixhelix]

Thank you so much for the kind and sensible words. I suspect it is just the awful timing life throws at us sometimes 😢 I think it didn’t really hit me I was going to have to take this seriously until having lost the baby I am now sitting here attempting to stare down a bottle of MTX.I haven’t had problems in previous pregnancies and did wonder whether having failed uncontrolled inflammatory arthritis may have contributed.

Thank you again x

[FGrant13 in reply to Hidden]

I have the same diagnosis and my symptoms align with a mix of Lupus and RA. Don’t let the name of the diagnosis get to you as it’s so common to have a Venn diagram of overlapping issues. I also have small children so having joint pain like I do now in my hands, wrists and shoulder is most unwelcome! I’m on hydroxychloroquine for the long term. I was improving really well and recent stress has set off a mild flare. If it helps my father has RA and methotrexate completely resolved his joint issue. Hope that helps.

[Hidden in reply to FGrant13]

Thank you! Nice to know there are lots of us without a more definitive diagnosis.Sorry about your hands and wrists. I find the wrists one of the worst too. Carrying toddlers, especially in the morning when I seem to have stiff iron rods in my feet too is such a mission. And I have developed a new hatred of Buggy and car seat buckles!!

Thank you again and for the reassurance re MTX..probably time to try it and I Hope they find you a New med too

[HanaleiBa]

Two of my close friends (coincidence and weird as we are childhood close friends and all three of us have AI issues now) have this. It’s more common than you think and yes, very hard for them not to have a clear name. But what rheumie’s are now saying is this is the case for many AI issues - it’s a spectrum - we just label them anyway. In fact, my mom was given diagnoses of lupus, fibromyalgia, RA, AS....all over 35 years. They settled on RA, but really just to give a sign post on drugs. You aren’t alone!!!! This is exactly the community for you and you should post anytime it helps :).

[Hidden in reply to HanaleiBa]

Thank you 😊 xx

[AgedCrone]

Have you discussed the baby issue with your rheumatologist ?It seems a bit drastic to me to have to forgo having a baby. ....but maybe if you are young enough to postpone babies....get your RA under control on Mtx....then switch to a drug that is known to be safe during pregnancy?Start taking to your rheumy team...this subject must come up often.

[Hidden in reply to AgedCrone]

Thank you. They have offered me repeated steroid injections if I want to continue to get pregnant but did acknowledge it was suboptimal as I already have very thin bones. I have exhausted all the pregnancy friendly drugs and would need to fail MTX before accessing anything else.Thank you - it’s such a Hard decision and helpful to get lots of perspectives.

[Knip]

No matter the name, inflammatory arthritis is no less important or painful than arthritis by any other name! By being on here you are in the right place to talk about it. I have Rheumatoid Arthritis with a positive RF factor for over 50yrs and over the I have also had, in my fingers, a different inflammatory arthritis. The latter is very painful and I currently have it back in two of my fingers and my wrists. It impacts on almost every aspect of the working day. In my experience these joints are very swollen, hot, red and incredibly painful. They remain this way for about 18 to 24 months before disappearing completely leaving immovable but completely pain free finger joints. I didn't find MTX helpful in that respect but it does help my RA. Hope this helps. I had a total hip replacement when I was 44yrs old and had a very obliging set of friends at the school gate who would bend down and do my son's shoe laces up for me! I had two miscarriages along the way and I was completely heart broken. However I went on to have another healthy child during remission but my RA was back in his early years. At that point I had difficulty in doing up the poppers and buttons on his clothes and the safety pins for nappies were a nightmare...yes, I am that old that in my day nappies were washed by hand and pegged out on the line! It was so hard and the simplest of tasks caused extreme pain. I hope that you have someone who can help you with the most difficult tasks. Take care, you are going through tough times.

[Hidden in reply to Knip]

Thank you so much for the very Kind reply and for sharing your experience. I‘m glad that other mums have stepped in to help! Thank you again xx

[DelicateInput]

I'm not sure it really matters what label is given. The treatment seems to be the same - or is it. A number of people have said that they had to try Methotrexate for a stipulated time before being eligible for more expensive drugs. Hydroxychloroquine is supposed to aggravate psoriatic arthritis.

I find the whole procedure so inordinately slow that I don't feel it is worth my while using the medical services unless I want blood tests or a scan done free. I had a diagnosis of undifferentiated inflammatory diagnosis for about a year - and then it became rheumatoid but only after I had vastly improved the condition myself. Doctors seem scared to death to make a diagnosis of RA and, without being cynical, I don't think it is out of concern for the patients but rather concern about the cost of drugs.

I wonder why the rheumatologist thought it would remit - is there a family history of it and early remission? My mother had a bout of it at 31 and it never recurred. However, she died from heart disease and I do wonder whether it continued but untreated and caused angina/hardening of the arteries, as this is one of its effects.

I think there was hope initially that mine would remit - it did largely due to my own efforts but never actually cleared completely. It came on overnight and likewise an episode two years ago came on overnight as well as this year, both on Good Friday. I don't take anything for it, but exercise does help, which has been hard in lockdown.

I don't think the NHS or doctors generally realise how disabling it is. I've rung my GP surgery when I have been completely paralysed (more than once) and the reaction to doing anything has been inordinately slow. A couple of weeks ago, I requested a physio appt because I could literally not move on account of back/hip pain. I might has well have spat in the wind. I then rang a private physio and went the next day. A couple of days later, I woke up with two frozen shoulders, likewise my hands. I just get the impression that all they are worried about is money.

I wonder if it would be worth discussing baby plans with a gynaecologist and just going ahead and trying to have a baby. It is not something that can be shelved for long and you will always regret it if you do. I feel you will wait forever for a rheumatologist to do anything.

[Hidden]

Thank you for your insights! I think he hoped it would remit as despite the „classical“ presentation my bloodwork was normal...now he thinks it won‘t as it has been going on for too long..

Take care!

[Helen-NRAS Moderator]

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