Inflammatory Arthritis /any AI chat thread.

[TheSpottedZebra]

Hi!

Would anyone be interested in an ongoing Inflammatory Arthritis / General autoimmune chat thread?

A couple of months ago I found this board after a new RA diagnosis, as I was fretting about taking my 1st methotrexate dose. I received so much help and support from so many lovely people that I wanted a new thread where others would feel free to post too.

So here it is.

Thanks @CherryRipe1 that’s interesting. There’s a lot of overlap that doesn’t really seem to be known about isn’t there

Certainly seems to be the case. I know a few people with these overlaps. My friend has ulcerative colitis and got ankylosing spondylitis and said these two are linked.

Visit to the consultant for me today, and pure and total relief that one of the first things he suggested was another depo steroid injection!

Looks like my next move is bioligics in a month or so!

Hope you're all doing okay!

My last visit to consultant was mixed really. Good news that the inflammatory response has responded to treatment and no longer symptomatic, but the bad news is that the ongoing joint issues are now probably due to osteoarthritis, as a result of damage done previously. For which there is not really any treatment 🙁 any suggestions gratefully received on how to manage - not sure how my GP will respond to constant requests for referrals for all the different joints that are affected!

@jointproblems I have osteoarthritis as well. I can't really find out if the damage is as a result of the RA or whether it happened alongside.
Although OA is technically the less serious condition, unlike RA there isn't really a treatment. Sometimes my RA flares in a joint that's already damaged and it's intensely painful.
Only real treatment for OA is pain relief. I used to find compression gloves helped my fingers but now they make it worse.
Volterol and paracetamol.

OK so I'm back, and I'm.... Still moaning about hair loss. I've lost a good 3/4, probably more of my hair now, and it is gutting. I literally lose a rat sized clump each day.

I have another scheduled appointment with the rheumatology nurse this Tuesday, and I think I really need to say that I don't want to stay on these meds any more. Is that 'allowed' ?

Im on 15mg of methotrexate, I couldn't cope with any more. Failed Sulfasalazine, and have been on Hydroxychloroquine for 3 months. Still quite symptomatic, although nowhere near as bad as I was when I was unmedicated.

I'm also v anemic and iron deficient, and have an iron infusion in 3 weeks. And I have daily diahorrea, which has been investigated and no obvious reason for it. I'm utterly fatigued and feel i can't go on like this.

This justifies a change in meds, right? Vainly, it is probably the hair loss that most bothers me

@TheSpottedZebra that's grim. I presume that's the methotrexate?

I really need to say that I don't want to stay on these meds any more. Is that 'allowed' ?
I'd be very interested to know the answer to that. I mean no-one can force you to take them, but will they be willing to offer an alternative, no doubt cost plays a major part. They start you on the cheapest but what's the definition of "patient unable to tolerate"?
For me hydroxychloroquine on its own worked for a few years. Then added in sulphasalazine but I could only manage half the dose as it gave me headaches.
Tried mtx tablets but had a long list of side effects. I've got the injections to start but am waiting until after a holiday as I don't want to travel on a new drug. I'm also very symptomatic ATM. Flare / fatigue cycle.

I had breast cancer a few years ago and I didn't care about hair loss then as it was life saving, but treatment for a chronic illness is different. I don't blame you a bit for wanting to give up.

Ha, what you wrote (They start you on the cheapest but what's the definition of "patient unable to tolerate"? ) is it in a nutshell, without all my self-indulgent waffle?

What is tolerate anyway?

I don't even know if it is the methotrexate, that's the problem! Could be the RA, the anaemia, maybe none of the above. I had hair loss before the methotrexate, but nowhere near this bad.

Obviously if my Ra was worse, I'd warrant more expensive drugs, but when I maybe don't meet that threshold, what happens?

@TheSpottedZebra that’s rough, so sorry. I think you say to them that the methotrexate is significantly diminishing your quality of life plus causing a high level of psychological distress at the hair loss and that although you acknowledge that there is an improvement to your RA symptoms you still have issues that make activities of daily living difficult.

They should assess all your joints to see if tender and swollen (do not be stoic) and then make a clinical assessment based on that as to how active your RA and what the next step is. If they don’t I think you need to push a bit on this. Look up the NICE guidelines, I assume they are the same for RA as for PsA ie. 2 failed DMARDs and then progression to Biologics.

I had a lovely moment where it was looking like I was failing Methotrexate and there was a discussion at their next meeting about biologics but they decided to ditch Sulphasalasine and increase methotrexate and see what happens. My ALT is starting to increase so I think I may end up “failing” it soon but that does seem a touch subjective - there must be a definition somewhere.

That's interesting @Seaitoverthere . I think my problem is that whenever I see the rheumatologist I am fine. I'm telling him how it was last week. My symptoms are very intense but short lived. For example last week I woke up unable to use my right hand. It swelled up and was extremely painful, I couldn't pick anything up, couldn't drive, couldn't even pull up trousers. After 24 hours it's back to normal and I have a few days of intense fatigue. Then relatively ok until the next time.

@Boope, I would answer about how it has been over a longer period of time. Maybe keep a diary and definitely take photos when joints swell. Explain that currently you are experiencing flares which are extremely debilitating and you are unable to function for a period of time, say what you have said about being unable to drive and pull your trousers up.

My friend was taken off methotrexate due to liver damage and put on a biologic.

@TheSpottedZebra I'm sorry you've had such a struggle with meds, it's such a journey isn't it. I've been through the same in the past year, "failing" 3 dmards. I stopped methotrexate purely due to hair loss and my rheumatologist fully accepted hair loss and the distress caused by that as a valid reason to stop. Also failed sulphasalazine and leflunomide for other reasons. I've recently started a biologic, early days but keeping hopeful. Keep going. I hope you find your consultant to be equally supportive as mine.

@Toletitgo that's useful to know. How did you "fail" leuflomide?

I'm just wondering if I'll be made to try that if the mtx is no good.
It does seem that biologics are the holy grail but rationed due to cost. A friend has just started tociluzimab which has transformed her.

@Toletitgo Sorry to hear that you have been in this situation too. But thank you for sharing. I'm really heartened to read that your team listened to you and changed your meds. What biologic are you on, and how are you finding it? Can I be really nosy and ask if the hair loss lessened or stopped upon quitting methotrexate? Any signs of any regrowth ? I worry that they'll just say oh, it could be your anemia (that we also don't know the reason for), so let's wait until you've had the iron infusion, then wait a bit more to see if you feel any better...

@CherryRipe1 Oddly my liver - and kidneys- seem to cope with methotrexate just fine! Literally no change in my numbers in my monitoring! However my white blood count just bounces in and our of the lowest acceptable figure, and my red cell count is always below, and getting lower.

@Boope definitely go armed with a diary and pictures. And clear descriptions of what you can and can't do. For example when I said I struggled to wipe myself after going to the loo ( bleak) , they seemed to take that seriously ,whereas me saying I couldn't do socks or trousers seemed to elicit no response.
FYI I 'failed' Sulfasalazine because it gave me the worst insomnia. And I declined leuflomide because it can often lead to hair loss. My white blood cells could not cope with increasing the methotrexate over 15mg . I stepped up but had to come back down, twice.

@Seaitoverthere I've googled and googled and can't find anything definitive about what is failing a dmard. The most relevant thing I can find is the NICE guidelines to say when, from blood monitoring, your GP should refer you back to the specialist team, if shared care has kicked in ( here) . FYI the threshold is 100 for ALT.

Oops, forgot the link to the NICE guidelines for dmard monitoring. Here it is! https://cks.nice.org.uk/topics/dmards/

And I should have said before but thank you all for your support and empathy. It really really means a lot x

@TheSpottedZebra Well those guidelines are clear on hair loss although it's only a referral back from primary to secondary care.
As I understand it a DMARD fails if it doesn't work or the side effects are intolerable.
I can't find a definitive answer but there's a plausible explanation on this Reddit thread. Scroll down to near the bottom.
https://www.reddit.com/r/PsoriaticArthritis/comments/1eeo5lp/dont_understand_if_im_supposed_to_fail_the_dmards/

@TheSpottedZebra rate of loss slowed when I switched to leflunomide but probably didn't fully stop until I stopped all dmards. Definitely getting new growth now, despite chronically low ferritin and peri meno. All the joys! I'm now on benepali after 6 months on nothing (my choice, disease activity had reduced, but had to rethink that when I hit a big flare). Easy to inject after an anxious start, waiting still for it to take effect though.

Well, that didn't go fantastically. I got upset when I was talking about the hair loss, and my 2 choices are switch to leflunomide, or just reduce the methotrexate.

Apparently hair loss tends to be less on leuflomide than on the methotrexate? I have to read up on it and let them know.

And she wonders if I have fibromyalgia after I said my fatigue is very bad. A quick Google of fibro threads on MN and the consensus of those without it seems to be that it's the physical manifestation of poor mental health. My mh is fine, but I don't want to be hairless and I am very fed up!

@jointproblems how are you doing? My apologies, as reading the thread back, I talked over you somewhat. How domyou feel about OA ? As much asi am moaning about my treatment options, there ARE options, and for that I should be grateful. What has been suggested for you?

@TheSpottedZebra oh that's disappointing. Fibromyalgia gives me the rage. I don't honestly believe it's a condition, more a bunch of symptoms without a diagnosis.
Fatigue is a known major symptom of RA, if your RA isn't controlled it's no surprise you have fatigue. It's up there with the idea that every women's symptom is down to menopause or mental health.

@Boope yep, disappointing is it exactly. It feels a bit like IBS, here's a label, now hush and go away. Sorry to all those with fibromyalgia or IBS (the latter is me too, apparently. I think it is the medication wrecking my bowels).

I should probably have previously mentioned that another reason for saying maybe fibro is that I have pain whilst my inflammation markers are OK.

@TheSpottedZebraI have pain without inflammatory markers, they have never been particularly high. While high inflammatory markers definitely indicate inflammation, a lack of them does not indicate no inflammation.. confusing!

I am currently pondering what to do about the potential OA issues. I have multiple joint problems at the moment and am trying to formulate a battle plan - starting with the worst joint and working from there. I know that if I go to the GP with multiple issues they will become dismissive (and probably suggest fibro 🙄). What I would really like is a full assessment from physio but they don't seem to do that - only allowed one problem at a time!

And I have realised that now if I injure myself, any pain is dismissed as arthritis related and they don't even bother to investigate.

It is very frustrating!

Oh blimey @jointproblems that's rubbish! Who makes these rules?! Could you suck up your pride and play the system? Eg just keep doing e-consults or whatever you have for left knee, right knee, right elbow (or whatever) and see if you can get a double gp appointment to discuss multiple joints? Or just lay put your conundrum and ask how to move forward? Even if you don't agree with their answer, maybe give them a chance, then you have something to react to?

So very frustrating!

@jointproblems I think I would start with the worst one. I have OA as well as RA but none of it's "bad" enough for joint replacement. If you could afford it private physios can be very good. You would be able to get a full assessment and some recommendations. They don't cost as much as private doctors.