My husband has just been diagnosed with seronegative autoimmune arthritis. His specialist assured him his caught it early and done no actual damage to the joints. He has prescribed him a two year treatment of methotrexate which he has assured him would give him 97% chance of going into full remission. However research on google doesn’t seem to imply this is the case and I wondered if anyone else has been told this or experienced full remission?
Remission for seronegative autoimmune : My husband has... - NRAS
Remission for seronegative autoimmune
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Seuroneg36
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I am sero -positive not negative, and have been mostly in a chemically controlled remission for the last 5 years. However I have not been able to taper off the drugs, as soon as I drop below a certain level then it all comes back.
However I have heard of people achieving a complete remission (i.e. no drugs). It seems that paying attention to lifestyle issues - no smoking, healthy weight, daily exercise, good sleep and a good diet (i.e. no processed food, lots of veg, low sugar and so on) will give you the best chance of achieving that. Sadly for me it made no difference to the disease, but I am very healthy now apart from th RA!
I've had RA 20 years and I'm doing brilliantly. Apart from a couple of blips I've been in remission for most of the 20 years. I'm active and fully working. Meds are amazing now and most people, with right meds, do well. I know I will always need meds but living normally is my priority. Good luck x
By some publications & opinions your husband has the fact he's been diagnosed seronegative on his side as it is generally considered to be less destructive, though some here may disagree. What makes his diagnosis seronegative is he's tested negative for Rheumatoid Factor & anti-CCP antibodies (or has very low levels). These antibodies are the ones that cause inflammation & in turn destruction of joints, the reason why some consider seronegative diagnoses to be less destructive, although they still can have inflammation so it's not always exact, as with most things there are exceptions to the rule. It is possible at some stage he could be re-tested, have developed the antibodies & so his diagnosis could become seropositive. So, as it stands he's had no damage at diagnosis so it's fair to say being him being seronegative & in the minority is fortunate, as only around 30% of people diagnosed with RD don't have the antibodies or erosions though this often makes it more difficult to diagnose.
As nobody can predict the course of the disease it's not easy to say really if your husband will achieve complete remission, (I would think he means clinical or medically induced remission, by this it would mean he'd remain on his meds) this is why he's given a 97% chance. Obviously much depends on his response to methotrexate, not everyone who starts it continues on it, although I have, 8 years now though I'm seropositive, not that it makes any difference whether you tolerate it better or not! This can have an impact on whether he achieves remission of course, if he tolerates & continues on MTX the chances are greater, if he doesn't & needs to try one or more different DMARDs then it upsets the applecart somewhat starting & waiting for each to be effective, it may mean the remission chances are further from reach, if that makes sense?
From experience it is an odd treatment plan, to state he'll have 2 years of MTX. It's unusual for Rheumy's to be so sure to be honest. As I said previously there's no knowing how your husband will respond well or if he'll get on with MTX, though the hope is he will of course. When I was first diagnosed I had no such exacting protocol. For a greater chance of achieving remission, if he does all he can, adherence (remaining on his meds), exercise, avoid any foods which may cause inflammation, maintain a healthy weight, doesn't smoke... all these help towards achieving clinical remission. Fewer achieve competely non-clinical remission & come off all their meds.
If I can just give a little advice, unless you're keeping to reputable sites don't blindly believe all you read on Google. Also, forums such as ours don't give a typical view of RD, in the main those who are posting aren't doing well or, like yourself (or your husband rather) are newly diagnosed & reaching out to others with experience of the disease behind them. Most people are getting along fine & enjoying life, except for people like helix & me who generally do well but choose to be here!
I hope it helps you, & in turn your husband, understand things better being here. If you have a specific questions just ask, we've lots of personal experience we can share. 😊
That’s great his Rheumy has implied he would only need to take medication for two years to beat his immunity into submission and stop it attacking itself. This is where I think we are getting confused. The drugs mean a drastic life style change as he loves a few beers once or twice a week and normally goes out one night a week with myself or friends for food/wine and beer it’s a big part of his life. Annoying as if it was me it would be no big deal as I drink once or twice a month. Nothing he can’t get used to though it he stays pain free for life though and can continue his beloved golf and active lifestyle x
The current guidelines about Methotrexate and alcohol are much more relaxed than they used to be! I was told not to drink at all for the first 6 weeks to 2 months, and then if blood tests fine I could have the occasional drink as long as I stayed at moderate levels. You have regular blood tests so can check all's well. These days I have a drink maybe 3 nights a week, so perhaps 6 units a week and my liver enzymes are fine.
I actually now have no desire to drink more....
What you absolutely mustn't do is binge drink, and probably best to stick to no more than a couple of units at a time,
Here's the NRAS information and guidance
nras.org.uk/methotrexate-mo...
You have a very optimistic rheumy! But optimism is good.....
Helix is right, the 'rules' are nowhere near as stringent as they used to be, even so some Rheumy's don't advocate any drinking for a few months. Alcohol isn't necessarily done with though, do tell him if it's really bothering him, though I would recommend for the first few weeks he abstains just until he knows how his liver responds to MTX. It's because it's metabolised in the liver, as are other meds we're prescribed such as NSAIDs & whilst the liver is remarkable in that with small 'injuries' it will repair itself it's just being careful & looking after it really. He'll probably have drug monitoring blood tests every other week for a while (mine are six weeks or so for a new DMARD then if all's well onto monthly bloods). Check his ALK phos (alkaline phosphatase) & ALT (alanine transaminase) or ALT (aspartate aminotransferase) values, they're his LFT'S (liver function tests). If they're mid range then he should be able to have a drink, though do impress on him the importance of keeping himself to a limit until he's settled on MTX & knows how his liver is responding generally. I don't drink but only because even a glass of wine makes me ill, no happy time then woozy, no, drink, wait, see it again! I tell you this to because even so my liver won't entertain any higher dose than 17.5mg MTX, it can in some be that finite. I'm sure if there are any rogue results his Rheumy (or GP if he signs a shared care agreement) will let him know. His GP agreeing to shared care is useful because he can have his blood tests taken by his Practice nurse & meds prescribed through his Practice, usually more convenient than hospital.
I am afraid it may be longer term than his Rheumy is suggesting. I've accepted I'll probably need meds the rest of my life, until a cure is found of course, we have to hope it's not that far away! Some do say they've been able to stop meds but it's a moot subject because they claim it's through diet but there are no reliable scientifically controlled trials to prove this. The only diet NICE recommends for RD is a Mediterranean diet, basically what I eat,
1.7 Diet and complementary therapies 1.7.1.1 Inform people with RA who wish to experiment with their diet that there is no strong evidence that their arthritis will benefit. However, they could be encouraged to follow the principles of a Mediterranean diet (more bread, fruit, vegetables and fish; less meat; and replace butter and cheese with products based on vegetable and plant oils).
nras.org.uk/diet-rheumatoid.... As for golfing, it's good exercise & the hope is the disease shouldn't interfere with it but if it does he'll be able to play on his good days I'm sure, if he has any inflamed joints that will determine, though from experience nothing much stands in the way of golf unless it's dire!
If you'd like further info have a look through the NRAS website nras.org.uk or Arthritis Research UK arthritisreseachuk.org
I'm seronegative negative and have never heard that. I've had a worsening of disease, however, a good deal of damage had been done before diagnosis. Your husband may be lucky if he takes reasonable dietary and health precautions since he's been picked up early. Some people seem to do better than others.
Thank you all really helpful info and great to hear it from people with first hand experience. I think we are fortunate he was in so much pain we made the decision to go private as our GP was being so unhelpful and was taking forever but refusing to give any pain medication. They wanted to sign him off work but as he runs his own firm this wasn’t appropriate. Hence the really early diagnosis. I am hoping the consultants opinions are due to something his seeing rather than optimistic. I don’t think I realised how severe Arthritis was until the diagnosis it’s horrifying what people have to live with x
Going private might be a clue as to why the consultant specified a 2 year course. Many private insurance plans won't cover chronic illnesses in the long term, so maybe consultant assumed this.
If you are still under the private consultant, do try to see if you can get onto his/her NHS list at some point. Should your husband need to change drugs to biologics these have to be prescribed within the NHS. No doubt very rich people have a way to work round the rules, but because these are so expensive they can't be given outside the NICE guidelines.
He is self paid we don’t have private insurance and his now under joint care with his GP who will run bloods and prescriptions but will see the private consultant for follow ups and to ensure it’s all going to plan
Well push your GP to get you into the NHS system as well in due course. Biologics cost £10,000 a year and you won't want to self pay for that..... Many people run both, so are in the NHS system (often under the same consultant) and treated within that, but do also use private when they need to.
Another question/comment ...has he had his baseline x-rays and so on to check lung function before going on MTX - if not ask your GP to do so.
I saw this and no he never had those X-rays I will get him to push. He has to have a lymes test as he had fluid drained during the diagnosis process from his ankle and after initial diagnosis he was informed some of the cultures are showing microorganisms so they want to triple check this just in case.
He had a steroid injection two weeks ago and it was the first time he has been pain free since Christmas his pain was crippling to the point he was dragging himself up the stairs. This has now worn off and where the MTX is yet to do his thing (his only had 2 doses) he is now back in constant pain. It’s so hard to watch him like this. His a trooper though and dragging himself out of bed and to work but it is so horrid for him
Yes steroids are wonderful short term relief...you can usually have them three times a year without long term harm. Has the GP discussed pain relief with him, often prescription anti-inflammatorys plus a PPI stomach protector cam really help until MTX kicks in.
This first bit is usually the worst...it should all get better in time. I'm now 95% normal.
(And a sign of a good consultant if testing for Lyme!)
Maybe you have a point with the new GP needed when he asked about pain relief yesterday they refused and only told him to get some over the counter sleeping tablets. This attitude was what led him on the path of private consultant. Our GP is known as one of the best and everyone I speak to that visits loves him but we have never had to use him before in all honesty other than through my 3 pregnancies and even that was under midwife care but I am not happy with his response so far. Without going private we would be no where near a diagnosis. They did his bloods quickly but then when results come back with just inflammation his next appointment was two weeks later. With the pain he was in that just wasn’t an option. It’s like they think you want the pain medication for funs you only have to see him walking and you see not only the way his body moves but the obvious pain on his face. Keeping my fingers crossed the MTX kicks in and does its thing soon
Thank you so much for your help it’s been amazing getting all this information and a real eye opener to what we need to do/ask next can’t tell you how much we appreciate this
That makes me cross! Many GPs know next to nothing about inflammatory arthritis, and hide their lack of knowledge by shrugging things off. This is a self service disease I'm afraid. You have to push.
Hi Seuroneg and welcome.
Fabulous advice and really spot on detail from Helix and Nomoreheels as usual.
The fact you are supporting your husband and learning more about RD will only stand you in good stead for whatever the future holds.
If the GP your husband was seeing before you went privately wasn’t helpful then I think a very good idea would be to change GP’s or practices and get someone who will help support you alongside a Rheumatologist.
I’ have seronegative RA, diagnosed in 2015 and have been on the Biologic Etanercept from roughly 6 months after diagnosis because my liver couldn’t tolerate Methotrexate and the other first line DMARDS ( disease modifying anti rheumatic drugs)
I have blood tests at my GP every 8 weeks and take Hydroxychloroquine twice a day and inject Enbrel/Benepali once a week.
Ive been in drug induced remission for about a year and a half.
Remission means different things for different people.
Remission doesn’t immediately equate to pain free or losing the typical symptom of morning stifness for example.
However going by my inflammatory markers ( ESR and CRP) I have no active inflammation.
What I would say to you is look up the NRAS website and read all the fabulous information they have rather than random Google articles that promise wonders if you take two spoonfuls of La La powder in your green tea!
Im not adverse to complimentary therapies but RA is insidious and can be doing damage if prescribed protocols are not being complied with.
My drug I inject is so unbelivably expensive that I thank heavens I fitted the criteria and thank heavens for the NHS too. Plus It doesn’t make my liver over sensitive and I can drink alcohol freely , well , you know as freely as is sensible, Im not a total lush😂
I sincerely wish your husband the very best on his journey with Inflammatory arthritis.
There are no miracles sadly but what there is for most , with the right treatment is a relatively normal existence where your life isnt ruled by the disease. I don’t think a time can be put on the journey to remission. Some never achieve it unfortunately. I would just say work with your medical team , you are in it for the long haul.
All the best to you both.
Mx
You have excellent advice from here, I had remission for about 2 years with the gold injections old fashioned and out of favor now, think it was a desperate and cheaper option than the biological options!!!! My body could not tolerate, sulphasazaline, methotrexate at high doses or hydroxycholoroquin, due bad side effects, every one's illness and treatment response is different, feel very exact to predict two year treatment will produce remission.
Hoping it does, methotrexate works well for most people
Alison patient, suffeterer, and still part time registered pharmacy professional x disease diagnosed in 2009, haven't been well enough to work full time since the diagnosis, and can fully emphasize with the dragging yourself to work financially, some times we have no choice,
I’m seronegative and was told that means that I will probably respond to treatment better than someone who is positive. I can’t take methotrexate because my disease attacks my liver, so I can’t discuss that. I’ve used sulfasalazine and azathioprine with limited success. RA has not caused any joint damage, but I still have pain. Currently, I am on Enbrel and am feeling much better as I am able to function more normally. It’s the closest I’ve come to a remission since diagnosis is 2013. I am in the US and am lucky that my insurance company is paying for the Enbrel at over $5,000 per month.
Best wishes to your husband. I hope he gets his remission!
I'm no expert ...... the only case I know of where someone has gone into remission and I mean true not chemical remission was a friend's girlfriend. In her case it turned out that a virus had over activated her immune system and she developed RD. In that case it literally did burn itself out. And after 1 year she was drug and RD free.
It may be worth giving the NRAS helpline a call Freephone Helpline No: 0800 298 7650 (nras.org.uk/helpline).
To chip in with a warning - seronegative is a slippery beastie for many. When doctors say that the RA is more likely to be non erosive if bloods are negative - it maybe true specifically about RA. But it should come with a additional warning... if you have autoimmunity of any sort things can and do change. Seronegative autoimmunity is often a shape shifter!!
In fact in my experience seronegative rheumatic diseases are often more harmful beasties precisely because many doctors (particularly GPs) are more complacent about them. This can mean that erosive joint damage, permanent nerve and organ damage are often missed by being ignored by doctors. So please keep checking up with x-rays and MRIs to make sure that the Methotrexate has actually worked and your husband’s seronegative RD hasn’t morphed into another equally serious form of autoimmunity such as Lupus or Sjögren’s or PsA. Or been misdiagnosed to begin with. He may have had a reactive, post viral arthritis rather than RA.
But prognosis like the one a private doctor has given your husband with a two year time frame sets my alarm bells ringing!
Rheumatic diseases are notoriously unpredictable and I don’t think a good doctor should be talking about remission at this stage.
Seuroneg36 in reply to
This is my concern I assumed that he would know it was working because he would finally be out of pain. So far 3 weeks in pain is still ridiculous he can barely get himself up and his not sleeping because his in so much pain at night. I am going to email his consultants secretary and get an exact break down on his actual condition and the plan of treatment. He has bloods on Monday to find out how his body is coping on Methotrexate but also to test for Lymes as he had microorganisms in the fluid they drained from his ankle last month that they tested. The diagnosis feels so strange for seuronegative as it’s just based on the X-rays which shows nothing, his ultrasound which should inflamed tendons, bloods that showed he was only positive for inflammation and the fluid drain that only come back with something in this one test from cultures they grew everything else was as expected. Being new to this whole world I just assumed there would be something that was more exact for diagnosing. I have no idea it was such a mindfield.
in reply to Seuroneg36
Yes it’s a minefield for many of us. Lyme should definitely be ruled out first as it’s treated very differently to connective tissue diseases. But 3 weeks is absolutely nothing with Methotrexate or other disease modification - they usually take 6 weeks to 6 months to work. So your expectations of it need to be realistic. I think all this should be happening through the NHS to be honest and the private chap should be saying this to you. It’s too complex to try and work out by yourselves. You need a good GP to be proactive about pain medicines and referral to an NHS rheumatologist.
The idea is the bloods, and prescriptions will be through NHS but his consultants appointments will stay at Nuffield hospital. So far our GP has not filled us with confidence even after realising they totally ignored a serious problem they still don’t be seem to be on the ball. They have ordered bloods but refusing to give him any pain medication just the Methotrexate so we are back to him dragging himself through the day and not sleeping. With a company to run and Three young children under 7 at home this is not easy at all. I am not sure how he will cope if this is the level of pain his going to be expected to live with for 6 months it’s to much for anyone to go through
in reply to Seuroneg36
Can you get back in touch with your private consultant and request advice on pain meds for his GP to prescribe ASAP? They should be prescribing something like co-codamol (with a natural laxative I suggest) with Naproxen and stomach protectors - particularly with the latter. It is ridiculous of GP not to help with proper pain control!
Seuroneg36 in reply to
This was what I was thinking surely someone shouldn’t be left in this much pain. This is what forced us to go private in the first place not only where they taking forever to schedule a appointment they refused to give any pain medication until they knew what the cause was and he was in total agony. He would much rather not take any pain medication if possible but you can’t expect someone to be in that much pain. He can manage the days it’s the nights when he just can’t sleep because of the pain his in. I will email his consultants secretary to see if we can get around this. Thank you so much for your advice. Sometimes you feel very much like you are fighting against the doctors rather than with them
in reply to Seuroneg36
Shouldn’t of course - but sadly, with chronic conditions, many of us are.
Pain killers are a must when in pain
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