So I had my 6 month check up with the rheumy today. She's totally lost knowing what to do with me - I've had to come off plaquenil again as it's just making me so sick and such bad stomach acid I just can't cope with it. All of the other treatments we've tried I seem to react to - which we now know is probably due to my severe photosensitivity which some make worse - and other treatments such as nsaids I can't take at all.
Over the 5 years since I was diagnosed my bloods haven't really changed - I come back with a "medium" ANA and all my other lupus bloods come back negative or borderline at worst. She's completely stumped as to why I'm getting so many joint problems and so much fatigue as it's not in line with how the results are reading.
She's not happy with how many steroid injections I have to have now - there's been 3 this year already - and doesn't want to start me on oral steroids as my weight has shot up by 14kg in 6 months (thyroid levels being reviewed in 2 weeks). So having discussed it further we have agreed for me to give methotrexate a try as it's also a good medication for the photosensitivity and everything seems to point to it being the best thing for me to try next. My chest x ray is all fine, in up to date on my flu jab etc so she's starting me immediately on 15mg once a week to see how I get on. She is insisting that I try the tablets first but is happy to jump me to the injections quite quickly if my stomach is really bad and has told me to take them once a week and then take the folic acid 24 hours later to counteract the effects.
I've decided to start these on Thursday evening as I have my cleaner in on a Friday who will help me out with things if I feel bad or react and then I also have the weekend to rest if i need to as I've read that it can cause tiredness. Hence the thread ... does anybody who already takes this have any handy tips that they can pass on to help when taking methotrexate? Such as take on a full stomach or even don't have too big a meal first that kind of thing? I know with other meds I've had experience from other people has been invaluable and any help here will be much appreciated.
On the bright side (!) it took so long for the x ray to come through that I was sat under the lights in the waiting room too long (lovely migraine starting now) and my hands started to hurt and swell up in reaction so I got the nurse to mention it to the consultant and got to go back in and show her what happens to my body so she could actually see what is happening rather than my descriptions not fitting what she is seeing either in person or on tests so I'm hoping that will help her getting to grips with it all.
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Mifford
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Hi I have taken four disease modifying drugs to date and am probably going to start another one soon. I too am very intolerant. Five years ago this month I was diagnosed with seronegative RA and put straight on Methotrexate. Later on Hydroxichloraquine was added in. I lasted 2 years on MTX and 18 months on Hydroxy. I also tried and had severe reactions to Sulfasalazine and Azathioprone. My rheumy gave up on me finally, saying my equivocal autoantibodies but high inflammation markers meant he had to stick with his original diagnosis. I moved and saw someone who wasn't even willing to concede previous RA despite my ESR still being very high and worsenung neuropathy.
Now off all meds my ANA is medium clear positive at 1:320 and immunoglobulins raised so I agreed to have a lip biopsy which was very positive for Sjogren's. Rheumy today says I have primary Sjogrens plus possible Lupus and RA. Fatigue and pain are the main extra glandular symptoms of Sjogrens and, unlike with Lupus and RA, bloods tend not to vary or lower much which means that they are not useful in assessing disease activity of Sjogrens. Does this sound a possibility for you perhaps? Your rheumy might not be very aware of Sjogrens as some aren't. I know this from experience!
Methotrexate was better for me by injection. But for the first six months my only side effect was increased fatigue. Later nausea and other GI problems took over and I finally could bear it no longer. But it did the job at seeing off my RA type arthritis brilliantly. Try to keep an open mind and take it as you have decided to, giving yourself a few days to recover if you need to. I used to take mine just before bed so I would sleep through any drwziness side effects and possible nausea. Good luck
Thanks Twitchy - when I was first diagnosed with SLE the consultant told me it was serum negative but my symptoms were fairly conclusive. He did say he'd looked at Sjorgens and did the eye test thing - his first letter mentioned sicca symptoms but I've never found anything that explains what that is - and he told me I was low on the something scale but I can't remember what it was called (doh!). I've questioned a few times if I definitely have lupus but more than one consultant has been adamant that with what I'm displaying, especially the photosensitive element, it couldn't be anything else. My ANA has always come back as both speckled and diffuse but negative for both lupus and RA which confuses the life out of them and they've come to the conclusion that i might have some cross overs between them. The biggest problem is I also have auto immune thyroid and this year it was confirmed that I have extreme photosensitivity with full blown solar urticaria to all visible light and possibly into the non visible range based on the strength of the reaction but they can't test that far. Added to this my lupus is highly photosensitive as a totally separate issue to the solar urticaria. As she told me today there is so much going on it's pretty much impossible to know which is causing what. If this doesn't help though I think it's time for them to start considering other causes so I'll keep that one in mind.
I've already been tried on hydroxy and azathioprine and true to form on all my meds I start off with them doing a good job but 6 months to a year in I suddenly get worse and have to come off them as they start to make me sick. When I look back though those reactions have generally been around or just after the summer and I now suspect that it's the photosensitivity clouding the picture.
Thanks for the tip about taking it at night - she did say I should take it in the evening and suggested I take it an hour after food so I'll try and stretch that as late as I can with this in mind
Ah I didn't know that - when he did the thing where they put blotting paper in your eye he told me that it was negative and I was fine so it's always confused me that his letter seems to disagree with that. I might explore this a bit more at my next rheumy appointment 🤔
My optician tested me - and my eyes were dry. Not so much that it really bothers me but it is there. I wonder how can you have a "negative" Schirmer's test?
I think he meant that my eyes weren't dry and produced enough tears - at least that's what I assumed. I was more naive back then whereas now I'd ask a lot more questions 😊
Probably was what he meant - but I get really t'd off at people who say "negative" when they mean "appears normal".
Twitchytoes - if you're looking - it occurs to me, what does the Schirmer test show if you have a lot of watery tears instead of enough proper tears. If you see what I mean. Is that why it isn't any use for Sjogren's?
I don't think Sicca is quite the same as Sjogrens Pro. Sicca Syndrome is dryness of eyes and mouth but not necessarily a full blown autoimmune disease. Sjogrens, like Lupus, is a diseases in its own right with sicca as the most common feature. If it's secondary then it might well be described as sicca if eyes and mouth are dry, but other dominant symptoms are felt to be part of a different AI disease.
My Schirmers test was negative last year too so the previous rheum discounted Sjogrens as a possibility but still wrote Sicca (Sjogrens) on my sheet. The Schirmers blotting paper test has beeen largely discontinued and other more pleasant and more reliable tests have superseded it for the most part. Three opticians have told me Schimers is unreliable whereas Rose Bengal and others are highly specific.
Also many drugs such as Amitriptyline, antidepressants and antihistamines, age etc can cause eyes to be very dry. The most definitive tests for SS are the Ro & La antibodies or the lip biopsy. Ultrasound of Parotids is increasingly helpful too.
It is a much more complex disease for me and many others than Sicca Syndrome is -although most people with Sjogrens will have Sicca of course.
That's what I said - no antibodies, not full blown autoimmune. I was only quoting what a medical article described it as - the initial symptoms are much the same, and you can have dryness of a lot of other places in sicca too.
Yes sorry I got confused Pro. My form of Sjogrens isn't just sicca -that's all I should have said. But I'm at least right about the Schirmer eye test not being at all useful for most with SS! X
I was told this by two top notch opticians.you should ask yours because optometrists usually have state of the art testing equipment where rheumatologists don't have access to more than blotting paper! . The optometrists both told me that Schimersis rubbish because most who have sharp blotting paper put in eyelid will produce some tears but this doesn't measurequality of tears and doesn't account for what passes over the eye ball when we blink. So it doesn't check for corneal damage abc may cause damage of itself in a dry,scratched eye. Also drugs such as Amitriptyline and Duloxetine plus antihistamines invariably cause eyes to become very dry and lots of us with Sjogrens are prescribed these before we are eventually diagnosed. Also ageing is a big factor. Tear break up/blink tests measureour dryness levels far more effectively. And mine show severe dryness but this will vary according to which parts are flaring and how diligent I am with drops and ointment. I would never again let anyone test me with blotting paper - big ouch! Oral consultants or dentists have a big role to play too in diagnosing sjogrens of course. X
This was a LONG time ago by a very good bloke - did research at Aberdeen until he realised it wasn't as profitable as being an optician! Didn't hurt at all though. I see the eye doctors here in Italy - no choice, opticians hand out specs...
I'm sure they could do a Rose Bengal tear break up for you Pro. It just involves putting some anaesthetic dye in each eye and watchingthrough a microscopic lense as the tear passes over the eye surface - not rocket science. Maybe the reason o found it so horrible having blotting paper test is because my eyes are fundamentally dry? But my teeth and gums are fine as are parotid glands and yet I have advanced sjogrens so things aren't always as they seem!
I found the blotting paler test really uncomfortable and anytjk g to do with eyes freaks me out so it took some serious self control not to rip the thing out of my eye. Funnily enough mine are red, dry and scratchy as hell today as if I've got an infection so I need to go and get some hay fever drops at the chemist which usually fixes it but - they've been bloodshot and sore for a couple of days though so don't think the lights yesterday caused it but might well have exacerbated it 🤔
Try to use only preservative free eye drops and ointments. As this sounds like Blepharitis you wouldn't go wrong by cleaning eye rims using a drop of Baby Shampoo with a cup of boiled water and some cotton buds or cotton wool.
You may be right - my eyelid itself isn't red and swollen this time but it feels like my eyelashes hurt and as if I've got soap in the corner of my eye. Might try a hot flannel on it this morning to see if that helps too
My Ro & La tests come back fine from memory so I've not really given sjorgens much thought but looking at things last night I think I might ask for it to be reconsidered if this treatment doesn't help as there is certainly enough there to warrant it. I used to get copies of my blood tests before I was diagnosed and I'm thinking it might be time I started doing that again as I feel really out of the loop when I can't review them to be certain
I'm in same boat with blood tests and clinical letters. It's really frustrating me just now as keep having to ask for these. Why can't they just copy us in on hospital blood test results and letters?!
Letters I get copies of but I'm going to start asking for blood test copies again as so much gets missed by docs - it was how I got diagnosed with my thyroid before by being able to point out the comparisons to previous results etc. Plus I had a positive ANA result for something like 3 years and it was only once I saw a copy of the result that anything got done. My GPs told me my vitamin d level was normal as it showed that at the top of the page and when I got the copy I pointed out it was so low it didn't even get near the normal range and they had only read the overall comments not the actual result. I always tell everyone I meet to get copies of their results as nobody cares what they say as much as you do so I think I need to start following my own advice again! The letters I always get copied on on though as our local hospitals have it as a policy. Which is a good thing too as I found out yesterday that my rheumy hasn't had any of the info that Guys sent me. No wonder they miss things all the time as nobody seems to talk to each other!!
Oh and funnily enough I hit the 5 year mark this last February - maybe there's something in it taking that long to completely stump the medical profession lol
Interesting to read your diagnoses are coming thick and fast now thanks to your new Rheumy!. No wonder you've been so I'll!. RA stays and lupus and Sjogren's added!. I wonder which treatment you will be given. Do hope you will be able to tolerate it and be better soon. You must feel thoroughly vindicated and relieved. Good luck for your GP appointment. I'm off to my Rheumy today( Tuesday) X
Thanks coco - between new meds, PIP appeal and now having to look at going to the ombudsman to force my health district to prescribe my light reflecting cream I think your good vibes are going to be very much needed!
Glad to read your Rheumy is willing to change your treatment despite not finding it easy to cope with your case!. I do hope the Methotrexate works, it's a very good drug for arthritis too. Just wondering did she make clear that you take folic acid on each day of the rest of the week and only not on tablet day?. It's been a few years since I took it so the thinking may have changed anyway!.
Good timing that you flared under those lights and were smart to tell the nurse to tell the Consultant!. I just wonder whether you need a Consultant who is better at coping with sero- negative type lupus illnesses and or photo sensitivity!. Some really do struggle with the negative tests in the light of obvious symptoms but others don't and it would make your life less stressful if you have a Consultant who can cope well. Also it doesn't give you confidence to see them struggling!. Just thoughts anyway. Fingers crossed you can take the MTX ok. Keep us posted. X
The prescription is to take 6 of the mtx (15mg) once a day and then take 10mg (2 tablets) of folic acid 24 hours later but not to take them the rest of the week. She wants me to keep in very close contact with the rheumy nurse team though and report any niggly side effects as they may adjust how I take it to help my body accept it as I've been so reactive to other drugs.
The problem where I am is that there is a limit to who I can see. The main rheumy consultant was great and diagnosed even with servo negative but I could never get an appointment with him and in medical terms I'm kind of boring for him - my symptoms are all life affecting for me but in medical terms they are pretty low level as there is no organ involvement etc. The other consultant they put me to when the first one wasn't available I didn't like at all - his answer was to immediately try and put me on to steroids when there was nothing to warrant it and resulted in me having a fairly terse conversation with him where he was deciding whether he wanted to put me on steroids and merely telling me that would be his decision when I asked him to explain the reasoning and ended with me pointing out that I think he'd find that it was MY decision actually! In the end the decision who I saw became kind of academic .. we have a nice new hospital with lots of glass and very strong artificial lights and I react so badly when I go in there that they had to move me to a clinic at the local cottage hospital where the lighting is less challenging for me.
The First Lady I saw there was absolutely fantastic but unfortunately she had the temerity to go and get married and move! 😊 The new lady is actually ok - she's seen my lighting reaction before and decided she wasn't sure it was purely lupus and started the ball rolling to get me sent to Guys for photo testing so from that point of view she's been very astute. To be fair to her I think. It's a case of I'm reacting so much to so many different things and i can't take the meds that they know will help with my symptoms and it would probably leave any of the others stumped too. Plus as I said to her yesterday my body is incredibly good at hiding what is going on - my thyroid was right in the middle of the normal range until they gave me thyroxine and the next blood test I shot off the scale which threw them. My endo thinks that my body goes into overdrive to keep things normal and once it didn't have to do that any more it gave them a true reading. Same with the solar urticaria - the consultant was really shocked when it was so positive as when he'd seen me he genuinely thought it wasn't that based on how it was presenting. Now I'm on meds I feel almost worse than I did before and it's becoming more obvious when it's flaring up. It explains why I feel so rubbish in comparison to what the tests are telling the doctors but makes it very difficult for them to fix. Fingers crossed that this route proves to be the winner and we can get things under better control going forward but I'll let you know!
That's great about the folic acid advice you have. The possibility of taking it daily is there if needed. Fingers crossed you'll be ok.
I'm sorry you have this solar urticaria!. Must be very hard to live with!.
Your body sounds just like mine , very reluctant to reveal what is going on in tests!. Does make it very hard for clinicians to manage!. My Consultant is one who is used to relying on bloods and had the attitude if it doesn't show up its not there!. Since having me he has changed considerably, it's taken years of quiet explaining and sometimes arguing at bad times but it proves it can be done if the willingness is there!. It sounds like the lady you have is similar and it is credit to her that she's willing to try you on MTX. So hope it works for you. Good luck for your pip appeal, hope you've had CAB or DIAL help and you get the right result. Take CareX
I think it helped with the mtx that Guys had also suggested it as it can help with the solar urticaria apparently - although this surprises me as I thought mtx makes photosensitivity worse. Then again I guess if you react to everything how much worse can it get lol
The PIP appeal CAB helped me with and wish I'd used them from the start. It's now waiting for the dwp to respond then I should get a tribunal date. Also sending off a letter to the parliamentary ombudsman today to try and get them to overturn my local CCGs refusal to prescribe my Dundee cream locally. It seems to be one fight after another lately
I am still very new to all of this as having only been diagnosed 10 months ago (and only because of severe rib cramps that started a whole slew of blood tests) but you asked for experience with Methotrexate. The first thing my rheumy did was to put me on 200 mg Hydroxichloraquine twice daily. She then added Azathioprone and I was fine for a little over a month before the constant nausea hit. She took me off of the Azathioprone and put me on Methotrexate. I have been on that for about 3 months and seem to be doing ok. The one thing she told me was that if the Azathioprone made me nauseous then Methotrexate in pill form would definitely make me sick so she skipped the pills and went straight to the injections. I am still working full time so I take my shots on Friday nights before bed. My biggest side effect has been a headache on Saturday but it is usually better by Sunday. She also stressed to make sure and drink plenty of water the day before, day of and day after the shot so the medication doesnt build up in the kidneys and cause even more problems. We are still not sure if the medication is working or not but at least the side effects so far are ones I can live with until we figure that out.
I really hope you find something that can start to help soon. Gentle Hugs!
Thanks Melissa - I'll definitely up the water. Trying to pick my day to take it was the biggest challenge so far - I'm still working too so don't want to mess up my week but the only thing I ever get out to do now is the football where I have a season ticket so I didn't want to mess up the Saturdays when we have games either. Luckily I work for myself so can be flexible on time off and my cleaner is in on a Friday morning so can help with the puppy if I don't feel well and will help me out plus it's the day my fiancé is most likely to get back from work early as he does his admin work from home then so it seemed the best one.
I asked to go straight to injections based on past reactions but she wouldn't do it so I'm prepared to be ill for a few weeks - she did say that as I'm so reactive she wants me to keep the nurses very well updated though and if I'm getting stomach problems again then they'll adjust the treatment to help and if that doesn't work she will switch to injections early for me.
Glad to hear this one is being well tolerated for you and fingers crossed you see some benefits soon x
Hi Mifford . Your post was very interesting. I also have lots of overlap and have had for nearly 30 years. My consultant is great at listening to me and reacting accordingly although he, like all the others, finds bloodwork reassuring too. He put me on MTX based on symptoms and leucopenia only and I was very wary of moving onto DMARDS. He also sent me for a Cosmofer infusion (iron) at the same time. Cosmofer is (little) known to trigger nasty reactions in some lupies and it did to me. This reaction was a severe type 3 hypersensitivity and coincided with my new MTX regime. After 5 weeks, I was worse than I have ever been and refused to take any more but he is now very careful to ensure that changes to anything are gradual, minimal and traceable. I really hope the MTX is good for you. It gets bad press sometimes but those who manage it do well. It's easy to administer and also easy to tweak the dose - I'd love to give it another try. Best wishes, Clare xx
Oh wow that sounds awful. I hope you are feeling much better now?
My consultant has decided to start me very slowly too as I tend to react quite strongly after minor tweaks - I was doing fine on plaquenil until they tried increasing it by half a tablet every other day and that was it, my stomach just refused. Then once that starts I can't go back to the lower dose as I'm now suffering hideous acid, nausea and upset stomach every time I try and take any of it at all. I'm worried about that all starting again with mtx but the carrot of being able to switch to injections is dangling there so I'm seeing it as an acceptable trade off to try it this way first.
I have a new dilemma. I'm due to start on the mtx tomorrow with my first blood test already booked for 2 weeks Friday (although i'm now thinking that maybe I shouldn't have those within 24 hours of taking the meds?). This morning I've woken up with a sore throat and earache and feel,like I'm coming down with a cold so I don't know whether to start it or delay until this has cleared. I'm going to hit the paracetamol today in the hope it's gone by tomorrow but if it's not do I still start it?? Flipping law of sod
Personally I would hold off the MTX as you won't know what is causing what. If your cold progresses, you will know you did the right thing and if it doesn't then surely another few days won't make too much difference ? Xx
I think it's exhaustion catching up with me as I've got severe fatigue at the moment and the cold and sunny combination at the moment really isn't helping. But thinking about it if I start Saturday night that gives me Sunday to rest which might work better anyway and the Friday blood test won't be within 24 hours of taking the meds. This may be a better plan anyway 😊
Oh - except that'll mess me up Christmas Day. I never thought picking a day of the week would be so difficult! Lol. Can I move them around does anyone know? If I did 3 weeks taking it on the Saturday and then Christmas week took it a day early on Friday instead?
The cold never came to anything so I decided to take the plunge and started last night. About an hour after I took them I felt really zonked and as if I'd been given a sedative - my legs felt all jelly the works. Went to bed early and woke up on and off all night with aches and sweating but not necessarily out of the ordinary. Since then my stomach feels "off" but no worse than I can feel on a "normal" day for me and I'm very thirsty but I'm absolutely shattered and have a hideous migraine. I slept for 4 hours this afternoon and keep going hot and cold and after waking up I'm getting random joint pain coming and going with my hands swelling up etc but again I've been getting similar for a while lately anyway. The tiredness is different though - it's similar to what i get when I have a steroid injection where it feels like it's the exhaustion coming out and I can catch up on sleep rather than the normal fatigue where I can't sleep and it has no end no matter how long I sleep for.
So far the headache is the worst bit so hopefully the folic acid will kick that into touch later but so far so good - I don't want to speak too soon as I'm expecting it to get worse as I take it but I've definitely had worse reactions to meds.
Just as an update - stomach really didn't take to mtx. I upped the folic acid to every day which helped with other side effects but the nausea wasn't subsiding so was told to split the dose and did that last night - I couldn't stomach the second dose this morning as have really bad stomach cramps and upset stomach today. Every time I look at food I'm retching too and it seems to be getting worse each week. I even had to cancel my blood test this morning as I couldn't leave the house long enough to go. We have a rheumy helpline at the hospital who I rang earlier and they are amazing. The nurses have been giving me all manner of advice as I've gone along and now they have told me they'll switch me to the injections. Unfortunately they can't fit me in for the first one until 18 January and have said try and keep taking at least a half dose until then but stop the week before - which won't be easy persuading myself next week when I feel this rough today! They are fantastic nurses though and so understanding. They are also great at passing on little tips that they pick up from patients as they go which really help sometimes. Fingers crossed the injections work for me and I'll update again once they are up and running
On the bright side I may have lost weight at Christmas for the first time ever! Lol
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