Back to methotrexate...which I'm allergic to?!?!

So since my hospital admission in July I've been off all ra drugs, I can tell you it's not been easy. After all the issues with my lungs and how every drug has given me the worst of its side effects I really believed in myself that I would go into my future without anymore ra drugs, that I would just have to live with the pain because I don't think I'll survive more lung issues and I don't really want anything else to go wrong with me like my liver or kidney etc which currently are the only parts of me that haven't been hit. But yes the pain has got to me, I honestly couldn't imagine keeping going like this. There is no quality of life and even tho I'm now receiving professional care as well as my son's full time care I still consider myself to be having a good day if I can get up and walk the ten steps to the toilet! So yesterday I saw the Rheumatology team, I truly feel like they are the only people left who understands me and what I'm going through, most likely cos many of them have a rheumatic condition! Sounds awful to say as I wouldn't wish it on my worst enemy but I do believe all doctor's could use a little inside knowledge. Anyway the upshot of my appointment was that I began by saying "please give me drugs?" My pain and disablement levels have been at a solid 9.5 for far too long and I'm so drained and struggling to keep smiling for my kids each day, I hate when I can't control the outburst when the pain is too extreme. I've been trying so hard not to dwell on the bad things or speak about my pain too often, I'm desperate not to push people even further away than I have the last few years....but it's so hard when the pain is truly crippling me. It's everywhere, my elbows my knees my ankles my hands (as always but worse) my neck my jaw my hips.. everything hurts. My lungs are still not functioning properly and I'm having periods of very low oxygen levels down to 83/84 at times and everyone keeps getting bugs and I'm petrified but as I'm not currently immune suppressed it's not got me too bad yet. Speaking of immune suppression, the point of my post only and last option available for treatment, I'm being referred for funding for rituximab infusion, the only safe choice for lung patients. In my area rituximab is only licenced as combination therapy with methotrexate, anyone who knows my history knows that in 2014 I was admitted to hospital with the first signs of lung damage, my medical folder has written in big bold red letters STOP! This patient is highly allergic to methotrexate. And here I am with this as my only option, I actually can't believe I've agreed to it that's how desperate I am. I have the pills sitting here ready but I won't be taking them till after Xmas, funding for rituximab should come in a few weeks and then that can begin too. I want to think positively and I want so badly for it to work this time. But I'm very very afraid. An x-ray of my lungs recently showed that they are not too bad but they feel bad, in the past it seems I do actually know best and will go downhill shortly after I'm complaining if bit feeling right. I also feel that pulmonary always want to blame the ra drugs and if I take methotrexate and my lungs go back downhill they will again blame the drugs, regardless that my lungs have still been bad in all the months off the ra drugs. One of the Rheumatology nurse has ra herself and phoned me recently and said she woukd stand behind me as it really does seem to be the ra affecting my lungs rather than the drugs and keep being taken off the deugs isn't actually helping because the rheumatoid swelling needs Suppression. What would you do in my situation? I also got a nice deep steroid injection that i pray will help me get through Christmas! Please please please do not reply with changes if diet additional supplements etc, these have already been investigated and optimalised and is no longer the advice I'm loomkng for. Thanks in advance for any support/ suggestions xx

47 Replies

  • You have really had a rough ride. I hope the biologics you are waiting for will help and the mtx won't turn out to be a problem. I understood that advice on diet was not something you were interested in but alternative nontoxic treatments like LDN and Minocycline Roadback foundation. May be something worth looking into. These meds have helped many when RA meds no longer work. The best of luck:)

  • Thank you simba I've heard a few things about them, I've also recently been told about the chaga mushroom which I'm researching at the moment. Thanks for the input I will delve deeper x

  • Oh bless you!

    I really do feel for you. I know what it's like to be in so much pain that one ends up roaring like tiger at people. I still feel guilty for telling some poor woman in the park to f-off. I went back to try and apologise but she'd gone. I haven't seen her since.

    I'm not sure what I'd do for sure if I was in your position. I don't think I could stand the pain, so I'd probably just put myself in the hands of rheumatologist. I'm allergic to sulfasalazine (makes me psychotic). Not sure I'd take that if it was my last option, unless I was having careful monitoring.

    Sorry you are in this position. I hope the depot steroid gives you some relief.

    Look after yourself, and sorry I'm not much help. Just wanted to let you know someone was listening,

    Seasons greetings.

  • Thank you Nettie it really does help just to know people care. Lol about the lady at the park! I think we've all done it, it's not easy coming to terms with all these limits. Bless you. I was on sulfasalazine my Rheumatology consultant was determined it doesn't affect lungs but pulmonary consultant says it does. I do wish they would all get on the same wave length at times! Warm hugs x

  • My goodness, you are going through the mill. I was meant to start Rituximab in August but decided to stay with Humira as this has been a life changing drug for me. I was advised by the dermatologist that both Humira and Azathoprine were the cause of my small skin cancers. What was decided by the rheumy nurse was that I swop to methotrexate, but a low dose of 2.5 to comply with the rules to be given Rituxamab. I just wondered if this small dose of mtx would be an option for you to start Rituxamab and see how this pans out. Hoping your steroid shot helps with your constant pain and allows you some respite for Christmas. Wishing you all the very best. Hugs X

  • Thank you Gigi, yes my Rheumatology consultant has put forward for me to have a smaller dose just to comply though the lowest she would go was 7.5mg weekly. That's why I've agreed it as she seems very certain it won't cause a problem at a lower level. I've agreed to go along cos I really don't feel I have a choice. I totally understand the desire to stay on the life changers. Enbrel gave me some degree of relief before the lungs took over and it was pure bliss to be even just a bit more able bodied. It's definitely a lesson learnt when you know just how special each step is. Skin cancer is a sucky side effect with these biologics. I've had a cancerous birthmark removed from my face as a child, that was before the RA. My father also has ra and skin cancer too. I often wonder if all the worry that the biologics are causing cancer is actually that having RA by itself leads us into many other health conditions. thanks for the reply hun. Wish me luck x

  • I haven't got any suggestions orchid cases....except I wish somehow we could find out the truth about Mtx being essential with Rtx.

    I won't touch Mtx as it made me so so ill with horrible Cns symptoms.

    I too was told Mtx in small quantities had to be taken with RTX.....I had my first two infusions two months ago ...but no Mtx.

    I wonder if they write down we have to take it.....because " the rules " say so & then don't check if we take it......but it is written down that we do take it?

    Mad I know .....but I always believe in conspiracy theories! But there must be some way you can take RTX without Mtx if you are so allergic to it long as it's safe?

    Your best bet seems to be the Rheumy nurse who has offered to support you.

    Hope the steroid jab lets you enjoy a great Christmas!


  • I get rituximab and not methotrexate (in edinburgh). My infusion takes 4 hours rather than the 2 with mtx. For the first dose I had nothing else with rituximab but more recently I've had leflunomide which is also reputed to boost the biologic.

  • Thank you hun. You know my mum mentioned that, maybe it was ok to say I was taking it and just not take it. The Rheumatology consultant is convinced and very determined that rituximab will only kick start into action if it has methotrexate pressing it's buttons, so to speak. But I have heard of others on rituximab without methotrexate. I would like to know if you start seeing any benefit from the rituximab without the methotrexate, please would you come back and let me know how you get along? I'd really appreciate it. Best of luck! I'm a big believer in conspiracy theories hun, I've been at the mercy of them myself x

  • I can't really say if I'm getting any benefit yet from RTX....I'd had a Depo injection a month before I had the infusions & that usually lasts up to 3 months for me .

    I asked the Sister who administered my infusion how much Mtx was in the first infusion & there was none. I asked if she had instructions to give me a scrip as I was initially told I could take as little as 2.5 mg a week...but she hadn't. I didn't question it your Mum on the nudge nudge wink wink theory

    Also having broken my arm that arm/wrist is really painful, but so is the other is it the injury upsetting everything or whatever?

    I seem to remember reading somewhere ( or I dreamed it or imagined it) that breaking a bone could bring on a flare.

    I'm seeing my "arm doctor" two weeks ahead of schedule next week as it's so swollen....don't know if it's the RA or the injury.

    I'm not due my next two infusions until April....I will try to let you know if I do seem to be getting any benefit from the & if Mtx is mentioned

    It's all a bloomin' magical carpet ride isn't It?

  • It sure is! Lol I call it my cRAzy life but I see I'm not the only one :) for what it is worth yes in my opinion/experience a broken bone, indeed even a slight twisted ankle with me has bought on major glaring of the ra in all my joints affected. In my experience pretty much anything will increase the rheumatoid activity. Sorry you are going through the wars. We really don't need broken bones and joints that don't bend and flex! My Rheumatology nurse said it can take a little while with rituximab so fingers crossed. Also the methotrexate is meant to be administered once a week by tablet, as far as I am aware it isn't meant to be injected alongside the infusion. They want me to start taking the methotrexate next Monday and to take it each week whilst I wait for tge rituximab infusion to be organised. They gave me a prescription at the hospital for it and it's then added to your repeat prescription. I believe the injectable methotrexate only comes in 15-20mgs. The tablets come as 2.5mgs so my doc wants me to take three once a week. When I began them before it was 6. I personally preferred the injections though as the tablets gave me terrible gastric symptoms. The lungs were not such an obvious symptom until I was seriously sick x

  • Mtx with biologics is shown to be more effective but also rises the risks of adverse effects and the risk of infections. Yes I would also really think through how to proceed and press your doc on information. Good luck, Simba

  • what a horrible situation to be in. I know something similar having had methotrexate withdrawn about three years ago because of possible liver damage. I've been given leflunomide - have they considered this for you? After three months its beginning to reduce my feelings of inflammation, that together with the biologic (rituximab).

    I hope you can get some relief but hesitate to suggest anything. It might help to know what helps other people though.

    Have a lovely christmas and get some rest!

  • Thanks Cathy bless you, I really appreciate all the replies :) yes I've heard of some use of leflunomide with rituximab, sadly I've already researched leflunomide and it's totally not allowed, it's got almost as bad a record of interstitial lung disease as methotrexate. So frustrating because rituximab is documented as never causing lung problems, it's the only ra drug that's not credited to lung disease and yet it has to be used with the worst for lungs. I pray they start looking to design a drug for the ra patients with lung involvement. Every time I'm assured how the side effects are incredibly rare and it's never likely to happen to me. Then bam! It happens. I feel torn between wanting to stay alive and wanting to be able to live a life. Many thanks for everybody's kindness. I hope you all have a lovely and pain free Christmas xx

  • Well as I was saying the first few doses of rituximab I had were without any other Meds. So that might be a possibility

  • Thanks Cathie. It's strange isn't it, surely if it can't be licenced here it shouldn't be possible anywhere. Are you getting any benefits from rituximab hun? I feel so frustrated trying to tell my dr that I know others have used it without. She completely blocks me like I'm not a Dr so I don't know :/ according to her I won't get accepted for rituximab if we request it alone x

  • Also I can understand when the rules are vastly different in America to here, that's to be expected but why is it different across the UK? Surely we all get those guidelines. Maybe I should be moving to Edinburgh :)

  • wow, your are really in a battle. I am so sorry for what you are going thru. I was diagnosed with aggressive RA 7 months ago I was initieally on mtx starting with 6 a week up to 8 a week. Up intil 2 months ago,then it wasn't carrying me thru the week, I was having flare ups. Mr rheumy changed me to the mtx injections which were fine except they were $100 a shot so she gave me samples in the meantime while she figures out what to give me next. The shot is not holding me now as I have experienced these past 2 days is flare up in my left foot and ankles. Seems that cleared up after my shot yesterday but son't know if that will hold the week. Never had it in my feet before so it is spreadinf and that scares me. I understand your fear. It's like a crap shoot. take a chance on pain free and wuality life or what? What is the alternative? I am over here in the States and I can tell you that the health insurance companies are the ones who are in control of your mediciations. I really hope this next ride with the meds work for you. God bless you and I pray that this works for you

  • Thanks Hun, it is awful as you watch it spread throughout your body, mine happened so fast after initial diagnosis didn't know what hit me and was in a state of shock. I've never had any period without symptoms since then but the enbrel injections did reduce some of the swelling and so coming off them was awful as the swelling started and took the same path through my body, it was in a sense harder because I could see what was coming and I so didn't want to go back into that pit of hell. I think I'm finally starting to see that I never really got out that pit and I'm never really likely to. I think that sense of acceptance has helped in a way. Before, I stopped everything, sat here crying in pain wishing I would get better the drugs would do miracles and one day I would restart what I had planned for my grown up years. That's not gonna happen now, no lifestyle changes or naturopathic remedies have made any difference, painkillers barely take the edge off.... so now every day I get up and smile, I do as much as i possibly can and when people ask I say I'm ok. The place I was in before didn't benefit me at all, indeed it left me incredibly lonely in my suffering, the pain was all I could think of talk about. It's still as painful I just fake it now, at the very least it means my family can smile and relax about me and I find people actually ask more now, which makes me feel better even if it isn't very honest. I don't want them to remember me as the pained depressed person I have been for three years. There are so many things I can't do I won't even write that list, instead I have to find ways to do things and do things that I AM capable of doing. Every day no matter how bad it is I like to feel I've achieved something and I pray my children will grow to view me as a warrior instead of a victim <3 much love hun, it's so so hard at first, no one could ever expect the levels of pain with ra and the extent of disablement it causes. Just know this, there is a process much like grief, no matter how bad it gets you will get through each phase, when you think I just can't handle this anymore, you will. I won't promise you a future without ra or a miracle cure, but I will promise you a new future living with RA, doing the best you can with the hand you've been dealt. I hope you can get on a drug regime that helps you. I often feel awful for you guys across the pond, if I had to pay for any of my treatment I wouldn't have any at all. I could never justify spending that kind of money on myself with my family. It must be so hard and i know how much our drugs cost. I do wish we had the option as you guys do though to seek our own medical professionals and treatment, like stem cell therapy seems such a possibility for my situation but not something I'll ever be likely to see through the NHS, as grateful as I am for them <3

  • Hi again, I got the impression that it was up to me If I took mtx, that is accredited with causing non melanoma skin cancers also. I recently had the start of another one and used a chemo cream that seems to have burned it off. It's a balance really having erosive RA for over 30 years and Hashimotoes for 38 years, when you find a cocktail of drugs that work, you tend to want to stick with them and live with the side effects, of course nothing life threatening like yours. I may well have to look again at Rituxamab next year. I am taking 10 mg mtx at the moment, apart from a dodgie tum in the beginning am doing ok on it. Just other things that crop up. I do really wish you good luck. X

  • Hi Gigi I was put on RTX despite having a basal cell carcinoma...& breast cancer. it was described to me as the best option Biologic for people who'd had cancer.

    It sometimes seems the rheumies tell you what they prefer to prescribe...not what clinical studies show to be the best option.

    Or is that my paranoia?

  • Miss crone I think I like you :)

  • Thank you honestly I should come on here more often. There is something special about talking to people who just get it. I'm in the hashimotos clan too hun well I'm pretty much gathering autoimmune diseases by the bucket load. The life threatening bit is definitely scary and a big part of my world now but I'm very aware that there are people much worse off than myself even within the same disease. I just pray I'm making the right decision, I've got little people that need me to stick around a few years yet. X

  • The way I look at it...i've got R A ...sort it.

    I listen to all sorts of daft ideas some of which must be thought up by the devil!

    But bottom line I have a great Rheumy who has guided me for the last ten years & apart from eventual horrors with Mtx & ( as he put it) Prednisolone frying my brain ..I still walking...except when I fall over & break an arm! Big error of judgement that & causing a lot of angst!

  • You are fabulous hun. It's not easy to keep that sense of determination or faith. I definitely feel at the moment I just have to take that leap of faith that they have more knowledge than I do and that should things go belly up then I'm already incredibly grateful to the hospital for having seen me through the last two admissions and I'm sure if I listen to my body they will know what to do if I need help. I do get peeved though when I will tell them for two months leading up to an exacerbation that my lungs don't feel right. I'm never taken seriously until I'm admitted as an emergency patient or my blood tests/stats start showing evidence, I'm sure if they could just take it for granted I know my own body then I wouldn't end in these critical situations. Each time I come away thinking and saying look I told you it was coming, surely next time they will listen..then the whole thing rolls around again.

  • Oh goodness AgedCrone, breast cancer too, I hope your treatment for this was a success. It's just never ending really, I do believe a trauma such as a broken arm does cause a flare. Three years ago I tripped out of the back door and dislocated my left shoulder. Apart from taking an age to heal, it definitely caused a flare, again a steroid shot shopped helped with this. Thanks for the info re Rituxamab. I see my rheumatologist in April, if not before, depends on the outcome of the recent ct scan and X-ray on my chest for some sort of nodule. See the rheumatology nurse in Jan for a review of my OP, this is possible long term use of steroids and ppi's. Wishing you a great Christmas despite your arm and a better New Year. X

  • Gigi I hope your scan and x-ray turns out to be OK. Does the OP stand for organising pneumonia? It's one of the things on my list of diagnoses. I don't have nodules in there but scar tissue/inflammation plus asthma emphysema and bronchiectasis lol. I feel as though DR's all look at me as each diagnoses depending on their speciality, I wish they would realise that the whole thing is so connected and needs them all to cooperate to treat me as a human, I'm pretty sure you know what I mean lol. Much love hun x

  • No nothing as serious, osteoporosis, but not responding to meds or diet. Had it for 14 years. I am not too worried about the results of the recent scan, it looks like it's on the 5th rib. My rheumy's writing is just terrible. Lol. It's a good forum for making you realise how this disease effects everyone. If you have one autoimmune disease,it seems to attract more. I must admit I take thyroxine and don't think too much about the Hashismos, but have found lots of advice on the Thyroid UK site, re gluten, I went gluten free 3 years ago and found it helped me anyway, way before I joined HU. Also have a b12 deficiency, all seems to tie up. I do feel for you though, as you have just so much going on, and coping without RA meds. All the very best. Hugs X

  • Thank you hun, my foster daughter's mum has osteoporosis. I hope they get it under some control for you soon. I tried eliminating everything when the ra kicked off it really hit me like a train. One day I was running round like a loon getting ready for Xmas, single mum and foster Mum, the next day my ankle swelled up, two days later the other one did, then my right knee, left knee and so on. In four months I was unrecognisable, doubled in weight, couldn't stand. Of course with the weight gain I received huge amounts of dietary advice. So i did it all by the book. I was that desperate I would have eaten rabbit poo if they told me it would cure RA lol! I discovered that 1.steroids are a double edged sword, very much needed and lifesaving at times....but don't they cause some hell? 2. Water. 3. Deficiency testing and supplementation, which I guess includes thyroxine. 4 more water (I know this but don't always maintain as well as I know I should) 5. I dont seem to have any food allergies at all, though I did become aware that I was eating more carbs than I needed whilst on steroids 6 my whole body was swollen. I keep replying and going off topic on long hiatus lol I'm sorry :/ this is my way of working thru my anxiety I think :)

  • Just say what you feel, it's good to off load, we are good for understanding on this forum, we have been there in some form or another. I think for me, weight is a thing I can to control to some degree, know what you mean though, it's a battle with drugs and lack of mobility. My mother died when she was young from lung cancer and was such a great Mum, my sister is my rock. So pleased you have a great support from you Mum hugs to you both. X

  • Hi, I have aggressive RA for about 9 months now. I replied to you earlier this year and since then I ended up back on the mtx, 8 tablets once a week along with prednisone. Was working well till I ended up with a perforated lower intestine and rushed to er. Had an ilieostomy with a temporary colostomy bag to be reversed in June. Off all my RA meds as they are imunosuppresents and I am still healing. I have been experiencing flares, left leg and right wrist or left foot and right shoulder, etc. At least it leaves me one leg to hobble on. My rheumatologist said only xtra strength Tylenol for pain and if absolutely necessary one prednisone. I can also take my tramadol along with this. My regular dr said ibuprofen with the tramadol. Tylenol does not do anything, Advil does, even with the risk of stomach irritation, I don't think it's as bad as mtx. My rheumy is looking into Embrel or Humira because the other biologics state the risk of perforation of intestine. Hope they are cheaper than the mtx biologic. Praying that you are managing your pain some. Hang in there, you're worth it.

  • Thanks for getting back to me Hun I'm so sorry how things have turned out for you! I'm back on it now too and also struggling with stomach/acid ingestion and mouth ulcers. I'm afraid the biological drugs are Kuching more expensive (as best I know, I live in England and thank my lucky stars for the NHS, I've hardly even touched the majority of these expensive medications I've been prescribed due to issues the whole way through all this. I pray they can get you on something that helps rather than hinders...and sooner rather than later. I remember being pretty fed up by the time I got a year in, by then I think I had finally realised it wouldn't be a simple treat to cure and have me back on my feet in no time kinda thing. Though I think once I got thru that harsh reality I started to accept a different future. Now as I'm sure you feel the same I'm grateful to be here and just want to survive, I don't pine to not be housebound anymore I just want to be able to function as best as possible in my home. Sending healing hugs your way x

  • This is what functional integrative medicine is doing. Connecting the dots, seeing the whole picture and story of the patient.😊

  • BC treatment great...apart from fact the private hospital gave me a non electric, there I was with tubes everywhere, Blazing RA in my shoulders & a mega sense of humour failure. I phoned the matron of the hospital from my cell phone, ...having asked to see someone in authority who didn't appear....& told her if I didn't get an automatic bed within the hour I was out of there tubes & all.

    Got the bed & I think a bowl of fruit!. You gotta tell 'em who's boss.....only my OH at the time apologised for my "tantrum"! Words were exchanged I can tell you!


  • Oh well done to you...when I had my first foot fusion, the specialist nurse explained I should have a pillow to support my knee when I came back from the surgery, as my foot was in a cradle, this didn't happen and I was in agony. Apparenty there was a shortage and this arrogant male nurse asked me if I wanted him to take one from another patient!!!! I told him I didn't care where he got it from, my OH told me not to make a fuss, well the air was blue. Not one for swearing, but needs must ...When the surgeon came round, not so long after he went mad, they soon found a couple of pillows. This was the National Royal Orthopaedic Hospital. I had 3 more ops there, but made sure beforehand, I wouldn't put up with this treatment again and never did. X

  • I think I must have been full of some mind blowing painkillers....I usually think of just what to say a week later...but lying there like a beached whale..I,just snapped.

    I was in a Ritzy London private hospital ......the nurses had very elegant uniforms but were too posh to wash if you know what I mean...but the "matron" very glam - not a day over 25 knew I meant business, but the food was to die for & there was live TV from all over the world!,

    Those were the days ...could just dowith some of that luxury whilst I decide which ready meal to have on Christmas Day ...just as long as I can get the bubbly open I'll be OK!!

    Just counting the days to my trip to the sun in February!

  • Ahh you two have impressed me! Haha I'm such a wuss it drives me crazy about myself. I never make complaints or make a fuss...well not to those who I should do. Thank God my mum has become my best friend since I got sick, never thought I would ever turn to my mum for help I was so determinedly independent but she's the strongest woman I've ever met, all 4ft11 of her and in those situations it's usually her that stands up for me. Well done to both of you for telling it like it is. I say I'm fine, I'm ok so often I wonder who I'm trying to convince!

  • Your Mum probably comes from the generation where treatment on on the NHS was the Gold I think young docs & nurses have no social grace training & treat us like idiots. I can understand if I'm told something may make me feel sick fir a few weeks, but will then kick in ...but if not don't worry there are plenty more things to be tried. But I found before my oresent Rheumy I was just told " we'll try you on X,Y,Z " with virtually no details of what to expect & nowhere to ask questions without haggling for an emergency appointment which time you feel so awful you'd take anything you were offered because you feel so bad.

    I was told to imagine the pompous doctor naked if I was summoning up the courage to disagree with him/her about a certain takes your mind off being nervous & you manage to concentrate on what you need to say.......let me know if it works.

    🌲🌲Merry Christmas🌲🌲

  • never underestimate the power of short women. My mother was that height and I am only 5 feet and being short , you learn early to speak up and be noticed. I think we have backbones bigger than ourselves, lol

  • You have made me smile, I can just imagine, you have painted a great picture !! so glad your treatment worked for you though. Do have a good and restful Christmas and keep that sunshine holiday in mind. My dear sister and brother-in-law are hosting Christmas Day and true to form she has bronchitis again, she is my rock, will help as much as I can. We go to my son and daughter-inLaw's on Christmas morning for a champagne breakfast, smoked salmon and scrambled eggs, yummy... Will make a silent toast to you. Enjoy your champagne. Hugs X

  • Hi Orchid C, l'm not going to offer any great cure but please be careful with the dreaded M, l not only ended up in hospital and now have Pulmonary Fibrosis, my Hair fell out and my skin also peels leaving me looking like l have spent 12 hours in the sun.

    Surely they have another DMD other that Methatrexate to work in tandem with your biologic. Sorry l can't help you but l do feel that you are being put in an impossible situation. I wish you well and hope you have a lovely Christmas and a Happy and Pain free New Year xxxx

  • Thanks majestic, I see you know my concern! So worrying, I burnt to a crisp in five minutes on methotrexate too and the pulmonary fibrosis is no laughing matter. I already have it across both lungs so I really can't understand the whole thing. We did restart sulfasalazine to see if we could get licenced with that, my lungs were getting worse again so pulmonary consultant took me back off it. I feel it's not the drugs but the ra causing issues in my lungs now tho but if I take the drugs and get worse my pulmonary will simply blame the drugs and take me off them again. Thanks for the support hun. We are a rare breed with the pulmonary involvement <3

  • I thought if you had failed on 3 Dmards inc Mtx, you would be eligible for Biologics? Obviously without Mtx.

    Can you ask your Rheumy to make something like a " special case" application explaining how poorly you are & how you really need Biologics, but need a dispensation to exclude Mtx?

    I don't know if that is a possibility....I don't know much about appeals procedures, but your doctors must know how to proceed.

    If they don't ......Have you thought of contacting the patient assistance office at your hospital? They probably won't be able to interfere with individual cases, but they will have the information you need...about who to contact ....I think you ask for the "Pals" office.

    Just a thought......

  • I think it's 2 DMARDS Kathy, one has to be MTX unless unless otherwise contraindicated, plus the other qualifying eligibility factors. I also think LEF can be used with RTX in certain circumstances if MTX isn't an option.

  • Hiya Cass. I'm unable to help re MTX or no MTX but I wanted to say how much more positive you sound in this post. I guess it's because you have a treatment plan & if so I'm pleased for you. I hope however you have your RTX it works for you & allows you to do all you wish to.

    Take care & I hope for a Happy Christmas & a pain-reduced 2017. x

  • Just happened upon this from the BSR, might be interesting re the taking of MTX with RTX rheumatology.oxfordjournals...

  • Thanks nomoreheels I'll take a look. I think my whole attitude changed not long after my initial cry for help. At first I just felt so panicked and that there was no hope. The treatment plan is more of a wobble on my part, I'm anxious about it and as you've probably seen me and anxious don't play well! Since i began the Facebook page, I've realised there are many people battling through for several years passed our expected expiry date. Some are doing better than me some are doing worse, some are having luck with treatment, some are not. I've just got to hold on tight and work my arse off to get through the best I can for the kids sake. I'd like to put the word out there and be a support to others going through the same as me or concerned about these very rare manifestations of the disease x

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