Remission?

Hello, I have had RA for 13years, on mtx for 8years, in December had an appointment with my amazing Rheumatology nurse, I had been flaring for some time, & it was decided that I would be suitable for Humira, had all the extra tests, appointment in January,by which time I had no symptoms of RA! Now April, still very few symptoms, reluctant to go on mtx again & feel I really don't need it. Seeing nurse on Tuesday, have any of you had this experience? If so what happened? Did it come back? Thanks so much for reading all this!

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  • Hi Gilox. I have the same question only my RA was a constant flare for over two years before I was diagnosed. Then after 3 months on MTX, I felt much, much better and after 3 more meds I feel actually GOOD. First the pain was gone and then after another month I had so much energy!! So now I have a cold and I was told to stop meds and then when completely over cold, I am due for an infusion of a new drug. I'm like you, I really don't feel that I need it, and am terrified of more crazy side effects now that I feel healthy. I realize I could get a major flare at any moment, but would like to see how long this happiness will last. I think we will hear advice maybe to keep some meds in our system, right? Now that I've rambled for this long, I don't have an answer for you. So sorry. Hope these wonderful peeps have some advice for us...Thanks, Chris

  • Thanks Chris, I did have a really big flare 3weeks ago,(my mother died) was really worried that I would be in a huge amount of pain for the funeral,so rang the rheumatology clinic asked (begged) for a steroid jab, they agreed, no problems since fingers crossed! To me it proved that stress can be a trigger! Hope you continue to be pain free. Gillian

  • Please except my condolence.i knw only too well yhe pain of losing your mum .the stress is awfull and it does trigger a flare up .

    Love and big hugs.kathy x

  • Sorry for the loss of your mum.

  • Hi Gillian - So sorry about your mother. Loss of any family member is right on the top of the stress scale. Fingers crossed for you

  • My sincere condolences about your Mum. My Mum died on 10th April and I am half expecting a flare up. I think stress does play a part and it's been a very difficult time, especially the last 6 months. I have a blood test every month and hopefully if my inflammatory levels go up I will get a call. It has happened previously. I do feel much better since being on Rituximab but I don't think I will ever be medication free. My symptoms were so severe when I was first diagnosed in 2001 and it was mostly a biological (Enbrel) that saved me.

    I hope you continue in Remission, I know it is possible. Hope your appointment goes well

    Best Wishes, Michele

  • What sort of meds are you on beside the Mtx this infusion you are going to get I get this twice a year for osteoporosis which I have on my spine. Have any of you's had tablet form of the Mtx.

  • I am not taking anything at the moment Margaret, was on 7.5 mtx plus folic acid, when I went back for my appointment in January I was in remission,so did not qualify for humira! Still in remission,appointment on Tuesday, so will find out then if I need any meds, so hoping all will be good,really don't want mtx again! Good luck will your treatment.😊X

  • Hiya Gillian. Please accept my condolences on the loss of your mother, it's a horrible time. Unfortunately I'm also proof that stress can bring on a flare. Last November we lost the last of our parents & whilst I coped with it my bloods were indicative of a flare.

    Spontaneous remission, what a lovely thought, it's what we all dream of. Well, less that 10% achieve it so who knows, you could be one of them. What I would add as a word of caution is that although you were symptomless you did flare & had a steroid injection. My experience of a general steroid injection was one day of complete normality, absolutely no symptoms. When we achieve remission we can still flare intermittently but they tend to be more gentle flares not the hit by a bus type flare.

    I'd talk to your nurse as you're seeing her next week, see what her take is on it & ask her advice re what you do about your meds. She may suggest you wait & see how you are after the steroid injection loses potency or have a blood test to check the current state of play (your ESR will be telling). She may say that you can stop your MTX or change to a lower maintenance type dose if your bloods reveal stuff's still going on but keep in contact with her. I don't know but it truly hope that you have achieved our ultimate goal, yippee for that if you have! 😀

  • I am so sorry you had a loss of a loved one in nov .i remember when i lost my lovely mum last year. You were one of the first to console me .thank you love and hugs kathy x

  • Thank you Kathy, no need for thanks though, we can empathise. No matter what age you are when you lose your mum they leave a gaping hole don't they? I was 23 but thankfully she saw me get engaged, she was the only person to witness it but sadly she didn't see me married. Quite by coincidence (as we'd to tie in the date with our best man flying in from Qatar) our wedding day was the first year anniversary of her funeral.

    I hope you're well otherwise? x

  • Bless you as you know .y mum was 94.her 1st anniversary is on the 8th of may .good for her she past in her sleep after going to mass but even at that age i feel so sad that i couldn.t say goodbye .as you say .age doesn t matter. But i needed someone to talk to. And found it here.i know you don.t want it .but was sincerely appreciated.thank you.

    Kathy x

  • Well, there was no better way for her was there Kathy, it's just those they leave behind who are sad they didn't have the opportunity to say their goodbyes, as we both experienced. It's one of those things, you can't have it both ways. We have plenty of happy memories we can think back to though don't we?

    I know we say thanks aren't needed but it is nice to know you've helped just that little bit, so thank you Kathy. x

  • Thank you love take care x

  • Thank you so much for a very thoughtful reply, I had stopped the mtx in December as I was getting horrible side effects (attacked my oh with a chair, was so bad tempered all the time,lost a couple of friends through it) was only on 7.5mg by injection, that's why a bio was thought better for me, also we both had that awful flu/ chest infection in early January,once that had gone I realised all my ra symptoms had gone with it! 😀I will definitely keep in touch with the ra clinic, not taking this for granted at all! But full of hope!!! X

  • They were pretty shocking side effects weren't they? No wonder it was stopped.

    I was reading something I'd bookmarked from the NIH, an institute & agency of the US DOH, it led me to some research you may be interested in, but please don't shoot the messenger! niams.nih.gov/news_and_even...

  • Have just read that report, hmmm! Worry that I have....had a fall a year ago & broke my wrist, although it sort of healed, the little bone that sits on the back of the wrist is now at the side, did query it at the time & was told it could be fixed but would be in plaster for 8-10 weeks! That can't be done live in a village, disabled oh, need to drive as no public transport. that report says even in remission the inflammation in wrists was still high! I am having trouble with that wrist! Def a lot to talk about at my appointment next week!!😉

  • Ouchy. Do you still have good movement in that wrist? What a coincidence the image is of a wrist though. If it helps you be prepared to question it next week that doesn't make me feel so bad as I did wonder if I should mention it or not, I didn't want to thwart your hopes.

  • So pleased you did, I crochet (a lot) also have 3 dogs, so walk at least 2hours a day,did wonder if all this had anything to do with it, but still feeling very positive about everything,have something to show Jayne (rheumatology nurse) next week. So thank you 😊

  • Oh good, you're welcome. It's good you can still crochet. My Nan was a wiz at it but I think disappointed her as I just couldn't catch on. She was successful a teaching me to knit though, only basic stuff compared with what she could magic up but still.

    Al the very best for next week, keeping my fingers crossed for you. Do keep us up updated won't you. x

  • Sorry for the loss of your parent. Take care of yourself.

  • Thank you Sue. x

  • So sorry to hear your sad news P. Take care. Hugs 😘

  • Thank you U. x

  • I also had spontaneous remission. I have not gone back on Methotrexate. I did do initial doses of Rituxan ,however my inflammation was gone long before this infusion. It went down when I de died to stop all drugs. The reason was so many side effects I could no longer differentiate between drug reaction and illness. It has not returned since Dec 2016. I was diagnosed in July 2015 and had been treated with an endless array of DMARDs and Biologic with no success and endless drug reactions. This is due to multiple drug allergies including Naproxan. Which is in all NSAIDs. I reacted very badly to Prednisone so my only options were Diclofenac or tough it out. I chose to tuff it out. It took eight weeks but it did eventually come down on its own. I have been at CRP .04-.06 since. I find it exhausting. I am waiting for the next flare.

  • Sounds like you are having a rotten time. Must admit mtx worked well for me for several years, but just could not cope with the anger I felt at that time, as soon as I was put on a lower dose those feelings disappeared,when I got the chest infection I stopped it anyway, I was flaring so badly before that, so the decision on biologicals was taken, so pleased I never had to have it! The steroids have always worked well for me, giving at least six weeks painfree, but still hoping the remission continues! Wishing you all the best in finding something that works for you.

  • I would love to know if perhaps MTX is causing flares rather than preventing. Like Prednisone, does it replace some process in our body which can no longer function without the drug? Proton pump inhibitors being a good example. Once you take them your stomach will no longer suppress acids without the drug. Our we being sucked in by large pharmaceutical companies? Are Biologicals another example of life dependency? Colour me paranoid but if they can charge 12,000 per treatment per patients , that is a lot of motivation. We are talking billions and billions. Is it truly in their best interest for them to find a cure ? Sorry, guess I am having one of those days. What to do? To sick to function and not sick enough to tolerate the constant isolation. To much RAIN

  • Have read about hypothesis that mtx helps with the symptoms but makes the disease stronger this is why usually more meds are eventually needed. Who knows probably no one, yet.😳

  • Hi Damaged - an interesting line of inquiry. I had a similar series of thoughts about many of our medications. I really did not like MTX for the year I was on it. It would be interesting to see the private information the labs have, huh?

  • I do know many of these drugs work well for many people but I simply do not spend well to meds. I have a very long list of allergies including, Neproxen, Sulfa , aspirin , Lefludemide etc..I reacted badly to Prednisone, Humira and Orencia. It was impossible to isolate what I was reacting to and what was illness. Genetically I can now know in advance how my body will respond. No more lab experiment lol it has not escaped my attention that I feel much better without drugs, including opiates. I process them very quickly so they are not effective. Drugs like Lyrica, I process slowly, so wicked side effects. I also cannot drink alcohol. Again I do not flush it ? I drink, I get drunk emmidiately , black out then die for days. So no drinking for me ..thank goodness I am Canadian. The only relief I xeence is with canabis. I have a vaporizer so it works like a muscle relaxer and does not affect me cognitively. Here I have a prescription so it is legal. I have stopped MTX. Twice now. I stopped at Christmas because it made me feel so ill I could not even do family outings. I never could convince myself to start again. My inflammation is still under control so no need. The pain is horrible all the time but after all this time I manage. I just DI can to not focus on pain. Cannabis is helpful on that front but soon will not be able to afford it. Guess I have to learn to grow it myself lol

  • Hi Damaged - Wow - That is a long list of allergies. I'm sorry for that. Honestly I would be the most upset about not being able to have a glass of wine =(

    Nice that you are able to have cannabis. It is a wonderfully effective and efficient herb. But not legal of course here in Virginia. I do wish it were legal, as it is much better for the human body than these other drugs. Of course big pharma does the best it can to dismiss it. I read a study recently that indicated that marijuana is not addictive and does not lead to harder drug use. I can't find it at the moment, but it was interesting.

    I'm glad that your inflammation is under control. It truly makes such a difference in how you function and feel. Have a great weekend

  • Perhaps with the Feds going legal here that will change. There are several states that have legalized now. However, in Canada, we have always been able to obtain a prescription when medically indicated. Perhaps they could start with that? The Arthitis a foundation has made it the centre of research this year as well. There are many products like Phoenix Tears and CBD powder, oils which have no THC but very effective cancer treatment.

  • Exactly - The Health Ranger here sells most of those oils. I'm just not sure what would be affordable since we already do herbs and supplements on our own to help health issues. Works pretty well, but hesitant to add more expense right now - ha ha. Fingers crossed - I would rather be able to grow my own... =)

  • I am with you there. I guess it is time to learn. I am going to build a little greenhouse out back. I know nothing about growing things so a steep learning curve ahead lol I was trying to talk my mother in law into doing it. She is 80 but with all the horrible drugs I was on she is considering it. I was joking of course. They live in my home but I use a vaporizer so they were not aware until I disclosed it. She tried to talk me out of it , relentlessly but she is coming around. Many of her friends are talking about these days. Besides, I made it very clear that the topic was not up for discussion. My body, my choice.

  • Sorry, condolences on your recent loss.

  • BLIMEY.i have not had an experience like that before but was once told 8 yr ago that it wasn`t full blown RA but since then it has become just that.Sounds like yours is lying low for a bit .But I hope it has left you for good.Best of luck and let me know what the nurse has said on your recent appointment.

  • Will do, & many thanks.

  • The inflammation is down but all joints are affected. I also have seven autoimmune diseases, Non Hodgkin Lymphoma, Lymphodenopathy etc... I am however, realistic about what is yet to come. My CCP antibody is 300. Anything over 250 generally means a far more aggressive disease . There is no remission as far as I go, this is as good as it gets. I am prepared and ok with it. I have gone undiagnosed for at least ten years. It is very surprising that I did have a spontaneous remission. But not likely to last. Which SUCKS!! It is not a life. I fear starting anything in case it triggers another flare. I literally spent sixteen months unable to do basic hygiene. I could not wash my hair because I could no longer raise either arm but the fatigue is still so persistent. The worst is yet to come so I am going to do my best to live my best life. For me that means as few drugs as possible for as long as I can.

  • Oh my dear friend so sorry you are in this situation, glad that you are feeling positive about the future, but my thoughts are with you, be kind to yourself. X

  • I do not see a nurse other than infusions, here we go straight to Rheumy as often as needed. In the first year or so I see her monthly. Now every three months unless need more. I also have her email and cell number. She is very dedicated. Amazing young woman in many ways and well known for her research as well.

  • Isn't it interesting- just in the last couple days- we are hearing about the psychological effects of these meds! The anger, the" jeckell/ Hyde" personality changes. I personally, felt full- blown psychosis ( I'm exagerating ),but really, I could not stop the weird thoughts flying through my head.... No one mentions that you might just lose control of your mental faculties when you take these drugs, right? Or am I way off base here?

    Chris

  • Really thought I was the only one having these side effects, so sorry you have suffered,but I really had no idea that this was a side effect! I then went on a much lower amount,25mg down to 15 then 7.5 by injection, was ok on that very low dose until December, when humira was put forward as a solution, really do hope this remission will last as I don't want to go back on mtx,again.( it's the only med I could tolerate all the others were horrible for my stomach) !

  • Well rest assured crazy was caused by Prednisone and Pregabalin not MTX. I am able to tolerate injections without side effects. At least far less, it did make me feel flu like symptoms. The issue for me is with the Folic Acid, strangely enough. I have gene mutations which make it difficult to process it , in its pill form. It messes up calcium pathways and creates a large cell type of anemia. I think the fact that I had so many specialist at the same time. Cardiologist, Neurologist, Hematologist, Internist, Gastrointerologist....you get the picture. I dropped to 100pds and my body could not handle the onslaught of drugs. This is why I had to take charge. No one was responsible for the whole picture. I do have a fantastic team of incredible doctors but my Rheumy is the key person. I now have copies of everything sent to her and she is listed as my primary care physician. When in ER I insist that she be contacted first. She is also very open to letting me take the lead. She is confident in the quality of my research. Prior to my illness I have seven years post secondary education and in my first career I work with special needs children. I have always had an interest in genetics so am very comfortable with medical data and research in general. I also have become very skilled at negotiating our MSP . She was ok with me terminating MTX prior to our appointment. She is amazed at my ability to tolerate high inflammation , pain without drugs. She said in our first meeting that she had never encountered a patient in my condition , outside of hospital and that I was a tough little cookie. She also said she was officially gelous that I was a size 0 lol..

  • Good for you👍🏻😊Feeling in charge often makes a very big difference, even in a situation as hard as yours.

  • What tablet is humira never heard of it I think if I was in your shoes I would ask for an appointment to see your Consultant at the clinic explain to him how you feel ask him for an alternative to Mtx Chinese acapuncture thin needles into the flabby parts of your body. Your physiotherapist may be able to give you some help. If you don't ask you won't know They can only say yes or no Patches which you can have on to your body for 10 hours at a time are also an alternative Nothing will cure your RA but these alternative are not damaging your stomach.

  • Humira is a biological medication taken by injection,it targets particular aspects of RA,don't know a huge amount about it,but I was in so much pain when I was offered it & I reached the criteria for it ( it's really expensive) so nhs will only prescribe it for people who are very unwell, I was so lucky to go into remission,it's been almost 4months now, I will be seeing my rheumatology nurse on Tuesday,( she is amazing) hopefully my bloods were ok, if not, I can discuss the options with her, but have pretty much decided that I don't want mtx again, can't say I am particularly pain free,but so much better than the beginning of the year, pain is manageable with occasional paracetamol. I fee so lucky!

  • *feel!

  • Never started Humira? Yes. I was off all meds a few years back because I lost my insurance and couldn't afford it. I was symptom free for about 4 years. In Dec. 2012 I was in a car accident. The accident was horrendous but fortunately my injuries weren't too severe. 4 broken ribs and a broken nose but incredible pain throughout my body. Doctors said it would take 6 months for muscular skeletal detachment to heal but i never got better, only worse! It was then discovered that the trauma of the accident sent my RA spiraling out of control. Sorry for the rant. In short, yes it can remiss but unfortunately it will eventually return. Enjoy this reprieve while you can!!

  • I fully intend to! Just shows how fortunate we are to have our NHS,

  • I am in remission. Here's what helped me: Whatever worked, I did it ... as though it were a business: Diet, exercise, losing weight, reading books about it ... I did it ... I focused like crazy on getting better, and I didn't give up ... especially when I was afraid I'd end up bed-ridden the rest of my life. I'm still doing it -- every single day.

    I suspect there are quite a few of you out there just like me. I'm on Orencia, but am getting infusions once every seven weeks rather than every four weeks now. This time, I plan to go eight. If I still have no symptoms I plan to ask my doctor if I can take a vacation from the whole mess.

    This disease is a real education. It teaches you how to count your blessings. If I were you, I'd try going off the meds, just to see. As I said, take a vacation from the mess!

  • Hi & Thankyou, not been on any meds since January! I am trying to keep things positive, am losing weight without trying! Walking a great deal, keeping mind busy with crochet. Seeing nurse tomorrow,hopefully if bloods ok I can stay off meds, know I will be able to contact rheumy team if I need too, so all pretty good, so far.

  • It's so good. I hope you and I both stay this way. The alternative is just unspeakable. Anyway, congratulations.

  • I am on Humira every other week. Was on methotrexate made me ill off for six months no increase of flares or anything will never go back

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