Hi you guys. I should be putting this on questions side but in order that I can put another picture of Ruby for you all to admire and coo over I've decided not to.
This time I'm back on topic but in order not to appear insensitive I wanted to appeal to anyone who still hangs around this sight who has achieved full remission but still takes MTX - or else anyone who found that DMARDs gave them complete remission for a while and then everything came back - either with a vengeance or slowly crept back to haunt the joints again.
I ask this today because I've just injected my 15mg into my belly as usual for a Tuesday evening - no problems except a little trail always seems to ooze back out? do others have this I wonder? Try as I do to lose it my belly is still very fat so maybe it's just that?
I am asking this big question now because my husband and I were walking the dog the other day and he said something about doing stuff with my hands while RA permits still - and I found myself saying quite confidently "oh I'm sure it won't come back now - especially if I keep taking the drugs properly and looking after myself as I'm doing!". He stopped me and looking straight at me said "best not think that way Tilda - it will be so awful for you and for all of us if and when it does. You're usually such a realist I'm surprised at you?" And that gave me a bit of a shock.
The trouble is that although I've had the odd twinge and some morning stiffness and slightly swollen knuckles, and although I had the all over pins and needles for 3 weeks a while back (rheumy said was active RA) I've not experienced proper RA pain since June 6 months ago. I know I'm fabulously lucky and it makes me a happy bod on the whole. But each time I inject myself it feels more bizarre and unnecessary and I have to really steel myself to do it now - I am forgetting what pain is like and injecting this gold coloured liquid in a prefilled syringe which has cytotoxic in big letters on the packet and which invariably makes me feel pretty crap and hungover the next day is getting harder and harder.
So it would be really useful to get a reality check from those of you who maybe read but don't come here a lot nowadays - or just anyone who has ever been where I am and then found the RA comes rudely back to turn life upside down again one day when you had almost forgotten why you were taking the meds. And I don't mean those many of you who aren't as lucky as me and who just find the MTX or other drugs lessens the RA symptoms. I mean total wipe out of pain for over 6 months not those who still flare up once or twice a year but complete remission.
I'm asking this because as most of you will know I don't have a rheumy nurse and haven't seen my rheumy consultant since July - and won't see him now 'til March - and that's if I'm lucky or pushy (or both!). My ESR has been down at 30 for over 2 months and I'm expecting it to have remained there at my next monthly blood test on Monday morning. I am trying to wean myself off seeing my GP around blood test time because he can't answer many of my questions as he's not a specialist and its always so busy in there with people looking and sounding so genuinely ill that I don't like taking up time unnecessarily- and also don't really like being too close to sick people - it's like tempting fate somehow?
Also - last question; if on MTX and our little pup nips me and draws blood or if she licks my face or chews my fingers is there any risk to her from the toxicity in my blood I wonder? Sorry if I'm being neurotic but it's just that word cytotoxic is haunting me a bit tonight.
Photo was taken in the studio this morning - both dogs lying quietly. Next time a close up I promise!
Hi Tilda I am not currently on any meds but see my consultant next week. I have done some research on the hospital I am going to and the lead rheumatologist has published many articles and is confident that he can get some RA patients into complete remission so there is positivity out there
cris xx
Well it's great to have such an eminent rheumy Cris and I do feel this is remission of sorts so am feeling very positive on the whole. But I'm not sure if it will remain so forever or if this is very unlikely and I'll end up needing to see my rheumy once more and get my meds reviewed and increased in time - or if eventually I could just stop them altogether and be fine? It's hard expressing this sort of uncertainty when so many people on here aren't in my position but I'm guessing there might be people out there who have had this happen to them and I'm just asking so that I don't get my head too far above the parapet! If I had a rheumy nurse or a consultant who actually saw me when he said he would then I wouldn't be asking this kind of question here but I'm just so impatient by nature and six months feels like quite a long time to have been without any real clear sign of RA for?! Tilda
Tilda dear, from what I have understood over the years, RA and other auto-immune diseases will not ever go away. Symptoms can be held in check and this is considered a remission of inflammatory activity. But if Mtx, or biologics and dmards were to be discontinued, your symptoms would likely come back quite rapidly. As in Diabetes, another auto-immune disease, to stop the oral meds or the insulin, diabetes would become very rampant. So, the answer to your question is, though symptoms can be held in check while you take your meds, you cannot stop taking them. Sorry. We just have to be content with the fact there now are drugs to control this nasty, cruel disease. Enjoy your art work for as long as you can Love, Loret
Well you know I've had this since 1999 and my hands are better than they have been for ages, I've always had enough dexterity to type, sometimes needed a wrist support but mostly not. I dont know what to think about remission, if its backed up by meds then is it really remission? I think we do have to learn to live with a certain amount of uncertainty, but I do think you get used to it.
I was different to you in that it took quite a long time for me to get meds which put me back on my feet. So the whole process has been slower for me, not easy. I think you have lost less mobility than I have, which is good as its hard to fight back.
I really dont know about stopping meds altogether. You know that I am facing this possibility too, and I think that anything like that should be done very gradually.
Hope that helps. Your doggie - what a sweet thing!
My mum was on DMARDS for probably 30 years or more (hydroxychloroquine) and that whole time she was really good. Did get some twinges and some areas that perhaps were already quite damaged might have flared a bit, but generally she was really well. She had to stop them because of macular degeneration (eyesight) and the disease came back with a vengeance and within a few years it was really difficult for her, and has remained that way (as she how has other health problems and can't take anything else, and there were definitely no other options at the time she had to come off the hydroxy).
I think it is very reasonable to assume that DMARDs will continue to work for you now and continue to give you really good effect. And if they do start wearing off or not being so effective, you still have a whole arsenal of drugs (including the tnf blockers) that could be tried instead of the MTX and SSZ.
So I'd say it was quite reasonable to be optimistic, that you will never get as bad as you did before. I don't understand theories about RA being put into "remission" by drugs and being able to come off DMARDs, as I haven't met anyone who has really ever been in that position. I always believed that DMARDs only functioned as DMARDs while you continued to take them, and when you went off you were back to square 1.
I do feel rotten raining on your parade, but I never think of my RA having gone away. It's an incurable disease so it hasn't gone anywhere, so is still there and I still have an immune system that's faulty but the drugs are suppressing it from attacking me. ( Yes, there may be rare cases of palindromic RA that burns out, and so on, but I never win anything so I feel it's unlikely that I'd be one of these special cases and feel it safer for me not to think that I could be) I've had long periods with absolutely no symptoms at all, where my DAS score is low enough to qualify as being in a medically controlled remission and the dust gathers on my painkillers and NSAIDS, but things creep back for me. My goal is to manage for a year without having to change meds, or flaring. And I've never quite made it. But maybe 2013 will be the year.... If I get to that point then I'll feel confident about asking about reducing meds. But it takes so long for these drugs to work, that I don't want to risk anything until I've managed at least 12 months, as I don't think you can measure this damn disease in smaller units of time.
And as for the toxicity of your blood....you've got about 8 pints of it, so the MTX is very, very diluted. I reckon pup would have to do more than nip you once to have any effects, maybe if she turned into a werewolf on a nightly basis but a drop here or there is unlikely to do any harm at all. I would actually be more worried about the effects on you from being licked!
I love your analogy of never winning prizes Polly. I didn't either and sure I won't this time as the odds are so heavily stacked against spontaneous remission. Its just that I thought I'd have eczema and steroid creams for life too so at the back of my mind I'm probably thinking if the old eczema can clear off out of the blue - and if parents can die suddenly like mine did then perhaps RA can suddenly clear off too? That's my subconscious mind doing its dastardly stuff but rationally I know you are right of course. Tilda x
There's nothing wrong with feeling a bit paranoid, that just shows you haven't slumped into blind optimism. People with RA need to be positive and optimistic, (damb hard sometimes) as the alternative will have na adverse effect on your system. I'm a true believer that there is a link between our mind and body. After all RA is an autoimmune condition, and is usually triggered by a serious stress of some kind, to the body or mind. One can be predisposed to RA in their genetic makeup but that doesn't mean that they will get it. If you feel fine - be happy. When and if you have a flare again, contact your nurse that day and discuss the options available to you. Try not to borrow tomorrows worries today. Yes it will be tough if you get poorly again but it's not your fault if you do, so your not accountable for how that impacts on family members, that doesn't mean that you won't, as guilt is a nightmare! I think it's good your hubby said to be realistic, coz that means 'he is', At least it sounds like he's a keeper and not a runner! Regarding the jabs, if you leave them out for a couple of hours to get up to room temp from fridge, they don't sting, this enables me to leave the needle in for way past the required time, to allow total completion. I find pinching a good few inches of tummy fat on right hand side, (two inches from belly button) so skin is taught and then injecting, a good way.
Animal kisses are ok as long as you don't snog! tongues are deffo out! Coz they CAN reach, and whilst every man may be envious of this fact, it isn't good practise to follow this amazing feat with a facial for you. Anti - bac wash and spray yourself after scratches. You'll get far more comfort from your furry companions than you ever will infections, so forget about it and cuddle up, it's good for the soul and that's good for you holistically :o)
Big hugs and furry ones too xxxxx Tamsin
Hi Tilda, Good to hear that you are in DRUG INDUCED remission! When I typed in capitals I am not shouting, as I know people take it as so, but wanted to emphasise the point I am trying to make.
Like you I had been a lot better on my combination and mentioned it to my consultant when I last saw him, and asked the question was this the best I would be. His answer was that I would get flare ups from time to time but the longer I was on the treatment the better he hoped I would become. I spoke too soon as the next blood test came back with blood count very low and have had to reduce my tablets to every other day, but still inject once a week. Since this has happened I have not been so good, and am hoping the next blood test will mean my body has mended itself and I can go back to full dosage. So then I can be like you in 'drug induced' remission, once again.
Hope this makes sense, as that's the way I feel is happening to my body. Good to hear that two are becoming one in friendship, or maybe tolerance.
Hi Tilda
I really do believe that there is drug induced remission, it may not last forever but it should last for a long time and then you go to another drug and get the same remission from it. There are great leaps forward all the time, in ten years time there will be something even better on the market.
We hear on this site all the time of the problems of people diagnosed even 15 years ago there was so little to offer them besides steroids.
I like the way you think and your optimism, your husband has listened and read up on all the stuff - what a good man - and is treating the disease with trepidation. Even if you do get the intense hand pain again I think you have the knowledge and wit to know immediately what to do you know what you are dealing with and that is half the battle.
Good question/blog. there are never enough pictures of your little dog. I can just feel how soft she is.
Ahh you are all just lovely! Funnily enough I've just braved the snowy road and our very steep driveway to attend my Popmobility class. There were only 6 of us there this time and one was my Occy Health person from the council. She's really sweet. She kept looking at me in slight alarm whenever the hands and wrists were used and this was really salutary because this time last year she appeared on my doorstep and I made her a coffee and she noticed me using my arm to open the lid of the coffee pot and all sorts of new tricks I'd learned to avoid finger and wrist pain! Once again a reminder that drugs have freed me from dread of little but crucial things such as writing Xmas cards, putting hands into handbag to locate car keys, clapping, turning car key or house keys or handles etc.She asked me how my joints were bearing up and we were all holding hands and doing some strange walk in and out in a big circle so I squeezed hers quite hard and she grinned and said "wow you've come a long way?!"
My consultant said exactly the same as you Cathie re having to get used to uncertainty. I think one of the hardest things for me is having no nurse or consultant to check my joints regularly and confirm that this is drug induced remission or not. I'm assuming it is but its hard to know for sure. I know lots of people only see their doctors and nurses occasionally but I feel too new to this game still to be abandoned on drugs like this - I want confirmation from him that they are working as well as I think they are.
But as Earthwitch knows only too well this isn't going to happen anytime soon! I know our consultant explained that Hydroxy affects the eyes cumulatively so your mum's experience makes sense of what he told me about it. I'm only on 200mg now at his email instruction via the physio. I wasn't sure why i was advised to drop from 400 as i only started it in April but maybe after its kicked in they put patients down to a maintenance dose quite soon. I worry much more about the effects of MTX because its potential toxicity is far greater than Hydroxy and it does make me feel tired and crappy often too. 30 years is pretty good going although not nice to have to spend the twilight years in so much pain either. I'm hoping I pop my clogs at 73 suddenly just like both my parents and grandparents did so its only got to last for 24 years and I'll be okay!
Thanks for putting up with my neurosis everyone - what am I like? Ruby is hurtling around now chasing a ball, pooping on the doormat, getting weary but tolerant stares off Fred and generally being the life and soul of the party!
Goodnight sleep well - milky drinks all round I think. Xxx
Tilda, I wouldn't worry about my mums experience of hydroxychl too much. She was taking it in the days when they started you with much much higher doses than they ever do now, because they didn't understand it to be a DMARD where the effect would build up slowly over time. So she ended up being exposed to far more of the drug. It was also 30 or more years worth of those higher doses. There are far fewer folk now ending up with macular degeneration, so while it is still a risk, its a much less risk.
Thanks Earthwitch - the consultant explained this to me also. I think it's the combination of the two which works best for me and I'm quite lucky to be taking both although I have to say that I did my research and asked for this to happen rather than just to carry on taking higher and higher doses of MTX.
I was in drug induced remission for about 8 months last year while on enbrel, it was great, I was beginning to think I didn't even have RA at all then last september while we were on a windsurfing and cycling holiday I cut hurt my back and cut my foot on some coral and my foot got infected so I had to miss my enbrel for 2 weeks. My RA came back with a vengance very suddenly in the last few days of our holiday and when I got off the plane I could barely walk. The day after we got back it got even worse as my partners mum died very suddenly at 60 only 18 months after his dad had alos died very suddely.
The enbrel didn't make any difference when I went back on it and I ended up with rheumatoid vasculitis and my CRP was 200. Since then I have tried humira which I was allergic to then 60mg steroids which made me throw up constantly then steroid infusions which made no difference then I tried golimumab which made me worse and gave me drug induced lupus. After that I had high dose steroids again which again made me constantly sick then I tried enbrel again which didn't work. In April I had rituximab but this didn't work either and my crp hadn,t gone below 60 in over a year. My consultant decided to try steroid injection into my joints which do seem to help and I have now had 18 joints injected. At the end of october I started tociluzimab and so far it doesn't seem to be working as although my joints aren't too bad, I still get a lot of vasculitis and still take tramadol and paracetamol at least 3 times a day.
I now have quite a lot of permanent joint damage, I have severe ulnar deviation especially to my right wrist and may need surgery. My toes have all clawed and I need surgery to correct them. There is also damage to my ankles and I have developed hip problems due to walking with a limp for such a long time.
All I can say is never take it for granted and never stop taking your meds unless you absolutely have to. I hope this doesn't scare anyone who is newly diagnosed as you can achieve indefinite drug induced remission, I am just very unlucky as I have a particularly agressive type of RA and have had very stressful family bereavements which I believe contributed hugely to my flare.
I'm pleased your doing so well and I hope you do get indefinte drug induced remission. Your puppy is lovely!
I was diagnosed with sero-positive RA in October last year and have been taking MTX tabs since. At my last Rheumy appointment my consultant said I was in remission as my pain and swelling have more or less gone. I do suffer from fatigue - partly due to the MTX I think - and I also have OA in one foot which now gives me more trouble than the RA but I count myself very lucky compared to others on the site. I did have a flare after having my flu jab last month which was quite a shock mentally as I felt I was doing so well for the last six months or so, but that cleared after a week or so.
When I look at where I am now compared to last year - I'm SO much better. However, when I look at where I am now compared to two years ago I'm a VERY different person. I find this quite difficult to cope with as I used to be so active and am now relatively inactive and regularly grumpy. So although I'm in remission my life now is very different to how it used to be. I went to talk to a counsellor about this and she said I needed to stop being so stoic in trying to put on a positive face and 'grieve for the woman I used to be'. Very deep, but I can see the logic.
I do understand what you mean about questioning whether you should continue taking the drugs as I quite often feel the same but I suppose tabs are easier to deal with than injecting - could you perhaps ask if you can revert to tabs?
To me it feels a bit like the weather - when it's hot you can never imagine it ever being cold again - when there's snow, you can't imagine it ever being beach weather. So (when I've grieved for the woman I used to be....) I intend make the most of the sunshine (remission), and hide away if and when it snows again....
I'm not sure if that answers your question but is just my experience so far.
Hi Harpey. You see I used to be really overweight (obese really) and covered in painful eczema - which then vanished completely a few years before the RA started. So I'm in a much, much better place now than I've been in for many years. This is why RA didn't seem so bad to me apart from a few flares that had me screaming into my pillow with pain.
My hands have always been pained but with the eczema it was great cracks and open wounds that hurt easily as much as RA did at its worst. So I think I've come a long way and far from grieving for the woman I used to be I'm relishing the new eczema and RA free me most of the time. But then I only experienced RA for a year where the eczema was for a lifetime - which is why I'm struggling to comprehend I even have it now I believe. Anyway thanks for sharing your experience with me. X
Talk about 'speak too soon' - the day after I wrote the note above I started with a flare up in my knee and now also have an allergic rash around my neck - either drug or virus-induced... Grrrr
Oh no Harpey I'm sorry - I feel sort of responsible having started this blog about remission. Since I wrote it I have noticed that my knuckles have been getting silently and painlessly more swollen and hot and red so maybe I've tempted fate for myself too although yours sounds much worse and mine is still painless at least. Hope you're back on track again soon. Tilda x
Thanks so much for telling me this Mary. It is exactly what I need to hear really but I'm so very sorry that you've had to endure all this. Talk about learning the hard way? I wouldn't dream of dropping my meds but I just want a bit of clarification that I'm on them for a good reason because the human mind seems to have an infinite capacity for forgetting or burying memories of pain? I really do hope that you find something that works again soon. I will try to avoid coral with all my might and main - I'm sure it was a spate of traumatic and untimely bereavements that first triggered my RA too. Our puppy is wild tonight! Tilda xxx
Tilda what can i add that hasn't already been said. I am still having trouble from the side effects of all these drugs. I am heartly fed up at the moment with it all. I have oral thrush that doesn't seem to go away. I am taking nystan again. This is the second dose in as many weeks. You enjoy your spell being relative free of ra and get the most out of live that you can. I am not going to say that it will or won't come back,just take each day as it comes and IF it does come back to rain on your party you will have some lovely memories of what it was like when it went inside itself for a spell.
Love ruby and your other dog(sorry not good with names fibro fog) in the photo you put up.
Love sylvi.xxx
Other dog called Fred thanks Sylvi and Annwen. I am the kind of person who normally plans for the worst case scenario - but because I appear not to be this time you are all giving me a good dose of reality about what having a diagnosis of RA means and why I'm on these meds. Thank-you! Tilda xx
One thing I'm trying to do to deal with this remission idea is to keep a pain diary. I forget pain quite easily - anyone who's given birth will know what I mean. I might be relatively pain free, can get up from low seats more easily, but I forget early morning stiffness etc too easily. I just jot things down in a note on my phone usually before I get up.
My worst nightmare is the one outlined above, to come off meds that work and six months later need to go back and find nothing works.
My dogs say thanks Cathie although Fred does a low growl in case its disproportionate for Ruby! Yes I have said same thing elsewhere about childbirth and our capacity to forget pain once well. As Harpey says it is quite like weather too re imagining heat of Tuscany while in Orkney today! But I've got a good memory for pain if I set my mind to it - which is probably why I stopped at 3rd child who was very large for my small frame and I remember that birth pretty well still almost 16 years on! I think its more the sleepless nights with hungry restless babies I forget. Heartfelt now I'm having a taste of puppydom once more! X
hi Tilda, I've been on Methotraxate for twelve years now and can honestly say that apart from the odd twinge I have been pain free. I have started decreasing the dosage ( like you,it seemed a tad overkill when I felt so fine!) and have found the dosage that is right for me (3/4 tabs instead of the 12 that my consultant would have me take) I haven't had any more lumps and bumps and fingers haven't altered , still slightly bent but am starting to feel that my peculiar swan finger is quite endearing! I, too, live in dread that full RA might one day come back but my 77 year old mum has been on MX8 fro over twenty years and is still mobile and only has the odd bouts of pain which she can cope with......fingers crossed eh? When I was first diagnosed I thought life as I knew it was over, so, so painful but here I am, nearly 56 and as have said on this site before, still working full time as a childminder! think the answer is stay positive and live for today! X
Oh Bevlin I'm so glad I asked this question now! That's so great to learn about you and your mum! Did you go under 3/4 tablets ever and did you find symptoms returned then I wonder? How did you find out that 3/4 was your level otherwise?
Sorry but you've brought out the intensely curious woman in me! I can't try lower doses on the injections unless i go through my GP, but I did find that on 6 tablets it was starting to become active again but I couldn't take 7 tablets at all - so same dose of 15mg MTX seems to be more effective with less side effects for me. I can't risk going back to tablets yet but maybe that would be the way to go eventually. Do you still see your consultant and a rheum nurse at regular intervals or only when you need to? Tilda xx
I have been really interested reading everyone's answers to your post and I can understand how you feel about your meds and whether you really need to continue to take them.
After about 8 years of RA, I was lucky enough to have 5 years of complete remission whilst I was on Infliximab and, although I could "feel" when it was infusion time again, I felt so well that was sure RA had pretty much gone away. I regularly questioned in my own mind whether I needed to continue with the meds and felt guilty taking such a costly drug when others were struggling to get the funding for it. But, when I had an allergic reaction to the Infliximab and had to stop it, I soon realised that the remission, although very real, was completely drug induced and, without the drug, the RA was very much still there. As we all know it can be hard to find a drug combination which keeps things under control (as far as possible) and, due to the potentially unstable nature of RA, the things which help us, don't always continue to help. So I take the view these days (after 17 years of RA) that, if a med/meds seem to be helping, unless the side effects cause problems, I leave well alone (other than increasing/reducing pain meds, NSAIDS and prednisolone doses as required). Having said that, the consultant recognised that Infliximab was the reason for my remission, and suggested that I stop the Sulfasalazine which I had taken for many years. I did so without a problem and the remission continued.
Don't know if any of this is helpful, but I do understand Tilda.
It is more helpful than you can possibly know Tilly - many thanks. I am such a nincompoop where it comes to this disease and the drugs - I just can't seem to drum it into my thick skull that I do actually have RA unless it shows itself to me - and even then I come up with a whole variety of reasons why I might have swelling or may be in pain that have little to do with RA usually! I think it's partly because I've lost a lot of weight in the past 18 months and people keep saying how well I look. And because my eczema cleared off a few years ago too I kind of expect that this is the same now. And then I wonder how would I ever know if I was one of the tiny percentage who win this RA lottery? My husband said that I should just keep telling myself I've won it just by getting into drug induced remission so I'm working very hard on that principle I do promise. Also because I never know if and when I will next be seen by my rheumy from month to month - now year to year - it's tempting to just assume it must have gone away or he would want to see me? Daft I know but the human mind is a very complex thing. Tilda xx
hi Tilda, yes I got a bit complacent and lowered the dosage to two tabs of Mx8 once a week. all was okay for two weeks and then I started to get a few aches and pains, my limp came back, back was hurting etc, etc, which left me a bit miffed because I kind of thought I was cured!!!!!! still, adding one more tab a week seems to do the trick and I don't feel so sick as when I was taking more. haven't told my consultant ant that I've lowered the dose but will break it to him next time I see him, he keeps cancelling so who knows when that will be ?! on the downside my kids seem to think that RA is all a figment of my I agnation and have slowly and surely left me to do all the housework and stuff......every now and then I 'wince' in pain when lifting something to give them a little nudge.......! X
I would just like to let you know of my friends news. She was hospitalised when he ra was diagnosed some 20 years ago. However on a careful diet and taking care not to get too stressed by things she considers herself in remission and has not taken dads ever. I keep hoping that one day I will miraculously recover like she has (it's this dream that keeps me going).
Oh heck I shouldn't be seeing posts like that nottsexportfanatic - but maybe it wasn't really RA - but actually some post viral/ reactive/ septic arthritis she had and that could be why it's gone away now without drugs of course? I know this type is extremely painful because a friend of mine suffered from Reactive Arthritis (sexually transmitted he told me?) and had it for two years - was on Sulfasalazine and could barely walk but is absolutely fine again now. It usually only lasts a few months though but he said his was much longer than normal.
Nice Piccy longest remission I have every achieved is three or four months ir is always lurking in the background.
I am taking MTX 15mg by injection and for 7 months I haven't taken any pain killers or anti-inflammatory's. I previously had 3 courses of Rituximab, the last one was 18 months ago.
I saw the Rheumy in November and he told me that he thinks that I am in remission. I still get stiff in the morning but it only take about 5 minutes to get going properly. Whilst I agree with him that I am in a remission, I know that the disease hasn't gone away because I am getting the symptoms of a carpal tunnel syndrome which they think is a result of the RA.
Unfortunately despite my remission of RA, I also have OA which hasn't gone away. Hey-ho.
Exciting times in your household, Ruby looks gorgeous.
Stay well and take care
Wendy xx
Thanks Wendy. Too exciting in our household just now to be honest - dogs barking, trumpet being practiced and the opening night of the local drama club's Christmas production in which our middle son plays Ariel Robby the Robot in Return to the Forbidden Planet. Barking nuts is how I would describe life just now but good too!
Yes I too get stiffness and a weird ache in the knuckles but underneath in the palms. I have OA in my hands too and I think it must be this because it feels different to the RA pain of old. Two of my knuckles are permanently a bit swollen especially last thing at night and first thing in the morning and my hands won't fully clench still but really that is it which is pretty brilliant I think, I hope you carry on with your drug induced remission too. The comments here have helped me loads. Tilda xxx
Tilda, I was on 400 of Hydroxy for years with my Dr, then he retired & my new Dr decreased my dose to 200-he said because 400 was way too much with me being so low weight. In retrospect though, it wasn't until after I went down on the hydroxy that my hands started to deform. My arthritis (mostly) is just in my hands & feet though, so sometimes I think that all the pain that I should be feeling in other joints is just funneled straight to my hands.
I have had several years of feeling great but I never quit taking my meds because I remember how it hurts when it flares or when I skip a couple of days of meds. I never want to feel that bad again & if taking the meds helps with that, I'll take them-gladly.
Christine
Thanks Christine and Loret. Don't worry I wasn't even thinking of stopping taking the meds. I'm far too scared of this disease. I just wanted to see if anyone has stopped for other reasons (side effects or other complications) and found that their remission has continued. But the stories show here that the opposite is almost always the case it seems. I take Levothyroxine for my underactive thyroid and I know that is for life because the GP explained it to me 12 years ago when it first came to light. But this is to replace a substance that the body is supposed to make naturally - same goes for insulin. Rather different to taking a cytotoxic chimo drug and an anti- malarial for life?
That is really interesting about the Hydroxy Christina. It is often suggested that this drug is the least effective DMARD but I am not sure this is the case despite the others being potentially much more toxic. You are saying the same as Earthwitch re her mum really - that its a really effective DMARD for some. I too found that my RA continued despite mtx until the Hydroxy was introduced and started to work. And my instincts say that it is the combination of both drugs that works best for me. Tilda x
Hi Tilda,
I read your blog and didn't want to know the replies!! was quite happy in my blissful 'induced remission' with my head in the sand but your question, it's always there lurking, then I plucked up the courage and ever so glad I did!!
More positive than I hoped for!
Thanks Tilda xx
Ha ha I did think of you most of all when I was writing it Williby! I guess, although you were much worse off than me to begin with and for you its been Enbrel and MTX - the issues are almost the same but unfortunately I'm terrible at hiding head in sand and like to know what's going on and whereabouts its happening. If I could jump in a future time capsule I undoubtedly would although I would probably regret it terribly if I did find out what was in store for me and mine. I'm just too curious and you know what happened to the cat...?! But seriously I've been kind of heartened by the responses too.
This morning we were in town for a meeting and my husband looked at my right hand and commented that two of my knuckles are swollen. I said they always are but it doesn't hurt - just a vague throb sometimes. He put his hand over then and said they are red and very hot. I shrugged and said as long as they don't hurt I won't worry but he said he thought inflammation was the enemy? So I do sometimes go into ostrich mode too Williby! He is usually much better at hiding head than I am so think there must be some role reversal going on here these days? TTx
in reply to
Hi Tilda, it's funny as it was the question I always wanted to know but never had the courage to ask jumping into the future, well in my 'future' there is a cure not to mention a lottery win and the ageing process reversed, I'll look in the mirror and will have glowing skin and all the bits in the right places lol!!!!
your Husband does sound very sweet and caring, hope your having a good day xx
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Injectable MTX - the bad taste is back - do others get this at all?
Can I decide what treatment I have?
Does anyone have any experience of requesting a change back from Benepali to Enbrel?
RA and fibromyalgia 
Excruciating wrist pain
