RA - anti-tnf Enbrel, Methatraxate, Rutuximab advise please!

cornishman

Dear Forum

I am having the worst time of it lately, after 4 yrs since diagnosed with RA and with good success on TNF treatment Enbrel (Etanercept) for the most part I am suffering a big flare up. Last 3 months I have had the roughest time as the Enbrel has been much less effective and almost ceased working for me and I have reached a dark place in my life again, the monster has again broken down my door and my defences seem unable to cope! I cannot work currently, have no income, am depressed and feel helpless to the power it holds over me, I spend a lot of time in my safe place of lying horizontal, taking the pressure off my inflammed feet as I have trouble walking and standing...some of you know that feeling I am sure? I have tried changing meds to Cimzia (anti-tnf) with no success and have been offered MabThera (rutuximab) but am very scared of this drug as it has actually killed some patients with a JC Virus side effect (very rare though I must add). I am about to go back to the Enbrel as it has worked in the past but am going to add Methatraxate meto-ject pens (rather than tabs) as it can be more effective I have been told. If anybody has experience on this combo it would be good to talk to you...also anybody that has experience of Rutaximab (mabthera) after Enbrel has stopped working for them (like me) would be good to hear from too. My current RA flare is a 'systemic' flare up that is affecting my entire system, I can feel it pulsing threw my body like and gives me the electrical type charges of pain, it feels like flu and of course hurts like hell....I am taking Predisolone steroids currently to keep the wolf from the door but its not a long term option..I am only 45 yrs old.

Hoping we all have a pain free day today...all the best for you
Kind Regards, Cornish Dave

dreamdaisy

Oh dear, been there, done that. Enbrel is pants as far as I am concerned as it tried to explode my liver and I ended up with three months of nothing. After a break I moved onto injected meth and then injected humira was added and so far, so good. It hasn't touched the pain, it hasn't stopped it spreading, I haven't ditched the crutches, I haven't reduced the pain killers but hey! My inflammatory markers are only 1 and 2 so you should flaming well be grateful, Daisy.

These meds are not all they are cracked up to be. I have yet to find a rheumatologist who is on them yet they sit there extolling their virtues like well-informed reps. There are a couple of bods on rituximab but it is a very slow-acting drug as it works in a different way to the other anti TNFs etc. All of these meds have nasty side effects and who's to say that those who pegged it wouldn't have done anyway? One of the points of the constant monitoring is to pick up any problems nice and early, so I have always been rigorous about doing the bloods or reporting any possible difficulties. I did so just yesterday and ended up spending just over two hours being tested for stuff.

If you have had success with enbrel before then hopefully re-starting it but with the meth in a different format may be all you need. Liquid meth is more powerful than tablet meth so you can have a lesser dose but with possibly more beneficial effect so let's hope that does the trick for you. The best of luck, let us know how you get on. DD

julie47

cornish dave

I am sorry I can not help with the anti tnfs but I just wanted to pop in to say I hope the next lot of meds you try work for you.

Take care
Juliepf x

stickywicket

I’ve not had Enbrel or Rituximab as I’m currently finding methotrexate works for me with no side effects. I can, however, relate to the despair which engulfs us all at times when nothing seems to work and life seem to consist of nothing but pain and fear. We all get these times, Cornishman. They come and, luckily, they go again as we hit on the right combination of meds. This won’t be the right combo for everyone but that’s how things are. Complex, not simple. Trial and error mostly.

I would urge you to do whatever you can to try to distance yourself from the pain. Music, books, crosswords, computer games, TV – anything in which you can ‘lose’ yourself and demands so much attention that it distracts you from the pain. Very gentle exercise may help. I hope you find that winning combination soon.

Ankyspond

Hi,

I have been on Enbrel since last November its brill for my back and hips but not for my perifial joints so now back on Methotrexte as well, only two weeks into the combination but ok so far but early days. I have not had any problems with Enbrel and I know each med is different for each person. In shorts its about taking what help you can to make your life easier.

I too am in my 40's, 43 to be exact although some days feel like 143! I have AS and being xrayed tomorrow to see if OA in my knees and it does seem like a rollercoaster at times but we have to keep smiling and using the forum to get the support thats is so important to us all.

I really hope you get sorted soon, keep in touch. xx

cornishman

Thanks for all you kind comments and support...it makes a world of difference to know other people with the same of worse condition of pain than me exist, sometimes I feel so isolated and alone with it I don't know where to turn. To think this time last year I was able to play Golf over 18 holes and hit the ball 250 yards and play for 3 hrs with no repercussions the next day! What a difference a year makes eh!

It feels lately I have been pushed over the abyss and I am in free fall....I do not know where the bottom is or when the fall will end. I must not go into meltdown but I am one of those types...angry, why me and depressed I cannot get on with my life.

Thanks everyone that replied to me...this forum is my lifeline right now. Cornishman x

Ankyspond

cornishman wrote:

Thanks for all you kind comments and support...it makes a world of difference to know other people with the same of worse condition of pain than me exist, sometimes I feel so isolated and alone with it I don't know where to turn. To think this time last year I was able to play Golf over 18 holes and hit the ball 250 yards and play for 3 hrs with no repercussions the next day! What a difference a year makes eh!

It feels lately I have been pushed over the abyss and I am in free fall....I do not know where the bottom is or when the fall will end. I must not go into meltdown but I am one of those types...angry, why me and depressed I cannot get on with my life.

Thanks everyone that replied to me...this forum is my lifeline right now. Cornishman x

Dear Cornishman,

Be in the knowledge that every one of us feels like you either now or have in the past, we all have things we can no longer do, we all have things we wish we could do. With this disease you have to make compromises for me I had to give wearing heels up, dancing so much, shopping as much the list is endless Cornishman and just a night out for a meal can be a big deal now but you have to try and swim, don't sink because then the disease has won and don't give it that satisfaction. Although I have great family and friends I feel isolated as well because they don't always know what you are going through. Change the things you do to make them easier, stay in touch with people, know its unfair but if you can't play golf anymore go and have lunch up there with your friends!

The abyss you talk about it acceptance, now that is something that can take weeks, months, years I have been diagnosed for nearly four years and still don't think I have accepted it. I sometimes get angry and think why me it takes so much energy to stay angry its really not worth it. Hopefully when they get your meds sorted things will become much easier for you, they may have to try different meds until they get the right one for you. To be honest it will never go away, it might get worse or you may get no worse than you are now, you will have up days and down days but you have to do whatever you can to have the best quality of life you can now. Unfortunatley there are no straight answers with Arthritis only frusteration! I have only been using this forum for a couple of months and find it a fantastic support, please keep in touch. xx

dreamdaisy

Arthritis is isolating. It saps our energy, it saps our strength, it saps our mental and emotional resources while giving precious little in return. It plays with us by giving us better or even good days, then snaps and snarls and bites at us again. We are all on a rollercoaster of dross, we slowly climb up then rapidly drop again. It's not easy but you are amongst those who understand what life is like.

It has been mentioned to me that my reply to you was too negative: I do have an awful habit of being truthful about the meds and what I think of them but I do apologise for the negativity I showed. I am sure the 'new' combo of enbrel and in jected meth will be helpful but if not don't be afraid to try the rituximab. I wish you well. DD

stickywicket

I think anger and depression are perfectly rational reactions to being suddenly hit by this disease. When I was diagnosed I was fortunate enough to be too young and too short-sighted to realise what lay ahead. I think the combination saved me from a great deal of anger and depression.

I have a golfing husband, one cricketing (and golfing) son and another badminton/squash playing son and I can’t imagine how devastated they would feel if they were to develop this disease. If sport and fitness are your thing, swimming is supposed to be an excellent exercise for arthritics. I took up horseriding (RDA) after two knee replacements and one hip. I was pretty rubbish at it but that didn’t stop me loving it.

Once you are stabilised again on meds which suit you, you can start to think about the way ahead. Look forwards, not backwards. The more you can learn to change and adapt, the easier the ride will be. There was a long thread on ‘Acceptance’ a month or two back. I’ll bump it up for you. It does start out with a lot of girly stuff on shoes but widens out a lot. I hope you’ll soon feel a bit easier in yourself.

skezier

Hi Dave,

sorry for the late rival here

I don't ko much about the anti's cus I can't get funding no matter how much I fail on the mtx

Like Sticky i was also young and its easier then... You have had a huge shock, a let down the drugs haven't done the job and we have had yet anther lousy summer and none of it helps.

The thread Sticky has bumped up on acceptance is a good one and it will show you that how your feeling is a totally understandable and rational thing. We all go through so many emotions and all i can promise you is once you are stabilized it will be better.

Are you under T or D? for your hospital? Do they know how you really feel? Its hard to open up to the rumo's but they are good at understanding you as a whole person and its helpful to tell them just how its effecting you, even if its just as a pressure release.... i know its hard to just let it all out but it might help therm get a move on f your did?

There is the helpline here you could ring as well. I reckon thats been said already but they are good at helping or directing you to help as well.

Dave we all know where your coming from and the forum is so good at helping just by being kind some of the time.

Its going to be alright once your stabilized and take it one day at a time boy cus anything else gets scary at times. Hang in there and we got to get some sum soon A cyber ((( ))) and a hope its a better day today. Cris x

frogmorton

Oh you poor man :sad:

I am so so sorry :sad: what an awful place to find yourself.

I am not so far down the road as you and am pretty well on just hydroxy and colchicine, but l well-remember the pain and still experience it now from time to time. When it was sustained l did nothing but cry :sad:

You have had a rough time of it with the enbrel not working so well i hope it together with the MTX jabs will help stave the worst of it off.

I know you are well aware how dangerous it is to feel so ill and how easy it would be to fall too far...we are here for you always and will do our best to keep your spirits up if we can.

Keep posting

HUGS

Toni xx

PS l have used teh helpline in the past too????maybe worth a try?

Colin1

Hi Dave
Been in and out of that dark place for some years now.
Tried all the anti TNFs made me so ill spent lots of time in hospital trying to get arther under controle. its hard work and hard to cope at times but you will get through it. I have a bad time with methotrexate althogh still on it as most of the drugs require you to continue with the MTX i have been on rituximab for 2 years now just had my second lot of this years. I had all the same thoughts as you regarding the rituximab but i have just gone through the best year i have had since i can remember. Its not the be all and end all and i dread the day it stops working on me but it is GOOD. Talk more to your consultant or Rheumy nurse.
Colin

dreamdaisy

Morning cornishman, how are you today? I hope you are feeling a little better/brighter. DD

cornishman

Dear kind people...you are all amazing and I have really appreciated your kind advice and thoughts...thank you! Yesterday was a better day for me, I got some stuff done and had lunch with my folks, my pain was bearable and I could walk into town easily. I found some mental therapy by playing my new Accordian which sounded lovely! Yes it was a good day!

Today I woke up feeling OK, usually the Predisolone steroids keep me going to 10am and then drops me over the edge until the next dose kicks in later ....my wife kindly massaged my poor knees and feet with special Ayurvedic oil for Arthritris and live was worth it! I ate a healthy breakfast packed with Omega 3 and fruit, popped a couple anti-inflamm tabs and hoped for the best! 15 mins later I found myself in bed taking 'the load off' my legs and with my hands/fingers getting sore and cramping up. I spent an hour there in meditation but wondering what kind of day this might be?

Yes...life is a rollercoaster when you have this disease and I really hate those things! Its a selfish comfort to think... that I am not the only one going threw these storms, they feel like they rip away at the very core of who oneself is or was... at the new identity and personality of who you were and what you are becoming! Its scary when you mind drifts into negative or just too many thoughts and scenarios, sadly I seem to have plenty of time lately to reflect and worry!

Next week I start the Enbrel again (better the devil you know) and will probably add the Meth in a couple weeks when i get it. I have changed my diet to boost my immune system... no refined or processed foods at home, only organic chicken and fish eat and plus omega supps., fruit, nuts and green juices as often as poss and plenty of salad. Already after a week on this diet my energy has increased and improved and I have less fatigue. The pain remains for now! I am great believer in Ayurdevic medicine using herbs/whole and raw foods/massage/exercise to energise and and heal/help the immune system..its something 'I' can do to help myself and it tastes good..I know my body appreciates it!

I wish you all kind people a comfortable and warm pleasant day, and hope to speak soon. All the best, Cornish Dave

dreamdaisy

I am very glad to hear you are feeling brighter today, we all see-saw like mad with this dross. I am a little concerned, however, about the immune system measures you are taking: it sounds like a good idea but as your disease is caused by an over-active immune system it may not be. The enbrel and meth 'work' by suppressing the immune system, to stop the arthritis firing up, so I would advise you to talk things over with your rheumatologist as there is a possibility you could be counter-acting the meds. It is true though that we are all different in how we react to the meds and other stuff. I wish you well. DD

cornishman

Good morning Dream Daisy,

Thanks for you response, firstly I hope your appointment went well...yesterday was it, you had so many friends in your pocket how could it have not? I read your blog.

The point you mentioned about our immune systems i.e. modern drugs vs natural foods for disease (immune boosting type foods) is a good one and of course far too complex beyond my simple food and nutrition cert! I admit I am only learning to understand anti-inflammatory foods and herbs (tumeric, flaxseed etc) more than anything and it is work in process. If inflammation is causing of pain, which for me it is...then it makes sense for me to avoid inflammatory foods like all refined and processed stuff and only try to eat whole and raw foods that provide all the essential minerals etc any body needs to survive and perform all the duities required!

However, that said...I cannot live without my store bought coconut macaroons (crimbles). Yess...I meet with my consultant in the next 10 days so I will mention how I can help me myself with a diet that works without 'turning up the fire'

My God its a web of decisions all the time isn't it? Bye for now, Cornish Dave

dreamdaisy

I spent months eating huge quantities of celery, beetroot, ginger and a few other bits and pieces. This was before I was diagnosed with an inflammatory arthritis and I was under the 'care' of a homeopath (see how desperate I was?) I watched my left knee get fatter and fatter and fatter.

I have had an over-active immune system all my life, kicking of with severe eczema. Being a small child in the early 60s nothing was known as such about allergies so my mum fed me all the 'good' foods which were, in fact, mostly stuff I was allergic to - dairy and fruit. She inadvertently put us both through hell! Then the asthma kicked in aged seven, and yet again things that shouldn't harm one did. Hugely. The PA I have (psoriatic arthritis) is the next natural progression from all of that and I have made some remarkable dietary discoveries since the anti TNF treatments viz. dairy is nothing special and fruit is rubbish. It has been wonderful not to react to foods and pollens etc, but the arthritis has continued despite the suppression (probably because I was given the treatments far too late to make a difference.) Now I have OA too - I reckon that is thanks to the PA joint damage.

Diet may help with OA but again the jury is out on that. I can't see it myself but having spent many years on diets to help allergies that doesn't surprise me.

I hope your spirits remain lifted for the next few days. Mine have sunk a little after yesterday's appointment. Knowing I have at least another 2.5 years of this dross is not an encouraging thing. Ho-hum. DD

stickywicket

Hi Cornish Dave,

For all your aches, pains and stiffness, you sound a little bit brighter today. I hope so but there’s never any need to try to sound it on here. It’s just a refuge where you can tell it like it is.

Your identity and personality will remain the same in all this. You’ll just become mentally and emotionally stronger as a result of all the rubbish you’ve learnt to deal with.

It’s a quite scarey fact that we auto-immune types don’t want our immune systems firing on all cylinders. However, we do need other bits of us functioning well and a healthy diet has to be a good thing on several fronts. Ditto the massage and exercise. The added supplements might be a step too far. Worth checking it all out with your rheumatologist. Also Arthritis Care have booklets on ‘diet’ & ‘exercise’ if you go to ‘publications’ at the top of the page.

Hope you have a good weekend.

peterpie

Hi all,

I am a newbie to this site, but have had arthritis for 25+ years (reactive / inflammatory). During this time I have been given several different diagnosis / prognosis of my condition, resulting in lots of different types of medication and surgery......!!!!!!

I had and still have a lot of faith in the Anti TNF medication that I have been taking (Humira for 6 months / and now Enbrel), but I am getting a lot of 'naughty' side effects from them (fatigue / nausea / reflux), and the tablets the doctor gives me to counter them all seem to have the same 'side effects' i.e. need to sleep loads........

Am l alone in this? or is it common as l am still trying to keep down a job, but feel l may lose it soon........

dreamdaisy

Hi peterpie, I answered you on the other forum - I am glad you have found this one as many more people hang about on here. I can assure you that you are not alone with the side-effects and the impact of this rubbish on life. DD