Loosing hope: Sorry for the long post but I am loosing... - NRAS


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Loosing hope

994464 profile image

Sorry for the long post but I am loosing hope big time .....I have had rheumatoid arthritis since I was 19 I am now 35 and it was always quiet manageable until I gave gave birth once 8 years again and again 2 years ago ........ after I had my daughter 8 years ago I had a very bad time and biological drugs were added into my treatment alongside methotrexate. Enbrel was a miracle drug for me and for 7 years my arthritis was in remission.....I became pregnant again in 2019 and was required to come off my enbrel for the third trimester of my pregnancy ....All was going well but after giving birth to my son history repeated itself and I had a major flare ....I was put straight back on my enbrel injection and a course of steroids to control the flare all was going well until 2 months later I began to have pins and needles in my feet that kept progressing and eventually led to me becoming paralyzed .....I was hospitalized and eventually diagnosed with Guillian Barre syndrome.... Now there I was paralyzed in the thick of the covid pandemic and unable to see my beautiful babies. it was the toughest time in my life ,I was facing the fight of my life all alone but to cut a long story short I learned how to walk again and was back home after 5 months ❤️the doctors are not sure how I got gbs but they THINK enbrel may have played a role in it so I am never allowed on any anti Tnfs ever again......I have been home just over a year now and I have had flare after flare after flare I have tried three new biologics the most current one being roactemra which is doing nothing only making me fat I have been on and off steroids for a full year now and I just can't take anymore .....my mental health is really beginning to suffer badly....are any of yous on any other non anti Tnfs drugs that have worked for yous.. I can't take this daily pain and swelling anymore I am a mother of two young children and just want to pain free and happy again for them if nothing else thanks for the taking the time to read

42 Replies

You have been through the mill! Well done for battling through and it's not surprising that you feel despondent about finding the right treatment for you. Have you looked at the NRAS treatment pages for an overview of all the various treatments available? And new ones are coming out all the time.

I'm sure others will be along shortly with more experience of biological treatments soon and many people have had a long struggle to find the right one for them.

Keep fighting! And keep on asking for help too.

994464 profile image
994464 in reply to oldtimer

Thank you for your reply I will have a look through that page I have never heard of it before hopefully I find something there to give me hope again

Madmusiclover profile image
Madmusiclover in reply to 994464

nras.org.uk/resource/jak-in... might help.

Evie3 profile image
Evie3 in reply to 994464

Wow…u have certainly been thro the mill and back. Hope your RA team have a helpline and u can get support from them. In my hospital I have only bern able to talk on the phone with the nurse for the last 18months… the Rheumatologist has disappeared 🤷‍♀️🤷‍♀️. NRAS has a helpline too. There r do many new meds out there…I hope they find one soon that works for you . Take care

madme1 profile image
madme1 in reply to oldtimer

I've never heard of that page either, we're is it please.

I’m so sorry this really is a tragic story. How much you have suffered.

I was on elerzi/ etanercept and on my very first injection I got burning pins and needles from knees down. Told to continue. Every injection caused these same symptoms but started to get worse and more prolonged involving my hands as well . I reported these symptoms constantly but as we were in lockdown and all staff deployed no one helped me . Eventually taken off elerzi symptoms stopped but I now have permanent nerve damage in my feet. Your story makes me think but for of the grace God…

I’m now on Baricitinib ( Jak inhibitor ) no side effects and things much improved. I hope you find the drug for you x

994464 profile image
994464 in reply to J1707

Thank you for your reply I will look into baricitinib .....I also have permanent nerve damage in my feet from my gbs episode it's so hard for us we have enough to deal with already with the rheumatoid arthritis and I feel nobody knows how serious it is. They just hear arthritis and think sore bones😰 they dont realize how damaging this illness is and how many side effects there are to it aswell as the drugs to treat it .....it's so very tiring ....I'm glad you have found something that is working for you

J1707 profile image
J1707 in reply to 994464

Oh yeah I get that … I’ve got arthritis in my little finger .. one day I will poke someone in the eye.. now I say rheumatoid disease seams to work . X

Madmusiclover profile image
Madmusiclover in reply to 994464

I’m on Baricitinib. It’s good. There are other JAKs too and more coming into the market all the time. I’m so sorry for your troubles. Please mention JAKs to your rheumy. Good luck.

Deeb1764 profile image
Deeb1764 in reply to 994464

I am on it too andit has been the only drugy body can cope with. Factor in Fibro which has been the new nightmare I now need to find a drug for this. Re weight I was on high steroids last year and got the moon face etc, I startd WW about 12weeks ago an dlost 28-30lb so far. Its a slow road but it was something I needed to do for me as I am feeling lost under the weight of RA OA and Fibro x

scorpiojack profile image
scorpiojack in reply to 994464

Hi hang in there, there are lots of other drugs to try. I have had to try quite a few as they have seemed to only work for about 6 months. I had really good success on Rituximab which i had through infusion once a year, then Covid hit and I couldnt go to hospital to sit and have my drip. Im now on baricitinib for nearly a year now and I feel great, no pain or fatigue. Im a cyclist and hill walker and can do both no problem and keep very fit. Please tell your Gp/consultant/anyone that will listen and try other drugs available to you as something is not working for you. Hope you get some relief and a solution soon. x

Debsw_nras profile image

Hi I am really sorry to hear you are going through this. If you need to someone to talk to the NRAS helpline is there on 0800 2987650.There is other medication you might be able to take, our Medicines in RA booklet covers all the medication that is available for RA, order free nras.org.uk/product/medicin...

I have had JIA nearly all my life and like RA it is misunderstood. I am bringing up two children and when you are flaring it makes parenting extra hard. Make sure you are looking after yourself, again easier said than done! Do you have support close by? As I said please do call the NRAS helpline, you are not alone with this. Take care. Debbie

I cant even imagine what you've gone through, I was away from my children for 5 days when I was in hospital with pneumonia so you must have been beside yourself . So so glad you got yourself through this but even that alone without the RA would have left a mark on you mentally and its scary isn't it..

There are other biologics as you know out there which aren't anti- tnf, I would do some research into which ones they are and find some relief in knowing there are a list of ones to try.

It's absolutely cruel how with all drugs for inflammatory arthritis they don't work straight away and we have to wait, SO frustrating.

Dont beat yourself up, be kind to yourself don't worry about the weight that will go when you find your drug, mentally we can be cruel to ourselves and if you think about it you are amazing, you've made these 2 beautiful children when you've had the difficulty of RA to contend with. You maybe closer than what you think to feeling better.

Plus come here and just let it all out, we understand xx

It's so unfair isn't it. Please don't lose hope.

I just wanted to send gentle hugs and to say keep going and keep researching to see what could suit you and discuss with your rheumy and also as has been suggested, phone NRAS helpline as they are lovely and calm and friendly and really do help. Yes I’ve been on a biologic other than anti TNFs and it got rid of all inflammation and gave me excellent mobility and hope you can find one soon. Enbrel worked great for you for many years before so no reason to think something else won’t. 🙏🏻 💗xx

I'm so sorry to hear your story.I've known 2 people who have had gbs, one a close friend, many years later she has little residual symptoms, but it did take a while for everything to settle.

Having had many failed meds, I'm now on an unusual combination which is working for me....leflunomide (traditional DMARD) at a half dose and toficitinib (JAK inhibitor). Baricitinib which is similar to toficitinib didn't do it for me, but the change to toficitinib worked well. The improvements were slow and often difficult to acknowledge, but looking back over the year since I started on this combination, there most definitely has been a marked improvement.

So keep going, keep asking for better...it might take a while, but it will come.

Best wishes to you.

So sorry to hear that you have suffered so much and for many years. Please don't give up hope. I feel sure there will be a drug to suit you and bring you relief; there are many now and new ones coming very soon too. Do contact NRAS for some help and keep in touch with us if you find it helps you. Good luck x

Well done for your getting through so much!

New JAK inhibitor out by RINVOQ. Pronounced rin-voke. medicines.org.uk/emc/produc...

I should be starting it around autumn if RA flares. I really hope your life can be reclaimed. Your courage is amazing. 💐

Knit12 profile image
Knit12 in reply to charisma

I’m about to start Rinvoq. My 10th drug in 2 years so I’m hoping this is my miracle drug

charisma profile image
charisma in reply to Knit12

Something has to work unless it’s not RA? Best of luck. 💐

Gracie2019 profile image
Gracie2019 in reply to charisma

I am in the U. S. I have had RA for 6 years and ran through the gamut of various DMards and drugs such as Humira, all with wretched side effects.

I am now taking Rinvoq. I have been taking it for the past year, and thus far, it has been my miracle drug. No noticeable side effects. I am functioning most days at a near normal level.

Wishing for every one a better day today and the best help for your RA journey.

charisma profile image
charisma in reply to Gracie2019

Very encouraging for you and others starting it. I’m fed up with being so vulnerable to all infections; drug infusions of Truxima (Rituximab) are not so good in that respect. At least RINVOQ is a daily tablet and can be halted at signs of infection. 💐

You have done so well coping with all this, no wonder you are asking for help. There are many options to anti tnfs, the important step is to make sure that your rheumatologist /rheumatology nurse realise how low you are, and urgently look for the best drug for you.

Why don't you email them or write, telling them just what you have told us. Also contact your gp.

You should not be left in this place, you've shouted out to us, now do the same with them. My favourite saying is that the squeaky wheel gets oiled first. Unfortunately, that's true, especially at the moment. So sqeak!!!

You need proper care, it's your right. Do keep in touch. Good luck!!

Thank you for your reply ❤️I have been on the phone to them twice since yesterday telling them that I'm at my wits end and I want to come off this injection .. Got a phone call back from them telling me to up my methotrexate in the next couple of weeks with the end goal to move onto the injection form to which I replied I was on the injection form before and I didn't tolerate it very well 😡 I also asked if I do carry out these actions will I eventually come down off roactemra and her response was NO .......I am normally so calm but I have to say I did get angry talk about not being listened to ....time to look into a more natural treatment Im so fed up now

Mmrr profile image
Mmrr in reply to 994464

Writing a letter or email with your concerns to your rheumatology department about your health and medication may get a response that phone calls don't.

Best wishes

bienassis profile image
bienassis in reply to 994464

Follow Mmrr's advice and write to the consultant - copy your GP and also the manager of the department (all departments have managers) - phone calls are forgotten as soon as you put down the phone.

Hold on there, you rightly have a lot to expect from them (as they know).

Good Luck.

bienassis x

Hi 994464. You have been a real warrior and I take my hat off to you. You must have real determination to come through guillian barre syndrome because there it's quite rare I believe and little known about it. I think you have been treated quite dismissively by the rheumatology nurse/doctor. There are other non tnf biologic treatments aside from tocilizumab. I was on tocilizumab for about 4 months and I was so ill during that time feeling like it was making things worse rather than better. My muscles really ached to the point where I couldn't lift my arms or move my shoulders and couldn't stand it anymore. My rheumatologist listened and even though my blood results were excellent he said he would stop it. I was then given Abatacept ( non tnf) and within 3 weeks I felt so much better. Muscle pains diminished then subsided altogether. The tocilizumab is doing nothing for you so I don't see why they would want you to continue. You are already taking methotrexate and it's not doing the job. Keep on at them and say you want to try something else. NRAS may be able to help you with this. Please try the NRAS helpline. You have suffered long enough and you need someone to really help you out of this viscous cycle.

You are amazing to keep going. I have 2 young children too. It is hard work when you are dealing with joint pain among other things.

I have nerve damage in my ankle from Cimzia. I developed a weak right leg, dizziness and tingling on my scalp. I had to push to stop Cimzia and the symptoms did go away apart from some loss of sensation in my ankle, and tingling that remains.

I was in a similar position to you for years, on and off steroids and putting on weight. Thankfully, I am now on methotrexate and Orencia, stopped steroids and am even running again! Please know that it can get better. Thinking of you.

I just want to come and hug you. You have had and are still having the most terrible time. You have been selfless in having your children and I applaud you for your courage. It is so cruel that you have since had to deal with such awful problems. Can I suggest that you ask your GP to refer you for some counselling. This a lot for you to deal with on your own. You need to be supported whilst you are sorting out your medication. Please don't try to deal with this all alone. Ring your GP today. Sending love and encouragement. x

Do you have someone who can support you with the children whilst you get the support you need? Are your medical team fully aware of your personal circumstances, if not, tell them that you need more help than you are currently receiving. I know things are different now, but when I was pregnant with my first child (1993) the midwife offered help at home which I declined, but looking back, maybe I should have accepted. Ask what help is available for yourself and the children as your current situation is not sustainable. If it's easier for you than telling them face to face, write a letter to your GP and Rheumatologist spelling it out to them. Good luck.

Hi 994464, please do not lose hope. A positive mind will help your recovery. Sending you hugs.

Ask about the JAKs and also cimzia (name in the states). cimzia.com/rheumatoid-arthr.... This isn’t for right now, but perhaps it will give you something for the coming years? Dr. Anita Kass is developing a drug that targets the hormone issue you’re dealing with. It will be a major RA breakthrough. And they are 1-2 years out from using bio electric devices that target the vagus nerve and are for people who failed biologics and TNFs. Anita Kass: m.youtube.com/watch?v=D21nT... Vagus (just one of many articles): creakyjoints.org/treatment/...

I also will suggest you to contact Gp for some therapy for your mental health beside some other new medicine .You will definitely get positive response and soon will feel better too.

You have received so much good advice already. So I just want to send hugs and good wishes!🤗🤗🤞

So sorry to hear your story. I am now on baricitinib I had the moon face with prednisone and leflunamide. Things have calmed down but I can only walk with a stick and need a break every few meters. But don’t give up life is for fighting so get out and cause a ruck

You are AMAZING. What a trooper to have gone through all that with your beautiful children as well. Please don’t give up hope. You have all the support of everyone here and as previously said, there are lots of other drugs to try. It’s awful you’ve had to go through so much but be assured , there is something out there that will suit you and give you back some form of normality .keep pushing for the care that you need and deserve. It’s a long journey I know but there is light at the end of the tunnel. Keep strong hun 🤗

I can't imagine the suffering you've been through and can only wish you more luck and good health for the future, I won't pretend to know about some of your illnesses but I have some experience of RA, I'm doing well now but have had some dark days in the past like having a bad flare up and ending up in hospital with a heart attack, brought on I believe by RA, but the point of my post is I was put on Enbrel and it changed my life for the good and 12 years after the heart attack I'm living a very very active life, and my thoughts are have the consultant's got it right about your Enbrel, I'm an old synic and after being a RA sufferer for 30 years and now in remission for 2 years I've learnt the ropes as to speak, and realised a few years ago that health authorities love to take people off Enbrel purely because of the cost, Pfizer's Enbrel patent in Europe ran out in 2016 which allowed copycat biological medication to come on to the market, in my opinion inferior to Enbrel, many RA suffers on here were switched I remember all the messages about it on this forum , so I would ask your consultant how sure he is of the probability Enbrel is the cause, and I personally wouldn't be afraid to contact Pfizer and ask them but that's me, you can probably tell how much I rate Enbrel, I hope you get better and wish you all the best for the future.

994464 profile image
994464 in reply to Pitbull2017

I would have been the same as you I rated enbrel so much as well it was a life changer for me but my rheumatologist has done lots of research and is positive I should never go on anti Tnfs again although my neurologist who I have been dealing with since my guillian barre Syndrome says she doesn't see why I shouldn't be on it so you are right I need to look into it more and make my own decisions when I have enough information ....thank you

Thanks to each and everyone of yous for your very informative and caring replies. I have plenty to think about and look into with all the information yous have given me . It really is such a rollercoaster having RA and it's great to talk to people who understand what I am going through. One final question for you all have any of yous ever considered taking CBD oil or thc to help control this disease ??? It's something I am thinking strongly about I have sourced someone who has given me so much information on it all and I believe it will help a number of things that I am suffering with including my anxiety and mental health

Hello, I'm not a mother, have only had arthritis for about a year and whilst the pain has reduced me too screaming some days only take methotrexate, folic acid and painkillers if I need them. As mentioned by others, look at the NRAS pages, ask your nurse for more support and if things are getting bad the Samaritans can't advise but listen without judgement and that can help, I know I've phoned them sometimes just crying for 2/3 minutes, they waited for me to speak, saying they would not hang up. It is tough but this site is here to offer support.🐕

The same principle applies to all medication what works for one doesn't always work for everyone, Enbrel is in the top 10 of medications throughout the world

No1 Humira (adalimumab) No 2 Eliquis (apixaban) No 3 Revlimid (lenalidomide) No 4 Keytruda (pembrolizumab No 5 Enbrel (etanercept) No 6 Herceptin (trastuzumab)

I am so sorry to read about all you have been through. No wonder it has such an impact for you. There is lots of of great advice from many others and I just hope your rheumatology team will start listening to you properly too.

Having a chronic illness really can take its toll both physically and emotionally. I have had a lot of support both physically and emotionally. Just last year I felt like my world was falling apart and I spent a lot of my days crying and being very angry. I am still working with my rheumatology team two years into diagnosis of finding the right meds for me. I have had a lot of emotional support through counselling and CBT too.

It’s hard going sometimes though. I really do hope you can get some support as you have been through some life changing events and doing all you can daily. As other people have said there are lots of options for other medications for RA too.

Thinking of you and sending lots of love. xx

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