Hi I was diagnosed with RA 23 Dec 2015 at age 62/& had my first consultation in March 2016 with my rheumatologist. I was put on Sulphasalazine in May 2016. I basically took this whole thing in my stride & firmly put my head in the sand telling everyone “
I have not got it full blown, I’m in the very early stages” Blah blah & even asked the consultant if the anti ccp test of 120 was a mistake or could be a lab mix up! I did have osteo which I dealt with by exercise, eating healthily & keeping active. How naive I was about this dreadful disease... The “ full force” of my first flare up hit me like a ten ton truck in February of this year.
I was totally un prepared for this or the several vile flare ups since. I have been on 20mg oral Methotrexate since May this year, changingto metoject 10 days ago as I wasn’t tolerating oral very well. plus had 3 steroid injections to get me through, ie our Australian Adventure, plus our normal holidays. I am not coping at all, RA has severely impacted on both mine & my husbands life. Because my hands are so badly affected & are rarely free from pain, plus feet, neck & shoulders I can no longer do diy, clean my house, cook a meal, entertain, garden, sew, knit & do my art. As others no doubt say the same, this has been “catastrophic” to the point that I am seriously considering my future, which looks exceedingly bleak, & think that the way out is probably down the”Dignitas” route. I lost my mother in July after a long battle with Alzheimer’s which was horrendous, & I seriously do not want to end my life in a nursing home riddled with pain... I have met some lovely friends through the RA groups plus meeting at RHeumatology clinic & two of them are on biologics which have worked wonders, they have got their life back! However, I feel that due to being over 60 & they are both younger than me, there’s a possibility that I will be sidelined by the NHS because of the cost of Biologicals. The Methotrexate is just not improving g my RA, seems very aggressive & I am at a point of despair. I want my life back & my husband wants his wife back & after a particularly bad flare middle of last week where on a particularly bad day I couldn’t even brush my own teeth or even hold a bottle of water when I needed a drink, let alone hold a knife & fork, I felt I had reached “rock bottom”. I haven’t seen myconsultant since February, I saw his houseman at the beginning of September who basically thought I was depressed (who wouldn’t be) & needed Amytriptaline which I’ve stopped taking as they “ wipe me out”. Now, after I literally told one of the RA nurses that there was no way I was prepared to carry on like this & actually cried on the phone, I have a appointment with the consultant this Friday. My husband is getting very annoyed now & is coming with me, I am definately going to insist that I need better drugs to control my flares, possibly biologics as Methotrexate/ Sulphasalazine combo is just not working.
My questions to you all are this..
Is it the right time for biologics? More to the point will I get them at my age or be-fobbed off? Because I have had two severe kidney infections inSeptember will this prevent me being classed asfit enough for them? Fingers crossed ( they cross on their own lol) but I suspect I will be sidelined watch this space........
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Juliachoo
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within a 6 month period & have a DAS score in excess of 5.1 . ( Assuming you
pass other medical reqs such as TB , Hepatitis etc , chest x ray )
Only when this is achieved will a biologic be advised .
Whether right or wrong the NHS is under financial strain so these are the hoops & the consultant’s hands are tied .
I have had RA for 20 years and had remission for many years .
But for the last 18 months my health has deteriorated - same as you - unfortunately for me bloods do not show active disease so hospital thought everything under control .
So aside from meeting Nice guidelines how was I put forward for biologics :
1) Ultrasound showed active disease
- this is a gold standard test for inflammation.
2) 2 different hand x rays over 12 mths
showed new joint damage despite normal bloods. .
Long story short it is about jumping hoops - of course this anti TNF might not work but fingerscrossed!
Age is not an issue I think however the dialogue with the consultant must be a conversation stressing your situation . Leave any annoyance at the door .
Good luck - in all of this .
Ps You cd also get a private consultation
to get another medic’s perspective on your RA . As they say , knowledge is power.
Short answer should be yes and yes... if anything they are less stressful on your kidneys than MTX.
If you know your most recent blood test, then look at the NRAS 'know your DAS' app so you can get a feel for how close you are to the magic 5.1 number. Although if your hands aredeforming I would hope that it would be academic and they would put you forward without having to go through hoops. The medieval system means that some people have to come off all their meds so they score enough...ouch!
I agree with MAGHS, try to deal with your appointment firmly and resolutely rather than anger. But stand your ground! You need a change of drugs now! 64 is no age at all and you deserve the best quality you can get.
No one should be denied meds 💉 💊 nor live in pain 😫 / fear 😱 of what the future 🔮 holds. 😔 🙏
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If med process 👩⚕️ 👨⚕️ isn't responding rapidly 🏃♀️ enough, sometimes we have to take action ✊️ ourselves to get things moving 💃🏻 .
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(Lighting a fire 🔥 under derrières 🌙🌙. ) 😳
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When starting to contemplate 🙇♀️ the ”Dignitas” 😵 route 😔 😞 after going fulminant 🤕😩🤢🤤 (being hit by the 10-ton truck 😲 🚛 ) & hitting rock bottom 🌚🕳 , we're ready/ motivated for significant "change." 😯
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Research 🕵️♀️ 🔎 📚 , contemplate 🤔 💭, & act 🙃 🔨 .
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👍
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Thank gawd 🙏 your beloved 💑👨❤️👨 is in your corner getting involved!! 😌
Hi, sorry to hear you are having such a bad time. This is an awful disease and like you I sometimes see no end in sight. I don't think age makes a difference in the decision for biologics. I am 70 years young and have just heard that I am getting funding for them so there is hope for you. In the meantime take care xx
I’m so sorry you’re having to go through this and glad that your husband is going with you Friday. I just wanted to wish you well and please keep us posted. 🌸🌸
Don't despair, if you meet the criteria you should get biologics, I like Mary am 70 years old, I am starting it next week. I can't tolerate 3 dmards plus prednisalone. Be thankful that you have a husband that can help you with the day to day activities, I am a full time carer for my husband who has dementia so I don't have anyone to help me. I do however have carers in to shower and dress him and a cleaner once a week. What I am trying to say is that try not to get angry just firm, and also however bad you feel just now is that you will feel better and there is always someone worse than you are feeling right now. I do hope you will feel better after your appointment on Friday. Sending you gentle hugs. Xx
Thank you & I also understand your situation having looked after my mother for 7 years who had Alzheimer’s before she went in care 2 years ago & then sadly died in July this year after a very nasty accident & traumatic death. I do hope biologics work for you. Sending hugs back 💐x
I hope biologics work for you. Can I ask how long you had to wait for a decision for funding? I am in the Sherwood & Newark NHS Trust area & it’s common knowledge that they are absolutely broke after rebuilding hospitals & funding them by the PFI system & now cannot meet the repayments! After becoming friends with some lovely people met through this horrible disease it is patently clear this area is not putting many RA sufferers on biologics, even when they are much younger. I shan’t hold my breath... 😘
Unfortunately Julia, apart from having failed on 2 or 3 Dmards, one of which being Mtx & having a DAS of 5.1 or higher it seems to be the luck of the draw , plus a postcode lottery as to whether you will be funded for Biologics. I'm sorry to be so blunt, but no matter how much pain you are in if you don't reach that magic figure your rheumatologist just can't put you forward for Biologics.
But don't worry about being excluded because of age, I was put on Rituximsb at over 70! So they do look after us oldies! But I have had RA, with all the horrors you are experiencing since 1999, & my rheumatologist has managed to keep me going all that time. If your present consultant doesn't come up with some answers, why don't you search out a respected rheumatologist in your area & see him/her Privately for a second opinion....you may then be able to see that doctor on the NHS?
As RD is considered 'incurable' private medical insurance will not cover the treatment,& it is extremely expensive to self pay..I understand between £10k £16k pa...depending on the particular drug.
But I would advise you & your husband not to go in all guns blazing when you see your Rhheumatollgist on Friday....you want him on your side. He probably sees many patients in your situation. I know when I was first diagnosed I thought I was the only person in the world to be in so much pain. I could not get dressed for days on end as it was just too painful to move. I could only drink from a small bottle as my hands were so crippled I couldn't hold a cup or glass.....& I live alone, so you can imagine it was difficult, but I tried not too stress too much, & drove my friends mad phoning them to distract myself...no email back in 1999....even if I had it, I couldn't type as my fingers would not move.
I do hope you get something positive regarding your treatment on Friday, but don't get too down if Biologics aren't the answer for you just yet.
Thank you & I take on board what you say however I do think that some consultants drag their feet when giving biologicals & some don't despite a post code lottery. A little group of RA patients that we have formed are becoming testament to that! Don't worry about all guns blazing, my husbands lawyer training will prevent that while I will probably have a complete meltdown & cry moment! Thank you again for your input & kind words 💕
I don't want to pour cold water on your little group''s take on the prescribing of Biologics....but 6 people's health history & blood tests will tell 6 different stories of who is suitable for Biologics..no matter if outwardly the condition appears the same
.I have had cancer....so that eliminated every Biologic except two...so if fail on RTX, I only have one more chance & the effect RTX is having on me may eliminate that ....so do listen to your consultant's reasoning if he doesn't decide to prescribe a Biologic straight away. He not only has to take into account your present state of health re RA, but any other health issues that may affect his decision,
It's a miserable situation we all find ourselves in & patience is not a virtue I am over endowed with...but I sure am a lot more patient these days.......fingers crossed you get a good result on Friday.
Juliachoo II hope this question was directed at me, if not I'm sorry. I went to see my rheumy on the 21st September, on 17th October I saw my rheumy nurse who talked me through everything I needed to know about biologics and showed me where the suite is. I then had bloods taken. I got a phone call on 26th to have infusion on 8th of November so from the start it has been 7 weeks. Pretty amazing I think. X
I'm 61 now and have been on a biological for a few years now and for me it works ok. Having said that we have had a medical emergancy with my mum she had a PE and we all thought the worst. Thankfully she well now but once we knew she would recover I had the biggest flare I've ever had and was told by my nurse that it was the stress I'd been under and that stress was a big trigger for flare ups especially when the problem had resolved.Seems as tho thats when it hits.
Please don't feel like you will never be well again and let your nurse or Rhumy know about the stress you have been under.
To all who sent me input thank you. But I have to report that the appointment with my consultant did not go well, I was basically fobbed off with yet another diangnosis on top.. Fibromyalgia.. I will put a post up to this effect, I am deeply upset...xx
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