I'm 2 and half years with RD now. Been on every dmard, none helped,in fact put me in hospital with pneumonia and AF. Benepali helped for 6 weeks then stopped. Been managed in between with joint steroid injections and systemic steroid shot in the bum when joint swellings were too numerous. Currently 16 weeks on Amgevita , 2 weekly injection,feel like crap.
In rheumie clinic yesterday (nurse). Greeted with news my inflammatory markers are way down,lowest have been in 2 years,nurse seemed delighted. Bear in mind I had hobbled into room as my right ankle is like a golf ball, my feet are in agony, and I dropped my walking stick as my hands are useless! Told nurse I wish someone would tell my feet and ankles the good news. Given the usual response... feet not included in das score.. so (as my hands and wrists have mix of OA+RD)and only one knee swollen today, my das score has actually come down! I then tried to explain the awful side effects I have(headaches,palpitations,fatigue beyond fatigue, brain fog, sweating that even includes the soles of my feet, anxiety.....the list goes on). She advised taking a month off the amgevita to see if the symptoms "go away"as it may be menopause!! Erm, I had that years ago, I know the difference. She did relent when she saw my ankle and I'm waiting for an injection under ultrasound. Am I going mad people? And who can help me with my feet, walking is a nightmare.
Love to all XxX
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Taraheart
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Sorry you’re feeling so awful. While I’m not diagnosed w/ RA, I can see you’re not going mad, and something is wrong. You know your body better than anyone, and unfortunately some medical professionals don’t truly listen to patients. It’s so frustrating; I know!
Hopefully, you can find a med professional who can help. Good luck w/ the injection. Hang in there!
Thanks a bunch for reply. Going to speak to the doctor when I go for my scan. It's a shame when a drug actually does help rheumatoid.... but the side effects make it intolerable. Much love XxX
You are not going mad I am 2 years in and only last month am I now taking a medication for RA that has not taken me down hard which is Olumiant/Barcitnib. 6 weeks in and I fel it has taken some rough edges off but I also have fibromyalgia and this is creating havoc on the body at the moment plus my fatigue is thro the roof.Does my bloods say all good YES do I feel great NO. However it has taken one private consultation and a hell of a lot of pushing and research to get to where I am now . Too many times menopause is blamed and when they say that to us it drives me nuts. So keep pushing for treatment and changes as we apparently not meant to feel this bad IF the drugs are working.
You are not going mad. It might not take your pain away but it might help a bit to know that we all know how you feel. We can't manage without the drugs but our bodies don't like being bombarded with chemicals so they rebel. As for feet. Like yours, my feet are a nightmare. I have tried many different makes. I still think Hotters are better. I have tried all kinds of creams, cushion pads etc. It is still like walking on a rocky beach even on the carpet. I can't suggest anything else sorry.
Don't give up fighting for the right drug for you, you definitely are not going mad.
I asked the rhematology nurse why feet, back, neck aren't included in the DAS score and she didn't know, its ridiculous. How can they say yay inflammation is going down when you can't even walk well 🤷♀️
Seriously they do make you feel mad, you do have to question their nursing abilities when they can't even recognise you can't walk properly (I don't mean to sound harsh as alot of the nurses are lovely people ).
Its not an isolated case though because mine are like that , yours are and lots of people here have had the same too. I wonder if they get some kind of training that if they tell us we are ok we are hypnotised into believing it ha ha.
I know its tiring but you've got to keep on speaking up and saying your not happy. You've given your drug a good bash there has to be more to try.
I'm currently going through a crappy time as I'm the same as you and benepali stopped working at about 6 weeks and im now on week 16 🥴
I honestly think those joints aren’t included in order to keep the number of people on biologics down. I remember failing my first biologics assessment even though I had to wear flip flops there because my feet were too swollen to fit in any normal shoes 🤦🏼♀️
I wouldn't be surprised, its absolutely ridiculous.
Its bad enough having this "thing" let alone having to fight so much to get medication which works.
I spoke to NRAS and they said every consultants aim should be for each of their patients to achieve remission or as close as they can get, well I think some consultants are slack then.
I’ve never had a consultant who has strived for remission for me. I’ve had various drugs thrown at me and then been left to fend for myself. But hey, they only have to see me once a year, so if they can get through 10 mins and then get rid of me, why not?!
NRAS are great but the reality of rheumatology “care” does not always match the theory, unfortunately.
Yes it feels after almost 20 years of RD (and friends)/banging my head against a brick wall that I am a fully paid up member! There have been a few times when things have gone well but few they have been and usually not connected to my RD. I keep trying
Thank you,. I called the rheumie helpline in tears.Received my clinic letter today,didnt mention half of issues I asked for help about. Been invited out for the bank holiday,cant even go for a walk on the beach, is that too much to ask. She said will check when ultrasound/injection can be done on the ankle, will refer me to podiatrist, due to see consultant(who I like) in 3 months, advised leave out amgevita for 4 weeks then would reassess. Here's hoping. Much love X X
Slightly controversial suggestion here. I’ve gone to sports physios in the past for steroid injections into my knees. Many of them do it - lots also have ultrasound machines for joints where guidance is needed. Obviously you pay for this (I paid £100) but you can get it done pretty much the next day, or within a week for sure.
So if the NHS takes forever to produce an injection appointment, there is an option to take it into your own hands x
I really feel for you.I have been the same. Had to cry before they would take notice.Sonetimes its just a steroid jab they would give.Mostly am told it's my fibromyalgia which symptoms are same.do you suffer with that or can you be tested for it.Seems we are just a number in waiting room one in quick then another one in.Thankfully my 4th biologic is helping more.dont give up
Bloods often don’t tell the whole story. I currently have knees that are twice their normal size and swollen elbows...but my bloods come back completely normal every single time.
Don’t be fobbed off with their lines/excuses. Keep your own diary of symptoms and share it with them. Push for additional investigations - potentially even some more scans on your joints.
This is an MRI shot of my left elbow - which the specialist kept telling me wasn’t swollen. All the white area is inflammation.
Hi Taraheart, sorry you are struggling - I am with my feet too.
Don't dismiss menopause - isn't something that you' go through' then magically goes away, it's a long term hormone deficiency and affects every system in the body. It's long term impacts can be devasting for some women and last for years.
There has been lots about menopause in media recently, a long list of associated symptoms, many the same the as RA - fatigue, joint aches/pains, inflammed tendons, low mood/ anxiety/brain fog/ sweats etc; The lovely NRAS helpline lady told me many cases of RA/IA present in women at menopause - post or peri. Having my RA present at same time as menopause is overwhelming and confusing - a game working everything out.
I am 6 weeks in on HRT and hope it will help. Flushes and sweats have stopped already. It may not help everything but I hope it will complement the RA drugs and protect me from future health risks such as CVD and oesteoporosis.
Newer types of HRT are body identical and natural ( made from yams) and any risks of taking it long term are very low. Check out The Menopause Charity website - it has a really useful symptom checker on the link below- you'll be surprised at the list, I was!
You can fill it out , take to GP - at least your Rheum clinic nurse sounds clued up.
Yes!! I'm convinced part of my problem is hormone related, as RA appeared roughly the same time as I hit the menopause... As you say boggyankles, it's an ongoing issue that never really stops. My mum is 76 and she still gets menopausal symptoms! Unfortunately my GP is reluctant and my Rheumatologist is disinterested in pursuing HRT (even the mild, natural forms you mention) until they get my joints "sorted". Well it's been nearly 3 years of misery since diagnosis and still none of the DMARDS or biologics have done the trick. I feel the next step is to ignore them both and take myself to a menopause clinic and see what they have to say...
And Tara, I really feel for you! It feels so unfair and frustrating when you're not being heard and it feels like you're not being helped. Maybe find some alternative therapists who can do some gentle massage and give some much needed sympathy? Often that's what we need to feel like we have a bit of control and that somebody really cares.
I try not to think of it as 2 seperate conditions. I am post menopausal and I have inflammatory arthritis - 1 impacts on the other, frustratingly it's up to me to work out which though. I want to treat both side by side but I will always wonder if my RA would have presented had I tried HRT earlier. My Mum 88, was on HRT succesfully for decades and presented with Sjogrens (auto immune) not long after being taken off it due to her age and increased risk. She suffers awful symptoms now and at a great cost to NHS with medications and procedures.
The way I see it is there are oestrogen receptors in the synovium of joints, oestrogen is an anti inflammatory. My Rheumy is happy for me to trial HRT alongside DMARDs (which haven't worked for me yet). The HRT takes a few months to work and may need tweaking - just like RA meds do.
The HRT I am on isn't 'mild', it is made from yam and is body identical. It is regulated as per the NICE guidelines and is available on prescription from GP.
The Menopause Charity is currently offering free menopause training for 1 GP in every practise in UK as they are woefully uninformed, hence their ignorance/reluctance to prescribe.
There are useful resources on the links below, so much help women who are still struggling. Print off sheets to take to show your GP.
Thank you! I agree about GPs not being informed. Mine is pretty ineffective which is why I'm thinking I need to pursue this independently and then go back to her with a prescription request! I've a slightly complicated gynae history anyway (I had treatment for multiple fibroids, which are linked to excess estrogen) and so would need a bit of specialist advice about my personal risk of taking hrt anyway... so I've a good excuse to circumvent her! I saw Davina's documentary - it's what motivated me to take some more proactive steps to get the help I need! The link between RA and menopause is very clear to me. I can literally feel it in my bones! Thanks for your encouragement too. x
Thank you,. Wish I could take hrt again. Was happily on it when got RD. Ended up in resus with pulse of 200 and pneumonia after taking dmards.hrt been a no no since. .Now take cardiac meds and have been getting palpitations again on the amgevita... so it feels like what may help the joints(and that's only minimal).. may damage my heart!!!! Think would take the chance if my quality of life was improved mobility wise... but can hardly walk so doesn't feel like a fair swop. Much love XxX
Omg I know what you mean , you need to stress about this pain we all know our own body and sometimes you just sent home to get on with it , pain is where the patient says it is, I have sat crying as I couldn’t get myself off toilet , couldn’t stand , taking pain killers through night, now on Abatacept seems to be working I still have some pain but nothing what is was like before, I inject wkly I start to get increase in pain the day before my injection so my body ready for it , I have been on MTX and others that didn’t work , keep pushing until you get the right drug for you . Good luck
Think have done my DAS score all wrong. My rheumy says to include all joints except back so I do. Know what it is like not to be able to walk. Nothing I take seems to have an effect on my ankles and walking with shoes on in particular very difficult. Keep on at the medics, only thing you can do. Good luck.
Specifically feet related. I couldn't walk due to the pain when I was first diagnosed at 17. Now 44. Only pair of shoes I've ever been able to wear is Fitflops. They are expensive but may give you some mobility. Goof luck
Sorry to hear you are having such a rough time. No matter what the blood tests show, if you feel that bad, the medication is not doing what it needs to do, which is make you feel better. Even if all your joints felt better, you still are dealing with the headaches, palpitations, and all the other effects you mentioned.
Don't let your health care provider dismiss your complaints. I'm sure you know the difference between this and menopause. I sincerely hope you find something soon that works for you. Don't lose hope.
Hi Tara, Well my RA inflammation and disease activity is non existent at present on my med (Rtx) but side effects are existent .. but that’s another post ... What your biologic won’t do is stop existing OA/joint erosion/bone damage and that’s the case especially for my left foot and ankle which can move but seize if they get too much movement or not enough! That balance is key. Sounds like it could be the same for you. It is good though as your nurse said that your inflammation is down. Annoying you still feel crap. Have you asked to see an orthotist re some support in your shoes ... Maybe have some inner soles/shoes made? That could help a lot. Hope the ankle injection helps and let us know as I am interested to have one. The sweating .. could it be a side effect of your biologic as I know sweating is listed as one of my biologic’s side effects.
Something to make you smile ... My feet used to sweat on the soles no matter what I did and the orthotist was asked to cover the orthotics in fabric so they weren’t plastic-y next to my skin. No, he didn’t, so I requested again and was told to keep using the first pair and use them until another lot made. I went to my local library and walked across the silent room (past a very handsome man) to find my hot soles squelched again with the plastic orthotics and made a large sucking and then rasping (trumpy!) noise as they stuck to my feet. I just put my nose in the air as I rasped on by and pretended it wasn’t me! It is annoying to sweat though as I’ve always been a cool as a cucumber person normally, but my med makes my forehead, neck and décolletage wet and my feet too. Ugh ugh and ugh! Squelch and rasp! 🤨😝 Good luck for your ankle. xx
Thanks for reply and funny story 😂 will let you know how I get on when ankle injected. So difficult to balance out benefit of biologic with awful side effects, and still walking(if you call it that!) like a wobbly duck! My hands and feet are wrecked, lovely mix of OA and RD. Just called helpline, she has referred me for podiatrist and I see consultant in 3 months, going to miss out amgevita for 4 weeks to see if side effects ease,then reassess. Much love XxX
Hi Taraheart, I have always had various joints swelling in spite of so called ‘drug induced remission’ that rarely lasted anyway. I was also told my blood markets were good when in agony with feet, neck, hands etc.
It was not till drug infusions instead of DMARDs and trying other biologic drug (Amgevita made no difference) that I finally had relief in almost all joints.
I endured far more pain than was reasonable to expect, and decided never again… will be very clear and very firm when in unacceptable levels of pain. Not that that is easy when we are suffering and can hardly think straight!
Systemic steroid jab had no effect either.
I have had localised ones in wrists and knuckles which were effective, ultrasound guided. Also ultrasound on ankles after falling and almost knocking four teeth out, but had previously fallen nine months earlier due to feet simply not lifting clear of the ground.
This still happens and the ultrasound showed synovitis ie active RA in ankle joints.
But not had jabs in ankles. They are back to their tricks now in spite of recent drug infusions to control active RA. And I only got the ankle ultrasound back in 2017 after writing to my Rheumatologist, describing the ongoing feet and ankle problems and falls.
Hope you get relief after your steroid into ankle joint/s. Keep fighting fir better relief if not.. 🌸
Totally get your situation! It s always baffled me as to why they only use the hands as a guide and a marker! I've hobbled into scans and ultra sounds completly complexed as to why they are not concentrating on my feet and other parts of my body, it really is ludicrous and non sencical!! I also have OA so it s hard to distinguish whether the pain is from RA or OA, and given nothing can be done for OA it s a minefield.
I'm 3 years into RA and still not settled with medication, mainly due to the side effects being just too unbearable! I ve tried 4 DMARDS and now on my 4th biologic which I've had to come off due to a 10 day debilitating migraine which was so bad I thought a had a brain tumour!! I've currently ( with the guidance and agreement of my consultant) decided to take a break from the meds just to give my body a break. My RA is not too bad at present so I'm taking each day as it comes. God I hate this disease!,
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Depo injection. Bad flair up is there anywhere I don't hurt!!!
New to the RA didnt think i have it this bad so quick
Update - why do answers take so long?!
Bad structural damage to one hand and beginning on the other but normal test scores
I've had good results!! just what i needed:)
