When you take medication and feel worse for wear 😬 - NRAS

NRAS

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When you take medication and feel worse for wear 😬

Hessie5 profile image

Hi All, hope everyone is feeling well as could be.

Started this new biologic some 2 weeks ago now. Tofacitinib. Day 1 - woke up swollen fingers and feet throbbing, felt reluctant to continue but knew I must. Day 2 - same feelings joints between fingers tender and sore, and feet tender. So you can feel the pattern here. I called the nurse last week to explain, however I was encouraged to NOT stop this biologic. Currently two weeks on now and I honestly feel worse as if it has spread to my hands and left foot and right arm. Every joint is tender and sore 😬

Frustrating, as unable to travel to work today the hopping up and down the packed underground is too stressful.

Right now I am thinking of discontinuing this medication as not sure if this is contributing to my worse for wear demeanour right now. 😕

Do we need to feel worse before we get better when taking meds? Has anyone else a similar story?

As always let’s remain optimistic with the hope of feeling better soon. Hessie

24 Replies

I do know how you feel.....been there many times in 20 years.......but if your Rheumy team have advised you to "keep at it"......can you try to give it at least a couple more weeks?

I well remember honestly thinking many Dmards were never going to work.....my problem has always been nausea & vomiting as well as the painful joints ......then they suddenly they started to work.......but sometimes it did take weeks.

Unfortunately ...yes...we often do feel worse on a drug before the meds kick in & then you suddenly realise today is just a bit better than yesterday.

Maybe Tofacitinib will turn out not to be "the one" for you.......on the other hand in 4,6 or 8 weeks it may be?

I know this is really not what you want to hear......but with RD there appears to be only "try it & see" with any new drug........your Rheumy will have chosen the Biologic he/she thinks most likely to help you, but unfortunately it is not an exact science.

I do hope in a couple of weeks you are feeling some good effects.

Hessie5 profile image
Hessie5 in reply to AgedCrone

Thank you for your valuable advice, much appreciated and I do agree with you, you have prompted me to continue. I am just having a moment for sure due to the pain and not being able to get to work today. I have taken an Anadin inflammatory to get me through the pain so shall cheer up soon. I am due to see my consultant on Monday so shall see what he advises. Wishing you the very best. Hessie 😊

AgedCrone profile image
AgedCrone in reply to Hessie5

All you can do Hessie is spoil yourself & until things settle one way or the other, do anything that brings you relief.I'd take tomorrow off too if you can!

I well remember my brains disappeared into another region & I took more & more pain killers only to make the vomiting worse...but at least whilst I was dealing with that I couldn't think about anything else.

Cuddle up & eat chocolate! God luck with Rheumy on Monday.

Hessie5 profile image
Hessie5 in reply to AgedCrone

That is what I am going to do..... Health first! Thank you for the positive vibes it really helps - I am going to look for the Thorntons chocolate my daughter brought home on Monday 😊. Have a wonderful day ahead. Hessie x

AgedCrone profile image
AgedCrone in reply to Hessie5

A thought....try asking Rheumy for more suitable pain management.

That might just get you along enough to tolerate the Tofacitinib until it Works?

Sorry to hear that Hessie; i’m not on tofacitinib so no help there but all my joints & some new ones really ached after benepali jab yesterday, subsided a bit today. I used to notice same but to much lesser extent on MTX and can remember reading something on rawarrior US site that this was common effect. I have no idea why perhaps someone else here will? Not much help to you but commiserations: I was a miserable cow yesterday because of it 😁x

Gnarli profile image
Gnarli in reply to

I find it hard to believe you'd be a miserable cow. Ever. But if you were can I join the club? I'm like a weasel with toothache on Wednesdays

in reply to Gnarli

Ooh I have my moments Jan: personally think we’re all bloody marvellous putting up with this n the drugs 😬 Sorry to hear you’re the same, it’s strange, wish someone knew why. I pretend it’s the drugs attacking whatever causes RD ☺️

Keren x

Hessie5 profile image
Hessie5 in reply to

Sounding like this is just the way RA manifests itself. I foolishly thought it confined itself solely to my right foot and was able to at least tip toe on my left - but no more, then when I thoughts my fingers were safe it got them too - so I too was a miserable cow feeling sorry for myself 😔. However, just ate a delicious bowl of oats and pear porridge and managed to smile reading my posts. Have a wonderful day knowing through it all we are all troopers. 🙂

in reply to Hessie5

It does like to go for a little trolley round your body I find, keeps you on your toes guessing where it’ll pop up next. I might ask rheumatologist (who thinks it’s only hands n feet lol) next time I go but I am probably not smart enough to understand 😂

Have a great day Hessie, hope it improves soon, enjoy your porridge; I love apple & cherry heaps of fruit one which probably means it’s really bad for me x

Hi Hessie I would try to grin and bare it for a month or 2 to see if it kicks in although when hurting it's not easy, I'm on my 2 biological Humira after failing on Benepali, been on it a month and not kicked in properly yet but I think it's starting to work slowly so sticking with it, also on Methetrexate 20mgs, hope it starts working for you soon but if not there's loads to try xxx

Hessie5 profile image
Hessie5 in reply to popsmith1874

Thank you for your words of inspiration - depending what my Rheumy says on Monday I am going to do continue at least as you say give it time. Right now I feel like I am walking on hot coals.....Hope it works for you too albeit swiftly! My best, Hessie x

Hi popsmith may I ask you a question you say your on 20mg of methotrexate I was on 20mg and then given a depo injection but unfortunately I took a severe allergic reaction ended up with a rash a form of Stephen Johnson syndrome (Major rash from torso down to my toes) which was quite painful 😔 but now their saying I can no longer have steroid injections as they think there's something in the injection "the carrier" ever again as of the reaction was severe but since this happened my hair has been falling out I lost at least 1/2 the thickness of hair I'm just wandering if it was the methotrexate itself for the hairloss as it was coming out just before my injection but not as bad do you have any loss of hair as i do? They've put me on the tablet form steroid prednisolone 20mg until they sort out some new meds I'll keep in touch with the group with updates🤪

Best wishes and hugs Shelly

It could possibly be the Methetrexate as I've seen a few people on this site who's hair as thinned or fallen out with Methetrexate, I've been fine with it but can't tolerate 25mgs as was making me ill, hope you get to bottom off it xxx

Thank you for the info look after yourself and hope all goes well with your Meds x

Ah yes. Happened with benepali I take. I got an initial good response than bam... Everything hurt! I'm ok now.

Hessie5 profile image
Hessie5 in reply to

Thanks Nettienet, there is light at the end of the tunnel fingers crossed. Glad you are on the up too!

Love this forum for all the positive, inspirational and funny comments, sometimes we need to have a good laugh in the face of all the pain and uncertainty of these diseases. Hope all works out Hessie5 sooner rather than Later. I also think we need to listen to our instinct of whether the meds are working as well, what’s acceptable and what’s not. Blessings and hugs to all.

Hello, I was prescribed 2 different anti TNF drugs (sorry I can’t remember which ones), the first did nothing to help my symptoms the second worked really well unfortunately after about 3 months I started to feel absolutely ghastly. I couldn’t figure out what was wrong. Eventually after a further 5 months the rheumatologist told me it was the drug. It was discontinued but took a further 8 months to get out my system.

I do realise that for other people they work tremendously well but sadly not for me. I am now really unwilling to even try another of these drugs which I have discussed with my rheumy and while she has stressed that the drugs prevent all sorts of things she does appreciate how I feel. Discuss your problem with your rheumatologist. Drugs are developing all the time this one might just not be the one for you. All the best.

Hessie5 profile image
Hessie5 in reply to dippyd09

Thank you for your sound advice, I shall give this new one a try and if not happy shall stop and look for alternatives. Wishing you the very best. Hessie

I really do wonder about these meds and what they do or don’t do and the fact the doctors don’t really know either so we are all just guinea Pigs. It’s scary and such a horrid disease. Best of luck sorting a suitable medication, I’m on the roller coaster too but I don’t know for how much longer. Seems from lots of posts on this forum that one med will work for sometimes years then stop. I hope I don’t sound negative, just being realistic. It’s a hard disease to deal with. Be kind to yourself, rest up when tired, eat healthy, avoid stress and try and stay positive and know that you are not alone on this journey. 🤗

I agree in full with what you say. It is concerning when the professional is using guess work with your health, that’s why I have almost become my own doctor and know what my body can and can’t handle by the response I get when taking these medications. Whilst I am not against meds and don’t want to seem ungrateful as back in the day there was nothing for those with this wretched disease. I work with my rheumatologist to a certain degree then make my decision how to work with the medication prescribed along with a balanced lifestyle. Hope all is going well for you. 😊

Seems we are in the same page Hessie ..I agree with what you have said too. I get scared wondering if my high inflammation is affecting my heart health. Check out Moringa Farm Australia, I’m taking the capsules every day as well as high dose milk thistle and liver herbs. I’ve decided these two supplements are all that I need along with a good diet. Your absolutely correct about knowing how our bodies react to medication, food or whatever, and I like you have become my own doctor to a degree. I wonder how up to date professionals really are unlike us sufferers who read up on this disease constantly. I so wish there was a holistic approach to our health but alas not to be for obvious reasons. Another site you may be interested in is Autoimmune secrets, after all this really is an immune disease,mi have found invaluable knowledge from their podcasts. Gut health along with a peaceful life is paramount in my opinion to staying on top of this disease. I had been unwell for over a year, constantly telling the Gp something was wrong with me, fatigued, brain fog, apathetic, blood work out of whack. Finally after I had a PRP injection in my ankle leading 3 weeks later to a massive cytokine storm in my body did it become evident I had a serious health problem. After being messed around in a regional hospital for a week I got myself to Sydney and was admitted for 3 weeks and diagnosed with inflammatory arthritis or RA seronegative. Looking back and knowing what I do now there were signs this was auto immune and had I addressed it then would probably not have ended up in an acute stage. I got psoriasis on my hands, never had it in my life, weight gain even though I don’t eat much, thyroid, gallbladder and pancreas problems surfacing. I spoke to a fabulous immunologist in the hospital who agreed with me that I acquired this from a very strong treatment I had in 2016 which crippled my immune system then the PRP injection just topped it off. Look up cytokine storm and arthritis, interesting. Anyway that’s my story, was to have bilateral knee replacements next week which is postponed until my inflammation is down. By the way, I didnt even have knee problems in April, well not to my knowledge so to be told I’ve got bone in bone both knees was a huge shock. This disease attacked me very quickly and aggressively and needed immediate attention which didn’t happen. The immunologist told me which concurs with what I have read p, to treat the inflammation immediately with high doses of steroids to get it in check quickly. I hope you get somewhere with all of this, keep us posted on your progress and what your doing as I’m very interested to followmothers on the same journey. Take care and god bless. 🌺. Ps my hair is falling out too, by the brush full, and this new med can cause alopecia not just hair loss. It’s all a worry. Sorry for the long post if you read this far.

Hey Daisychain, apologise for my late response. Thank you for your informative response too. Sounds like we share similar views indeed. I am going to certainly look into the moringa, I am trying out the Black Seed Oil. I have so many supplements I could open a health food store 😊... I.have divided to focus on essential....A, B, C, D.... Lots of organic veg and fruits. I no longer limit myself to not eating a bit of cake neither as still have to enjoy life! Probably be eating my words tomorrow as pain may just set in 😬 as are a hefty slice today.

I am now thinking of seeing a nutritionist as I have never been tested for gluten intolerances.

Right now things are up and down. Good days and not so good days, but I get through. I decided to do the plank to strengthen my core ended up with a bad flare in my foot! So for me its live and let live, whatever will be so it goes.

I shall indeed keep you posted on my journey to wellness. Try not to worry and I know easier said than done, it only exasperates this wretched disease.

A good podcast, an Epsom salt, sinking into a fresh linen keeps me happy 😊 stay strong believe things shall get better for us all.... Hugs Hessie

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