Drugs : Hi hope you folk are ok.. I’m struggling bad... - NRAS

NRAS
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Drugs

Vonnie10
Vonnie10

Hi hope you folk are ok.. I’m struggling bad again sorry my post isn’t love and light, tried lots of drugs methotrexate tablet and injection no joy. Hydro chloroquine no joy other tablets can’t remember been that many Benepali worked then stopped jak. inhibitors no joy second set of ritx first year great on ritx had it in jan and it’s just not working. The pain is heavy what’s next anyone been in these shoes ? Brings me to tears 😭 can’t get a steroid injection was told last month stick with naproxen cos of covid but it’s just not enough..is anyone on long term steroids on here because steroid injection seem to me that’s the only thing that works? My life is pian and misery . Hate it RA

45 Replies
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Sorry to hear your woes darling. I don't have any answers for you and i am sending you a gentle hug. xxxx

Vonnie10
Vonnie10
in reply to sylvi

Thanks silva your going through it at the moment hope your recovery wellx

Hi ya sorry to hear your suffering you never said how long you gave these meds I no mine never kicked in for 3 months at least I was in agony really a bad time in my life but I stuck with it with the help of family friends and this site and realised a lot of us struggled for a while so keep ringing your doctor and medical team hang in there hope you get sorted soon sending you a big hug 🤗 x

I gave these meds a good go months at a the time some 6 months ritx been the last drug 18 month I had my second infusion in jan it’s just a nuisance now sick of it. X

Oh my gosh....how terrible!! I'm so sorry your in so much misery and pain. Prednisone was my magic drug for about a year and a half, so I didn't get the steroid shots, but took the pills. Everyone is different in how they tolerate it.

But maybe pills are an option for you right now, as opposed to injection? To get some relief? If your docs clears it?

Ask, it never hurts to ask and see what they say.

I hope you feel better ASAP!

Vonnie10
Vonnie10
in reply to Jesnaskah

They’ve changed my appointment in June to a later day I don’t thunk they’ve every really stuck to a date with the consultant rarely ever.. I always get to see a nurse but that’s always when I’m struggling and need a jab.. I’m going to push the issue for oral because I’m fed up of it.. sorry I’m moaning but no one gets it really except fellow RA sufferers so I feel ok to have a mona here if you get me..my families ok and understand but don’t quite get what it entails they do there best. X

Oshgosh
Oshgosh
in reply to Vonnie10

If you need to moan,we are here to support you x

Hi Vonnie10, I am in exactly the same boat and honestly I so feel your pain mentally and physically. I have been through 6 biologics, jak inhibitors etc etc some have worked well for a while but it’s like my body gets use to them then replies with you can’t trick me and the pain comes flooding back. I am now on long term steroids which I NEVER wanted but it’s that or I don’t move or have any quality. I try to keep them to a minimum maintenance dose but I’ve just had the worst patch ever and my consultant put them up dramatically I will then get them back down ASAP. Apparently more drugs are in the pipeline and in the meantime I just hope, dream, fantasise that they come quick they work and I am able to do more again because the frustration is a nightmare all of it’s own. Take care, sending big but very gentle hugs x

Omg your like me I’m so sad for you isn’t it just the worst then we will be given more drugs don’t know what worst the trail of new drugs or this .. just wished they would find a cure for it so stubborn..you get so disappointed that it’s not going our way...you know what else my bp was always stable 130 over 70 there about... all my life...now it all over the place one certain drug cannot remember which raised it through the roof so that was a no no.. 209/109... nightmare of Sulfasalazine..it’s never been the same since I got this RA.. I seem to get weird side effect of them all. Abscesses of Metrexrate It’s not normal there either to powerful for me but my RA is rampant..catch 22...I’m fed up of it.. ritx gives me bad OCD I’ve never suffered with that either..I blame all the drugs my life was normal before.. had to retire from my nursing job of 28 years they wanted admin for me I said no thanks loved the patient could not sit in a office..my consultant did not believe ritx gave me OCD she thought it was pain patch so I tried it again in jan 2020 without the pain patch.. OCD came back exact same time as the year before 12 weeks in. It’s madness. God helps us all. I hope you find your drug ASAP.. I’m so sorry your in this boat with me..

At least we can be in the boat together, my lovely! Like you I also had to give up my career, of teaching, which I loved and I miss very much. But I’m trying to have a positive day looking forward not back.....my day to hold you up in our boat!! Be kind to yourself today if you want to chat please do if I can help in anyway please say take care x

Toff thanks so much or your kind words I miss my job and all my work mates it’s sad tho we had to leave our jobs because of RA...just left a message at clinic hopefully get a jab will be back on track..will be a new me.. hope you have a lovely day I’m going to stay in the warm duvet day and watch a box set. Xx

Good idea! Everything’s crossed that you get your jab quick. X

💕

I am in the same boat. The only thing that works for me is a steroid jag in a joint. I have been on rituximab for about 15 months now. I knew the last time it wasn't working but they wanted to try again. When lock down happened I was struggling. Every day I was getting worse. Managed to get an appointment with consultant and she gave me a steroid jag in each knee. The one in the bottom sometimes doesn't work. Rituximab will be out of my system in July God knows what I shall be on then.

Oh, I feel for you Vinnie. I started on Sulphasalazine. Did,nt work. Put on to Methotrexate & was much better but did,nt entirely hit the spot so Hydroxy was added beginning of December. Felt absolutely fine in March but had developed a lump on my neck so that’s been tested. Non malignant. Hurray. Then I went for a walk about a month ago & took about a fortnight to get my feet right & now it’s aches & pains all over. Rang the hospital on Thursday & waiting of a reply. Absolutely can’t do without the Naproxen but had a nasty incident one night & sure it was to do with my kidneys. Want to try another drug & would kill for a steroid injection. Just hoping they will get back in touch soon.

Hi Sheena hope you get your jab there life savers aren’t they feel like anew person ? I’m ringing mine to see if they can sort me my kidneys aren’t great either ckd stage 3 but I believe people go around all there life with stage 3 and never know so I’m cautious what meds intake that go through the kidneys as well naproxen’s I think are absorbed via the kidneys.. but I’ve had to take with this covid been delaying seen me .. exact same when I go the shops I’m hobbling around just want the old me back grieve for that person who could run up and around everyone .. when you sit seize up my knee are bad now as well feet are unreal. Hope you get your sokn be like bionic woman . X

I'm so sorry to hear this Vonnie10, and like a few others have said I'm in the same boat too. I started tocilizumab nearly 6 weeks ago, so early days yet, but the side effects have meant the frequency of the injection has already been reduced from weekly to fortnightly, with no positive impact so far.

20 mgs oral prednisolone each day keeps me going. I do hope you are seen soon.

Vonnie10
Vonnie10
in reply to Mmrr

Hi M I’m going to have to insist on oral steroids I think this is now 4 years and it’s getting worst .. sick of all the drugs and trails and errors.. just give me the steroids now.. hope you Tocz works she mentioned that on my last visit in Dec if ritx is given me ocd we can try that how often is the infusion ? X

Mmrr
Mmrr
in reply to Vonnie10

I'm doing sub cutaneous injections of tocilizumab, fortnightly. I asked if I could have a wee break from biologics, just have prednisilone for a short spell, but the consultant was not keen. High dose prednisolone in times of coronavirus without a possible degree of protection from the biologics is something she would not agree on.

Vonnie10
Vonnie10
in reply to Mmrr

Oh yea M I forgot bloody covid I rang 4 weeks ago for a shot nurse said no I’ve just rang back left a message she take naproxen 4 weeks ago but I’m struggling more this typing is even a killer.. so doubt they will give me a shot not right I need something now covid could go on for ages what are we suppose to do ? X

Mmrr
Mmrr
in reply to Vonnie10

My understanding is a shot of steroids does not carry the same danger as daily oral prednisilone, so push on.

Uncontrolled RA is a risk too for coronavirus, a question that might be worth asking. What is the greatest risk a shot of steroids or uncontrolled RA ?

Hi aww no way it’s stopped as well for you can’t cope.. gutted for you.. The first year was good on the joints but like I said I got side effect of OCD my joints were good apart from that I had it in jan this year but it’s definetly not worked this time around devastated feel like I’m getting worst.. can’t. Even get around the shops properly never mind walking on our beach..nightmare think with the touch of ocd overuse but I seize up if I sit catch 22. Need a jab ASAP. Goodluck in July . Xx

I’m so sorry to hear of your pain and understandable frustration of your RD. I really do hope another plan can be implemented sooner rather than later for you and some relief from the pain too.

I am pretty newly diagnosed and had a few good months when started treatment but have had a bit of a difficult few months and in the midst of increased meds and considering changes to meds with a short course of steroids at the moment. I have a telephone consultation with my consultant on the 11th June. I really do appreciate how fortunate that I am in the grand scheme of things though as no bad reactions to meds yet and currently having some much needed relief with the steroids. Only a few weeks ago I was so low though and really was struggling both physically and emotionally so feel so much for lovely people like your good self where the medications are not working for you. For me my biggest daily battles still stem from the uncertainty this illness brings with it. Sending lots of gentle hugs to you. x

Summer you’ve probably got the drug that works I’m happy for you .. possibly the unlucky one on here and your nit one of them .. so stay strong and positive best of luck for you.. keep your head up.. xx

Not quite there with my meds as yet but I do appreciate how lucky I am compared to lovely people like yourself. I try to remind myself of this when my pain, fatigue and swelling is bad. I have been in a flare up for several months but meds increased and new meds to discuss next month depending on blood tests etc. The course of steroids are certainly helping me at the moment. Many lovely people do seem to have such a difficult time and no amounts of medications are helping. I’m so sorry that this is how it is for you and really hope that you get that much needed support from your rheumatologist. The waiting time when the condition is not being controlled is so hard and especially when you have s tried so many medications already. So sorry I am probably not explaining myself to well. Thinking of you x

I hope you get there soon I’m quite sick of it constant pain is dragging me down. I do just get on with it when I sit I seize up and then if I keep moving I’m in more agony is the word I would say catch 22 just feel like I’m moaning I hate it.. summer I hope you get your magical mix of drugs soon.. it’s just not fair. Goodluck. Xxx

I had forgotten how painful RA can be. I was on Sulphasalazine for 17 years it was okay but still had pain and fusings of joints in that time. I thought it was the best to expect. Then the flare up got worse and I tried methotrexate orally and that didn't touch it. I then had the Humira (Adalimumab) plus methotrexate 4 tablets and I have had no more fusing no flare ups, no pain. Now this is what it should feel like, totally painfree and no stiffness. Seems listening to you all that I in the last 9 years on this injection have been one of the luck ones. I wish you all could feel like this and hope you get a drug that gives you a better quality of life. My fusings of some toes, upper foot bones, wrists and one shoulder are the only reminder of the pain I've had in the past. Hope you all find relief soon. X

Vonnie10
Vonnie10
in reply to linmar

Thank you it means a lot that people understand I’m happy you’ve been pain and free xx

Ho. I so know that feeling , I was the same , I tried lots of dmards bandit was when I got daily oral prednisolone and then eventually biologic drugs I started to pick up.

I do think a chat again with the rheumy team to tell them of your pain will help.

Then the GP is probably the expert on pain relief, mine sorted out all sorts of pain tablets until I was comfortable and not sleepy!

I hope you get sorted soon , this period can feel awful and bot really helped by the current pandemic xxx

Vonnie10
Vonnie10
in reply to allanah

Thanks allanah would just be lovely to get just one good day night time seem to be the worst. Xx

allanah
allanah
in reply to Vonnie10

Oh yes, painkillers and a big pillow between my knees was all that helped !

Vonnie10
Vonnie10
in reply to allanah

My knee are the worst I love going to bed just can’t get comfy aww I hate it with a passion . Xx

allanah
allanah
in reply to Vonnie10

Oh feel for you , brufen gel on my knees, painkillers and big pillows were the best I tried x

Vonnie10
Vonnie10
in reply to allanah

They’ve just given me 6 weeks course of steroids hopefully they should sort me I hope and prey gutted the ritx hasn’t worked this time

allanah
allanah
in reply to Vonnie10

It will next time !

It is so miserable when nothing works; I had the same experience from about autumn 2018 till just a few weeks ago when my first Rituximab infusions (Dec 2019) kicked in... relief is amazing after so long!

Don’t suffer; call your Rheumatology specialist and let them know how much misery you are enduring. Gentle hug.

Vonnie10
Vonnie10
in reply to charisma

Thanks ritx worked the first year 2019 but it’s just not doing it this year xx

charisma
charisma
in reply to Vonnie10

I hate it when nothing seems to work.. so discouraging! But there are other options.

My hands and feet are painful again. No idea when next infusions might be due but I can call my Rheumatology Dept and ask.

Vonnie10
Vonnie10
in reply to charisma

Hi charisma they’ve given me oral steroid let’s hope it dampens it all down x

charisma
charisma
in reply to Vonnie10

Hope so! x

Hi Vonnie, been there and done that, after 23yrs of trying all meds I’m still looking for my holy grail. The last 2yrs have been hell with pain and hip surgery that didn’t turn out good. At the moment I’m taking 4mg Baracitinib and been on steroids for 15months also daily tramadol and paracetamol. The Baracitinib is working to a point but not brilliant so I’m wondering what will be my next med as I’ve tried so many. Life with RA is a total pain when there’s nothing to keep it under control. Ask your GP for some stronger painkillers till you have a word with your Rhumatology team as to what they going to do next. Keep well 🌈🤗xx

Vonnie10
Vonnie10
in reply to AngelMar

Hi angel 23years omg I’m just 4 years can’t cope now.. I take dihrocodiene and some naproxen but I think they need changing it’s just not sorting it out. Hope you get some relief soon my god that’s along long time. Xx

AngelMar
AngelMar
in reply to Vonnie10

We’re stronger than we think, and life is so precious. Stay strong! tomorrow’s another day 🌈🤗xx

So sorry 😐 to hear you're in the same boat I'm in....... diagnosis 2011, been on same as you, after 4/6 months I'm convinced like you my body fights back...... keep safe Vonnie 🌈 Lizx

Vonnie10
Vonnie10
in reply to RA2011

Liz it’s so sad I’m gutted your the same as me but at least I know I’m not on my own so sad tho..I’m convinced as well nothing is working everythinko seem to work then stop it’s so stubborn,, hope we get our happy ending soon goodluck Liz xx

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