when will this flare up calm down

the last 9 weeks have been the worst yet two bags of steriods , morphine patches and yet still in agony, due two more bags tuesday and thursday then my new drug 22nd toxilimab infusion just dont no why its this bad ,hands neck knees feel like rocks im 43 i feel like im 103 , i dnt mind bad days if i have a few gud days in between,nothing seems to helping with pain or swelling any advce getting pretty desperate.

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  • God, sounds awfull. Hope the infusion works. Rest, warmth, heated throw, lots of hugs and a good GP....... might help? All best wishes.

    Charlie x

  • I'm sorry Angel I have no suggestions having never been in that kind of state with my RA to date - for which I'm enormously thankful as it sounds terrible. Do you have RA only or other problems too such as Fibro? When do you next see your rheumy? Can only send you my thoughts, sympathy and wishes that it lifts soon and you get some respite. Tilda xx

  • ra gout in my foot irratable bowel, dnt see consultant til april even the doc i saw last week was confused, as to why the steriods wont wrk on me ,they sed all they can do is blast my body with a high dose of steriods again, really hoping somthink good comes out of it, who knows i might be able to fetch my boys frm school one of these days somthink i miss so much,cause at the min feelin much worse than i did when i first had it 6 years ago the day i gave birth to my gawjus boy,my new treatment will be my 9th diffrent treament as i seem to have bad reactions wen i have infusions so fingers crossed as ther running out of treaments for me (

  • So sorry you are feeling so bad, maybe you should try see the rheumatologist asap, not right to be in this state, hope you feel better soon.

    Gina

  • Definetly see your Rheumatologist immediately! Are you not taking any kind of pain meds either? That's a tremendous lot of steroids to have them do nothing, perhaps you would do well with some DMARDS, as Methotrexate, leflunomide/Arava, Sulfosalizine, etc. There are many that might work well to help the steroids work better. The Rheumy will surely have some answers.

    All the best, Loret

  • Angel like the others i don't know what to say to make life easier for you. As others have said see the consultant asap.

    Am sending you my love.

    sylvi.xx

  • I agree with above you must try and bring your appointment forward. Are you taking max dose pain meds? If so your gp may be able to prescribe something different to get you by. Sending you hugs and best wishes. Take care xxxxx

  • Hi

    You sound awful, keep pestering your rheumy team, they should be able to do something. It's not right that you are in so much pain! Good luck with the infusion - hope it works for you this time round.

    Hope you feel better soon!

    Sci x

  • Do hope you get some relief soon it sounds miserable for you. in hoping the further steroids and infusion will start to provide some relief x

  • thanku all so much for your kind words really does help talkin to people who no what the pains like, woke up this morning with sore throat ill have to see if i can still have the infusion of steriods , yes treesha im on cocodamol naproxen my morphine patch i use to take arcoxia that was good the gp stopped it saying it wasnt good taking it long term . i can only tolerate methertrexate 7.5 so i suppose that dosent help,really in need of my hair done but the pain in my neck is so painful, just so i look like my boyz mom not there nan lol pj day agen today one gud thing ive learnt its not as painful if i cum dwn satirs backwards so i dnt have to bend my knees so much, not helping my back heal very gud though had discks removed 11 weeks ago,im really gald i found this site carnt move hands well so my daughter types for me bless her ,frm being such a house proud person to goin mad wen i see all the things that need doin im sure ill be cleaning and painting soon thats all that keeps me goin.xxx

  • Hi Angel,

    I have been in a similar state for a year and was getting very fed up with pain every day. I pestered my Rheumy so much that last week I got steroid systemically and into my shoulder and they started me on morphine but also a drug often used for depression but in smaller doses it can help chronic pain called amitryptalline and after just one week I am actually starting to feel a bit better. I also have Enbrel weekly injection and sulphasalizine after the whole take some drugs and see what works. I got lots of steroid infusions this year which they said might help the pain but also they wanted to reduce joint damage as much as possible, so I often thought they didn't particularly help me with my pain but hope they are helping me long term

    So maybe u could ask about something like amitryptaline as its meant to help your muscles relax and ease the pain, hope this helps.

    Axx

  • ello allanah i to was on enbrel wrked well then after 4 months had a reaction doc have put me on diazapm .not really noticed any change i went yesterday for steriod infusion half hour through it had a reaction it was stopped.should of had another one thursday but all ttreatment put on hold im really fed up ,it just sems my body fights with all of the drugs

  • Hi Angel,

    You are having a really rough ride with this illness aren't you. I can understand a lot why you are fed up and Just read about your steroid reaction. It does look like at least you are trying lots of different options and as everyone on the site keeps saying we have to believe there is light at the end of the tunnel.

    When I had reaction to drugs they often load me with steroid before the drip but that wont help you I dont think!!! They might be able to give you a piriton type drug by injection before giving steroids slower or something to help your body not fighting everything thrown at it, but I always think its odd that our immune system over fights some things but you pick up a chest infection just like that!1 Wierd isn't it.

    I really hope they get you sorted out quickly though cos it just breaks your heart to feel bad when you are just young and wanna go do stuff. Pester the Rheumies, they might wanna give u a break to recover( that is what they did with me and my Remicade reaction) and then you might feel stronger to fight another day.

    thinking of you

    Axx

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