Onward and upward?

Onward and upward?

Sulfasalazine, Methotrexate and Plaquenil give me severe allergic reactions. Leflunomide holds the disease back but doesn't stop it from spreading so two weeks ago I discussed anti TNFs with my consultant.

I researched both Enbrel and Humira but to be honest I just don't want to move up the chain so quick. I've had some very good advice from a lot of sources (including an Indian rheumatologist on Twitter!) to give up the DMARDs and go for the biologics but you know, I just don't want to take that step right now.

I'm living a fairly normal life, I'm not badly swollen, I'm in pain but it's not unmanageable. Compared to this time last year I'm a new person. Last week i spent a day in the garden doing some light duties. Don't get me wrong, even that took me a few days to get over but I couldn't even do light duties last year so the Lef must be doing something.

My main concern is that the disease is on the move and now affects (in total) knuckles of both hands, right wrist, a total of three fingers across both hands, left elbow, right shoulder, sacroiliac, both knees, left ankles, both big toes, balls of both feet. I've got plantar faciitis in both feet and now I think it's gone into my fourth right toe. It's all manageable, I can live with it but I don't want it going anywhere else.

Foolish I may be but I've decided to give DMARDs one last go. I'm suggesting a mix of Lef and penicillamine. After all, I've only got to wait three months to find out if that works and if not then I'll have no choice but to go for the biologicals. I'm just scared that if Humira doesn't work (and there's a 30% chance it won't apparently) then my choices are becoming ever more limited by the day.

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  • similar situation.. your keeping me from bed lol.

    . sulpha bad reaction.// week in hosp..

    . methotrexate... when dose went up sooo bad.....,not much room for manovure.. here... consultant bloody minded and unhelpful... check my profile... wanted a constructive chat in feb bout meds if feb due to problems....

    silly female... hadnt read my notes and tried... suggesting hydroxyxchloroquine .. again..... aagh.. i have retinal pigmentation from birth.. but luckily eye sight is fine.. and it will be without the hydroxychloroquine... does she ever read my notes.. no!. I ASKED for anti tnf,, she said dont know if you qualify. silly female dog.. !! I qualify.. nice quidelines state two failed dmards of trad type ie the older ones.. equals eligiblity.. didnt study 3 years not to be able to read a bnf(pharm/doc drug gude/bible!!) it was non negotiable to her.., pencillamine then i said.. no she said.. we agreed to differ on gold injections.. though i did point out that i didnt find the sudden death side effect appealing!!!._--for first injectuion.. they keep adrenaline syringe and hydrocortisone syringe handy.. in case you have severe anphalatyic reaction and die.. they keep you there for 30 min and some one had to be with you..I am still alive after 2 test doses and one actual dose.. ha. ha.. and my lovely effiecient gp surgery does these for me with fortnightly blood tests and urine tests.. some people can get good results on this very old fashioned treatment.. takes up to three months... after this or if it doesnt wotk an changing to a hospital out of the area!Q!

  • Hi Alison, regarding the biologics its not just the fact of two failed dmards that makes you qualify by nice guidlines its also your diease activity score that needs to be measured on two occasions usually a month appart you have to have a DAS of 5.1 or above which basicaly means to you have high to severe diease activitiy of your RA if you check out this link it will explain it better than me: nras.org.uk/about_rheumatoi...

    Mine one my two examination dates were 7.8 and 7.1 so I passed and I am now three weeks in on Enbrel, Ive not had an improvement yet but they told me not to expect and improvement untill after a month.

    I am still on Methotrexate but on Monday I change over to the injectable version of it as it makes me sick for at least two to three days a week, I have nausea even though I take anti sickness pills but without the anti sickness pills it was worse and I was physically sick and I also feel like I have the worst hangover ever without the fun!

    Sulfazalzine gave me migranes like crazy. So that was stopped after six weeks of them just getting worse.

    Hydroxychloroquine I was told was not an option for me as I have bilateral posterior uveitis so that I could not risk trying I was told.

    To be honest even though the biologics have loads of side effects etc, I dont care anymore I am more interested in getting at least a little of my life back, I am not asking for miricals just to be able to be able to get bathed and dressed in a morning without help and maybe a few other things without help too, it gets me so depressed relying on others even though my better half and family are amazing.

    Catwoman we all have our own choices but I would try and not think about the 30% biologics dont work for and concentrate on the 70% it does work for Ive had loads of messages of people saying biologics gave them there life back.

    I hope you both get some good results in whatever meds you choose xxx

  • Hi I am on my second biologic I was in so much pain and all the others did not work the biologics are the ones that give you some relief you just want a bit of relief and believe me it is worth it as I was told the longer the ra is not under control it can be doing damage to your joints the thinking now is getting treatment earlier than later when the damage is done, and it is working with me but they do tell you it is not a cure and this is true I still get flares but when I remember what it was like without the biologics it was intolerable it is worth it

  • never had my score measured.. and my hopsital is in funding crisis.. went to a pharmacy team meeting.. just before going offf sick at beginning of march... senior clinical pratt director thats his name lol.. and side kick nick said we must stop the consultants using these expensive drugs .... aaagh.. felt like crying.. tis purely cost.. they announced they have removed cancer nurses to save money ..how sick.. and whlist off letters went out to every one over 65.. asking them to leave.. this was before the new was passed one week ago.....

    when i rang physio.. yest.. had to go through through pals no one answered phone... some one eventually rang back... one physio in for whole hospital.. whose catch must be surely several hundred thousand patients.. staffing when in joined was at 2to 3.000 god knows what it is now.....

  • Hi Pussie

    I can understand you not wanting to "go upward" it must feel like you are getting to the end of the line too quick too early. It's a tough decision. I feel I have had to accept that although not perfect, the 20g of Mx per week has got me to a manageable state and until my body tells me otherwise, I will learn to live with it. Like you say still get some pain (but manageable) and stiffness (a bloody nuisance) and dont know where it will pop up next, but its an inevitablity I suppose.

    I have my akalysing diet which I know is helping because it helps to make the body alkaline. When the body is obviously so acidic from the inflammation and pills, that it helps to reduce the toxicity and therefore the inflammation. It makes sense to me. Don't know if it's any help to you, but I certainly feel better in myself. Yeah I still have aches and pains, but I hope and believe it will help put off any creeping bleeding RA alien from popping up in another spot! Who knows?

    Best of luck... Julie x

  • i m benefiting from change of diet too, courtesy of tia steph.. some choc and alcohol creep in though.. oh well

  • Hi, I've had three lines of anti-tnf, Infliximab-Humira-Enbrel. all three worked well for about 2-3 each but eventually stopped working. I know take Rituximab and am doing very well.

    I understand your situation as I was recently asked to consider a change of Biologics as the Rituximab is not lasting as long as it did, but I feel the same as you I don't want to exhaust my treatments. I have had reactions to lots of my drugs including anaphalectic shock to one so I'm scared of having another reaction and where would I be then.

    I feel that I know my own body best, I know they are the experts but I feel that after 17 years I will know when my treatment is failing.You may well be the same, its a difficult one really because if your not controlling the disease properly that's when the joint damage can occur.

    My RA as never been totally controlled but like you say compared to what I was like I'm coping well and that's how I look at it.

    Good luck with whatever you decide.

    Take care

    mand xx

  • Ah well sounds like we are all rowing a similar boat (shame we're not sailing in a luxury cruise ship!).I can relate so well to you Puss and you Mand. I'm on my second anti-tnf; Infliximab failed after 12 months and Enbrel has been fine whilst taken with methotrexate (stopped last May) but on its own it's not holding up well.

    Rheumatologist wants me to have Rituximab but I feel I don't want to try something new (yet again!) when the Enbrel is working to some degree. I want to try methotrexate again with the Enbrel as I feel the neutropenia may have been a one off incident. The combination worked well for 7 years! I too feel I might be being 'pushed' down a route I'm not yet ready to take.

    Puss, you aren't foolish at all. You have thoroughly researched the options and have come up with a solution that you feel is worth a shot and is acceptable to you; it is your body after all! I think sometimes the emphasis on Biologics has become a bit misguided. In a desire to bring the disease under control quickly many of the very acceptable DMARDS are being overlooked too early in the chain. Consequently people could be taking drugs for life when something less toxic and better understood would do the job equally as well. A worrying scenario ;-(

    Lyn x

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