Devils Own Disease

jacqmun

I joined this forum in 2011, and found it really helpful, as having been diagnosed with RA I was hungry for information.
I have suffered side affects from every drug prescribed which really sent me in a downward spiral. I had visions of my 'old self'............huh!
I was due to start Humira but had to have osteotomy to 3 toes so it was delayed. The Humira is still lurking in the fridge amongst the Muller Light and Trex.........it can stay there for as long as it likes.
I truly believe that I have been in denial of RA, thinking I could beat it...wouldn't let it change my life, still do I suppose?!?!
I am not taking any more drugs, just pain relief.
I raise two fingers to you RA, do your worst!!

dreamdaisy

Hello again, I remember your name, it has indeed been a while since we heard from you. I am so sorry to read that you have been having such a tough time with the meds, they are not easy things to get on with at times.

Many people struggle with acceptance of their new situation (we used to have quite a good thread about it but thanks to various posts being removed it's not too fluent a read now). Denial will not, unfortunately, change anything in the way the disease behaves and it won't be doing you any favours. RA is a pernicious disease and as such requires pernicious meds. It can take time to find the right combination to ease the worst of the symptoms, and the adjustment to the meds is sometimes more of a battle in itself than the disease, but they are the only way we have to slow the progression of the disease and the accompanying joint damage. Hopefully you will be able to find the courage to try again because joint damage only brings more trouble. I wish you well. DD

villier

jacqmun wrote:

I joined this forum in 2011, and found it really helpful, as having been diagnosed with RA I was hungry for information.
I have suffered side affects from every drug prescribed which really sent me in a downward spiral. I had visions of my 'old self'............huh!
I was due to start Humira but had to have osteotomy to 3 toes so it was delayed. The Humira is still lurking in the fridge amongst the Muller Light and Trex.........it can stay there for as long as it likes.
I truly believe that I have been in denial of RA, thinking I could beat it...wouldn't let it change my life, still do I suppose?!?!
I am not taking any more drugs, just pain relief.
I raise two fingers to you RA, do your worst!!

Hi

I am pretty new to the forum, it is OA I have but have a very rare neurological disease which I have had for 9 years, like yourself I had extremely bad side effects on every neuropathic pain drug available up until a year ago when I was tried on 3 weekly infusions of immunoglobulin which helps keep my pain bearable at rest, to me that is a big bonus, there will be something out there that you will be able to tolerate, maybe the humira, you don't know till you try, I know how you feel so don't give up hope, we are all here to support you all the way, good luck, keep in touch............tc..............Marie x

wynnie

hi there ,im like yourself used to be on here quite a lot then lost my log in details ect when i changed to my laptop but im back as well and im the same as yourself ,probably in denial and hate all drugs its my walking ,feet and legs cause me the most problems ,ive got neuromas on both feet ,already had them removed and they are back and do have joint damage in feet and hands ,wish we could just wish it away ,yes it is a disease of the devil and its a shame we have it,wish we could wave a wand and be rid ,to be honest i dont think the ignoring it will work though but we can always dream x

dibdab

Hi, Just wanted to say sorry that you're struggling with all the meds, they do seem to knock us all about to a greater or lesser degree, but I'm with DD in encouraging you to hang in there and persevere until you get the best combination for you. I look back and remember how disabled my grandma was by RA in the days when the only treatments they had were aspirin and gold therapy- and the evil side effects she suffered from those drugs 50 years ago. as I reflect I am determined to keep persevering and attempting to go forward because I don't want to end up as she did.

It might help to use this site regularly to tap into the wisdom, experience and encouragement that so many offer here, it has certainly helped me through some tough stuff.

Wishing you well.

Deb x

trepolpen

jacqmun wrote:

I am not taking any more drugs, just pain relief.
I raise two fingers to you RA, do your worst!!

think a lot of us wish we could do that , those of us with severe rheumatoid arthritis that will get the joint damage regardless what drugs we take , & just wish we were like those that just need to take a few pills & dont end up crippled up

RA will do joint damage & when its done there is no going back

barbara12

I am sure most of us know how you feel right now...I go from one extreme to another....but at least you are talking about it...I am so sorry the meds aren't working well some of them it sounds like the others are staying in the fridge..try and read the positive post that are on here from people with RA..I do wish you well with everything....and don't forget we are always here...xx

joanne66

Hi, just started my 3rd year with RA, i'm on metha and hydroxychloroquine (got the packet next to me or that wouldnt have been spelt right lol) without metha i'm disabled!..... with it i have a Good quility of life....
i dont know what the future holds for me,but i remember my Aunt with RA 40 years ago being crippled, i want more......so i'll try any drug they give me!
hope you find something that works for you to give you back a goooood life
jo