Well, I just received my blood work results in the mail, and they are different than I first posted. My CCP level was extremely high at 138 (normal 0-5), and my CRP was 12.2 (normal 0-5). SED rate was 32.I was asking if I can be in remission with those bad reports. As I said before, my X rays showed mild progression. I have been off Humira for almost a year due to chronic infection. I have also developed Osteoporosis due to long-term steriods, meds. etc. I have 3 fractures in my back, but they aren't bothering me too bad.
I don't want to start taking any of those meds again unless I have to. My question to my rheumy was "Can RA be doing damage without me feeling it?" By reading many of these posts, my guess would be "Yes." I REALLY DO NOT want to start taking those drugs again!
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Mary58
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HI Mary. I really don't understand why you are so fiercely against taking new drugs? Please can you explain a bit more about when your RA started and why you were put on steroids for a long time. To my knowledge the drugs aren't such an issue with regard to Osteoporosis as steroids are and there are drugs such as Embrel that are meant to be very effective in delaying or halting the progress of the disease.
I too am quite phobic about drugs, and having taken steroids internally and externally (skin) for much of my life I don't take them or pain meds now at all unless I absolutely have no choice (very rarely). However I do take Methotrexate and have been lucky so far that it isn't giving me any side effects I can't live with and also appears to be working well. My inflammatory markers were never nearly as high as yours and I had a negative anti CCP result but I still take seriously the impact that RA could have on my joints if I don't. Are you on any medication for Osteoporosis - I believe from a friend that there is also a rather unpleasant drug regime for this disease? If my rheumy felt that I should add in another drug to minimise the destruction of RA I would do so because I've read a lot about RA now and know that a combination of DMARDs is considered more effective than one on it's own. Tilda
Hi, I agree with everything Tilda says, and yes any of the more serious forms of arthritis can continue to do damage even if we have little pain.
I hate taking my meds, but I also understand my consultant is looking at my long term health and what condition I may be in in 5-10yrs if I stop them.
At the end of the day it's your choice whether or not to take medications which, can help slow down or even halt the disease, no one can force you to take them.
Those results really do suggest that somethings up. Maybe you're not feeling pain and inflammation now, but there must be some reason for the high results. I can understand that you aren't keen on the drugs, but you do need to keep going back to your GP and Rheumy to get a better explanation of what's wrong and what the options might be with and without drugs so you can make a well informed decision. Essentially the choice could well be drugs today or disability tomorrow, but only you can decide. Polly
Please, Mary, get an explanation and consider taking what they offer you. The damage can happen without us knowing - I seem to have so main various aches and pains that I sometimes wonder what's the RA, the OA or the ageing process!
I have had something for 15-20 years. Started seeing rheumy 15 years ago & fist diagnosis was Fibromyalgia. In 2006 my RA test was positive & crp & ccp was over 200. I had already been taking Prednisone for years but they immediately put me on Methetrexate. It made me very sick, lost a bunch of hair & got 7 cavities. They determined it wasn't helping so I went on Humira & it made a huge difference. I started feeling normal again with very little pain. Last year I got an infection that lasted 10 months. I would take a round of antibiotics & 2 weeks later would spike 102 fever & each time getting worse. They had to take me off of all meds 11 months ago & I have never felt better. My recent lab reports were bad with ccp of 138 & crp 122. I still feel pretty good & do not want to go back on those big drugs for fear of fatal infection. Dr told my RA was so sever only biologic DMARDS will help. I also have Osteoporosis with 3 fractures in my back. I am trying to treat that with natural supplements becuz those drugs have terrible side effects too. I really don't know what to do
Oh yeah Lupus test has been positive twice but they don't think I have it - just RA & Fibromyalgia.
Poor you Mary it does sound like you've been through the works and I can now understand why you are so resistant to the thought of new drugs. It really has to be your call if you are feeling okay just now. Can't advise you sorry. TTx
What I'd suggest is that you go onto the NRAS site and look at the info about all the different drugs - DMARDS as well as biologics - as there are a range with different possible side effects and risks. And then see if you can discuss options with your rheumy, with you able to ask more detailed questions about what might feel more comfortable for you. For example if you're worried about infections then maybe try another DMARD. But also carry on with all the sensible things you're doing to treat yourself naturally with good balanced diet & exercise and so on. Even if you feel great now, it would at least be good to have a Plan B ready just in case (and often once you have your plan B it's never needed!).
mary, i am typing left handed only, so can't use thr caps key just gothome after surgery on 3-12' i am prime example of what RA can do when not treated soon enough. there were no biologcs available 20-30- years ago, now the destruction of cartilage in wrists and spine anf feet is etensive,
if all you have t do is swallow a pill every day, an/or once a week, isa small price to pay, to avoid what i am dealing with right now,
your rhemy says biologics are the only way to go, then i say, go for it. all yhat means is ususlly a needle stick, once a week.
then you would have peace of mind, knowing you had done all you could to avoid any further damage, that could prevent you from doing anything you want to do. loret xx
Ah Loret you say it all - even with one hand. Good recovering now please! TTxx
It is not as easy as just swallowing a pill. They make me sick and caused me to have a near fatal infection! I am still thinking and praying about it. I have another appointment in 2 months and we will make a final decision then.
Thanks for caring and I hope you get better soon!
Just because one drug does this to you Mary it doesn't mean that another will. I can see why you are so scared after what the last one did to you but for most people it is just a case of taking pills and then coming off them because of much less terrible side effects than the one you experienced or because they just haven't worked. Each person is different and has a different tolerance to different drugs. Maybe a different biologic drug wouldn't have the awful effect that you describe. Many people here are on the drugs you're so scared of and for some they do work very well - but not many on here have had the bad side effects you mention so maybe you were just very unlucky? TTx
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