Hi there. I am writing from Sydney Australia and your story is similar to my own 3.5 years ago. Hang in there, things may get worse but they will definitely get better. I have had to give up work but it has taken almost three years to become more-or-less stable. I was seeing four rheumatologists at one stage and one GP. Typically, I had a clinical visit/test/session every week. Was also admitted to hospital seven times.
Yes, I have taken Plaquenil but it did not work. Usually and inline with your blood results you progress through a series of drugs. The aim is to stabilise your condition, limit inflammation and minimise drug side effects.
Pain management is key to avoid depression. Be very careful here and do not try an be a hero who just tries to rough through it. Madness if you are a severe RA patient.
Some other quick and hopefully useful observations: - learn about drug-to-drug interactions - if you are using Prednisone get all salt out of your diet - try an become semi vegetarian but eat fish - exercise regularly, even a little bit - watch your pain levels - yes, avoid alcohol most of the time, then only a little - make sure you sleep well day or night but get 8 hours - research food-as-medicine - consider mediation
Interesting comments and I would like to read your blog. If you don't mind could you let us all know: - if you were formally diagnosed with RA by a specialist - how severe were you at your peak - what were your main two or three drugs before you started experimenting.
Sorry to probe but this gives the rest of us some kind of baseline. I find there is great difference in outcomes if someone is mild to moderate versus moderate to severe.
Hi there , I hope you are dealing with a rheumatologist as a first step. Metho can certainly knock you about and some people find it too toxic. RA is associated with high levels of fatigue. Your RA may be active in other areas besides your hands hence being in the care of a specialist. Try and exercise in a warm pool, remove salt from your diet and work at lowering your Prednisone dose as much as is feasible. It took me 30 months to go from 40 mg to 4mg. All the bestView Thread
A group of us are building a website dedicated to rheumatoid disease, JIA, lupus and their carers. It will be ready in January 2015 and will feature SMS group chart, video chat and 18 odd other features. Support us by joining this fee not-for-profit venture www.dragon-claw.orgView Thread
I was on Enbrel for about a year when it suddenly lost effect. Went to Humira and am now on Actemra and Methotrexate. In my experience all biologics seem to have a range of side effects that come and go and change over time. These, for me, range from rashes, dry skin, strange urine among other things. Actemra is good but who knows what happens. Metho gives me awful nausea for 24 hours even though I inject it. My current side effects besides the nausea are dry mouth and strange pains. If you have Big Bad RA then I suspect these side effects are just part of the show. If I remember correctly, Enbrel did cause mild mouth sores so I would suggest talking to your specialist about changing the dose or thing up another biologic. All the best.View Thread
May I suggest you get your GP to send to to a specialist such as a rheumatologist. There are a number of RA blood markers which all indicate inflammation levels. From what you say, you may not have RA but there are a range of other possibilities. All the best.View Thread
The Latex Test is the the same as the RA Factor Test. My own current reading is well over 1,000 IU/mL. I wish I had yours. The test is a general reading for the level of inflammation. It is not specific and is not given a lot of focus by rheumatologists. You seem to be having flares. This is common. If blood tests are run during a flare you may get a higher result for some or all the various tests. Your Latex Test is just too general to be really useful. I am surprised you Rheumy offered you the big drugs without trying Methyltrexate. Hope this helps.View Thread
It is essential that you see a rheumatologist, a medical specialist and not just a primary care physician. Early aggressive treatment is needed if you do indeed have rheumatoid disease. Improve your diet and exercise lightly. There is a lot more information available but getting a clear diagnosis is essential and that will involve blood analysis. All the best.View Thread
You are not in a good mental or physical space but things will get under control. You must have a specialist rheumatologist as your doctor if you are severe. I have whole body severe RA and it has taken over two years to stabilize me but now things are much better. There is hope but you need to eat well, take your medications and have gentle exercise every day. All the best.View Thread
I have been down this road and am now on an infusion. Prednisone is a terrible drug and you need to get off or reduce dose within a year or two. I was on 40mg for 85 days and lower doses for 1200 days. Now on 4.5mg but that is still too much. Re diet and Prednisone I suggest you remove all salt and eat little meat. You really need to exercise - walk, swim, ride a few times a week. MTX can encourage eating due to nausea. ask you doctor about injectable MTX. The first two years can be awful but working with a good rheumatologist things will improve. They have for me. I am not fantastic, can't work but am much more stable and comfortable. All the best, MikeView Thread
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