I have severe RA and since it started two years ago my taste sense is also out of whack. I just live with it. I know Pednisone will do this but also RA. If you can get off Prednisone things may improve a lot. MikeView Thread
Hi There My RF reading is 1032, yes 1032. RF readings are general readings about rheumatoid activity. The other blood results are much more important. I also have Fribo and the dry mouth/eye disease with a funny name. Welcome to the club! Forget about the gold shots. There are a variety of powerful and new drugs around. You will be OK but it is very important that you have a rheumatologist who you see regularly not just a GP. Go on an anti-inflamation diet, exercise and modify your life to fit the condition. RA is a total pain ............ be positive and smile. MikeView Thread
Yes, I have had severe RA now for almost two years. I take Humira and Arava as the big guns. Much of the swelling has receded and about 50% of the pain. I am disparately trying to reduce Prednisolone and Oxycontin but I still have fatigue and pain. I think the chronic pain in itself has become a disease as my bloods are good. My specialist has suggested that I have Fibromylagia as well and this explains the rotating pains. You must address your pain otherwise it may well lead to bad depression. Talk to your doctor and ask him or her about 1) mindfulness meditation, 2) drug based pain control and 3) exercise. Best of luck. MikeView Thread
You asked some other questions. You probably should not be having the level of pain and type of symptoms if you are taking your meds correctly. If you are taking them then perhaps there are two other explanations. The first is that Embrel has ceased working and the second is that you may have another condition as well. For example, I have severe RA and Fibrolmylagia. Your specialist needs to run your bloods in some detail. I too lost hair with methotrexate but have replaced this with Arava so now the hair grows. The other thing that you need to be aware of is that chronic pain itself can be a condition/disease. I am currently having a battle in this space. Sounds like you need to get a referral to a Rheumatologist. Best of luck.View Thread
I really did not know what real pain was like until I came down with RA 19 months ago. I am rated as severe and now also have Fribromylagia which is just as painful. The trick for me runs via three vectors. The first is to control the pain so that I can sleep at night. This minimises depression. The second is to learn pain control meditation. This works 50% of the time. The third is to do mild exercise. A good walk, a cycle ride or a little gym. I am currently caught in a massive flare and have been to hospital but it always comes down to the same thing - controlling the pain.
The "pain toll" on the patient is often depression but the toll on my wife is huge too. She has little choice but to sit there and watch, feeling very helpless. My wife is very concerned about the future. There are no medications for her. We need to care for the carer! MikeView Thread
I know exactly what you are going through. I am 58 and have had severe RA for 19 months now. What An_246765 says makes a good deal of sense. I would add the following. The first year will be hard and confusing. Once your doctor gets you reasonably stable things will improve. I suggest that you TAKE CONTROL of your RA by changing your diet, taking your meds, researching your condition, take up meditation and your must do regular exercise. I would replace wax treatments with a goos pair of gloves.
I have been through all the conventional drugs and they all have negative impacts. I am now on Humira and Avara and am now much happier although flares do happen. Looking back over 19 months I would say that the medications are key and so is exercise. Diet change helps to minimise negative drug impacts and meditation helps with pain control. I have been on Oxycontin for pain all this time and am now trying to get off it.
Feel free to contact me if you need. Yours from Sydney Australia, Mike
Hi Everyone. I have been taking Prednisolone for 18 months now with a dose range from 40 mg to 4.5mg per day. I have tried ten times to slowly get off the drug but when I get close to 5 mg things seem to go wild with flares and pain. I am currently on 10 mg along with other drugs like Arava and Enbrel. Does anyone know:
1- how to replace Prednisolone with a substitute less harmful drug?
2 - how to break the 4.5 mg barrier
Prednisolone and its friend Prednisone is an awful drug with very nasty long term side effects. Thanks, MikeView Thread
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