Posted 1/11/2015 4:11 PM (GMT 0)
Hi Ozzie and sorry to hear you are in so much pain.
I would recommend keeping a daily log or journal of your pain levels, joints affected etc on a 1-10 scale as well as fatigue levels and sleeping patterns. Take this with you to your RA doc. Also, take pictures when you are having swelling and show them as well. Many times by the time we make it into the doc our symptoms have begun to subside unless we are in a bad flare, everything you can document to give to your doctor will help them to treat you properly.
Also, if you are especially flared up and need to see your RA doc make sure to ask them if you can fill in for any cancellations. I have used this several times to get in when I was doing poorly and it helped not having to wait so bloody long to see them.
Get yourself a sleep aid and take it when you can not sleep. Fatigue is one of the things about this disease that has been especially hard to deal with. It is an endless cycle for me of pain, exhaustion, poor sleep etc etc etc. sleep aids help or have for me at least.
So far as meds many of them can take up to 6 months to reach their full effectiveness. This is a pretty hard thing to deal with when you are feeling horrible. For me I have experienced this and for instance methotrexate took thet full 6 months for me to feel relief from. It has been worth it though as it in conjunction with other meds has helped considerably.
So far as prednizone goes my experience with it has been very bittersweet and I would caution anyone taking it to be very carefull when taking it long term. It caused a slew of side effects in me that have been quite literally hell. Short term it works great but I will never again use it for longer than a few weeks due to the side effects. Many take it and don't have such a severe reaction but for me it is a poison.
Most of all try to stay in good cheer. I know this is easier said than done but as a man depression has been a very hard attribute of RA to deal with. Pain, exhaustion, the loss of lifestyle and physical prowess has been a very long and arduous journey over my 20 years living with RA. Keeping a good attitude through it all will serve you well. If you are in pain ask for pain meds. If the RA doc has issue with it ask to see someone at a pain management clinic. There is absolutely no point to suffering with this.
I hope you find relief. Remember, you are not alone in this.