When my rheumy told me on our telephone appointment, that he wouldn't be able to examine my painful knees and legs until six months time (due to NHS rules), I decided to pay for a private appointment. It was then discovered that I have arthritis in both knees and would need to continue with Leflunomide but also, to go back to taking 5g Prednisolone. Once I'd had an injection in my knee to release fluid (crystals calcium pyrophosphate) and a steroid injection, I've had considerable relief.
However, I can't get back to my old sleep patterns. Does anyone else wake up at midnight and mistakenly think they've slept all night? Do you walk around your sitting room: experiment with seating positions on the sette? Lie in bed with your eyes closed and wait for sleep. Or do you just watch the clock hands move?
Any possible solutions most welcome.
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43tripandskip
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Can't help with the sleep - but do you take calcium supplements? If so, did they suggest cutting them back a bit? You wouldn't be the first person on the forum to have developed psuedogout because of calcium supplements.
Apparently, the problem lay with stopping the prednisolone about 5 months ago. With after thought, I should have continued to take prednisolone and Leflunomide together, but communication on the phone was tricky and I misunderstood my rheumy to want me to stop pred and continue with Leflunomide. It now appears that the lack of pred has allowed the separate knee problem to arise, that is why I'm back on pred. I'm not sure what role Leflunomide has. I will have to ask when I have my next NHS appointment. Incidentally, he said nothing about calcium supplements - that's another question to ask him!
jinasc had psuedogout (amongst other things) because of her calcium supplements. Things did improve once she stopped them - but not before she graduated to gall stones and the relevant op!
Good morning, if it turns out to be Osteoarthritis (OA), then this may be a scenario that you have to come to terms with for a while. I have been managing my OA for about 30 years now and one the first things I came to terms with was the problem of finding a comfortable position to sleep or even rest. Staying in any position, whether it is standing, sitting or lying down for any length of time becomes uncomfortable at best, painful at worst. Lying in bed worrying about it just makes you more stressed. I would get up, move around, read a book, make a drink hot chocolate or milky drink is often good, watch tv and generally try and relax. It's a good time to catch up with family and friends in far-flung parts as well. Can't comment on leflunomide but if you are in pain the only things that worked for me were Naproxen (you can't take that if still on any steroids) and Co-Codamol. Sorry, if this is rambling a bit but the biggest thing is to accept that this is how it is going to be for the moment, find out what what works for you and not to worry about it.
I'm really pleased to say that the pain I had was prior to having my knee injected. Since he removed as much fluid as he could, I've have an almost pain free ability to walk a little. So hopefully it's not OA. It's just incredibly sad that patients have to wait for such a long time in pain until they can get a face-to-face with an NHS rheumy. Thank you for your really helpful information.
Thanks! It really is wonderful to experience less pain! I won't say that you ever get used to pain, but when it's with you all the time you find ways of living with it as a very unwelcome guest.
To be blunt and not trying to be a wise guy, I rely on drugs. Drugs for my OA in my knees and hips (when needed) and for sleep when I go too long without a good nights sleep. Norco, Ibuprofen, Tylenol, Advil, meloxicam I’ve tried them all, take a dose before bed. Also have Xanax on hand but only use sparingly for sleep aid. Smallest amounts that work.I was much more cautious while on prednisone with the nsaid use now I’ve tapered off (3 years) . I don’t like to use drugs but I also dislike pain.
Yes, it looks like distractions are helpful. I've just started to go through the alphabet and name 3 girls' names. But I got stuck on U (I can only think of Ursula!) it helped to put me to sleep for a bit!
Have you tried Poppy seeds, they are quite good for a good night's sleep, I am sure you can get them from an Indian Grocery shop, dry roast them, put some milk in them. Have you heard of Fox Nuts( Makkana) can get them from there as well. Boil the milk and have it 30 minutes before bed. You can look on you tube as well.
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At long last I can sleep!
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GCA False alarm! How quickly can I reduce pred?
