Have my diagnosis, its primary osteoarthritis

Well at last you now know.

I would talk to your GP seriously and ask her if she knows aoout primary osteoarthritis, I doubt it and then find the best Rheumy who specialises in it and ask for a referral to that one. They are all listed on your hospitals and they generally have what part of rheumatology they specialise in. They all do general stuff but also have a particular interest.Good Luck snaggler.

hi snaggler so glad that you now what you have, hope they can get your pain control better the drug you mentioned is not known to me but i looked it up its not without its problems so read the paperwork carefully . also take care coming off steroids i know you want to see the back of them but it takes time to come off them ,good luck with it all and keep in touch carolk

I walked my son to school today with less pain then I've had for over four years. The drug is amazing. The headache is gone too. It is called Lyrica and it is for nerve pain and seizures. I still have some pain but the grinding pain in my hips and back is gone. The pain in my neck and leg are still there but at a tempo that I can handle. I slept better then I have for decades last night too. I have sub-clinical hypethyroidisum and they want to keep checking it for awhile before they start any medications or treatment. I also have an eye infection in both eyes. On antibiotics for that now. I lost 5 pounds this week just from going down on the prednisone. Thank goodness. I need to lose alot of weight, 125 pounds approximately. I shrunk. I use to be 5'10" and am now 5'7". Crazy! The Lycria will help with the migraines and i woke up without a headache today which is good. I am starting to think I might have a half decent life now with this new drug. Thanks ladies and gentlemen for all your replies and support during my testing phase. xoxo

Snaggler

Wow! Wonderful news - you so need a break from all that pain. Slowly with the steroid reductions though. Look forward to hearing more good news from you.

MrsO

I'm so glad you finally have a doc who has got it together. Your GP needs a lesson in humility - yet another who thinks they know it all and unable to admit maybe it's beyond them when their first idea doesn't work. The main thing in PMR is to rule out other causes if things don't pan out simply. Funny stuff Lyrica but when it works it does seem to do it properly!

Do keep in touch and let us know how you get on.

Eileen

I spoke too soon, today I am in horrible pain and I have no idea why. I think the drug helps but not enough yet. Time will tell. My GP will not do anything about the thyroid as it is sub-clinical hyperthyroidism. I have a growth on the thyroid and she refuses to believe it is there. I can feel it and so can all my family members. I am very fed up with her. Getting a doctor in BC is hard and you pretty much have to settle for any quack that comes along and accepts you as a patient.

I am getting the PMR symptoms back. My shoulders, neck, hips and buttocks are very sore. Different then the pain the grinding bones makes. I would not be surprised if I have it, problem is I cannot take the prednisone anymore regardless due to what it does to the CLL and the osteoarthritis. Man!

Oh dear Snaggler, how disappointing after a seemingly good start on the Lyrica. Perhaps it's just steroid withdrawal symptoms, but best to see what your Dr says.

MrsO

hi the first thing that crossed my mind when you said you were reducing so quickly was there is a price to pay and like the other responder i wonder if its steroid withdrawel however much people want you off these drugs coming off so fast is going to send your body into turmoil discuss with dr and decide how much you and your body can cope with ,in a way i hope it is just the body saying hey whats happening rather than pmr its enough to cope with oa and all your other problems with out going through is it isnt it ???? all over again keep talking to the professionals make them listen thinking of you carolk

Snaggler

If it does turn out that you do have PMR and you cannot take Pred, there are a couple of other drugs that can help. Your GP should know that. Nothing is as good as Pred for PMR.

Well with each time I go down a pill I am in agony. My pain is getting worse and worse. I know it is probably just withdrawing from the prednisone but it hurts. I have to go off all anti-inflamatory drugs that are steriod type due to the CLL. So I am going to ask about pirocxicam and naproxen or sulindac. Those are non-steroidal types. I might even ask for viodin right now because I am in serious pain. The CLL is not stopping, it appears to be getting worse and worse so I hope I just get treatment for the luekemia and then I can get on with treatment for this arthritis because they are both kicking my A$$! My doctors do not think I should have all this pain with the osteoarthritis but I do so explain it. It has to be something more. I am not going to let them just give up on me. My nails have dents in them which were never there before and I did some research and only serious systematic disease will cause that. There are numerous ones to choose from, I don't want any but I would rather know then not know. Either way, I am not done yet. The pain in my shoulders and hips has increased ten fold this past while and it sure the heck feels like PMR.

hi i hesitate to reply because your problems are so complex so i thought i i would try a diferent tack and tell you whats happening to me because sometimes something others have tried may help .first of all i dont know some of your names for nsaids but they are not without there problems and if like me some of them make you ill its difficult to go that route .i have oa in my shoulder and pmr i always want to qualify this because i am one of the awkward few who did not jump through hoops on steroids and continue to have poor pain control despite various changes both higher and lower doses. i took paracetamol 2 twice a day also went the codeine combos nothing made a difference but i noticed on the days i took my usual meds for headache the pmr pain seemed easier this med equated to 1 paracetamol and 2 /300mg of aspirin and i would be the first to urge caution taking aspirin i also take omeprazole anyway to protect my stomach from the steroids ,i talked to my gp and we decided it was worth the risk several days ago so i took the aspirin and paracetamol each morning it may be a fluke but for the past few days things are much easier and i have even done some chores that were impossible last week ,this may just be a passing blip but a nice one all the same and there is some logic because aspirin is an anti inflammatory not used often because of the risk of gastric bleeds .please do not try this without medical advice because it may not be viable in your case ,just wanted to share my experiance because up to now nothing had helped me .i wish you all the luck in the world you sound at your wits end thinking of you carolk

Today is the first day in four months I am without prednisone and I feel pretty much the same. SORE. The doctors wanted me off it as soon as possible. Every three day down 5MG. It was their call. I am pretty sure the original diagnosis of PMR was correct. All the symptoms that originally sent me to the doctor are back. Today it took me 15 minutes to get out of bed. I am going to go lay down again as I just got a cold and my neck and head are very sore.

well you have done what they asked all credit to you for complying to their request ,i am not surprised you are in pain i hope all this discomfort will be worth it ,what is their plan now you have come off??what ever they decide to do good luck you have certainly had a rotten time and i hope they appreciate how difficult this has been for you regards carolk

Snaggler

I've been wondering how you are getting on. You are bound to be in pain, even if it is simply down to steroid withdrawal pain and not the pains of PMR. I do so feel for you and hope you are keeping in constant touch with your doctors so that they can see exactly what you are going through. All the very best.

MrsO