went down to 35 mg today and holy man

dear snaggler you seem to be betwen a rock and a hard place there is no way you can reduce at that leval and not feel the effects wether you have pmr or abc def hij !!!! reducing steroids is always difficult and inevitably not only do you get mood fluctations but symptoms can get worse , its not my place to stay stick with it or tell them no way can only suggest you keep in touch with the dept telling you to reduce so quickly and shout loudly if you need their help .thinking of you carolk

Oh dear Snaggler

It's going to be so difficult to judge whether you are experiencing steroid withdrawal symptoms or PMR itself as the pains can be so similar. If it is steroid withdrawal, then the pains normally subside after about a week as the body adjusts to the new dose, but as you are planning to reduce again next week, then it's going to be almost impossible to judge. Make sure you keep an updated list on the computer of your dates, doses and exactly how you feel at each level so that you can present it at the appointment. Do so wish I could help somehow but can only say just keep very alert to any unusual eye symptoms - go straight to A&E if in doubt.

MrsO

What a shame Snaggler - it must be awful for you. Do tell your doctors how much difference it is making to you physically because there are possibly options to make it a bit more bearable until you are off the pred and settled down. It is safe to reduce quickly under medical supervision but they do need to know if certain things happen just in case your body isn't coping. Plus as MrsO says, the reduction itself will cause pain. But if you don't show them how disabling it is they maybe don't realise/appreciate the agony it means for you. Loads of RA patients say they face that from their docs - "it isn't swollen so it can't hurt" sort of response. Umm - excuse me, if I say it hurts, IT HURTS! Don't make me out to be lying or a drug seeker.

Permanent standing in the shower maybe? As long as that woman from the other thread doesn't come suggesting you try cold showers to improve your circulation ;-) - my circulation shuts down under cold water.

I'll borrow Freesia's Gaaaaahhhhhhhhh I think in the absence of emoticons. Grrrr!

Hugs - for the kids too!

Eileen

My Rhuematologist told me that he did not see swelling so he was wondering why there was pain. Funny you mentioned this. Well I do not think there is going to be swelling when you have me on a huge dose of prednisone I said. LOL! The cancer doctor has different ideas then the Rhue. She wants me off! Not just down but off. I will have pain either way so I figure I need to listen to someone and would rather not have the cancer go into high gear and make it so I need chemo sooner then later. My doctors are at odds with each other.

hi sounds like you have decided to go with oncologist( cancer dr) if so why not try and get better analgesics ( pain relief medication )even if its something stronger than you would normally take bearing in mind pmr pain is more responsive to steroids than other meds or thats my understanding gained from the fount of knowledge our amazing eileen,if you really have to come off steroids ask them for an alternative pain control dont just put up with it !!!!!no one copes well if in persistant pain and should not have to in this day and age ,here we have pain clinics but most cancer dr have wide knowledge of pain control so tap into their expertise ,best of luck having a bad day myself so even more empathy today for your predicament thinking of you carol k

I am not even sure if I trust what the oncologist is saying because I know forsure my spleen is swollen and she insisted it wasn't. That really bothers me because if she is missing the obvious what else is she missing? I like straight forward doctors who tell you like it is even if it is horrible. Truth rules for me. I do not need any doctor to hold my hand, I have a family for that.

I am looking forward to hearing what the Rhuematologist has to say. I am hoping he can make things clear for me. I know I am in alot of pain and there is a REASON for that and I will not let any doctor tell me otherwise. Only five more days and counting till I can find out what the x-rays showed and how he will interpret the arthritis the bone scan found in my wrists and ankles as well as my sternum and ribs. I know that is where the rest of my pain is and why the prednisone has not resolved all my pain.

My vision has not improved at all, I am pretty sure I've lost that bit of vision in my right eye forever now. It is a price you have to pay for living in a country where the doctors seem to have a hard time listening to their patients.

If my GP had not given me the large dose in the beggining it is possible the eye might of been worse off. So regardless what the oncologist says about the GP it is irrelevant. I believe my GP saved my sight.

I am very glad my blood glucose and insulin is in normal parameters. I am still worried about my thyroid and I hope that someone addresses this. I see my GP again on Thursday for prescription refills and hope to ask her about this again. Sometimes she rushes me out of the room before I can finish all I have spoken.

Hello Snaggler

You certainly don't need to have rushed appointments with your GP the way you are suffering at the moment - perhaps you could book a double appointment next time.

Has your optician given any useful information/advice about the problem you are experiencing with one of your eyes? I found my optician to be most concerned when I turned up with burst blood vessels in both eyes last week - he took loads of time to look at the back of the eyes before reassuring me that all was well and told me to come back whenever I felt worried, so he is definitely taking my history with PMR/GCA seriously.

My eye doctor told me I was born with a condition which will lead me to blindness eventually anyway. He has no beside manner but at least he was honest. So eventually I will not see or be legally blind, little vision. I cannot remember what he called it but it is genetic. Although the problem with the blurriness and loss of vision recently was from the onset of whatever the doctors think I have. Problem with having so many different doctors is they all want to blame the other disease for the problems I am experiencing.

Snaggler

They probably find it easier to "blame the other diseases" as they don't know anything about them!!!

MrsO

All I know is I am not ever returning to work until the pain stops. I need money but nothing is worth my health and working seriously impedes my health. How long can PMR last? Do the doctors not realize that this can relapse? My GP seems to think it goes away in a year. From everything I've read that is not true.

The "official" version is 2 years in much of the literature - but that is an average. From looking at a load of studies, the literature suggests that about a quarter of patients are off steroids in a year or so but are pretty likely to relapse later. About 50% need steroids for between 2 and 4 years with a lesser rate of relapse and the remaining quarter need steroids, albeit at a low level for much longer, sometimes many years. A figure of a year is exceptional I would say.

Doctors have been asked why they persist in this "2 years" figure when it is patently not true and they say they don't want to depress the patients. Many of us think that telling someone they will be better in a couple of years and then they find out they still need pred leads to them feeling they are failures in "mastering" the disease. There is nothing to "master": it is a disease, it is ongoing, it cannot be cured, only managed with pred and lifestyle changes until it burns out - many can't manage a job of any sort, others can't continue in their current job. They don't tell patients RA will go away - there are many similarities between PMR and RA with regard to the pain and fatigue although RA is a far worse disease process overall.

Most GPs don't know anything about PMR and even when they do have patients with it think it is fine once you take the tablets. If only. And if only a few of them had had it too - one of the best rheumys in the UK for PMR hasn't had it, but his father did.

If you would like the reference to this study to show your GP tell me and I'll post it.

Eileen