went down to 35 mg today and holy man
Posted , 4 users are following.
I am having some major shoulder and hip pain. So although these doctors say I am not a typical case of PMR I think they need to rethink because I had to have a hot shower two times just to get myself moving. EGADS! I am headed for bed now as my ribs are sore and seem to be a separate issue. Next week, down to 30!
0 likes, 11 replies
carolk
Posted
MrsO-UK_Surrey
Posted
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
EileenH
Posted
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
Snaggler
Posted
carolk
Posted
Snaggler
Posted
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.
MrsO-UK_Surrey
Posted
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.
Snaggler
Posted
MrsO-UK_Surrey
Posted
They probably find it easier to "blame the other diseases" as they don't know anything about them!!!
MrsO
Snaggler
Posted
EileenH
Posted
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