I am scared. My husband died 8 months ago for a sarcoma in his right leg and for more than one year my health was not a real problem, although I had arthritis and osteoporosis. Metaphorically speaking, I became his legs: I was never tired and drove him anywhere he wanted to go. However, some days after his funeral, I realized I could not walk normally. My legs were stiff and I had a lot of pain, that kept me awake at night. I thought it was arthritis, but after some tests I was told I had also polymyalgia.
Now I take 3 pills of prednisone everyday. I hope to get better but I feel to have no future, since I live alone and nobody could help me in case I should need it. So far I manage, but what about tomorrow? Please let me know your experience. Is there some hope to win polymyalgia definitely or will it be my company until I die?
Welcome Titania
I am sorry for all the problems you have had
PMR can definately go away or you can get to a low dose of steroids and it is all managable The steroids can make you feel low to start with but as you go down the doseage you will feel better You have obviously had huge trauma in your life with the loss of your husband and having another illness and medications to contend with is an extra problem
I assume if you are on 3 tablets a day you mean you are on 3 x5mg 15mg a day The tablets come here in 5mg 2.5mg and 1mg but I dont know about Canada
Here most of us are monitorred monthly with blood tests at the beginning to see if the inflamation is under control and then the doseage is reduced We should all be reguarly checked for blood pressure ,diabetes , and have bone checks to see the steroids arent causing ostioporosis
There is lots of information on a website PMR/GCA North East and even a DVD is available Read as much as you can and dont despair there is a lot of support and help here and people who know a lot more about it than me
We are of the opinion knowledge is power and the more we learn the more we help ourselves and if you see Drs and Specialists you have an informed opinion yourself
Best wishes and make sure you come back to us
Mrs G
Hallo Titania , Mrs. G has already given you the most important information.
Do go to the website that she has given. There is invaluable and reliable information there. Also, do keep coming here. Although we are inevitably just virtual friends you will have lots of questions as you go along and there will certainly be someone along with many if not all the answers.
The title of the DVD is \" You Are Not Alone\" and it was chosen with good reason.
When your late husband needed you you say you were never tired. I think in the middle of crises our bodies keep going like over-revved engines and, like them, something eventually gives.. Many of us can relate our illness to a time of stress. Mine was caring for a very elderly mother ( first occasion ) and also planning to change our lifestyle and move house just at the time of the recession brought it back after five years of perfect health. So, you see, although it did come back I did get completely clear once and hope to again which I hope will be encouraging.
for you.
It is a long haul for many people and we most of us do not believe the \" burns out after 2 years\" story .
As Mrs.G. has said I expect you are on a starting dose of 15mgs. of Prednisolone ( or is it Prednisone in Canad? ). That was my satrting dose 3 or so years ago and I am now down to 4. Not a steady progression and don't be surprised if you have to go up and down a bit.
It sounds as though you were diagnosed pretty promptly. It's not always the case. Also, as you will read in other posts, don't be pressured into too rapid reductions of your steroids especially as your dose gets lower. We are advised that it should not be more than 10%. Sometimes that is achieved by alternating doses ( e.g. 3 one day, 4 the next = 3.5 a day ) and, for some people, as the dose reduces below 10 it works best to take a double dose one day but nothing the next. Others on here have personal experience and I'm sure will be along.
I've said more than enough for now. Come back with all your questions and anxieties and remember if you don't know the answer, it isn't a silly question or, as Eileen who know more than anyone on here says \" there are no silly questions, only silly answers.
Hi Titania,
I am so sorry to hear about the loss of your husband & the P.M R.
This forum is a big help, I have learned more here than from any doctor, so please keep reading all the messages, you will find it will increase your knowledge of this awful condition.
The wonderful people on here , & I will keep on praising them, they have helped me enormously, so if you want to moan or cry then you have come to the right place, we all have a good moan & cry on bad days, so dont be afraid to .
Its a long journey we are on , but you are not alone.
Listen to all the good advice given on here, it will be a big help to you.
God Bless you & give you strength to cope.
Cheers Amycakes.
Hello Titania
Do hope you soon start to feel better - you have been hit with stress and grief from all angles but KNOW that as far as the PMR is concerned you will definitely get better so when sometimes it doesn't seem like it, just hang on to that thought.
As far as your very sad loss is concerned, that does take time as I have seen first-hand from my best friend's experience of losing her husband suddenly whilst on holiday at the age of 61. However, she is now recovered, very happy and contented and enjoying life to the full.
I do hope you have caring family and friends around you with whom you can talk and who understand. Meanwhile, you have definitely come to the right place for some company (albeit virtual) and for understanding exactly what you are going through with both the PMR and the treatment.
There's always someone here, if only for a chat!
MrsO
[quote:8d54564e4e=\"titania\"]I am scared. My husband died 8 months ago for a sarcoma in his right leg and for more than one year my health was not a real problem, although I had arthritis and osteoporosis. Metaphorically speaking, I became his legs: I was never tired and drove him anywhere he wanted to go. However, some days after his funeral, I realized I could not walk normally. My legs were stiff and I had a lot of pain, that kept me awake at night. I thought it was arthritis, but after some tests I was told I had also polymyalgia.
Now I take 3 pills of prednisone everyday. I hope to get better but I feel to have no future, since I live alone and nobody could help me in case I should need it. So far I manage, but what about tomorrow? Please let me know your experience. Is there some hope to win polymyalgia definitely or will it be my company until I die?
Hi Titania,
It must have been a very tough time for you and while your husband lived, you just had to be the one that drove and did many other things. At the death of your husband, your body probably reacted as there was no more need to do something for anybody but yourself. It sems as if pmr starts after a shock or some tough experience. Now, \"you don´t have to be in shape to help somebody else\".
You wonder what is going to happen. If you read my own story (Google pmrgcafighters and you will see \"Our stories\". There you can read about me and several other persons and the way we have gone through the ordeal of fighting pmr. In my own case, I started on 20 mg (but should probably have had 30-40 mg as I had also GCA - giant cell arthritis) and after some years I managed to get off pred. As you see from my story, it is posible to be free but you had better be prepared to take it easy and not try to get off too quickly as you might have flare-ups and it may cause you to take longer to reduce. I have chosen to tell my story as I think it may help other people, especially since I have been off pred for 2 ½ years. I think it must be valuable for those who have managed to be free from pred to tell their stories to show those who are fighting to reduce that it is really possible even if not all get down to 0. As you probably have read, some persons have to have a low maintenance dose and a low dose of pred is not dangerous for the body.
My method is described in \"Our stories\" and according to many posts, it has helped several persons to reduce. The important message is to go slow and not hurry to reduce.
There are also several others on this forum that have succeeded to get off pred, so it is really possible!
Good luck!
Ragnar
Ragnar
You are worth your weight in gold.
People whose PMR goes into remission or disappears forever, forget that their story is one of hope to those just coming into the PMR and GCA world.
Thank you.