I need friends at this time,lots of problems

[sister]

Hi everyone.
Well, it's been over a month since my last update so I have news but none of it is good.I finally got to see te rheumatologist yesterday and he says that I do have temporal arteritis and also polymalgia rheumatica. Certainly not what I wanted to hear at this point.
I have been told by the vascular surgeon and my eye dr.that I did not have it but my primary care dr.and this man I saw yesterday says I do!

So,I have no choice at this point but to go back on high dose prednisone for awhile to get it under control.I was on high dose from 2-26-11 to 4-5- 11 then when they decided I didn't have it they tapered me off of it.Now I have to start all over again.

And by the way, I had to be seen in urgent care last monday for a urinary infection that was driving me crazy,I have taken all of the antibiotics and I do not feel any better.Still have pain and frequency.He said it could be diabeties.
The side effects of the prednisone for me are really bad so please keep sending up prayers for me.

I can't believe that all this has happen to me this year,until the 16th of feb. I was fine except for fighting allergies and sleep apnea.
I also have osteoporosis, have had it for years,so you all know that taking high dose prednisone will be rough on my bones.He said to keep taking the calcium and vitamin d that I normally take and to exercise more,(you know that goes along with everything that they prescribe now,exercise more.)
I already walk 3-4 miles a day and I have a cardio machine that I use in the house.He said that was good,but try to do more.

Need your prayers.

[cflame1]

Sister?
See if you can get an A1C done... and probably some other tests. Between them all the docs should be able to tell if you really have diabetes.

[djr1215]

Praying for you.

[sister]

Praying for you.

Thank you so much.I need all the prayers I can get now.
The dr. informed me that these are very serious diseases.

[rosacer]

Sister

It's sad to hear you are still having difficulties, will start praying again for you.

I have a friend whom was 80 when she was diagnosed with a problem which needed her to take prednisone, the Dr (specialist on arthritis) gave her too another pill which was supposed to protect her bones from the adverse effect of prednisone and keep her from loosing her calcium. I know because I was the one who brought her Dr appointments each time and went to the pharmacy. Maybe they can give you this medication to you too, I don't remember the name that was 3 years ago.

Rosie

[sister]

Sister

It's sad to hear you are still having difficulties, will start praying again for you.

I have a friend whom was 80 when she was diagnosed with a problem which needed her to take prednisone, the Dr (specialist on arthritis) gave her too another pill which was supposed to protect her bones from the adverse effect of prednisone and keep her from loosing her calcium. I know because I was the one who brought her Dr appointments each time and went to the pharmacy. Maybe they can give you this medication to you too, I don't remember the name that was 3 years ago.

Rosie

Thanks Rosie,but he was very stern about the prednisone being the drug of choice for this disease,
my sed rate is so very high he is trying to get it down very fast to prevent my going blind or having a stroke.
I stressed to him that I did not want to take prednisone but he said I must because there was a
possibility that I could go blind.



He also said that this disease could lead to so many other diseases such as diabetes,cancer,anurysm,and too many others for me to remember.
But he was really stern about me taking prednisone.

Please do keep praying for me,I have 6 beautiful grandchildren that I want to enjoy a while longer .

[HoseCrusher]

I wish I could do more, but you have my thoughts and prayers headed your way.

[DoriC]

Hi Sister, my husband has had PR for many years and has managed to keep it under control on a maintenance dose of prednisone at 5mg daily. He's had only a few flareups in all this time usually requiring 7days of prednisone at 20mg(still not too high),then tapering back down to 5mg again. Of course, your case may be different and you may need a higher dose to start with. I was told it does depend on the sed rate and the CRP test among other indicators. Even with Mike's symptoms controlled his sed rate is always higher than it should be as most people with PR always have some low-grade inflamation. Sure, it's not the drug of choice and has some side effects, bruising, bone loss, slow healing wounds,etc, but when we've tried to wean him off completely, even at 4mg he starts to crash and have hip and shoulder pain and generally feels lousy again. Sure, his Dr insists on careful monitoring more often than most patients with frequent office visits, blood work along with other tests and extra supplements but in certain cases prednisone can be a life saver even with all the side effects and PR can be managed effectively. I've googled many articles written on this disease which give good insight. BTW, Mike's sister had PR and TA which was managed this way for years and she lived to be 92yo and had a good life. Blessings.

[sister]

I wish I could do more, but you have my thoughts and prayers headed your way.

Thanks" HoseCrusher",
I really appreciate your thoughts and prayers,please keep on sending them my way.
GOD BLESS YOU!

[sister]

Hi Dori,
It's so good to hear from you again,how is Mike? I was folllowing your every move when he was so sick but then I got sick and haven't been on the internet for awhile.And how are you?You got sick too.I hope and pray that you both are better now.
Thanks so much for your response,yes, I did know that Mile has PMR and that he was taking prednisone for it snd that gives me hope that someday I maybe can go to a low dose too.
But it's going to be hard for awhile until I can do that,my sed rate was 122 which is way too high.
Thanks again for your encouraging letter,I need that right now.I am really getting depressed that I have so many symptoms from the diseases and then so many from the prednisone.
I have severe mood swings and irritability and the worst is SEVERE hot flashes.
please pray for me.

[Judy in CA]

Sister
Haven't been on for awhile as i have alot of medical issues too but wanted to add my prayers and good thoughts to your healing.
I was havning so many problems getting used to new masks and machines since moving to CA and new rules applied.
This forum is so supportive I know there are lots of prayers going up for you
hang on
Judy

[sister]

Thanks so much Judy,I'm sorry that you are having problems too. I have also had many problems with the mask and have just recently been able to use the swift fx after 5 years of failure with everything else I tried.It's a hard battle.
But then with everything else that's happened to me since February I kind of put sleep apnea on the back burner I guess.I sleep some but not a lot now.
I know that the people here are praying for me for this is a wonderful group of friends when you really need prayers and support.I thank GOD for that.
GOD BLESS YOU!

[sister]

Sister?
See if you can get an A1C done... and probably some other tests. Between them all the docs should be able to tell if you really have diabetes.

Hi "cflame1"
I wanted to thank you for your post and let you know that I did have an AIC done and a complete panel of bloodwork and they didn't find anything wrong at this time,(thank goodness).
He said that it could go into diabetes but at this time he didn't see any sign of it.
I really feel bad though,but guess I'll just hang in there.
Thanks again for your concern.
GOD BLESS YOU!

[cflame1]

Good... at least that's one worry gone.

[sister]

Well, I've been on the high dose prednisone for 12 days now and I still have the headache and the feel real bad feeling.I was told and I read on the internet that the symptons should disapear after being on prednisone from 2-7 days,but mine haven't.I don't know why.
I have tremendous side effects from the prednisone,I think everything in the book,so I feel real bad.
I do understand that this is the medicine that treats Temporal Arteritis and polymalya reumatica but I am wondering if it's worth it at this point.
I have never taken a medicine that made me this sick.My quality of life is certainly not very good at this point!
Here are a few of the side effects that I have at the present time:

moon face
increased appetite dizziness and lightheadness
increased sweating trouble sleeping(none most of the time,2 hours at the most)
thin skin(bruising) mood swings
irritability depression
bladder spasms stomach irritation(severe,all the time)
hot flashes(EXTREME,day and night) nervousness

eyelid drooping
fast heartbeat
constipation
urinary frequenency and pain
hand shaking
higher blood pressure than usual

so this is my life now!