PMRGCAuk
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An Update

Again ... (3rd post of the day)

I spoke too soon when I posted "New Doctor Tomorrow" earlier today. A couple hours later and my shoulder and neck were stiff and hurting. I had already taken my 30 mg dose so I took 10 more, rested for a couple of hours and still had stiffness and pain however not as bad. So I took an Epsom salts bath and that didn't ease it either. I took 5 more and relief, finally. Even this many hours later I am still not hurting.

I didn't mention my tailbone/buttocks pain earlier but it was really bothering me too. It did not go completely away with the pred though. I fractured my tailbone when I was about 12 years old and now it is enlarged so I sit on a special pillow. In a post I read earlier someone mentioned simply taking ibuprofen. I have been taking 800 mg of it for a long time but not since I have been taking prednisone. I took one of those today and the pain in my tailbone area went (almost) away too.

The more I read and learn I am seeing how very complex all of this is. I was diagnosed with fibro nearly 30 years ago but I never really believed that is what I had. At that time it really was an "I don't quite know what this is" diagnosis. Things are much different now from what I understand but I have never had a recheck for fibro.

I am also becoming more convinced of the PMR diagnosis because in the past 3-4 years I have had what I called a stiff neck multiple times. Sleeping has been so hard with one or the other of my shoulders hurting. I have also had shots in both thumbs, my right hip, and my left shoulder area. A couple of those were steroid but others were like lidocaine or something. However, all of the shots worked to relieve my symptoms. Also, over this past 2 years walking had become awful really. I identify so much with people on here when they talk about going down stairs, etc. I couldn't even step off of a curb very well. I had to nearly stop then step and step. I was feeling 90. And for the past 15'ish years, I have been saying: How will I ever reach 90, like my parents did, feeling the way I do. I couldn't even imagine.

For the past year, I really have become nearly housebound, not wanting to do anything at all. Looking at all of this in retrospect I see I have been in a really bad way. My quality of life has been nil.

I want to thank you all sincerely for what you do in this group. I feel as if someone has opened the windows and the fogginess is clearing. I am feeling hopeful about my health for the first time in, well, a loooong time!

Grateful,

JoLyn

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Hi jo_lyn,

Do you mean that your total intake of Pred was 40 mgs today and you are still experiencing pain?

So much of what you say suggests that you may have PMR but these self prescribed massive increases in dose worry me. Especially when it hasn't zapped all the pain.

You have a complex medical background and although PMR may well be in the picture it doesn't seem to be the complete picture.

Fibromyalgia, as I understand it, is a disease that alters the perception of pain, very much for the worse. My friend was utterly housebound with it and is only beginning to rebuild her life after several years of pain and immobility. It is a horrible diagnosis because there is not much doctors can do it, can and does run alongside PMR and will not respond to steroid.

It is a catch all diagnosis that has a tendency to be over used by confused doctors when the symptom picture is really complex.

Please be careful with Prednisone . Effective as it is, it has many downsides. You need a wise, patient doctor to unpick all this for you, I pray that you get one!

I am glad you found us and the widow is open, but don't be over eager to jump out. Everything has to be carefully, considered, measured and slow. Bless you. I try not to think of the years that I have been preoccupied with seemingly random pain and depression and the way I cling desperately to this final PMR diagnosis that seems to make sense of everything and offer me a way out.

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I posted to you and SnazzyD below.

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Oh dear, I can understand your desperation. I too am concerned with the self administering Pred at such high doses without supervision. I know some posts on here make it look like some people just whack up the dose if the going gets tough, but usually it is with a much clearer picture and they have had experience before. Also, when one is depressed, in chronic and acute pain and on high doses of Pred, it can cloud judgement. I certainly know the last one!

Anyway, one question to perhas help those who know more than me. What are the time gaps between those doses and how long did each of them take to help?

Hang in there.

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I posted to you and SheffieldJane below.

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Oh, and it was a couple of hours after taking the last 5mg dose before I finally felt pain relief.

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Dear Jane and SnazzyD,

I appreciate your concern and your wisdom here. And I have taken it to heart. I'll try to explain myself. You may remember I was prescribed a large dose pack 2 1/2 months ago (not for PMR) which started this whole thing. 60mg for 7 days, then 40 for 7, then 20 for 7, then none. From taking that and experiencing the nearly total pain relief my doctor thought it might be PMR and started the 15 mg dose, increased it to 20 and indicated I could make adjustments, which I took to mean minor, say 5 to 10mg. The 20 mg dose was not working well and I had read that so many people were started at 30 I didn't feel it was out of line to see how I did on that dose. Also, during this time my doctor really bailed out on me by not replying to my emails and I decided it was time to see another doctor.

Yesterday was a test of sorts. I do not normally self-medicate however I do have a very small amount of knowledge and understanding of myself in reaching the age of 68! There was quite a bit of pain when I took the 10 mg extra and then later the 5. I took 15mg at 8 pm, 15 mg at 4 am and then the 10 probably 5'ish hours then another 3-4 before taking the final 5mg. I wanted to see if the prednisone would relieve the pain in my shoulder and neck. I wanted that information to take to the new doctor I will see later this morning. Also, I have not taken any of my regular dose yet today (it's 1 am) and am still trying to see what works best so I can sleep. These are the things I hope to talk to my doctor about today.

Please continue to share your concerns and observations with me because I need them and appreciate them. I am grateful for your support.

I hope I made myself clear and have eased your concerns a bit,

JoLyn

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Sorry if I am coming across as a " know it all" I am thrown by PMR at least once a week. I don't know what your pain feels like and I don't know what 40 mgs of Pred feels like. I do know that it is recommended to take Pred for PMR in one morning dose - if you want to be really clever - the early hours of the morning, when the inflammatory substance is shed. I know that the starting dose is between 25 and 15 mgs, usually but a number of contributors are reporting higher initial doses of late. I know that you need to protect your digestive system with food/ yoghurt when you take Pred and if you still get stomach trouble Omeprazole or similar. I have also learned that even 1 mg of Pred can make an amazing difference to how I feel. I respect the drug and fear it.

I do care about you and want what you want for yourself. I do not have the scientific and medical knowledge of PMRPro and DorsetLady, just what I pick up here and from reading. If they tell you, just do it 😉.

I am wary of getting in such a muddle with my drugs and doses that I won't know what is causing what. One day I want to find my way back to good health. Like all of us really. Of course we know ourselves pretty well now we're mature but these drugs - well I hardly know my own face. 😳

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You don't come off as a know it all at all! Please don't think that. I am taking a prescription for my stomach and if nothing else will eat a few saltines before taking my medications. Hopefully, I will get more on track when I see my new doctor today. I sure hope he has knowledge of PMR and if not will refer me to a Rheumatologist. Another reason I left my other doctor is that he wouldn't. I'll know more later.

Off to sleep now ... :-)

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Good night and good luck Jo. X

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Good luck today, I wish you "well".........

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