Winnie
Little to add to mrsUK's post except welcome from me too - and here is a link to the Patient Experience site - a UK site where you will find another forum with lots of info, experiences with PMR and laughs! And there are a few ladies there who have LOST weight on steroids and several who haven't put any on or only a few pounds - weight gain and steroids is not necessarily linked thoug, to be fair, it often is. Come and join us.
will have a look at those links you have posted.
I must say that i am starting to feel great again .. i've been unwell for quite sometime .. i woke up feeling great today .. i have energy!
Hi Winnie15. I am new also. I either have PMR or rheumatoid arthritis. Your story was very familiar. I felt good on my second day of steroids too. I have found these forums helpful with the support of others who have gone through or are going through the same thing. So glad to hear you feel great today and have energy! Winnie and Nana: Steroids do that - make you feel you could conquer the world! Word of warning - don't be misled and overdo it! I.e. don't go and clean the house or clear out the attic just because it's been neglected for a while. The most important lesson to learn with PMR is to pace yourself and learn to say no. The fatigue often disappears for a while whilst you are on a higher dose of steroids but it never really goes away until the PMR does.
Since both of you responded so quickly to the steroids it is a fair confirmation that it IS PMR - even you Nana with the crash after stopping the megadose your GP started you on.
Hi MrsE, Thanks for the info, esp about the fatigue. My husband is constantly after me to pace myself. I have to do it now or my heart rate goes way up, esp. in the afternnoon. I have more energy in the a.m., but have to be careful not to overdo it. Wow, I am going to deal with this fatigue until the PMR goes away? (yikes, that could be a year or 2, right?). Well, I really need to develop a plan to deal with this in the long run. I keep thinking I will have less fatigue the next day, but that is not necessarily the case. Some days are better than others. It does get better - partly as the inflammation recedes with a longer time on the steroids (some things take longer than others to settle down - my joint pain took much longer than the muscle pain, for example) and partly just because you get more used to knowing how "your" PMR is going to react to what you do. Some of the ladies on the UK site wondered why they felt bad some days - until encouraged to think what they had done 2 or 3 or even more days before. Standing doing the ironing can really take it out of you, I can't wash windows or vacuum but I can iron - and go skiing! Visitors may be a trigger - even though you sat down while they were there, the noise and disturbance is still tiring. If you have an understanding husband - lucky you and take advantage of him ! Mine is about as much use as the proverbial chocolate fireguard when it comes to taking my limitations into account!
Part of the racing heart may well be the steroids - several ladies have complained about palpitations, head-rush feelings, "coming over a bit funny" and slight rearrangement of how they take the tablets helped. You usually should take them all in one dose in the morning (but not with your calcium tablets - you need a 2-3 hour gap before taking them) to reduce the effect of not sleeping the next night. One of the ladies in the UK takes hers late at night, it doesn't affect her sleep and the funny feelings have disappeared. Rick, who posts on here, used to take 10mg in the morning and 5mg at night as that worked better for him - I don't know if he still does. It's a variable thing and you need to discuss anything like that with your doctor.
But yes - you do need to plan a campaign of action - or inaction!
Have fun planning,
MrsE
Thank you again MrsE. I have noticed standing for even short periods is really hard on my hips. They feel fatigued/painful right away. So I am using a stool in the kitchen and sitting as often as needed. I did not know about the calcium spacing so I will adjust my med times. My rheumy already has me on divided dones (3X day). I recently got someone to help clean once or twice a month as I have been unable to do much more than keep up with cooking, dishes, and laundry. And I pace myself with each of these tasks. Thanks for your support. I have a cough and a little fever today, so trying to take it easy. I think one of the grandsons gave me something last week. To explain - if you take calcium at the same time as the steroids it interferes with the way the pred is absorbed and means you may get a lower dose than you are supposed to. If your rheumy has you on divided steroid doses that just makes it even more complicated! You should also not eat spinach or rhubarb close to the steroid doses! Normally, the steroid dose in PMR is taken once a day, early in the morning as this best mimics the way your body produces cortisone and also reduces the side-effects in the long term. Once you get the dose down a bit you might find this way suits you better and is worth trying. In the UK it is very unusual not to take your steroids once a day but in the US the docs seem to have their own ideas. If you want more info there is an article on the UK PMR/CCA site about steroids, what they do and how to take them which is in normal English (written by a patient) but has been checked by the docs to make sure it is accurate. There is also a copy of the British Rheumatologists guidelines for the diagnosis and treatment of PMR.
The more you know about PMR, the better fitted you are to be your own advocate. Since you pay for your treatment and, therefore, also have some degree of choice (I know it's not 100% free choice), if you have problems with the rheumy or your PCP about anything - don't put up with being bullied. Find someone who will listen to you. It's important - it's your life. PMR doesn't kill you - but it does make life rather unpleasant if you don't have sensible and practical help.
cheers from a very cloudy and damp northern Italy!
thanks for the word of warning on not overdoing it .. i feel as though i could conquer the world it's an amazing feeling, but i do notice that by mid afternoon i am exhausted!
So yes i need to pace myself ...
Welcome to the forum Winnie & Nan. The prednisone really got my heart to racing when I first started on it too. Also, I felt like superwoman when first starting on 15mg. After a few weeks things started getting back to normal, not so jittery and I couldn't leap tall buildings anymore.
I've had PMR since June 2010 starting on 15mg prednisone. I'm now on 8mg but am not going to taper anymore until spring. The cold weather just makes it too hard. All I can say is don't taper too fast. If you check back through the posts you will find alot of information regarding tapering. I found out that even dropping 2.5mg at one time was too much for me so I only taper 1mg at a time.
Oh, yea, I'm also one of the odd balls that has normal bloodwork so getting a dx was difficult since my rheumy thought I was too young at 53. It is hard to find a good doctor willing to work with you on tapering and not be in a big rush to get you off the evil prednisone. Keep looking, I've got a good rheumy now and will keep him if possible.
Good luck on your PMR journey and don't be scared to pop in.
Just a quickie
There is a good article on 'How to Master Fatigue'on the website www.pmr-gca-northeast.co.uk.
We have been told it is very useful and I find it helps to refresh my memory.
You are on a new learning curve.
mrsUK, just read the article you recommened about fatigue. Very helpful. I printed a copy forf the hubby to read too. hi winnie...i too am newish to pmr.all same story.have put on about half a stone,really hungry at times and have to tell myself,no! i have noticed a change in my tolerance towards people and things,bit more gutsy than i used to be.i get very tired by seven at night and will myself to keep awake until nine.i wake every night for a few hours,which is not like me,i used to close my eyes and not wake until morning. it is alot to get your head round but helps to come on here and know you are not alone,cause thats how you feel.i am on 12.5 since thursday,from 15,few niggles in hips ,tops arms,neck which i am trying to ignore!!have first rheumy appt next week!i am 49 soon,my dad had this for 4 to 5 years but was a lot older,not sure if that makes a difference.i could go on and on ,nice to chat with people who understand,all very helpful.keep smiling and well xhi linnie
i've noticed i'm more feisty ..
just got back from the dr's .. he's upped my prednisone to 40 mg as i have giant cell Arteritis as well. Not thrilled about the dose but will be thrilled to loose the headache!
Winnie - I'm so glad you did go to the dr quickly! I've been checking in extra often to see if you had gone. Those of us who have been here a long time get a spidey sense when people talk about sore necks and headaches - hope you feel much better very soon!
MrsE
Hi Winnie,
Sorry to read of your GCA diagnosis. Glad you followed the suggestions of seeing your doctor and not delaying. My Rheumy told me that about 30% of us PMR sufferers can get GCA.
In addition to the links shared earlier, here's one in NZ — as I see that's where you're located.
http://www.nzma.org.nz/journal/121-1274/3069/
Rick - thank you, what an excellent article! And I liked the warning about not tapering the steroids too quickly or stopping them at some point in the future because of doubt about the diagnosis. The author obviously feels that the side-effects of steroids are paltry compared with going blind - whatever others might think.
EileenNana ...yes it does go away eventually. Mine left me after 2 years but did come back 3 years later for another 2. Now I am hoping it is gone for good. [QUOTE=RickF]Hi Winnie,
Sorry to read of your GCA diagnosis. Glad you followed the suggestions of seeing your doctor and not delaying. My Rheumy told me that about 30% of us PMR sufferers can get GCA.
In addition to the links shared earlier, here's one in NZ — as I see that's where you're located.
http://www.nzma.org.nz/journal/121-1274/3069/[/QUOTE]
hey thanks for that link Rick
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