What is going on?

This is not the season to be whining but I really need some advice.

First off my sincere gratitude and ❤️ goes out to all you wonderful people who have helped me find my new life. Merry Christmas to all of you and may we all have a healthier year. God bless!

Now, for the situation: recap was down to 7 mg prednisone and flailed went back to 20 mgs with still slight temperal headache n shoulder aches but not bad. Did the slow from 20 to 17.5 after 2 -3 weeks at 20. At 17.5 still had the niggling of pain in temperal area and jaw. Then stayed at 17.5 from 9/18 n started slow taper to sixteen on Oct 28th. Also got flu shot this day.

Made it to 16 mg 11/15 .

So now I have the nagging headache n some top of shoulder discomfort. What makes it hard for me to determine what's what is I have always had the right side headache. My vision gets fuzzy at times but I read a lot and am on computer a lot.

I also gave into depression at Thanksgiving as none of my clothes fit as I have gone up 3 sizes with a weight gain of 55lbs .. I went to bed for 5 days and just slept. I snapped out of it and gave all my clothes that did not fit away n went shopping. So I have situational depression n feel much better mentally.

I plan to stay at 16 mgs until after the holidays.

After all this info my question is.....

Are we supposed to be pain free? If my vision was not threatened I would not even mention the pain but that fear is always there.

Linda

17 Replies

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  • Hi Linda,

    You certainly seem to have been through the mill over the last couple of months, and good idea to stay at 16mg for a while, in fact for at least a month would be a good thing.

    Most people are expected to get at least 70% relief from pain when on Pred, some get a lot more, for some it goes completely. And yes, sometimes it's difficult to tell what is a headache, and what maybe GCA. Personally I knew the difference as I had suffered headaches earlier in my life, but that was related to raised blood pressure - is yours okay.? Of course, you can also get tension headaches and from PC and reading if your eyes aren't 100%, but most of those go if you take a painkiller of some sort - GCA headaches DON'T. Have you had your eyes tested recently?

    Please don't real guilty about whining, we all need to do that at times, and best do it here, where at least you get listened to, and sometimes helped!

    Take care.

  • Thanks Dorset lady you always make me feel better.

    Yes in the 18 months of GCA I have been to eye docs three times. Got new glasses the last time which I find weird due to not seeing as well driving in the dark I fact my vision seems better when I take them off but just in the dark.

    I do have high blood pressure and take a medication for that. I also am on metoprolol for b/p and racing heart which seems to have lightened up with this med. One day my pressure is normal with meds then it goes moderately high.

    I am chronically tired and could sleep all day but I don't.

    One great highlight this week is I have up my tree n lights. I love lights.

  • I find glasses aren't good when driving in the dark- too many layers of glass distorting vision! So I try and get someone else to, but sometimes I have to!

    Agree about Christmas lights - they bring out the child in one I think. Enjoy!!

  • Hi Linda and DL

    I am really interested to read your reply to Linda. I too was diagnosed with GCA early September and through reading the daily posts on the forum am aware we aim/ desire a 70% reduction in symptoms then have a number of weeks maintenance dose before we carry on with tapering etc.

    For some reason, I know not why, I read that as being for PMR only and not GCA. I have been rather low in mood as my GCA symptoms have remained albeit not there all the time and mildly.

    Even though I have read the research papers/projects that are available this particular piece of information isn't made clear. I don't know if there are others on the forum who have also misinterpreted the information or it is just me being unrealistic.

    I am really sorry to read about your struggles Linda, I have followed your journey so far and I do get a sense that you are quite a determined woman. The not knowing and no definitive clear route for these conditions can make us feel a bit trapped and on top of that the side effects of the treatment !!!!

    Anyway dearest folk take care.

    Judy

  • I do not have gca but pmr. I am not pain free. I am hideously jealous of those who seem to take pred and go back to a normal life. I've gone from being able to run to not being able to walk for more than 10 min. I've also put on 60 lbs and just when I think I have accepted things something comes along and reminds me that I really haven't. I know I'm hovering with depression. I've had this 18 months and am 52. The light at the end of the tunnel sometimes seems very distant.

    I'm not really sure this helps any. I guess I'm trying to say you're not alone. Hope you have a restful and relaxing holiday.

  • Hi Cjval,

    Oh I get it 100% on energy level .. I get up and do the dishes then lie down n rest.. Get back up n vacuum back down for a rest etc etc .my life has become short bursts ...

    I have finally recognized my eating was due to prednisone munchies and being mildly depressed. It is hard right now to think about changing my eating habits and thus far I have dodged the diabetes so come the next year I will get sone help from a nutritionist and get some of this weight off. I know I can do it with exercise but I can't do much of that as it takes a toll.

    Maybe we could as a group find a way to help with diet for each other I would be glad to share my personal email to be accountable to each other. I want a simple 1200 cal diet which says eat this for breakfast lunch dinner n snack n make it easy. Every time I see new diet they have meals that sound wonderful but take three hours to prepare etc...

    Thanks for sharing it is nice knowing we are not alone.

  • Your post struck a chord, well several actually. I also have to work in short bursts. I have had pmr for nearly 5 months only and was doing quite well with the reduction programme until I reach 10 mg about 3 weeks ago. Since then I have been struggling on and off feeling like death - so tired and achey - I've finally given in and gone up 1mg today and am def. feeling a bit better. We are flying up to Yorkshire to spend Christmas with son and family so I need to be feeling okay if possible. Is it a good idea to stay at 10mg for a few weeks I wonder or should I try another small increase? Perhaps the experts who read this could advise? Also, you mention diet - I also am heavier than I've ever been and have been contemplating seeing a nutritionist but if there are people on the forum who could advise that would be even better. I also cannot exercise as some days I can barely walk.

  • I have found that if I go out and about to get groceries, go to library for my books on tape n then medications by the time I get home I am wore out. All of the above I usually am done with all of it within an hour no more taking my time to stroll about.

    You need to stay on the dose you choose at least thru the new year. If you feel better on a tad higher than you probably should. Other more qualified people will share and they are much better at all this info.

    It is funny I feel as if I know plenty about this illness but when it starts messing with me all my brains seem to turn to mush. Go figure....

    Have a great holiday and get rest when you can. Thanks for sharing.

  • Carrot1

    I just retread your post and you say it has only been less than 5 months. What did you start at because you might be going to fast on your reductions...

  • Hi Carrot1,

    Would agree with Lin-calif, 5months is quite quick to get to 10mg,even if you started at 15mg. Would also suggest you stick at 10mg - or have you gone back to 11mg? for a couple of months - get through Christmas and the worst of the winter before you consider reducing again. Doesn't sound as if you have the inflammation under proper control at the moment, and go a bit careful with the exercise, probably best not to attempt every day - have a rest day in between. The resting is as important with PMR, your muscles can't recover as normal.

  • Thank you Dorset Lady. (I am also a Dorset lady!)

    I feel as if I should try to stick to the programme of reduction but just lately it seems impossible. The rheumatologist didn't warn me this might happen but my gp did although he said the difficult point was usually at 7mg. I reduced originally from 20mg to 15, then 12.5, then 10 and now I am supposed to go down by 1mg per month. I think I may need to go up another mg as I'm still very uncomfortable on 10mg this morning. One does have to have a life .....

  • The difficult point he is thinking of is because that is where the adrenal glands have to start producing their own corticosteroid again - they stop doing so as long as there is sufficient present in the body as a result of the higher doses of pred.

    That does NOT mean you can simply reduce to 7mg willy nilly without any problems. As I explained in the big post - you need enough pred to manage the daily dose of new inflammation and that may be above 7mg, in fact, for the vast majority of us it tends to be well above 7mg to start with. It doesn't mean you won't get lower - just not yet. It took me about 4 years to get to 7mg - and that was about 10 years of PMR!!!!!!

    The best way of getting lower is to reduce really slowly and steadily using something like the Dead Slow and Nearly Stop approach - it means you don't miss the end point. If you overshoot and allow a flare to develop it seems more difficult to get the inflammation under control again. I wish I had an idea about why it is, but it is so.

  • Have found all your explanations on this thread very helpful. It is so hard when you are trying to "read" what is going on. When first diagnosed for PMR and on 15mg I was pain free although flu like and very fatigued. When I had a very bad flare at 10.5 and developed GCA symptoms I eventually ended up at 21 mg. I now know I should have hit it hard at the beginning but crept up dose until symptoms under control. Then down from 21 mg to 18mg virtually pain free until another flare which necessitated going back to 20mg. Since coming down to 19mg over 6 weeks.( been on 19mg for about 3 weeks- no intention of going down over Christmas period) I 'm not pain free ( not like at the beginning) I have some pain at times in the forehead and at the base of the skull and some pain in the arms, all which is bearable. I am I suppose presuming that this is my new "standard" to move on from. Who knows? It's certainly not easy trying to work it all out and "go with the flow". As usual such a long post!!! I was never brief but just wanted also to say a big thank you to you PMRpro, Dorset Lady, Celtic and others who regularly give an awful lot of time and energy to this site. It is very much appreciated.

    XJackie

  • Some people are never pain-free, whether it is PMR or GCA and that is why it is important to take notice of how you feel and what pain you have at the highest dose you take before you start to reduce. That is your guideline. If it was acceptable pain at 50mg (or whatever) then that is what you are aiming for as you reduce. You are looking for the lowest dose that manages your symptoms as well as that starting dose did - that is the best you can hope for as it is unlikely that a lower dose will do better than a higher dose, except for the reduction in any steroid side effects you may have.

    In the early days of either, the underlying autoimmune aspect of the illness is probably at its most active - it does seem to wax and wane and at lower periods of activity you may well manage to reduce but then it may flare up a bit and symptoms return even at a steady dose. This is most likely when you are under stress or trying to do too much (also a form of stress) but physically you MUST remember the autoimmune part is still chugging away in the background and that makes your muscles intolerant of acute exercise. We can't say it often enough: do too much and PMR (and sometimes GCA as well) will turn round and bite you in the bum. Sometimes literally!

    I don't care WHO tries to tell you: you cannot always reduce the pred dose to a timetable and everybody is different. You maybe can at the high doses you start out at with GCA but the lower you get, the trickier it becomes. Above all, you will not be able to reduce below our Holy Grail: the lowest dose that manages the symptoms as well as the starting dose. If the underlying autoimmune cause of PMR (and GCA) is still active - you will need some pred to manage the daily new dose of inflammatory substances which the body produces in the early morning. That dose is different for us all for various reasons - activity of the disease is just one aspect. The amount of pred each of us absorbs also varies and it can be anything from 50% to 90%. That means that 10mg for me may not be same as 10mg for you - I may be getting nearly twice as much. I couldn't work out why this is such a problem for doctors to realise - then it occurred to me that it is quoted as 70%, the average. But it isn't 70% it is anything between 50 and 90%, a very different scenario.

    It really isn't a good idea to reduce when you have just had a flu shot - it is keeping your immune system on its toes anyway, don't add more to the mix. At those doses I would suggest the shoulder discomfort might be a separate issue rather than "just" PMR. Localised treatment might help. And if it was myofascial pain syndrome that is affecting your shoulder muscles, it can also cause pain to radiate into the neck and head by irritating/pinching nerves in the area. Definitely worth thinking about.

  • And about the weight gain:

    Several of us on the forums have either avoided weight gain to start with or lost weight by cutting carbs. Pred changes the way your body processes carbs and turns them into the fat deposits that we are so familiar with: cheeks, neck and midriff. Cutting carbs drastically helps that. If I eat carbs I don't lose weight, too many and I gain, I lost 36 lbs of pred fat by eating salads and above-ground veggies and protein. It was the fat deposits that went, midriff first!

    On the LupusUK forum there is a thread from several ladies there who have successfully lost pred-associated weight using the Slimming World approach. All of them, like me, have still been taking pred while losing weight.

    I find cutting carbs easy and you don't have to think - but then, I can't eat wheat without itching agonisingly so I don't eat much in the way of processed carbs anyway so I've had a lot of practice!

  • Also have found cutting carbs works with trying to control weight gain.

    Jackie x

  • Hi Lin-calif,

    I am at a similar stage in the illness to yourself - diagnosed and started prednisolone 15mg in September, and put on a pretty quick reduction programme by my GP to get me down to 10mg. It didn't work (surprise, surprise!) and I had to raise my dose.

    Recently I posted a question about the problem of "yo-yoing" on pred, seeking advice about whether it was best to creep up gradually - say 1mg at a time - when my current dose wasn't working well enough. The advice was to increase more generously than I was inclined to, so instead of going from 12mg to 13mg, I bit the bullet and went back up to 15mg. I am so glad I did! It completely put me back on track, and once the excitement of Christmas/New Year is over I plan to try a VERY slow reduction again.

    I completely identify with you about the fatigue that sets in, after even the slightest effort (say of getting up, showered and dressed!). I do find though that I have waves of this, so some days I seem to have a bit more energy. I'm still learning the lessons of pacing, and am trying to be more strict about following a "busy" day with a day or two of only very gentle activity. The only exception I make is my routine for walking, as I'm trying to do everything in my power to strengthen my bones - but it may be that that's virtually the only activity I do some days. Sometimes I have to give myself a talking to though, and ask myself what dreadful thing will happen if I don't ... do the ironing; or the vacuuming; or change the bedding, etc etc. The world will not implode.

    Good luck with getting to grips with this pain of a condition.

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