Severe fatique but am down to 1 mg pred and still on methotrexate

My rhumy has taken me down about every 6 to 8 weeks by 1 mg. I see her in 2 weeks and wonder if she is taking off all together. Hope she knows what she is doing. OPnly have a little pain and weakness in hips and legs. Nothing bad and the bloodwork is normal. Just got up from nap and could go right back for another. These docs all have different ideas on how to reduce pred. I think it is a guessing game and we are the subjects. Thanks for the info. I will ask about the adrenal function. Good info

Do be quite clear to her about how you feel - there are no prizes for getting off pred too fast. Some people are lucky but the literature quotes about 25% of people are able to get off pred in under 2 years but then are at a higher risk of a relapse at some later point. Sometimes it is not so much later!

Yes, everyone is excited at the thought of getting off pred as soon as possible but sometimes it bites back.

Marilyn

Re-read what EileenH has said  In the meantime, your doctor should request an adrenal function or synacthen test to see if your adrenal set-up is functioning properly - if it is, all well and good, but if not then you need medical supervision until things are better."

You will be in trouble bigtime if your adrenal glands are not up to speed.

You need that test, before you go any further down the road off pred.

 

Thanks for info, wrote all down for next visit to rhumy. Sounds like too fast might be the issue, was just so excited to get down on pred. I might have made a mistake.

Marilyn

Pred is not the enemy  PMR is and it has a mind of its own. It comes when it wants and goes when it wants.   Yes, some in some people it goes into remission between 18 and 24 months.  I have not heard of anyone to date less than that time.   However, that does not mean it does not go away faster - just that I have not personnally come across anybody.  But then we never hear of the people who have no problems.

The last thing you want is for PMR to flare and then up the preds. 

Do let us know how you get on.

Blood test every visit with the rumy and they are normal. But going to ask for thr adrenal workup. Methotrexate seems to be no problem but how do we know what is good or bad with side affects. A guessing game I guess.

Hi Marilyn

Goo to hear that the MXT has not presented any problems for you. You have done really well to get down to such a low dose of pred in such a quick time frame. Let's hope that your Doc can work out what's going on. Hang in there girl you have lots of people who care about you on this site and what a wonderful thing this is.

cheers

Kathy

Why are you reducing pred. if still in pain. Thought we are to stay on a dose until pain is mostly gone which happened to me. I reduced pretty well until this time from 2 to 1. Some pain came back but the fatigue is tuff to handle. Also mood swings like you have. This is not a fun illness, hope you feel better. I just keep moving on in the mess.

When the pain came back my gp and rheumy diagnosed me with fybromyalgia as my bloods have never been raised after being put on prednisone they believe the pmr is in remission as long as bloods are normal. I tend to disagree but only time will tell all. I like you muddle through on a day to day basis. I hope your fatigue lessens over time and you will soon be prednisone free.

I was thinking that your previous post sounded very much like my own situation, as I have endured the painful range-of-motion issues in my shoulders and hips throughout my one-year reducton from 15 to 10mg.

But, if you have fybromyalgia, then can I assume that there is none of the tell-tale range-of-motion issue in your shoulders, i.e. that you have no pain specifically when raising objects higher than shoulder height?

I worked down from 15mg to 2.5mg pred over a 1-year period, but by that time my thumb joints were acting painfully arthritic, and the severe fatigue had also set in.

So I am back up to 5mg for the last two months, my thumb problems and fatigue have gone away, ,and now seeing slow overall improvement so will try 4mg every other day at some point soon.

But the taper-off rate now is going to be a lot less than the 1mg/month that worked "well enough" for those first 10 months.

My rheumy had recommended my also taking Plaquenil or sufasalazine, but I did not follow up with discussion of this possibility, and have not talked with him since over 1 year ago. The sulfasalazine/Plaquenil was to address a supposedly-high rf level, but I saw the numbers, rf=3.5,  not abnormal from what I have read. BTW I am 55.

You have reduced too fast from the outset - and to be successfully down to 5mg in 7 months is very unlikely.

The idea is to find what the starting dose does for you and then look for the lowest dose that achieves about the same result. Pred doesn't cure PMR, it can't, nothing can, and you are supposed to be using it to manage the symptoms. You are not being allowed to do that - your doctor is reducing you according to some plan that simply doesn't fit your illness. As long as the underlying autoimmune disorder is active you need pred - and nothing anyone can do will change that.

Since you got to 5mg your body is protesting at that speed - and it is almost certainly lack of adequate adrenal function that is causing the fatigue. The aim isn't to get off pred come what may - it is to allow you to function at a fairly normal level even though you have PMR. It isn't perfect, the drug has side effects but one of them is very useful: you feel reasonably well when it is used properly.

Remission does happen - but it can take a long time. I've had PMR for over 10 years, 5 of them without any medical help, but I have only been as bad as you are describing when having a major flare. I have been there though - and it is only proper use of pred that has allowed me a pretty good quality of life for the last 3 years. I have reduced 1mg at a time, spreading every reduction over about 5 or 6 weeks - nothing else worked. Previously I got stuck at 9mg, 8mg brought the symptoms back. 

If the pain came back when the pred was reduced it almost certainly wasn't fibromyalgia but too low a dose before natural remission had happened. Before that you have to depend on drug-induced remission which should mean low ESR/CRP and reasonably acceptable pain levels.

I've never had raised markers at all - ergo your doctors would say I've never had PMR. One in 5 patients never has raised bloods. The telling difference between PMR and fibromyalgia is that pred will relieve the PMR. possibly not 100% but considerably. Fibro isn't touched by pred - but it is possible to have both at the same time and that may be one reason for not all the pain going. Myofascial pain syndrome is another mimic of PMR and that improves at higher doses of oral pred but often returns as you reduce the dose. It the excess pain that doesn't go is in your buttocks then piriformis syndrome should be considered. Physical therapy and manual mobilisation of the trigger points or cortisone injections are a better solution to these than higher oral pred.

If I were you I would be looking for a different GP who would at least trial you on a course of pred to see if it helps again. If it doesn't then another answer is required - possibly more than fibromyalgia, a diagnosis that a lot of GPs at least use as a get out when they haven't a clue what is going on. If it does help you have not only an answer but also a far better QOL.

It is perfectly possible that the shoulder pain is not JUST the PMR. Myofascial pain syndrome will produce almost identical symptoms in shoulders and hips as well as around the ribs - it responds somewhat to oral pred but is better treated with other measures. I suspect that many of the "resistent" cases have MPS as well as PMR - I did and sorting it has allowed far better reduction of the oral pred dose than I ever managed before. That was also the part of the "PMR" pain that I was able to manage using Bowen therapy and Pilates - and when I had no access to them it steadily got worse again, forming part of the major flare just over 3 years ago.

Wow so young as well. It begs a question when pmr hits you when your on the young side do you get more pain. I can hardly get out of bed in the morning im so stiff and sore. The pain is in my hips shoulders and upper arms tops of feet and yes my right thumb joint. I cannot safely pick up a cup of tea in the morning. Joanne

I was only 51/52 when my PMR first became noticeable. I managed the first 5 years without pred - not out of choice, I was considered too young and had no raised blood markers for PMR. It has certainly been worse later on, I've had 2 major flares and whereas at first  I was just tired, my thigh muscles ached badly and stairs were near enough impossible and I was stiff, during the flares the pain was really bad compared to the pain before which was always there but not excruciating.

I totally agree with you the prednisone reduction is too fast i have on my own upped the prednisone back to 10mg for a week when i was at 7mg and the symtoms were less. I however do not write the prescription and will run out if i keep taking larger amounts. Both rheumy and gp are on side with reduction and in Canada there is no looking for another doctor. If you have one at all your lucky. I swim 7 days a week and use meditation with the occational tramadol that my gp reluctantly presribed and pray that i have a shorter version of the disease. I believe this disease has alot to do with circulation in the veins but my doctors are stuck in the dark thinking its mucles and joints.

It is muscles and joints - but they are just the symptoms of what is almost certainly a vasculitis in the microcirculation (the very small vessels and in this case the arterial side) supplying them

I suppose under the circumstances there is little point taking up-to-date medical literature for them to read? On the other hand - if you aren't taking enough pred to manage the symptoms then there is little point taking any at all - you have side effects but with no benefits to balance things out. But the bottom line is: it can't be cured, it can only be managed whatever the cause is and they are denying you adequate management which they COULD provide if they were willing. I do hope you don't develop GCA - because they can't mess about with that!

I found aqua aerobics rather than swimming helped in that first 5 years - I couldn't swim, it hurt my shoulders and neck too much. Pilates and Iyengha yoga were also good though had to be adapted. Bowen therapy dealt with some of the muscle pain - not all, but what was left was more bearable. An electric blanket used before getting up makes that first getting moving process a bit easier - warm muscles are easier to stretch and once you get them moving it does often improve incrementally so that by the time you go to bed you don't feel too bad  and then it all starts over again next morning!

Try this,  when you wake up in the morning, however early it is, take your pred (with a cuppa hot water in a flask, a tea bag and cup and - say a jam sandwich put up the night before - then snuggle down and give the pred time to get into your system.  When you get up a warm shower.

Ask your GP for Double Base Gel (they can prescribe it as you can get thin skinning - if not buy it over the counter) then use it as it says.

There are loads of Tips and Tricks and they are all available in a booklet called 'Living with PMR & GCA' go to the pinned section on this site and take a look. http://www.patient.co.uk/forums/discuss/pmr-gca-website-addresses-and-resources-35316

 

Oh yes actual swimming would really hurt i have a laminated page of exercises that are walking and stretching types of exercises the only time im pain free is in the pool or hot tub. My physio and occupational therapist have both given me articles on hurt vs harm. This i believe is to help you get by the pain because you are not hurting youself permanently when you do activities that cause pain. One has to laugh sometimes knowing if they were in my shoes they wouldnt make it through 1day.

No - muscles in PMR are intolerant of acute exercise and will take weeks instead of days to recover - is it possible to do normal exercise without excessive pain I ask myself?

I'm flabbergasted at the level of ignorance - physios are usually a bit better.

I should explain my insurance company is sending me for the physio so i am obligated to do whatever they ask or they dont pay. This is a rehabilitation return to work program. I am now up to lifting 18 pounds 90 times in each physio appt 3 times a week. It doesnt seem to be making anything worse but as i said you have to laugh as i feel if all these health professionals would read up a little more i think there approach would change. I start back to work mid August.

Your physio's should read up on PMR and also that old story 'no pain without gain' is a myth.   What century are they living in.

Gentle exercise is the key  - if it hurts -  stop

They is a set of exercises developed by a fitness expert specifically for PMR patients.  It can be found if you go to the pinned section and follow the link to the North East  - you can download it free of charge.

http://www.patient.co.uk/forums/discuss/pmr-gca-website-addresses-and-resources-35316

Thank you much for the info and suoport from everyone. I was so good at my physio they have now left it up to me to do on my own. I will be doing much less in the future as it seems to be too strenuous.

Joanne

Glad to know i am not the only one with hand problems. If i could ask is it just in your thumb or is it in your wrist as well. I get swelling in the thumb and wrist.

Joanne

Dear lord - I'm cringing at the thought...

In fact - it occurred to me after clicking to reply - no wonder you are in pain! I can only imagine how you would feel without the bit of pred you are allowed.