Feeling exhausted and jittery!

Hi Eileen, I took my last dose of methotrexate on 19th July, then dropped to 4mg from 5mg on August 18th, I was fine for about a week but around 26th August it's If I'm going into a bit of a flare. I'm not due to see my rheumatologist until October, but he wanted me to reduce to 4mg before I saw him next. His plan is usually 1mg per month, but I like to stay on a dose for at least 8 weeks for my body to adjust to it! 

Andrea xx

His plan may be 1mg a month but at these low doses it is a large percentage drop and far too much for many people - I'd say the majority from what I have seen. Top US experts said some years ago that any reduction should not be more than 10% of the current dose. 1mg is fine above 10mg/day. Now it is more than 20%.

And anyway - you are never reducing relentlessly to zero in PMR, you are looking for the lowest dose that manages your symptoms as well as the starting dose did. I can't remember how long you've had PMR but round about 5mg would be a common place to find you have more inflammation than the pred covers. If the underlying cause of PMR is still active - you will need pred, and it sounds possible you have found your dose. Certainly for the present.

There is the added complication that your adrenal glands also have to start producing cortisol now you are well below 7mg - and one top UK PMR expert likes to keep his patients at 5mg for up to 9 months to let their body catch up. It seems to make the rest of the reduction easier.

Yes I felt at 5mg I could have run a marathon, plus my ESR and CRP were normal for me. I was put on methotrexate in January to get me off the steroid quicker, but to be honest Eileen I've only reduced 2mg in that time plus I've been taken off it twice in that time anyway because my liver enzymes have been raised!!! So I think I'll stick to Pred and let PMR take its course!!!! I've had PMR now for 20 months!! Early days I guess Eileen!!

Andrea xx

So what i am hearing here is that we will never get better.  So beyond depressing and depressed. 

Hi Karen,

Do not despair. It takes time, but we do get better!!!

Remember the Tortoise and the Hare!

Paula

This is how I am with it Karen!!,,, my life is totally unrecognisable from 2 years ago!!,, plus I'm 2 Stone heavier and feel im unrecognisable too, very very depressing indeed! Best wishes Andrea xx

Then maybe you need hearing aids!!!!!! ;-)

More than 75% of PMR/GCA patients get off pred in up to 6 years - but not all take 6 years by any means. And it is possible to live well with PMR. And GCA if it comes to that.

I've had PMR for 12 years with - as far as I know - no remissions, I've been on pred for 7 years, it wasn't diagnosed for 5 years. But now I feel well, I have a pretty good life and we travel without problems. I don't ski any more - and that was the reason we moved here - but there are other compensations and this summer I have been to a rheumatology conference as a patient rep, spent 2 weeks in Canada on hoilday, a week in the US on a cruise up to Alaska and a week at another conference in Chicago with my husband. We came home and a week or two later headed off to the UK for family visits for 4 weeks. I'm tired but not deathly so. I've met several PMR friends who I got to know on the forums.

If you have to have an autoimmune disorder then PMR is the one to have. It may be a pain in the butt but it doesn't kill and does mostly go into remission eventually.

I put on weight - and lost it all again with a bit of application - I cut carbs almost totally and lost 36 lbs. I eat no processed carbs and no fruit or root veg. But I eat loads of veg. If I am away from home like this summer it is less easy and I do put on weight - but it goes again if I try hard. The moon face has gone, and the midriff bulge and buffalo hump. I'm not the only one. 

My granddaughter is also on high dose pred for asthma - the other day she said "Embrace the face". If a 16 year old who was a UK size 8 before pred and a size 16 after being in resus several times can cope - so can we.

It is all a matter of attitude. You have to accept your new normal and not fight it. Devote what energy you have to living - leave out the unnecessary and then it isn't so bad. My life isn't what we'd intended for retirement - but it isn't bad. 

By my standards early days indeed! 

I don't know why rheumies believe that MTX will "get you off pred quicker". It doesn't. It may help you manage on a lower dose - but if you have got to 5mg on your own I really think it is pointless putting the patient on MTX. It doesn't replace the pred and it comes with side effects of its own as you've found.

I was down to 5mg for the best part of 2 years and then had a flare which meant going back to 15mg. I felt well on 5mg - I feel well on the 10mg I'm on now. I'm not prepared to compromise and put up with some pain just to be at a lower dose - it's pointless because you run the risk of letting in a flare.

Thank you always for your words of encouragement Eileen, you really do help me see this condition for what it is, thank you again! Andrea xx

Why do you think you will never get better? It took me 3 1/2 years to get off pred and I have been free from pred for almost 8 years. I stayed one year on 5 mg and then tapered 0.5 mg at a time doing it very slowly. Slow tapering is very important. Good luck!

so happy  to hear.   I am at 8 and nervous to go down.   Should  I do 7 1/2 and for how long?  Been on 8 for 2 weeks.  Have not been feeling great. very achy. My right leg seems to be very sore. Any advice.  thx

If you are achy you should go back to where you were not achy and if I were you I would stay 1 or 2 months. Is your doctor pushing you to taper at too short intervals?

If you aren't feeling great either, at the very least, stay where you are until you feel better of go back to the last dose you felt well at - you should never continue to reduce when you feel unwell, whether it is a cold or the PMR the reduction won't succeed. Two weeks is also not really long enought oknow it is still enough - if the unwellness increases definitely go back to where you were. Wait a month or two and then try again - and I'm assuming you are only trying to do 1/2mg at a time. Do you use the dead slow approach?

https://patient.info/forums/discuss/reducing-pred-dead-slow-and-nearly-stop-method-531439

And if you have localised pain on just one side - consider it isn't the PMR but one of the add-ons: bursitis, myofascial pain syndrome causing sciatic or something of that sort. 

Mine too Andrea... it's taking some time to adjust to the 'new me'... and I don't like it one bit.

Hi Karen, when you say achy, do you mean when you are on your Preds, like just taken them or due to. Or do you mean achy all the time.? I find being on 35mg I get achy and pain within 8 hours of thaking them, then hve to wait for my next time slot> I'm not really sure about it all, had PMR AND GCA sice April, I think coming down 5mg in 4 weeks was to fast, but my Dr wants me to keep going.  

If anyone else has advice would be great : 

Would that also caurse chronic lower back pain Eileen? I have had that since being put up to 40mg Preds 6 weeks ago, now down to 35 and my back is still bad, can't stand more than 15 mins or walk, have to sit 5 minutes, then can move upright again : Seems to be in my Gluts area both sides. Tryed Bowen, but she said while on the Preds it may take longer. Now going for accupunture and massage again, I just feel I can't keep going like this .... everything else is ok, the PMR AND GCA seem ok on the Preds, but the back is chronic, and advice would be appreciated :

You shouldn't be having much in the way of PMR-type pain while you are on such a high dose - some people are never totally pain-free but at that sort of dose (which is rarely used for PMR) most people would be pretty good. High dose pred can cause joint pain just to confuse the issue though.

However, what you describe doesn't sound like PMR problems, it sounds like one of what I call the add-ons. Myofascial pain syndrome (MPS) and piriformis syndrome can both lead to irritation/trapping of the sciatic nerve by spasmed muscles and either sciatic pain or referred pain in the areas supplied by the nerve. Usually they would respond a bit to such a high dose but not always and it may be simply coincidence that it happened when it did.

Are you perservering with the Bowen? Did it make any difference at all, even briefly? Some people have found it takes more than the 3 sessions to get a full result. Ask your massage therapist whether you have very hard back muscles. Be careful with massage or at least, be prepared for an increase in symptoms for a while. MPS is due to inflammation of the fascia, the transparent skin covering large muscles (think of a chicken or joint of meat) and it can lead to knots in the large muscles which are called trigger points, formed on either side of the spine in the shoulder muscles, about rib level and in the lower back. Massage can be used to manually mobilise these areas but that releases the inflammatory substances that causes them - the same as PMR but they are all through the system so releasing the trapped ones appears to cause a flare.

 

Thank you so much for all the information, it sounds like what I may have. I will try the Bowen again, it did help a little. Yes I do have very hard muscles over those area's she was surprised just how hard and did a hard massage, but that was about 2 months ago, and it was painful. I will go back and try the Bowen, I have until the 19 Oct until my breast operation, so I would like it fixed before then, so as much as can be to walk around. I'm not sure if my Dr will leave me on the 35mg Preds now, the last 2 days I have had sore eyes ands jaw aches again...   so she may put me back up to 40 if she things it's GCA again.  It really is a whole new life change we have to accept and move forward with, I have only had it since April this year, so I am still learning. Many thanks again for great information.

I was also treated by the pain clinic at my local hospital - the pain specialist is an anaesthetist and used local steroid injections into the trigger points and a technique called needling all over my back as well. Depending in where you are you may find non-medical specialists who offer it too - some physio practices do. It's very painful for a few seconds but the longer term result is very good usually.

I 've received a different version of the needling Eileen describes.  In my case it was what's called "dry needling" where needles similar to acupuncture needles are inserted into the muscles in order to "reset" the electrical signals which are causing the very tight muscles.  Sometimes it felt painful, like a needle going in, which of course it is.  Other times there would be a weird sensation like a finger being pressed into the flesh - presume that's when the electircal signal was indeed being reset.  Had this treatment several times over a couple of months.  My physiotherapist said when we started the muscles in my back were like bricks, but now I have normal tone.  And there is really no way I could have known this was happening.  I was told that in some cases the muscles can become so tight they cause fractures in vulnerable vertabrae!

My back is/has been chronic as well Dea, I could hardly walk - had to lean on a trolly or the grandbaby's pram when doing the shopping. I believe it is excacerbated by the extra weight I'm carrying now but blame PMR for the initial pain and stiffness. I also have bursitis in both hips - I walk like an old woman and I'm on 53 (as of yesterday!)

Happy Birthday :  I am the same and it is a worry, I have put on a lot of weight over the last 5 months, and it's not easy to move on 35mg Preds. I hope to start going down more soon, and hope it will help. Whole new lifestyle change for us : All we can do is think positive for our future: